Index
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Pretest Questions
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Pretest Answers
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Timing
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Positive Option
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trust
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Late Referrals
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Finances
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Losing Your Patient to Hospice
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Overcoming Barriers
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One of my more memorable end-of-life patients was a former Madam who I cared for during my residency training. She presented in the emergency room with a large fungating breast mass. I couldn’t believe how long this problem must have existed. In my zeal, I cajoled her to visit a surgeon and an oncologist; given her advanced disease, she probably made the best decision to let nature take its course.
She was one of my first encounters with death up close, hospice, and friends who treat a patient like family. During her final months, I made house calls on a regular basis. Her home was in a faded part of town, but there still glimmered glimpses of elegance: wrought iron on the front facade, an ornate grandfather clock, and elaborate settees and books. I imagined how the home must have looked in its heyday when “gentlemen” called on the girls within. We never discussed the details of her former occupation much – most of our discussions focused on her cats.
She had a house full of felines of all types. They would slink and scatter at my approach. Toward the end, it was sad to see them run about lacking care. They were her deepest worry. It got to the point that only the staunchest hospice volunteers would brave the neighborhood and the growing stench of her home.
Her neighbors were wonderful, looking in regularly and making sure she had adequate food and assistance. I don’t know if they hoped for financial largesse or were simply good Samaritans.
Her passing came the day I was loading a U-Haul® at the end of my internship. I didn’t hesitate to make my excuses to my friends helping with the packing and go pay one more visit to the cats and this former lady of the night. To this day, my mind’s eye drifts back to that lovely old home past its prime and its proud owner as she lay there, still, and the cats mourning the passing of their lifelong friend.
Moving to the present, I must confess that I wasn’t looking forward to editing this monograph. Not only was the manuscript long, but I was worried it would be either another empty exhortation to care better for the dying or a strictly biomedical litany of symptoms and drugs. My misgivings were misplaced.
Dr Farber and his colleagues from Washington have been able to blend important medical information with enchanting cases and profound insights into care at the end of life. At times I was tearful, other times amazed, but always engaged. I know that many of you would rather read about the latest advances in heart failure management or review antibiotic therapy, but I implore you to thoughtfully consider this important topic.
And, as Elbert Hubbard said, “Don’t take life too seriously, you will never get out of it alive anyway.”
Jeffrey L. Susman, MD, Monograph Medical Editor
Professor of Family Medicine
Associate Dean for Faculty Development
University of Cincinnati College of Medicine
Table 1
Table 2
Table 3.
Table 4
Table 5.
Table 6
Table 7.
Table 8
After studying this monograph, the reader should be able to:
1. List demographic factors that make end-of-life care an increasingly important issue for patients, families, medical professionals, and communities.
2. Initiate a process to achieve a common understanding among the patient, family, and physician of a life-threatening diagnosis and its prognosis.
3. Effectively deliver “bad news” relating to the diagnosis of a life-threatening illness to patients and families.
4. Distinguish between patient-centered and provider-centered approaches to negotiating treatment goals.
5. Discuss the caregiving roles and how to mobilize a caregiving team to support patients, families, and professional caregivers.
6. Understand the challenges family physicians face when working as a member of a hospice team.
7. Compare the roles of consultant, collaborator, and guide as practiced by family physicians during end-of-life care.
Instructions
The Mission of Home Study Self-Assessment® is to provide a periodic curriculum reflecting the core clinical content of family medicine. The program is designed so that family physicians may use it to enhance and maintain competence, to meet continuing medical education requirements, and to assist in preparing for American Board of Family Practice recertification examinations.
This edition is part of the fourth six-year curriculum cycle of the AAFP Home Study Self-Assessment® program that began with #217.
AAFP Home Study Self-Assessment® is a peer-reviewed continuing medical education (CME) program designed by family physicians to provide family physicians with high-quality, cost-effective CME. Each monthly monograph is part of a six-year curriculum of topics established by the Home Study Self-Assessment Editorial Board. After completion of each monthly Home Study monograph, the subscriber will have reviewed a component of a systematic comprehensive curriculum in the specialty of family practice. The subscriber should be able to integrate this knowledge into patient care.
Each Home Study Self-Assessment monograph is developed specifically for this program and deals with relevant medical issues from a family practice perspective. Each monograph focuses on information that you need to know about the topic and techniques and skills that are unique to the continuity of care that characterizes family practice. References are provided for further study.
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See About CME Credit.
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The AAFP is proud to bring you this comprehensive CME opportunity and is pleased that you have included Home Study Self-Assessment in your CME activities. We welcome your comments or suggestions concerning the program. Comments or suggestions can be written on the evaluation forms that are sent with every edition; you may call Home Study Self-Assessment at 800-274-2237, ext. 5298; or send e-mail to hssa@aafp.org or through the AAFP Web site at http://www.aafp.org/hssa
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Case 1.
Mr. Tom Williams. Tom Williams is a 67-year-old, heavy-smoking, hard-working, loading dock supervisor who occasionally visits your office. Several months ago, complaining of chest pain and increased coughing, he came to see you. A chest x-ray result was highly suspicious for lung cancer, and you referred him to an oncologist.
“I hear what you’re telling me, Doc,” Tom said. “You’re telling me I’m a dead man. Well, you just give me the name of that cancer doc, and we’ll see who beats who here.” Tom’s family supported his attitude.
After that visit, you did not hear from him for several months. Consultation notes crossed your desk intermittently, indicating that an oncologist, a radiotherapist, and a pulmonologist saw Mr. Williams. Despite aggressive chemotherapy and radiation treatments, the reports don’t look good.
One evening when you are at home resting after a long and tiring day, Tom’s wife, Betty, calls and says, “Doctor, he’s really bad. He’s got lots of pain. None of the other doctors are telling us anything. Can you please see him? Doctor, he’s in such bad pain, I don’t think I can move him. Not by myself, that’s for sure. Is there any way you can come here? Please, Tom needs some help.”
Case 2.
Ms. Wendy Moore. Wendy Moore is a 37-year-old black woman who has cervical cancer. Ms. Moore has 2 daughters and lives with her boyfriend, Oscar. She was referred to you by a local surgeon, Dr. Gordon Martin, with whom you work frequently. Wendy’s cancer was previously treated with surgery, radiation, and chemotherapy. Recently, Dr. Martin performed an emergency colostomy on Wendy for a bowel obstruction secondary to advanced cervical cancer.
Dr. Martin was particularly concerned about Wendy’s complaints of pain despite “large doses” of a narcotic combination analgesic. You agreed to see Wendy, and your staff arranged a visit for her at your office.
When you enter the examination room, you meet Wendy and Oscar. Wendy is sitting quietly and appears calm and collected. She exhibits no outward signs of pain. She gazes at you intently and says hello in a soft, polite, and controlled voice. After introducing yourself, you ask what her concerns are. Without hesitation, she replies that she is suffering from extreme pain and wonders if you can do anything to control it.
Case 3.
Mrs. Gregory. Mrs. Gregory is a 75-year-old woman who presented with upper abdominal pain and weight loss. You ordered an ultrasound examination that revealed a single-mass lesion that was highly suspicious for primary liver cancer.
Mrs. Gregory’s husband died years ago, and she lives alone in their home, relying on her 3 daughters to shop and get around. She and her youngest daughter, Laura, visited your office to discuss the test results. Mrs. Gregory cut the discussions short, saying, “I don’t believe anything is wrong, and I don’t want to hear any bad news.” She refused further discussion. “Some herbal remedies will help ease my indigestion.” She left the office with that attitude, although she agreed to try the pain pills you prescribed.
Two days later, Laura and Melody, Mrs. Gregory’s oldest daughter, call; Melody is irate. After talking with her mother and Laura, she concluded that no one is telling her mother the truth. She says, “My mother deserves to know how serious her illness is and that she is going to die. She needs to be made aware of this, and, since you are her doctor, you need to take the lead role in this.”
Laura disagrees and says she will never talk to Melody again if she pushes their mother. She asks, “Do you really want to put this kind of trip on Mom? Isn’t she better the way she wants to see it?” Melody asks your advice.
Case 4.
Mr. Sen. Mr. Sen is a 45-year-old Buddhist monk who is dying. One of your patients, who is a member of his Cambodian temple, asked if you would provide care for Mr. Sen. Although you have never met Mr. Sen, you agree to look into his case because his regular physician is retiring from practice.
First, you call a hospice nurse, who tells you that Mr. Sen has disseminated pelvic sarcoma secondary to complications from leishmaniasis, a parasitic infection he acquired in his native country. Then you go to visit Mr. Sen, who is expecting you.
Mr. Sen speaks very little English. He expresses that he is having severe lower abdominal pain. Despite the pain, he refuses to take pain pills, even though they make him feel better. He says, “Pill make me sick.”
After you return, the hospice nurse calls and asks what should be done next for Mr. Sen.
Case 5.
Mrs. Maria Sando. Maria Sando is a 69-year-old woman with end-stage ischemic cardiomyopathy. You have cared for her for more than 20 years. In fact, she is one of your first patients, and you enjoy a good relationship with her.
During the past year she has become progressively ill, and it is now very difficult to control her recurrent bouts of congestive heart failure. Her cardiologist recently called and asked you to become more involved in her care because there was not much more he could add to her medical regimen.
You have not seen Maria for several weeks, yet the next morning you stop by her apartment to visit her. Tony, her son, answers the door. He is obviously fatigued. Tony says his mother is sleeping, and he doesn’t want to wake her because for the past week she has had little sleep. Each of the past 5 nights, they went to the emergency room because she was severely short of breath.
Tony is very upset. He wonders what is wrong with his mother and why the heart doctor or emergency room doctors haven’t put her in the hospital. After talking with him, you agree that Tony will bring his mother to your office when she awakens.
These 5 cases illustrate the diversity and challenges family physicians face when caring for patients and families at the end of a patient’s life. There are no straightforward answers to these challenges. While diagnostic and therapeutic interventions are important, they are not sufficient to answer all of the concerns of patients and their families. Communication with patients and family exploring their experiences of terminal illness is vital. What is said, what is not said, how it is said, body language, e.g., the turn of a head or a tear, and even intuition must be used to glean the meaning of events, clarify values, and set goals.
Care must be personalized to reflect the values of the patient and family. Care occurs within the special relationships that develop between the patient, family, and physician during the end of life. Providing such care requires physicians to function at their highest professional level, which is often described as healing [2]
How well are medical professionals doing in their healing role at the end of life? The evidence is sketchy but clearly indicates there is much room for improvement. The best documented review is the Institute of Medicine report, Approaching Death. [3] Key deficiencies noted in the report include:
1. Too many patients needlessly suffer during the end of life from errors of omission (when caregivers fail to provide palliative and supportive care known to be effective) and commission (when caregivers do what is known to be ineffective and even harmful).
Studies have repeatedly indicated that a significant proportion of dying patients experience serious pain despite effective options for relieving most pain.
While patients fear dying in an overtreated state, they also fear the opposite, medical abandonment. Patients and those close to them may suffer physically and emotionally when physicians or nurses conclude that a patient is dying and withdraw care, e.g., passing by the hospital room on rounds, failing to follow up on the patient at home, and disregarding the patient’s pain and other symptoms.
2. Legal, organizational, and economic factors can inhibit the delivery of reliably excellent care during the end of life.
3. Education and training programs of physicians and other health care professionals fail to give them the knowledge, skills, and attitudes needed to provide good care for the patient and family.
4. Too little is known about how people die, how they want to die, and how different types of physical, emotional, and spiritual care might better serve dying patients and those close to them.
5. It seems that most people in the United States have not learned how to talk realistically and comfortably about the end of life, nor how to value the end of life experienced by most patients.
This monograph will discuss core issues to be considered when providing quality medical care at the end of life. These include specific medical skills and attitudes, values, and goals. Values are at the center of the opportunities that exist during this unique and often spiritual period of a person’s life. To quote an aphorism: “The dying process can be as meaningful for people as the birthing process.”
The demographics of death in the United States have changed markedly during the past century. In 1900, the average life expectancy was 50 years, the death rate was 1,720 per 100,000 people, and the leading causes of death were infectious diseases (influenza, tuberculosis, and diphtheria), which disproportionately affected children. Most people died at home and were cared for by their family during their end of life.
By 1995, the average life expectancy was more than 75 years, the death rate had declined to 585 per 100,000 people, and the leading causes of death were chronic, degenerative diseases (heart disease, cancer, and stroke), which disproportionately affected the elderly. Most people now die in an institution: 60% to 80% of patients die in a hospital or nursing home, depending on the part of the country in which they live.
The decrease in the death rate among children and lengthening life expectancies among adults have led to an increasing percentage of the population being older. In 1994, 13% of the US population was aged 65 years or older (1 of 8). In 2030, when the entire “baby boom” generation has entered old age, 20% of the US population will be aged 65 or older (1 of 5).[3]
Society will continue to face the challenge of caring for more citizens with incurable, chronic, degenerative diseases. Of the more than 2.3 million citizens who died in 1995, the National Hospice Organization estimated that 17% (390,000) received hospice services, with a median period of services of 36 days.[3]
Achieving a common understanding among the patient, family, and physician of the medical diagnosis and prognosis is part of the consensus process.[4] A consensus reduces the chance of misunderstanding and disagreements. When discussing serious illness, each participant develops a unique perspective. The patient, family, and physician each possess personal attitudes and values by which they interpret and provide meaning to end-of-life events.
Rarely will all parties hold harmonious views. Dissonance is frequent, particularly at the beginning of discussions. Even when the patient, family, and physician reach consensus on the diagnosis and prognosis, others may try to alter it and the discussions. Co-workers, friends, relatives, and children may tell the patient stories of miraculous healing or angry accounts of failure. Subspecialists may offer treatments that possess the hope of a cure, undermining discussions regarding more palliative approaches to incurable illness. Negotiating a consensus on the diagnosis and prognosis is an ever-evolving and demanding process.[2], [3], [5], [6], [7], [8]
There are 3 significant issues to consider when negotiating a consensus on the diagnosis and prognosis. The first significant issue is uncertainty. No one knows what will happen to a particular individual no matter how serious the disease.
In Case 1, Tom Williams was diagnosed with adenocarcinoma of the lung. Statistically, his prognosis is grim; no matter what treatment is initiated, more than 95% of patients with this diagnosis will die within a year. Yet no one can tell Mr. Williams and his family exactly what will happen in his specific case. Questions such as when he will die, how he will die, or what complications will arise cannot be answered accurately. In fact, no one can accurately state when he will die. There is always the miracle case, the one in a million who gets better for reasons that science cannot explain.
Statistics describe group experiences; they are misapplied when used to predict individual experiences. The use of probabilistic or statistical language confuses patients; they often misunderstand statistics.
Patients and families want to know what is going to happen to them. Physicians must be honest with patients. What statistics mean and that they cannot predict what will happen in individual cases must be made clear to patients, and, as you work together, their outcome will become clearer. As their outcome unfolds, share it with them honestly, despite the distress it may cause, so they can make decisions that are appropriate for their unique personal values and goals.
The second significant issue is internal barriers; each participant in the consensus discussion has a set of internal barriers to understanding and accepting a life-threatening medical diagnosis and prognosis. It is essential that physicians understand these internal barriers so they can effectively negotiate a consensus. Exploring each person’s understanding of the illness and its meaning will uncover the most important internal barriers. This requires asking open-ended questions and listening to their answers, something that, according to published studies,[9] many physicians find difficult to do.
Harder to uncover are the physician’s own internal barriers. For example, when caring for a patient with long-term, serious heart disease, when do physicians recognize that continued aggressive medical treatment should be replaced by palliative care? Is it after the first hospital admission or the third intensive care unit (ICU) stay within 2 months? Has the family physician really communicated to the cardiologist that his patient does not want to go to the ICU again? When a physician tells a patient the diagnosis is late-stage colon cancer, will she unconsciously withdraw from the patient and push the consultants to provide aggressive curative care?
Identifying the internal barriers of each participant and coming to a consensus on the diagnosis and prognosis is an essential task.[2], [6], [7]
The third significant issue is patient acceptance of an evolving process. At first, the patient and family may deny that the illness is life-threatening. The patient must accept that the diagnosis and prognosis are moving targets. Changes may occur, such as sudden complications or new symptoms.
In the case of Mr. Williams, he and his family initially felt that he could beat his lung cancer. The physician also felt he could beat the cancer and referred him to an oncologist. As events unfold, there will be many times to revisit Mr. Williams’ denial that his cancer is a terminal illness.
Another patient and family may begin by accepting that their cancer is incurable and opt for palliative treatment and hospice care, yet decide to admit the patient to an ICU and aggressively treat a case of pneumonia because the patient wants to be alive until her daughter gets married in a few weeks.
Acceptance of a terminal disease is an ongoing, dynamic process that stops only at the moment of death.
Physicians often initiate end-of-life discussions (reaching consensus) when they deliver the diagnosis to the patient and family. All family physicians face situations where they must deliver a diagnosis of cancer or explain to a patient and family that chronic lung disease or refractory heart disease is not going to improve. Being able to effectively communicate with patients and families when dealing with frightening and life-threatening information is a challenging task. Research demonstrates that patients remember little but the diagnosis when given bad news.[6] This same research revealed effective methods for delivering bad news (Table 1).
Case 1, Continued. You arrive at Mr. Williams’ home, and Betty greets you. When you walk into the living room, you can hear Tom Williams groaning in pain and breathing loudly and rapidly. His sons, Tom Jr. and Tim, sit anxiously in the living room, and his daughter, Tammy, is in the bedroom with her father. All are very concerned about their father dying and the pain he is experiencing.
It is obvious to you that Tom is dying and that he is extremely uncomfortable from his pain. He is hard to arouse but, when alert, rates the pain in his ribs as a 10 on a 10-point scale. He is also very short of breath. Examination reveals rales and rhonchi throughout his lung fields and significant point tenderness at multiple ribs and vertebral sites. His respirations are shallow and rapid.
Take a moment to consider what you should do in this situation. How should you proceed? What should you say to Tom and the family? How do you say it? What will you ask them? Write down your thoughts before proceeding.
You decide to gather the family in the bedroom to talk things over. Using questions from Table 1, learning the patient’s story, you gather understanding of how Tom and his family view his disease.
Your first question is, “What do you think is wrong?” Tom Jr., the oldest son, who just arrived from out of town, speaks first. He is angry and upset. He says something needs to be done to make his father better. “He should be in the hospital where he can get fixed up. He’s just lying here going through all this. All these pills, all those doctors don’t do anything.”
You ask Betty what she thinks, and she begins to cry. She admits that Tom told her he thinks he is dying. “He said he doesn’t want any more treatments, no more operations, no more radiation. He just wants to die at home with his family. He doesn’t want to die in one of those hospital rooms, but at home where he can be comfortable. But he’s in such pain. I told him not to stop fighting. You know him, Doctor, he’s always been a fighter. But now… .”
Tim and Tammy, both of whom live in town, have been involved with caregiving since the initial diagnosis and agree with their mother.
Next, you ask them, “What is important to you now? (What is important to you right now? What do you see as your future? What occupies your mind most of the time?)”
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Table 1
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Tom Jr. asks your opinion of his father’s condition, and you tell him that you think his father is critically ill and that no amount of treatment will cure him. It may be possible that something might be done to prolong his life, but nothing will cure him. You follow this statement by asking him what he heard you say. He replies, “You say my dad is going to die, and you are giving up on him.”
You try to assure him and the rest of the family that you will not give up on Tom, but will provide aggressive care to support him as he dies. But, before you can offer care, you need to know what the goals of care are. Tom Jr. is still upset, but more satisfied.
Betty, Tim, and Tammy want to honor Tom Sr.’s request to die at home and ask if his pain and breathing problems can be controlled.
Now, you ask them, “What is the meaning of this experience? (How do you make sense out of what has happened? How do you explain what has happened? Why do you think this illness happened?)”
Betty says she is so afraid of being alone. Her husband is in charge of everything. She doesn’t even drive, and he pays all the bills. What will she do if he dies? The children are angry that he didn’t stop smoking despite all their efforts. But all realize bad things happen, and they have to make the best of it.
At this time, you may ask, “What are your past experiences with serious illness, death, and loss? (Have you experienced the death of someone close to you before? Have you dealt with serious illness before? How have you dealt with serious losses in the past? What was dealing with serious illness/losses like? )”
Tom Jr. describes his memory of his grandfather’s death and how he remembers his grandfather in the nursing home, alone and in pain. He is still angry about it and wants to be sure his father gets better treatment. The rest of the family then talks about their grandfather’s death and how dissatisfied they all are with what happened. Betty regrets never saying goodbye to her father, and the children talk about how uncomfortable he was and how intimidating the nursing home was.
Next, you ask, “What are your social supports? (Who would you define as your family? Who cares what happens to you?)”
Betty says her church group and minister have been tremendously helpful during Tom’s illness and that she couldn’t make it without them. She also talks daily with her sister who lives out-of-state. The children have found support from their families and the next-door neighbors.
After gaining this information, you tell the family you agree with them; Tom is dying, and there is no medical treatment that will cure his illness. If the family’s goals are to keep him at home and comfortable, then there is a lot that can be done for him. They all nod in agreement, including the oldest son, when you ask if they understand what you just told them. You tell them you will contact hospice immediately and will prescribe some morphine to control his pain and shortness of breath. They all agree with this plan. You also suggest they begin to say their goodbyes. You tell them you will call them back in 2 hours to see how the morphine is working and let them know when the hospice team will arrive.
Building a consensus among the patient, family, and physician of the diagnosis and prognosis is an essential early step in the process of living with illness. Even as the consensus is being built, the question arises, “What do we do next?” There are many approaches to dealing with terminal disease. A second consensus, the medical management of the patient, can be more difficult than getting everyone to understand the disease process.[4]
What direction should management take when dealing with diseases such as advanced cancer or end-stage heart disease for which there is no curative treatment other than transplantation? There are no easy or absolute answers.
The correct path is one that most closely reflects the attitudes, values, and goals of the patient and family. Treatment that requires people to adapt their personal attitudes, values, and goals to those of the treatment is less desirable.
A few patients and families know exactly what they want and will make clear statements such as:
“Doctor, I don’t want to go through another ICU stay for my heart failure. Next time things go bad, can I just stay home and be kept comfortable?”
“Doctor, whatever you do, don’t give up on me. I want you to do everything possible to keep me alive. I would go back to the ICU in a minute if it wouldhelp.
Unfortunately, most patients and families facing the end of life are overwhelmed by the situation on all levels: mind, body, and spirit. As their family physician, you have an important opportunity to help chart a management path that will best help everyone by uniting medical technology with their values.
Case 1, Continued. A review of Mr. Williams’ initial management shows the following:
1. His chest x-ray showed a small, solitary, peripheral nodule that was potentially resectable.
2. A computed tomography (CT) scan of his chest showed chronic obstructive pulmonary disease changes and the same mass without evidence of tumor spread.
3. Bronchoscopic washings were positive for adenocarcinoma.
4. Pulmonary function tests indicated that Mr. Williams could withstand a segmental resection. The surgery was performed at a nearby hospital where you do not have privileges.
5. Postoperative carbon dioxide retention complicated thoracotomy.
6. Mr. Williams required reintubation and an extended hospital stay. During this stay, Mr. Williams and one of the respiratory therapists had a strong interpersonal conflict related to his endotracheal suctioning.
7. Mr. Williams left the hospital 4 kg lighter and somewhat weaker than he was before surgery. Also, he stopped smoking.
8. His postoperative pain was controlled by acetaminophen with codeine.
The review revealed important facts of which you were unaware: Mr. Williams’ postoperative difficulties and how they significantly shaped his attitudes about hospitals, surgery, ventilators, and respiratory therapists. There is also the handicap of not being able to track events in real time because the oncologist and you felt too busy to call each other, and the surgeon did not realize you were the patient’s physician and did not send a copy of the discharge summary.
The sporadic records you received were not enough to keep you abreast of Mr. Williams’ progress. Although you assumed that you would see Mr. Williams in follow-up, no one instructed him to make an appointment with you. Mr. and Mrs. Williams saw no reason to communicate with you because they concluded the oncologist was now their main doctor. Thus, weeks passed without contact before his crisis prompted renewed communication.
Mr. Williams and his family started a care path that seemed clear to them. They were going to get treatment that was going to “beat” the cancer. As treatment progressed, many opportunities were lost that could have led Mr. Williams, his family, and his medical providers toward a destination that met all their needs more effectively.
Let us explore some of the essential steps that could have provided opportunities for the primary care physician to play a more effective role during this time period.
After it was recognized that Mr. Williams likely had cancer, he was referred to an expert in cancer diagnosis, staging, and treatment. Although family physicians and other primary care physicians understand the basics of lung cancer and treatment modalities, they generally rely on oncologists for guidance on prognosis and management. In Mr. Williams’ case, the patient and family physician soon lost track of each other.
For several weeks, the family physician was not participating in Mr. Williams’ care nor following the case closely. Failing to engage the patient actively and early in developing a care plan and remaining engaged may cause the patient to doubt the physician’s commitment and unnecessarily complicate later phases of care.
The quiet weeks of Mr. Williams’ recovery from surgery could have been used for discussion and advance planning about likely future care needs, negotiating a new understanding of roles and responsibilities, and learning about the family’s concerns and priorities. All of these discussions would have strengthened the relationships between the family physician and the Williams family.
What prevents the family physician from being more actively involved with patients like Mr. Williams? Time is a big factor. Office and family obligations often cause nonurgent tasks to be deferred. The family physician may feel that after the referral, patients like Mr. Williams are in good hands, and there is little to add to the treatment phase. Personalities may play a role; some physicians might avoid Mr. Williams because of his prickly personality. There may be feelings of guilt at not having tried hard enough to help Mr. Williams stop smoking or not having diagnosed the cancer earlier. Perhaps the very unpleasantness of the disease makes denial or avoidance the path of least resistance. Some physicians doubt their skills to care for a person with a terminal illness.
All of these barriers are commonplace. They suggest worthwhile themes for reflection when physicians undertake end-of-life care. Acknowledging these practical and emotional challenges allows them to be dealt with constructively as part of the planning for end-of-life care. Denying they exist usually makes the job harder for everyone.
A person’s emotional life experience may be viewed as an intricate, dynamic balance. The present is the fulcrum. On one side is the richness of the remembered past, on the other is the imagined future. Patients who are told they have a terminal illness suddenly lose their imagined future. The resulting disequilibrium is frightening and disorienting. Restoring a sense of balance requires construction of a new future, one that incorporates the disease as a major element.
The physician can speed this development by providing a medical context. The potential role of the physician in providing psychologic, emotional, and spiritual contexts is discussed below in the section, Personal Domain.
The medical context for ideal end-of-life care contains many elements, the relative importance and timing of which differ according to individual circumstances.[10], [11], [12], [13] Typically, the most effective end-of-life management plans address the disease process, the care system, and the patient. One of the most challenging tasks in medicine is exploring with the patient and family what the future may hold.
An invaluable skill for physicians is developing the attitudes, values, and skills necessary to help create a medical context for future care. Ask open-ended questions that allow exploration of the future and be mindfully “present” to the patient and family as they answer. Examples of questions used by some experienced palliative care physicians are listed in Table 2.[11], [13], [14], [15]
The understanding provided by the answers to these questions is the foundation on which the future relationship of the patient, family, and physician will be built. The understanding will guide the kind of medical care the physician provides. Reaching the understanding often involves a mix of approaches involving curative treatments, aggressive comfort measures, and life-prolonging treatments.
The timing and pace of end of life can be predictable or wildly unexpected. Death is certain, but while there is life, there are possibilities. Patient, family, and physician all benefit from remaining flexible and creative concerning end-of-life care
A key to providing physical and emotional comfort to patients and families is superb symptom management. The prospect of physical pain is frightening, and experiencing pain robs patients of the ability to contemplate life’s deeper issues. Patients who suffer any type of physical distress or family members witnessing such distress have little energy or ability to consider the vast realm of personal, family, and community issues they face at the end of life. Patients deserve skilled treatment of pain and other symptoms. If a physician cannot provide this, the patient should be referred to a physician who can.
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| You will die from this, though we can’t be sure when. What do you feel is really important to do in the time left?
Are you concerned about what will come after death? Now that you are at peace with yourself, how do you see your life? You say you will beat this illness. Is there any time, if for only a few moments, when you are not so sure? When you think about getting very sick, what worries you the most? If you become so sick that you could not talk to me directly, who should I contact to help me make decisions about your care? Many patients with this condition tell me they think about the possibility of dying. They have questions about this. How about you? Lots of people want to know abou their illness. Some patients want to know the details and some prefer not to know or to have me talk to a family member. How do you feel about it? From what sources do you draw your strength? What role does spirituality play in your life? Something I discuss with all my patients with cance is hospice. Have you heard of hospice? What do you know about hospice? What is important to you in your life? What would you be doing today if you were well? (what would be necessary to allow you to do that now?) What would you still like to do or accomplish in your life? Whad do you think will happen to you in the next weeks and months? What do you fear most? As you think about your current condition and dying, what are the hardest issues for you? What else do you want me to know about who you are and what you believe in? |
Unfortunately, studies show that physicians are not doing as good a job as possible when treating end-of-life patients. Patients and their families fear unremitting pain. Despite evidence demonstrating that simple oral analgesic regimens can control pain with minimal side effects in 85% to 90% of cancer patients,[16], [17] numerous surveys show this benchmark is not reached in practice.
For the 10% to 15% of patients who fail oral pain treatment regimens, rapid referral for consideration of options such as regional anesthesia, spinal opioids,neurolytic blocks, and ablative neurosurgical procedures will usually bring significant relief.[16], [17]
Thirty percent to 50% of cancer patients needlessly suffer pain.[17], [18], [19], [20] A 1993 survey of 1,400 doctors and nurses in 5 different US hospitals found a common failure to provide adequate pain relief to dying patients.[21] More than 80% of respondents agreed with the statement, “The most common form of narcotic abuse in caring for dying patients is undertreatment of pain.” This statement refers to pain, a well-documented symptom for which there are effective treatments.[22], [23], [24]
Other common symptoms that are less well-studied or recognized may be equally challenging: asthenia, anorexia, cachexia, dyspnea, nausea, constipation, anxiety, depression, and agitation.
Managing symptoms effectively requires an in-depth understanding of pathophysiology and pharmacology as well as patient-specific psychosocial, emotional, and spiritual issues. Using our case presentations, let us explore how to manage some of the most common and challenging symptoms.
Case 2, Continued.
When Wendy visited your office for the first time, you took time before entering the examination room to read the referral letter from the surgeon.
Dear Doctor:
Thank you for agreeing to see Wendy. As we discussed on the phone, she is a 37-year-old woman on whom I performed a diverting colostomy two weeks ago. I am referring her to you for ongoing management of her pain. She had a history of good health until March 1997. A routine gynecologic examination, including a Pap smear, revealed cervical cancer. A radical hysterectomy was performed that included negative lymph mode sampling. She recovered uneventfully, but in February 1998, a CT examination found a recurrence in the pelvis. a second surgery was performed fo rdebulking and tissue confirmation followed by chemotherapy and pelvic radiation. She tolerated this treatment well and was agin symptom-free for 6 months when she developed a pappable recurrence.
Unfortunately, the tumor has failed to respond to several combinations of chemotherapy. Two weeks ago, symptoms consistent with increasing large bowel obstruction necessitated the colostomy. She has recovered well from the surgery, except for a small fistula. She continues to complain of significant pain despite large doses of Percocet.
Barbara feels that Wendy’s abdomen will not tolerate any more radiation. Frank is willing to try a phase I protocol, but doesn’t know of any proven regimen worth trying.
I appreciate your willingness to assume her care and help manage her pain. If there is any other way I can assist you, please call me.
Sincerely,
Gordon Martin, MD
cc: Frank Black, MD, Oncology
Barbara Turner, MD, Radiation Oncology
Take time to answer the following questions:
1. How would you assess Wendy’s pain?
2. What would you ask her to assess her pain?
3. What would you examine to assess her pain?
A thorough clinical assessment of pain is key to developing a plan to treat her pain. The essential elements of the pain assessment should include:
I. History.
A. Location.
B. Quality.
C. Intensity.
D. Temporal pattern.
E. What makes the pain better or worse?
F. How does the pain affect your social and physical function?
G. What types of treatments have you tried to relieve your pain?
II. Physical Examination.
Based on the history, a thorough physical examination should be conducted to further assess pain. At a minimum, this should include an examination of the sites of pain and looking for common underlying physical abnormalities and pain referral patterns and a neurologic examination if there is any indication of nerve involvement. If spinal cord compression is suspected, motor and sensory function of limbs, rectal sphincter tone, and urinary sphincter function should be carefully assessed.[17]
Ask about the location of the patient’s pain. Knowing the location of the pain can give valuable clues to its etiology. It is also important to follow the location of the pain over time. Most cancer patients have pain at more than one site. Ask the patient to indicate the location of the pain on his or her body or on a body diagram and whether it radiates (Figure 1).
Ask about the quality of the patient’s pain. Failure to assess pain is a critical factor leading to undertreatment. Assessment involves both the clinician and the patient. Patient self-reporting is the mainstay of pain assessment. The clinician should help the patient describe the pain. Listen to the patient’s words about the quality of the pain; these provide valuable clues to its etiology. Typical questions that can help a patient describe the pain include:
1. What does your pain feel like?
2. What words would you use to describe your pain?
Ask about the intensity of the patient’s pain using verbal or visual scales. Knowing the intensity or severity of the patient’s pain is crucial to good pain control. The only way to know the severity of the pain is to ask the patient and believe the response. Patients with severe, chronic pain may behave normally while still experiencing severe pain. Simple pain survey methods, such as verbally reported number scales (“On a scale of 0 to 10, with 0 being no pain and 10 being the worst pain imaginable, tell me the score of your pain.”), visual analogue scales where patients mark their level of pain on a graph, or pain-affect facial scales when communication is difficult, are available to document the patient’s pain. All of these scales have been found to accurately report a patient’s pain intensity and are valuable measures to effective pain control. Also, knowing the pain intensity helps gauge the aggressiveness of pain therapies. The goal is to provide pain relief to either what the patient desires or to a level of 3 or below on a pain scale.[16], [17], [20]
Ask about temporal patterns of pain. Knowing when the pain started is important in pinpointing possible associated causes (surgery, chemotherapy, radiation, etc.) and gauging the natural progression of the pain process. Additionally, knowing how the pain changes during the day can also provide valuable clues to the cause and treatment of pain. Typical questions that help clarify temporal pattern include:[17]
1. When did your pain start?
2. How often does it occur?
3. Has its intensity changed over time?
What makes the pain better or worse? Knowing this information is important both in determining the cause of the patient’s pain and in planning an appropriate treatment plan.[17]
Ask how the pain affects the patient’s physical and social functioning. The initial assessment should elicit information about changes in activities of daily living, mobility, appetite, sexual function, and mood. Understanding how the pain affects the patient is crucial to designing a treatment plan. It also helps screen for emotional problems, including anxiety and depression.[16], [17]
A careful drug history is an important step. Ask about what types of pain treatments have been tried. Knowing precisely what treatments the patient is using now and has used in the past is essential in developing a treatment plan. What is written in the chart may be different from what the patient is actually doing. Determining what has worked best and what problems have occurred will save a lot of effort.
Additionally, nonpharmacologic methods should also be explored. Relaxation, physical therapy, acupuncture, positive imaging, therapeutic touch, massage, cold and heat treatments, prayer, music, and poetry are some of the alternatives that patients find helpful.
Questions that help identify previous pain treatments include:
1. What medications have you tried to relieve your pain?
2. What other types of treatments have you tried to relieve your pain?
3. What were they and were they effective?[16] [17]
Case 2, Continued. Using the pain assessment outline, a thorough pain assessment of Ms. Moore reveals the following:
I. History findings.
A. Location. Wendy’s pain is located in the left lower quadrant of the abdomen and in the sacral/left buttock region.
B. Quality. Wendy’s abdominal pain is aching and dull. Her sacral/left buttock pain is aching with a pressure sensation.
C. Intensity. Wendy rates her abdominal pain as 10/10 all the time and her sacral/left buttock pain as 5 to 6/10 during the day and 10/10 at night when trying to sleep.
D. Temporal pattern. Wendy’s abdominal pain is constant, with minor variation in intensity through the day. Her sacral/left buttock pain is constant with increased intensity during activity, especially when the area is bearing weight or pressure, and when trying to sleep at night.
E. What makes the pain better or worse? Wendy’s abdominal pain feels better when she listens to music, treats the site with heat, or, to a modest degree, when she takes Percocet. The abdominal pain feels worse during movement and when straining to lift something. Her sacral/left buttock pain feels better when she rubs or applies ice to the area and, to a modest degree, when she takes ibuprofen. It feels worse when there is pressure on the area or it is bearing weight.
F. Physical and social functioning. Wendy reports that her pain saps her energy and makes her feel tired and depressed. She says that she uses all of her emotional and physical resources to endure, living from one minute of terrible pain to the next.
G. Types of treatments tried.
1. Medications:
a. Fentanyl transdermal system pain patch (Duragesic-25) changed every 3 days.
b. Percocet (5 mg oxycodone/325 mg acetaminophen). Dosage is 1 to 2 tablets every 4 hours as necessary for pain, but she is actually taking 3 pills every 4 hours.
c. Over-the-counter ibuprofen, 200 mg with meals 4 times per day.
2. Nonpharmacologic treatments:
a. Ice to sacral area.
b. Heat to abdomen.
c. Prayer.
d. Crying when overwhelmed.
II. Physical examination findings.
A. Pulmonary: normal.
B. Cardiovascular: normal.
C. Abdominal: observable radiation changes to the skin in the lower abdomen; active bowel tones; the colostomy site is healing, and the colostomy is functioning well; multiple scars in pelvic area; healing midline scar from xyphoid to umbilicus with small fistula just above umbilicus; on palpation, firm mass in left lower quadrant to midline that is fixed and causes discomfort when pressure is applied.
D. Pelvic: patient refuses examination.
E. Rectal: good sphincter tone, and a small amount of soft brown stool in rectum is observed.
F. Musculoskeletal: Wendy experiences pain on palpation over sacrum, left ischial tuberosity; area is otherwise normal.
G. Neurologic: The neurologic examination is normal, without any deficits in sensation, strength, or reflexes in the lower extremities.
The pain assessment is now complete, and Wendy is gratified by your thoroughness. She still is doubtful that you can deliver on assurances that her pain can be relieved because she has lived for several months with uncontrolled 10/10 pain. She shares with you that the other doctors seemed to listen to her pain complaints, but they didn’t seem to hear her. You are gratified by the hope you have given her, but now need to develop a plan to adequately treat her pain.
An understanding of the pathophysiology of pain can guide physicians to appropriate treatment interventions. Based on the pain assessment, what are the likely causes of Wendy’s pain?
Thirty years of research has led to a better understanding of the physiologic causes of pain, particularly cancer pain. Understanding these pathophysiologicmechanisms has led to more precise and effective pain therapies. This section introduces a framework for categorizing pain syndromes and the basic underlying mechanisms that create the pain stimulus.
The definition of pain itself remains elusive; simply put, pain is an unpleasant stimulus defined by the patient. Thus, pain is whatever the patient says it is. A more scientific definition of pain is provided by the International Association for the Study of Pain: “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.”[25]
In the clinical setting, pain may be divided into 2 types: nociceptive and neuropathic. Nociceptive pain can be subdivided into subtypes based on bone, soft tissue, and visceral etiologies.
Nociceptive pain in cancer arises from direct stimulation of afferent nerves caused by tumor infiltration of skin, bone, soft tissue, or viscera. Nociceptivepain in soft tissue and bone is often described as dull and aching and is well localized. Nociceptive pain in viscera is also dull and aching, but tends to be poorly localized and is often described as coming from dermatomal sites distant from the source of pain.
Common causes of nociceptive pain in cancer include metastases to bone; metastases to the liver causing capsular distention; biliary, bowel, or urethral obstruction; and distention of normal skin or soft tissue structures from expanding tumor mass. In general, nociceptive pain can be well controlled with conventional analgesic therapy, especially opioids.
Bone pain is usually described as deep and aching over the site of the involved bone. The pain is worse at night, during quiet periods, and when stressors, such as bearing weight or pressure, are applied to the involved bone. This pain is only partially controlled by opioids. Prostaglandin inhibitors (nonsteroidal anti-inflammatory drugs [NSAIDs] and steroids) are important adjuvant drugs when treating bone pain. Radiation therapy can also provide dramatic pain relief.
Soft tissue pain results from chemical and physical changes caused by malignant tumors and changes related to advanced disease. Patients usually describe this pain as dull, aching, and constant. Opioids are extremely effective in controlling soft tissue pain.
Visceral pain is usually caused by the obstruction of a hollow organ, such as the small or large bowel. The pain is often described as colicky, poorly localized, and, usually, as coming from dermatomal sites distant from the actual area of obstruction. Nausea and diaphoresis are also often described. Colicky pain is a hallmark of visceral pain associated with obstruction.
Opioids are effective in relieving visceral pain if large doses are given, but procedures to relieve the obstruction should always be considered (biliary or urethral stents, Foley catheter, surgical procedures). Adjuvant drugs include smooth muscle relaxants, e.g., (propantheline bromide [Pro-Banthine®]), gastrointestinal secretion blockers, e.g., (octreotide acetate [Somatostatin®]), and antiemetics, e.g., (promethazine [Phenergan®]).
Neuropathic pain develops after injury to or chronic compression of peripheral nerves, not from stimulation of nerve endings. Common causes ofneuropathic pain include tumor invasion of nerve plexuses, spinal nerve root compression, herpes zoster infections, and surgical damage to nerves, such asintercostal nerve damage during mastectomy.
Neuropathic pain is described as sharp, burning, or shooting and is often associated with paresthesias and dysesthesias (allodynia, hyperpathia,hyperalgesia). Most often, neuropathic pain is only partially responsive to opioids. Adjuvant drugs, such as tricyclic antidepressants (amitriptyline[Elavil®], nortriptyline [Aventyl Pulvules®, Pamelor®]) or anticonvulsants (carbamazepine [Atretol®, Epitol®, Tegretol®], gabapentin [Neurontin®]), may be helpful.
Sixty percent to 80% of cancer patients suffer pain associated with direct tumor involvement of bone, soft tissues, viscera, or nerves. Pain associated with complications of cancer therapy (side effects of surgery, chemotherapy, or radiation therapy) occurs in 25% of patients, and pain unrelated to cancer and its therapy occurs in 3% to 10% of patients.[16], [17], [26], [27]
What types of pain is Wendy experiencing? Wendy described features of two types of nociceptive pain. She has soft tissue pain in her abdomen that she describes as deep, dull, aching, and constant. It is minimally relieved by opioids (Percocet® and Duragesic-25® and only temporarily relieved by heat, cold, or rubbing. Her bone pain is described as deep and aching and is made worse by pressure over her sacral and left ischial area or when bearing weight. The bone pain is relieved with rest and is the same or worse when she is lying down.
Her normal neurologic examination of the lower extremities (sensation, strength, reflexes, and straight-leg raising) and her lack of either burning (dysesthetic) or shooting (lancinating) qualities to her pain are evidence against neuropathic pain.
The lack of colicky pain associated with hollow viscera, a rectal examination revealing only a small amount of soft stool (constipation is the most common cause of visceral pain in patients taking opioids), and regular bowel movements are all evidence against visceral pain.
A simple, well-validated, and effective method for assuring the rational titration of therapy for cancer pain has been devised by the World Health Organization (WHO). It has been shown to be effective in relieving pain in approximately 90% of patients with cancer and more than 75% of terminally ill cancer patients. This approach is based on the concept of an analgesic ladder and the appropriate use of adjuvant drugs (Figure 2).[16], [17]
Use the analgesic ladder with the following basic principles in mind:
1. Pain management should be based on individual assessments to meet the needs of the patient.
2. Base the initial choice of analgesic on the patient’s report of pain intensity.
3. Administer analgesics orally whenever possible, and avoid intramuscular injections.
4. Administer analgesics “around the clock” rather than “as necessary” to prevent recurrence of pain.
5. Anticipate and vigorously treat drug side effects, especially sedation, nausea, and constipation caused by opioids.
6. Analgesic medication should be titrated upward until either pain is adequately controlled (patient is satisfied or the pain score is 3 or less) or side effects develop. There is no ceiling for the effectiveness of strong opioids.
7. Continually reassess a patient’s pain situation.
Wendy’s pain averages 9 to 10/10 on a verbally reported number scale. Shortly after taking the 3 Percocet tablets, her pain decreases to 6 to 7/10, but returns to 9 to 10/10 after 2 to 3 hours.
Using the WHO guidelines, how should Wendy’s pain be managed?
1. Pain management should be based on individual assessments to meet the needs of the patient.
The pain assessment gives you an excellent understanding of the etiology and potential treatments of Wendy’s pain. She has soft tissue pain (nociceptivepain) in her abdomen from her metastatic cervical cancer as well as bone pain from metastases of the tumor into the bone. The soft tissue pain should respond to opioids, and the bone pain should respond to opioids plus an adjuvant NSAID. The analgesic ladder can be used to individualize adjuvant treatment based on an understanding of the underlying etiology.
2. Base the initial choice of analgesic on the patient’s report of pain intensity.
In general, provide analgesic therapy that adequately controls the patient’s pain. Many experts use the pain score to determine at which level of the WHO analgesic ladder to start. Mild pain (pain score 1 to 3) would indicate starting at level I (NSAID or acetaminophen), moderate pain (pain score 4 to 7) would indicate starting at level II (NSAID/acetaminophen plus a weak opioid), and severe pain (pain score 8 to 10) would indicate starting at level III (strongopioids).
In Wendy’s situation, where she reports being at a level of 10 almost all the time, starting at level III would be the appropriate choice.
3. Administer analgesics orally whenever possible, and avoid intramuscular injections.
Pain experts recommend that the simplest dosing schedules and least invasive pain management modalities should be used first. Almost always, simple oral regimens provide excellent pain management with minimal side effects.
Many strong opioid medications (level III) come in two oral types, immediate-release (IR) and long-acting (LA). IR types must be given every 3 to 4 hours, while LA types can usually be given every 12 hours. The simplest opioid dosing schedules usually combine LA opioids and as necessary doses of IR opioidsfor use if the pain breaks through the LA dose. Examples of commonly used strong opioids include morphine, hydromorphone (Dilaudid®), fentanyltransdermal system, oxycodone (Roxicodone®), and methadone (Dolophine®).
Weak opioids (level II) are usually supplied only in IR forms, often in a fixed combination with acetaminophen. While this is convenient for patient dosing, fixed combinations may have significant limitations, such as the inability to be titrated and high cost. Examples of commonly used weak opioidcombinations include codeine and acetaminophen (Tylenol w/Codeine No. 3®), and hydrocodone and acetaminophen (Vicodin®).
Intramuscular injection for relief of chronic pain is rarely used. These shots are painful and provide no demonstrated benefit over subcutaneous or intravenous administration.
4. Administer analgesics around the clock rather than as necessary to prevent recurrence of pain.
For patients with chronic, ongoing pain, prescribing analgesics on an as necessary basis presents significant problems. The cue for taking medication is the presence of pain. Thus, patients continue to experience pain before taking more medication. Research has shown that the more frequently pain is experienced, the more medication it takes to treat it. Additionally, because as necessary medication is almost always an IR type, it often must be taken every 3 to 4 hours, which disrupts sleep and other activities.
It is preferable to deliver analgesic medications around the clock to control pain and prevent it from returning. The simplest around-the-clock method is a combination of LA and IR opioids. LA opioids (Oxycontin®, MS Contin®, OramorphSR®, methadone, etc.) can be given every 12 hours. The patient can take supplemental doses of IR opioids every 3 to 4 hours, as needed. Based on the number of breakthrough doses taken, the LA opioid dose is titrated upward until the need for supplemental doses is minimal.
5. Anticipate and vigorously treat drug side effects, especially sedation, nausea, and constipation from opioids.
Anticipating and aggressively treating drug side effects are essential if patients are to comply with their analgesic regimens. Inform patients that sedation is an expected side effect for a few days after starting an opioid or significantly increasing the dose. If sedation is unexpected, many patients will stop theiropioid. If they know the sedation will clear, they are more likely to give the opioid some time before stopping it. See Drug Side Effects.
6. Analgesic medication should be titrated upward until either pain is adequately controlled (patient is satisfied or the pain score is 3 or less) or until side effects develop.
Strong opioids have no analgesic ceiling and may be increased until pain is controlled or side effects become too severe for the patient to tolerate.
7. Continually reassess a patient’s pain situation.
Pain at the end of life is a dynamic process. Refinement of management is essential to quality care. Simply “turning up” the morphine is not the best approach. The cause of the increased pain should never be assumed; it should be assessed and all appropriate treatments considered.[16] [17] Pain secondary to urinary retention is best treated by using a Foley catheter, which will bring about immediate relief. Pain caused by fecal impaction will be compounded by using more opioids. Instead, enemas and an aggressive bowel program are the best approach
Because of the long time period that terminally ill patients may be taking pain relievers, the physician must be alert to the possibility of drug side effects. The main side effects are described below.
I. Level I. Nonsteroidal anti-inflammatory drugs. NSAIDs are widely used. Patients may be taking nonprescription NSAIDs. NSAIDs have side effects that include:
A. Prolonged bleeding. Platelet inhibition is a side effect of many NSAIDs. For cases where bleeding is a concern, the use of choline magnesiumtrisalicylate (Tricosal®, Trilisate®) or cyclooxygenase (COX)-2 inhibitors should be considered because these agents minimize platelet inhibition.
B. Gastrointestinal upset. Prostaglandin inhibition can lead to gastrointestinal ulceration and bleeding. The use of misoprostol (Cytotec®) or histamine H2 blockers can reduce these problems.
C. Renal insufficiency. If renal insufficiency is a concern, acetaminophen should be considered as an alternative to NSAIDs.
D. Acetaminophen. Liver toxicity can occur when daily doses exceed 4 g per day. Most fixed combination preparations contain 325 mg of acetaminophen per tablet. Taking 2 tablets every 4 hours leads to a daily dosage of 3.9 g. Thus, 12 tablets per day is the maximum safe dose. To prevent liver toxicity, avoid fixed combinations.
II. Level II. Weak opioids. Codeine, hydrocodone, propoxyphene (Darvon Pulvules®, Dolene®), and pentazocine (Talwin®) are weak opioids and have essentially the same side effect profile as strong opioids. There are a few considerations that should be stressed:
A. Codeine and hydrocodone have analgesic ceilings. Once a certain dosage is reached, there does not appear to be additional analgesic effect. The ceiling for codeine is 60 mg every 4 hours (360 mg per day) and for hydrocodone it is 10 mg every 4 hours (60 mg per day).
B. Most pain experts do not recommend the use of codeine because it is a prodrug of morphine and more than 10% of the population lacks the enzyme needed to convert codeine into its active form.
C. With repeated dosing, propoxyphene and its metabolite, norpropoxyphene, can accumulate and lead to central nervous system and cardiac toxicity.
D. Pentazocine, which has mixed agonist and antagonist effects, should be avoided in patients with chronic pain. In particular, it can precipitate opioidwithdrawal.
III. Level III. Strong opioids. Strong opioids include oxycodone, morphine, hydromorphone, methadone, meperidine (Demerol®), and the fentanyltransdermal system patch. All opioids, especially strong opioids, such as morphine, have significant side effects, the most common being sedation, nausea and vomiting, and constipation. If patients are not warned of these potential side effects, the resulting symptoms may create a barrier to usage.
A. Addiction. Research documents that the risk of opioid addiction, defined as socially destructive behavior, is rare (approximately 0.1%) in patients with pain caused by cancer or other advanced diseases. Opioid dependence, defined as physiologic dependence and experiencing significant physical symptoms when the opioid is suddenly stopped, occurs in 100% of patients on long-term opioid therapy.
B. Respiratory depression. As with sedation and nausea, patients rapidly develop tolerance to the respiratory effects of opioids. Serious respiratory depression rarely develops in patients taking long-term opioids. Respiratory depression is most commonly seen in opioid-naive patients receiving escalating doses.
C. Sedation. Most patients who start taking an opioid will experience some level of sedation. Sedation also results from accumulation of long-actingopioids, e.g., methadone. The degree of sedation depends on the dosage, previous narcotic usage, and the type of narcotic used. Most patients develop tolerance to the sedative side effects after a few days. Certainly, when a patient starts a strong opioid or begins a significantly increased dosage, sedation will be a problem for 3 to 5 days. Patients must be informed that this will be temporary and will decrease over time.
As was emphasized previously, 85% to 90% of cancer patients can have their pain well controlled with minimal side effects, including sedation. The vast majority of patients will be alert and interactive even on extremely high doses of narcotics.[16], [17]
D. Nausea and vomiting. A significant number of patients will experience nausea when first started on opioids. Nausea is more likely to be a problem inopioid-naive patients who are started on large doses or opioid-sensitive patients who have sudden, large dosage increases. The severity of this side effect is related to dosage, previous narcotic usage, and the type of narcotic used. Starting patients at a lower dosage and titrating the dosage upward can help prevent or reduce problems. Tolerance to nausea develops after repeated doses of opioids.
Prophylactic antiemetic therapy may be needed, e.g., prochlorperazine (Compazine®), metoclopramide (Clopra®, Maxolon¨®, Reglan®), and haloperidol (Haldol®). These drugs can usually be tapered after 10 to 14 days.
E. Constipation. Constipation is a universal complaint among patients taking long-term opioids and does not improve with time. Vigilance in assessing and treating constipation can never be overstated. There is no dosage ceiling on the constipating effects of opioids. The more opioids administered, the worse constipation can be. Untreated constipation can lead to serious side effects, including abdominal distention, pain, and, ultimately, intestinal obstruction.
An aggressive bowel program should accompany the use of opioids. Stool softeners, e.g., docusate; stool softener/stimulants, e.g., senna; cathartics, e.g., bisacodyl (Dulcolax®) or magnesium citrate; and osmotic agents, e.g., lactulose, must all be considered along with good fluid intake, when possible, if manual disimpactions and enemas are to be avoided.
Senna, a combination bulking agent and stimulant, is a mainstay of palliative care. A practical algorithm is to add 1 senna tablet for every 15-mg equivalents of morphine. If no bowel movement occurs, administer 1 or 2 bisacodyl tablets or suppositories. If no bowel movement still occurs, administer an enema or stronger cathartic. Always assess patients taking opioids for constipation.[16] Any patient who goes more than 48 hours without a bowel movement should be treated aggressively.
F. Meperidine. Meperidine is not recommended for patients with pain from cancer or advanced disease because it is a short-acting drug. Repeated dosing can lead to accumulation of the toxic metabolite, normeperidine, which causes agitation and seizures.
G. Methadone. Methadone has a long half-life and should be used as a long-acting drug, given no more frequently than every 6 to 8 hours. When titrating dosages upward, close observation for up to 3 days after an increase is needed to ensure that drug metabolites are not accumulating, which can cause sedation.
Case 2, Continued. Wendy is complaining of 10/10 pain almost all the time. Starting at Level III is indicated. She is taking 18 tablets of Percocet per day; this is 5.85 g of acetaminophen per day, well above hepatotoxic levels. The Percocet should be stopped.
An LA strong opioid in equianalgesic dosages to the dosage of Percocet and fentanyl should be started. An IR opioid for breakthrough pain should also be prescribed for equal analgesic dosing (see Appendix). You discover that Duragesic-25 is equivalent to 15 mg of morphine sulfate 2 times per day, and 60 mg of oxycodone is equivalent to 30 mg of morphine sulfate 2 times per day. You initiate LA morphine, 45 mg 2 times per day. You also prescribe IR morphine, 30 mg every 4 hours, as needed, for breakthrough pain.
An NSAID should be started as an adjuvant treatment for Wendy’s bone pain. Consider using misoprostol or another drug to protect her gastric mucosa. Naproxen, 500 mg 2 times per day with meals, was started along with misoprostol, 100 mg, 2 times per day.
The patient could be contacted every 24 to 48 hours by phone to reassess her pain and titrate her medication, and Wendy could return to the office in 7 to 10 days.
Two days after the office visit, you call Wendy on the phone, and she reports her pain has decreased from an average of 9 to 10/10 to 6 to 7/10. She uses, on average, 4 doses of breakthrough IR morphine (30 mg each dose) per day. You increase her LA morphine by dividing 120 mg (4 doses of breakthrough medicine at 30 mg per dose) between her every-12-hour doses so she is now taking 105 mg of LA morphine every 12 hours and continues to take 30 mg of IR morphine every 4 hours, as needed, for breakthrough pain.
Two days later you call Wendy again. She reports that her pain has decreased further to 4 to 5/10 on average, and she takes, on average, two breakthrough doses of IR morphine per day. She complains of mild sleepiness and some constipation.
After you reassure Wendy that her sleepiness is temporary and will improve over the next week and that her constipation can be controlled with the use ofsenna, 1 tablet for every 15 mg of morphine, she agrees to increase her morphine further. You increase her LA morphine to 120 mg 2 times per day and maintain her on the 30 mg of IR morphine every 4 hours as necessary.
When you call her back two days later, she is grateful. Her pain is now averaging 3/10 or less with her 120 mg dose of LA morphine sulfate every 12 hours, and she is using her breakthrough IR morphine, on average, less than once per day. Her sleepiness is improving, and her bowels are moving well. In fact, she finds it hard to believe that she still has cancer. After all these months of uncontrolled pain, she has equated her pain with her cancer. Now that the pain is controlled, she finds it hard to accept that her cancer still persists. This radical change in Wendy’s life has occurred within 9 days of her first office visit.
Conducting a thorough pain assessment, using the information obtained to formulate an understanding of the underlying etiology of the pain, and using this understanding to develop a sound pharmacologic treatment plan based on the WHO analgesic ladder produced excellent pain management with minimal side effects in Wendy, as it will in 85% of patients with cancer. More importantly, you have freed Wendy from the suffering of uncontrolled pain. Freedom from pain allows Wendy to concentrate her energies on the many opportunities for dealing with the significant emotional and spiritual challenges she faces at the end of her life.
Case 1, Continued. Betty Williams calls; Tom Sr. isn’t doing well: “He must be allergic to the medicine you gave him because he’s sick to his stomach and is vomiting ever since he started it. Today, he also has lower stomach pain. Also, he’s much more foggy and sleepy than before he started the new medicine.” Betty sounds desperate and wonders what to do.
The side effects of strong opioids are described in Drug Side Effects. The most common side effects are sedation, nausea and vomiting, and constipation. It appears that Tom Williams is experiencing most of these side effects.
Case 3, Continued. Mrs. Gregory continues to use naturopathic and herbal remedies for her “indigestion,”as she calls the abdominal pain associated with her liver cancer, although she is using the narcotics you prescribed. The result is that her pain is well controlled.
Her symptoms now include weight loss and increasing weakness. During a home visit, her 3 daughters tell you about their mother”s poor appetite. They have been making her favorite foods and encouraging her to eat, but she just won’t. They feel she is “starving to death” before their eyes.
What approach would you take in this situation?
Anorexia and cachexia are common in terminal illness, affecting as many as 80% of patients.[28] [29] [30] Anorexia is one component of the cachexiasyndrome, which can also include weight loss (fat, muscle, and visceral protein), weakness, nausea, and lassitude. In Mrs. Gregory’s case, her anorexia could be caused by the primary disease affecting a major organ of the digestive tract that then produces nausea; her medications (either the ones you prescribe or others of which you are unaware); depression; or other factors, such as loss of taste. Reversible causes of anorexia should be reevaluated using her history, physical examination, and a careful review of medications (Table 3).
Sometimes, reversible causes of anorexia respond to specific management. However, an increasing number of biologic mediators of weight loss andcachexia are being identified, including both tumor and immunologic factors. The general failure of intensive nutritional support to reverse cancer- and AIDS-related cachexia, lengthen survival periods, or reduce surgical morbidity suggests that there is little probability of treating anorexia successfully until the biologic basis of cachexia is better understood. In cases of advanced cancer there is no good evidence that hyperalimentation or tube-feeding improves survival rates, and, in some studies, they have been associated with earlier death from aspiration, pneumonia, or sepsis.
|
Table 3
|
|
|
Symptom
|
Therapy
|
| Aches and pains | Pain management measures |
| Nausea and gastrointestinal dysfunction | Adjust size, timint, texture, and presentation of meals; antiemetics; prokinetics |
| Oral lesions and dental problems | Specific Antifungal or antiviral drugs,lidocaine (Xylocaine Viscous), dental or denture care |
| Reactive (organic) depression | Psychologic support, antidepressants |
| Evacuation problems | Bowel program (sonstipation, retention) |
| Xerostomia | Ice chips, atomizer, saliva substitute, change drugs or reduce dosage, pilocarpine (Salagen) |
| Iatrogenic (drugs, chemotherapy, radiation) reaction | Change drugs or reduce dosage |
| Acid related problems | Antacids, H2 blockers, proton-pump inhibitors, cytoprotection, (misoprostol [Cytoec]) |
Case 3, Continued. During the home visit, you talk with Mrs. Gregory during the examination. Then you meet with her daughters in the kitchen to ask open-ended questions to understand their concerns. Laura explains how difficult it is for her to watch her mother not eat and how she believes that better nutrition would help her mother fight the cancer. They all recall their mother telling them almost daily during childhood how important it was to “clean their plates” so they would stay healthy and grow up strong. Stacey expresses her frustration at the trouble she goes to making her mother’s favorite dishes that then go almost untouched. Laura has heard of tube-feeding but backs away from the idea because of opposition from her sisters.
You acknowledge their frustration and reflect on how important food and feeding seems to have been in their family as a symbol of life, nurturing, and love. You suggest that their mother isn’t willfully rejecting their efforts but that her loss of interest in food is part of her disease. You remind them that her death is being caused by liver cancer, not lack of appetite. Additional nutrition might nourish the cancer as much, if not more than, the rest of her body. You encourage them to focus on aesthetic qualities of the foods they offer, such as taste, appearance, temperature, and texture, rather than quantity and to be more flexible about the timing of meals and snacks. You offer a brief trial of the prokinetic agent metoclopramide, but decide to not recommend other measures, such as corticosteroids, progestational agents, alcohol, and cannabinoids, largely on the basis of your understanding of Mrs. Gregory’s reluctance to take a lot of prescription medications, their cost, and the relative lack of evidence of their efficacy in advanced cancer.
Case 3, Continued. The daughters accept your suggestions, and Mrs. Gregory slowly declines over the next month. You get a call from Laura early on a Monday morning. She is concerned that her mother is dehydrated. She says her mother hasn’t eaten or drunk anything since Friday night and wonders if intravenous fluids would make her mother feel better and might even brighten her up a bit. You recognize that Mrs. Gregory’s death is imminent, but may still be days away. What is the potential role of intravenous hydration near death?
Dry mouth and thirst are common symptoms in the dying, affecting 60% to 90% of patients.[29], [31], [32] Many caregivers have concerns about dehydration and related metabolic derangements (hyperosmolarity, azotemia, and hypernatremia) causing dry mouth, thirst, mental status changes, or other suffering at the end of life. Some also believe that artificial hydration can have important symbolic significance relating to compassion andnonabandonment. Hydration can potentially reduce symptoms from opiate toxicity or hypercalcemia.
However, in the early 1980s, hospice caregivers began to question the benefits of routine fluid support because observations did not indicate that there was much net benefit to the patient.[33] Also, artificial hydration can have harmful effects. Vigorous fluid support can cause edema or anasarca and problems with respiratory, gastrointestinal, and urinary secretions. Quality of life may decrease because of these medical complications, intrusion of machinery into the sickroom, or caregiver focus on the hydration process rather than the patient.
Studies of dying patients do not show a strong association between thirst and hydration status or voluntary oral fluid intake. In a study of palliative care patients with advanced cancer, measurements of fluid intake, serum sodium and blood urea nitrogen concentrations, and osmolality did not predict thirst.[34] In another study, patients could not differentiate between thirst and dry mouth. The study concluded, “The symptoms were completely relieved with ice chips, sips of liquid, lip moisteners, hard candy, and mouth care.”[31] Similar findings were reached in a study of patients with cancer in a London, UKhospice: “Symptoms of respiratory tract secretions, thirst, and dry mouth are common in the dying patient, but these symptoms are not significantly related to the level of dehydration.”[32]
When a patient is near death, physicians have little sound evidence on which to base a decision about the appropriateness of artificial fluid support. Certainly, simple measures should be implemented first: mouth care with ice chips or oral misting; treatment of specific conditions, such as oralcandidiasis; and, if possible, modification of drug therapy that may be aggravating dry mouth, e.g., morphine, antihistamines, anticholinergics, andtricyclics.
Hydration decisions should probably be guided by the patient’s wishes if the patient is conscious and can be informed about the balance between risk and benefit. Caregivers for the unconscious patient should not be deluded about the benefit of fluid support. It might help family members to explore and discuss their understanding of the symbolism of providing food and water to the ill and suggest other ways they might be able to demonstrate their compassion to relieve feelings of guilt.
Case 3, Continued. You know from previous discussions that Laura is having the most difficulty seeing her mother decline. You agree that her mother may well feel thirsty and emphasize your wish to provide maximum comfort to her mother. You then explain the expected lack of benefit from intravenous fluids and mention potential problems. You suggest that good first steps are to give her mother sips of fluid, have her suck on a moist cloth, administer water with a moist swab, or mist water into her mouth. You tell her you will stop by at the end of the day to check on things.
That evening, Laura greets you and thanks you for your great suggestions–the moist cloth is really working well.
Case 1, Continued. After controlling Tom’s nausea with prochlorperazine, his constipation with a stool softener and senna, and his sedation by titrating his morphine dosage, he does well for a time. But 2 weeks later, his wife calls, and she is, again, quite worried. She says Tom is seeing things, and she is worried that this is caused by the medication or worse. In response to your question about what Tom is seeing, she starts crying and says, “Tom sees his father and talks to him.” Tom is surprised that Betty can’t see his father. Tom tells Betty that his father has come to take him to the “other side.” Betty finds these hallucinations disturbing and wants to make them go away.
Agitation and delirium are medical emergencies for patients and families who are in their home at the end of life. They deserve a prompt and effective response from the physician. It takes only 1 or 2 days of sleeplessness to bring even the most determined and hardy caregivers to the brink of exhaustion. Aggressive use of benzodiazepines for agitation and haloperidol, chlorpromazine (Thorazine®), or reserpine (Diupres®, Diutensen-R®) for delirium often allow the patient to stay at home. Otherwise, early referral of the patient to a nursing home or hospital for control of symptoms and caregiver rest is needed.
However, what Mrs. Williams describes is neither agitation nor delirium. Mr. Williams is calm and seems to be enjoying the experience. It is not uncommon for end-of-life patients to have such visions within the days before death.[35] Often, deceased loved ones will come to lead them to the “other side.” Most hospice professionals take these visions quite seriously and expect the patient’s death within a few days of when they occur. Such events are part of the process of decathexis, the separation or letting go of life. Letting go is a normal developmental process for the dying as they accept they will be leaving this world. However, it can be quite disturbing to caregivers who are frightened by the new emotional distance they may feel from their loved one.
Case 1, Continued. You talk about all this with Mrs. Williams in matter-of-fact language, letting her know that Tom is going through the normal process of dying, and this is a way of preparing to depart from the world they have shared together for more than 40 years. You express your own sense of awe and wonder at these terminal visions and suggest she listen closely to what he says and even ask questions so she can better understand exactly what he is experiencing. Lastly, you gently ask if she has given him permission to die. After a few tears, she says no, but will use the next day to do so.
Case 4, Continued. A novice hospice nurse calls you regarding Mr. Sen. She is concerned that he is depressed. At each visit, he talks about little besides death, and she notes that he is more tired, his appetite is decreasing, and he seems more distant and detached from her. She has talked with his caregivers at the monastery, and they also comment that he seems less involved with them and declines to participate in any decisions about the monastery. She asks if an antidepressant medication should be started.
Indeed, many of Mr. Sen’s symptoms or behaviors are seen in depressed patients: diminished interest in activities, psychomotor retardation, loss of appetite and weight, indecisiveness, and recurrent thoughts of death. However, there is no record that Mr. Sen has been depressed previously. Also, he does not seem at all sad or upset when he speaks of death. You are aware that a psychiatric diagnosis, “mood disorder caused by a general medical condition,”[36] exists, but you are also aware that Buddhism emphasizes the quality rather than the duration of life, consciousness rather than material attachment, and death as a form of rebirth.
Although you have a fairly low threshold for prescribing antidepressant medications, in this case you suspect that Mr. Sen is experiencing a serene state of mind that may be exactly what he wants. You do not exactly understand it, but to you it seems more like decathexis than depression. You describe your basic understanding of Buddhist beliefs and practices to the hospice nurse and agree with her that she will reassess Mr. Sen at her next visit with this new perspective in mind and get back to you if she remains concerned about depression.
Case 5, Continued. Tony Sando calls you and sounds distressed. He says his mother is extremely anxious and complaining of shortness of breath with minimal exertion. It has gotten to the point that she wants to go to the emergency room every day. He relates that she has always been a nervous person, but this is worse than ever. So far, you have prescribed maximum-strength diuretics, an angiotensin converting enzyme inhibitor at maximum dosage,digoxin (Lanoxin® ), and carvedilol (Coreg® ), as well as oxygen at 5 L per minute by nasal cannula.
She is not breathing more rapidly than usual, and increasing the oxygen doesn’t seem to help. Examination results seem about the same as they have been for the past several visits, but it is clear that she is more anxious and agitated about her breathing.
The physical findings suggest that progression of Mrs. Sando’s congestive heart failure (CHF) is not the cause of her distress. You explain how anxiety and breathlessness often intertwine. Mrs. Sando and Tony agree that her swelling looks the same or even a little better and that her cough hasn’t changed.
You mention your gratitude that they were recognizing changes in her status and thank them for calling when they did. You ask them to set up a bedside fan, and show them how to prop her arms up on pillows to reduce the work of chest expansion. She feels somewhat better. You teach them how to use a metered-dose inhaler with spacer and have them give her a dose of albuterol (Airet®, Proventil®, Ventolin® ), which gives additional temporary relief.
After a period of family conversation at the bedside, to which Mrs. Sando occasionally contributes, everyone agrees that things are better, and Mrs. Sandosays she thinks she might be able to get some sleep now. You suggest a trial of oral opioids as a specific remedy for breathlessness, and Mrs. Sando agrees. You prescribe hydrocodone syrup, 1 to 3 mL every 4 hours. You make arrangements to adjust the dosing with the thought of using an LA morphine preparation if the hydrocodone is effective.
The next day, Tony Sando calls you to say she slept for up to 4 hours at a time that night, the most sleep she had had in weeks. Today, she is even comfortable with her oxygen turned down below 3 L per minute.
As these cases illustrate, the symptoms of terminal disease can be challenging. Often, they overlap with symptoms commonly encountered in general clinical practice, and no special skills or ingenuity are required to deal with them. Most family physicians have experience in treating symptoms, such as nausea or pain, and complications, such as pneumonia or edema.
Management is usually the same for the dying individual as for the more robust person (Table 4). However, the range and severity of symptoms encountered at the end of life will often exceed those typically seen in general practice and require uncommon interventions. For example, it is extremely rare, except when caring for patients at the end of life, to see a patient who is alert and offering you a cup of tea while their pain is controlled with a morphine drip at 1,000 mg per hour. Novel solutions may be necessary, such as injectable morphine sulfate or fentanyl delivered via a small volumenebulizer every 3 hours to suppress a persistent cough associated with lung cancer.
Many palliative care skills can be easily learned as needed if one has the interest and takes the time to do so. There are many resources for learning these skills. For family physicians practicing where there are established hospice programs or palliative care teams, sharing care with these services is an excellent way to learn new skills and experience the uplifting support that an interdisciplinary team can provide. Just as the dying person releases everyday concerns of job, housecleaning, and even eating in order to connect more strongly with the transcendent or spiritual realm, the physician will gain from having sufficient skills and knowledge that symptom management is not a struggle.
|
Table 4
|
|
|
Symptom
|
Therapy
|
| Bronchospasm | B-agonists, steroids |
| Rales | Reduce fluids; diuretics, consider antibiotic if infection is present |
| Effusions | Thoracentesis, pleurodesis |
| Airway obstruction | Modify foods or posture to reduce aspiration, shallow suction |
| Thick secretions | Nebulized saline, shallow suction anticholinergics to reduce secretions |
| Hemoglobin, low | Consider transfusion |
| Anxiety | Personal support, environmental measures, relazation techniques, opioids, benzodiazepines |
| Interpersonal issues | Personal support, conselling, respite care |
| Religious concerns | Personal support, spiritual consulting |
Once the patient, family, and physician have developed a consensus for an initial management plan with well-developed goals, a caregiving team should be assembled.[4] The members of this caregiving team will come from at least 3 places: the patient’s family, the patient’s community, and health care professionals. Identifying, developing, supporting, and coordinating the caregiving team is another essential task in providing quality end-of-life care. Family physicians are able to view the patient’s disease and the family’s coping abilities longitudinally. Thus, family physicians can play a pivotal role in recognizing when the needs of the patient and family have escalated and additional resources and expertise are needed.
The overwhelming majority of patient care at the end of life will occur outside the hospital, usually in the patient’s home. Determining how this care will be provided and what factors are necessary to achieve a successful outcome requires considerable effort. Most family physicians find a “family conference” to be an excellent way to coordinate care. Having all interested parties in one place to discuss the various issues is both efficient and productive. Issues to be considered at such a meeting include: [16], [37]
1. Who will provide day-to-day care?
2. Who will be the spokesman for the family and disseminate information between the physician and the rest of the family?
3. Where will the care be provided?
4. What other agencies and resources are needed, and when should referrals be made?
5. What other resources need to be considered, including friends, family, and associates from the patient’s faith community?
6. Have issues related to finance and insurance been explored and clarified?
The exploration of these questions is important because any management plan is only as good as the caregivers who support it. It is important to emphasize giving attention to uncovering the need for additional resources. Patients and families often report significant social and financial stress in providing physical care to seriously ill family members. These stresses include family members having to quit their job or make some other major life change (20%), loss of most or all of family savings (31%), and loss of a major source of income (29%).[38]
Additionally, managing insurance issues can be extremely complex, and failure to know what is covered or how to understand and submit claims can lead to major economic expense. Referral to a knowledgeable social worker or insurance clerk early in the process can relieve much stress on caregivers.
Explore the needs of caregivers, develop a team to deliver care, and support the team to sustain the family and patient. Home visits are the best way of assessing the effectiveness and support of the caregiving team.
Case 5, Continued. Mrs. Sando and Tony arrive at your office late one afternoon after you spoke with Tony on the phone. It is obvious that Mrs. Sando’sphysical condition has declined significantly since her last visit. You are shocked and saddened by the change in her appearance. At the same time, you agree with the cardiologist that aggressive treatment of her CHF is of little value and perhaps futile.
Tony is very anxious about his mother’s condition and expresses anger and frustration that his mother was not hospitalized during their recent visits to the emergency room. He looks exhausted and tells you they can’t go on like this much longer.
Mrs. Sando and Tony look at you expectantly, seeking answers. You are their physician and the major source of information for them. Before responding, you take a moment to think about how to address her condition with them. You ask yourself the following questions:
1. How direct should you be? What words will you use to help them understand her poor prognosis?
2. What issues should be addressed?
3. What information do you need to help them with their decision-making?
4. What questions would you ask to elicit that information?
You start by asking them what they have been told about Mrs. Sando’s heart condition and what they feel is happening.
Tony tells you that they went to the ER several times because his mother was extremely short of breath and experiencing severe chest pains that were not relieved by nitroglycerin. During their last ER visit, Mrs. Sando’s cardiologist told them that her heart condition was “very bad” and she would continue to have these “spells.” The cardiologist suggested that the Sandos contact you, their primary physician, to discuss what should be done next.
You then ask what they would like to see happen. Tony tells you he understands that nothing is going to make his mother better; she’s been sick for a long time. Mrs. Sando nods in agreement. Tony expresses his desire that his mother be kept comfortable and be given something to help her breathing and chest pain. Mrs. Sando agrees, adding that she does not want any more trips to the ER: “It just wears me out.” Tony, looking concerned, says that other than going to the emergency room, he doesn’t know what else to do when his mother has one of her spells.
By obtaining this information, you are able to clarify the Sando’s understanding of the medical condition and what direction they wish the management plan to take. Both Mrs. Sando and Tony realize the severity of Mrs. Sando”s condition and agree that aggressive treatment is futile. Keeping Mrs. Sandocomfortable and out of the ER is their goal.
Once this management path has been agreed on and the goals for treatment established, symptom management strategies can be discussed. You explain to Mrs. Sando that there are ways of keeping her comfortable with medication that will control her angina and dyspnea.
Next, you ask them, “Are there other concerns?” Mrs. Sando makes it very clear that she wishes to remain in her own home. Tony states that he can stay with his mother at night and on weekends, but if he takes any more days off from work, he could lose his job. He wants to know if his mother can be left alone during the day, and, if not, what kind of nursing care is available and how long she will need care.
The physician needs to assess a number of things to assist the Sandos regarding caregiving decisions. What issues need to be addressed in establishing acaregiving plan for Mrs. Sando? Among the issues and questions to be considered are:
1. Safety.
Is it safe to leave Mrs. Sando alone?
Could she summon help in the event of an emergency?
How well can she ambulate?
What is her cognitive status?
Is it safe for her to give herself medications?
If morphine is used to manage her symptoms, how will that affect her cognitive abilities and ambulation?
2. Complexity of care.
What will her care needs be?
Can the care she needs be provided by a nonprofessional caregiver, or does she need a trained health care worker?
Is she able to assist with her personal care?
Will a caregiver be physically able to manage her care?
What is her prognosis?
3. Resources.
What financial resources do the Sandos have?
Can they afford to hire a caregiver?
Is Mrs. Sando eligible for any services or programs?
After much discussion, it is agreed that Mrs. Sando should not be left alone. Because of her unsteady gait, assistance with ambulation will be required. There is the concern that morphine might affect her cognitive ability and ambulation. Although needing help and supervision, Mrs. Sando’s care needs do not yet require the skills of a trained caregiver. However, Mrs. Sando’s rapidly deteriorating condition will require frequent assessment to achieve good symptom management.
Case 5, Continued. Tony was able to identify a neighbor willing to stay with his mother during the day. Since Mrs. Sando appeared to be in the end-stage of her cardiac disease, you discuss making a hospice referral for them. The Sandos agree to explore this option, and an appointment with a hospice representative is arranged for the following day.
Agreeing on a management plan and putting together a caregiving plan that meets the unique needs of each individual are challenging tasks. It is important that the caregiving plan remains flexible to meet the changing needs of patient and family and that it addresses more than just physical needs. Emotional and spiritual needs must be addressed as well.
Could she summon help in the event of an emergency?
How well can she ambulate?
What is her cognitive status?
Is it safe for her to give herself medications?
If morphine is used to manage her symptoms, how will that affect her cognitive abilities and ambulation?
2. Complexity of care.
What will her care needs be?
Can the care she needs be provided by a nonprofessional caregiver, or does she need a trained health care worker?
Is she able to assist with her personal care?
Will a caregiver be physically able to manage her care?
What is her prognosis?
3. Resources.
What financial resources do the Sandos have?
Can they afford to hire a caregiver?
Is Mrs. Sando eligible for any services or programs?
After much discussion, it is agreed that Mrs. Sando should not be left alone. Because of her unsteady gait, assistance with ambulation will be required. There is the concern that morphine might affect her cognitive ability and ambulation. Although needing help and supervision, Mrs. Sando’s care needs do not yet require the skills of a trained caregiver. However, Mrs. Sando’s rapidly deteriorating condition will require frequent assessment to achieve good symptom management.
Case 5, Continued. Tony was able to identify a neighbor willing to stay with his mother during the day. Since Mrs. Sando appeared to be in the end-stage of her cardiac disease, you discuss making a hospice referral for them. The Sandos agree to explore this option, and an appointment with a hospice representative is arranged for the following day.
Agreeing on a management plan and putting together a caregiving plan that meets the unique needs of each individual are challenging tasks. It is important that the caregiving plan remains flexible to meet the changing needs of patient and family and that it addresses more than just physical needs. Emotional and spiritual needs must be addressed as well.
Having the patient, family, community, and health care professionals working together as a team is a formidable challenge.
“Team work does not result from simply putting health care workers, patients, and families together in one room, nor is it the same as collaboration. The work group that is familiar throughout health care is the collaborative multidisciplinary group. In such a group, individuals are known first by their professional identities and only secondarily by their team affiliation. They share information by using the vehicle of the medical record, and the leader is the highest-ranking member. Because the team is not the primary vehicle for action, the interaction process is irrelevant. Compare that to the interdisciplinary team, where the identity of the team supersedes individual professional identities. Members share information and work together to develop goals. Leadership is shared among team members depending on the task at hand. Because the team is the vehicle of action, the interaction process is vital to success.”[2]
Hospice is the only well-developed interdisciplinary model for delivering end-of-life care.
In defining the team that needs to be assembled for excellent care, a broad perspective is needed. Central to defining the team are the patient, the patient’s family, and the community. Involving them and keeping them a central part of the process is essential. On the professional side, there are also several key members:
Defining who is the primary physician is not always easy. Most patients have several physicians. Is the primary physician the primary care doctor or a specialist? Discussing this issue with the patient and family and other physicians is extremely important because the primary physician plays the crucial role of coordinating care.[39]
There will usually be a nurse in the primary physician’s office who is instrumental in working with the patient and family and helping to coordinate care. Communication between the patient and family, physician, and nurse needs to be clear and well defined. [21]
Home health services are almost always needed at some point in the course of an incurable illness. Sometimes, services will be provided by a home health nurse or social worker; ideally they will be provided by the hospice team. Understanding the roles of home care and how to use the services effectively for the benefit of the patient and family is not easy.[2] There is a wide range of competency among home health nurses and social workers providing end-of-life care. They often have a long relationship with the patient and family and are oriented towards curative approaches to care. Working with them in an effective manner and helping them to understand the differing goals of end-of-life care are important roles for the primary physician and nurse. Hospice care, on the other hand, is delivered by a team of professionals trained in palliative medicine. Team members may include:
1. A nurse manager who coordinates care and provides symptom management in coordination with other team members, including the primary physician.
2. A social worker who assesses community resources and provides counseling.
3. A home health aide who provides respite and personal care.
4. A volunteer who has had extensive training and usually has been through a similar experience. The volunteer provides support to the patient and family through visits and respite care for the primary caregiver. In many programs, the volunteer is also the primary bereavement contact for surviving family members.
5. A spiritual counselor who often comes from a faith tradition but usually does not focus on a particular denomination. This team member helps the patient and family deal with transcendent issues of meaning and purpose that go beyond individual concerns and connect them to the greater world.
6. A bereavement coordinator who ensures programs are in place to help patients and families deal with their grief and loss issues before and up to 1 year after death.
7. The hospice medical director who is a physician employed by the hospice program, a consultant to the patient’s primary physician, and an informational resource to the rest of the team.
Hospice is the most frequently used resource to deliver end-of-life care. Hospice’s interdisciplinary team of experts offer a wide variety of resources, therapeutic interventions, nursing and monitoring skills, and after-hours and crisis coverage. This care does not aim to prolong or shorten a patient’s life. Hospice is a philosophy of care focused on helping the patient and family to live their lives with maximum quality and comfort until the patient dies.
Hospice is focused on living, not death. Hospice care embodies the principle of attending to the entire patient and family experience, including mind, body, and spirit. Much of this monograph is influenced by principles of end-of-life care developed by hospice
The majority of hospice care takes place in the home. Patient care is provided by family members, friends, or hired caregivers acting under the direction of an interdisciplinary hospice team.[39]
How, when, or if hospice care should be offered to a patient and family are complex and sensitive issues and should be based on patient and family values and goals. The fear of dying and the association of a hospice referral with death make such discussions sensitive. Despite this, there is good information available regarding hospice and its benefits. The vast majority of patients and their families who received hospice care reported it to be the most helpful experience they had during an overwhelmingly difficult time.
Most caregivers expressed a wish that they had received hospice services sooner than the last 10 to 14 days of life. However, when asked if hospice care was offered earlier by their physician or other health care provider, the majority of caregivers responded that it was, but the patient or caregiver was not ready to accept hospice or give up hope.
Among the reasons cited by caregivers for why they eventually agreed to hospice care was the position of their primary physician, who did not ask if they needed hospice care but told them that hospice care was in the best interest of the patient and caregivers alike. Caregivers who experienced a “hospice death” reported fewer bereavement problems than caregivers without such support. Such information underscores the complex nature of end-of-life decision-making in general and hospice referrals in particular.[39]
Not all patients and families are good candidates for a hospice referral. Some patients want to pursue aggressive curative therapies until they die. Others will choose a different path despite accepting the terminal nature of their illness. However, for those patients and families who are hospice candidates, being aware and sensitive to the following issues will help improve the chances that a hospice referral will be considered by the patient
Timing.
Wait until after the patient and family understand the diagnosis and its implications before discussing hospice care. Testing and consultations must be completed, recommendations and treatment options discussed, and goals clarified before patients and families are ready to decide on hospice care. For those patients and families who decide against life-prolonging therapy, hospice is a natural recommendation.
Positive Option.
Hospice should be introduced as a positive option, a different kind of care that aggressively provides comfort and attempts to maximize the quality of living. Hospice accepts death as a natural part of the life cycle and emphasizes how to make life meaningful until the end of life.
Trust.
The possibility of hospice care should be introduced by someone the patient and family trust. Trust is a key factor in the patient’s and family’s willingness to discuss care options and to allow the introduction of other health care providers, such as the hospice team, into their home
Many physicians report difficulty in discussing hospice with their patients and families. Some physicians find it hard to admit there is nothing more they can do to cure or modify the patient’s disease. Others feel they are asking the patient and family to give up hope. Hope, in this setting, is usually defined as living longer, yet hope can have many dimensions (see Personal Domain).
Discussing what hope means to the patient and family often opens the door to a hospice referral. For many patients and families, the major elements of hope that hospice can provide are living without pain or other symptoms, being at home, and having support.
Specific physician barriers to recommending hospice care include:
Late Referrals.
One barrier to recommending hospice care is a failure by the physician to recognize when a patient has entered the terminal phase of the disease. The average length of hospice care is 36 days, and 16% of patients die within 7 days of referral.[3] These short lengths of care occur despite the Medicare benefit that provides hospice care during the last 6 months of life and an unlimited number of additional 60-day benefit periods. Patients and families with less than 7 days of hospice care often receive brink-of-death care rather than end-of-life care and endure avoidable stress and trauma.
Finances.
The cost of hospice care is covered by Medicare, Medicaid, and most private insurance carriers. For uninsured patients, most hospice programs offer services on a sliding scale. However, the payment mechanism used by insurers creates considerable barriers to care.
Hospice is a capitated insurance plan; it receives a fixed daily payment (approximately $100 per day). This is used to pay the costs of the hospice team (nurse, social worker, home health aide, bereavement coordinator, and spiritual counselor), medications, durable medical equipment, and all other medical interventions. Thus, expensive procedures and therapies and heroic measures cannot be routinely covered without bankrupting the program.[40] It is not easy for anyone–patient, family, or physician–to let go of aggressive, high-technology therapy after relying on it for many days, months, or years.
Losing Your Patient to Hospice.
Physicians who have cared for a patient and family for many years find that losing their role is difficult, both professionally and emotionally. Many patients and families feel the same sense of loss and will delay accepting hospice care out of fear of losing their relationship with their physician.
There are many reasons this loss occurs. The interdisciplinary hospice team is used to working together in a nonhierarchical manner, with their primary goal being supporting patient and family needs. They have weekly team meetings and well-established processes to develop and implement their care plans. Family physicians are not a part of this team and can easily be excluded, especially when the patient has become too weak to leave home. Patients and family members will often address their concerns to hospice team members instead of their family physician. This change in communication pattern occurs because hospice team members are easily accessible either during home visits or by phone 24 hours a day and are directly involved in day-to-day care.
While physicians may feel they have lost involvement with their patient and are being used for writing narcotic prescriptions, hospice team members may be frustrated from being unable to talk with the physician when they call the physician’s office, not having phone calls returned, or having physicians refuse to accept treatment suggestions that the hospice team feels might provide comfort to the patient and family. Many palliative treatments for pain, dyspnea, agitation, and other symptoms are unusual by traditional medical standards. Clearly, everyone loses in this scenario, particularly the patient and family.
How can the approach to end-of-life care be varied to meet the patient’s needs, values, and goals? Should a referral to hospice be discussed with Mrs. Gregory despite her determination to avoid bad news? How might Mrs. Gregory and her daughters be assisted to find the help they need? What words should be used when talking with Mr. Williams about hospice? Is developing a care management plan more easily accomplished when dealing with an individual like Mr. Williams and his family, who are willing to discuss his terminal state? Should the professional and emotional response to Mr. Sen, forced to communicate through a translator, differ from the response to the Sandos, whom the physician has known for many years?
It is important for physicians to overcome personal barriers to end-of-life care. Having a patient experience a serious illness outside of a hospital setting is often a rare experience for a physician, as is having a hospice team care for a patient. In spite of the close relationship that may develop over the years between a physician and patient, there may be little direct contact between them during the last period of the patient’s life. It may be difficult to receive a report of the patient’s death from someone you do not know.
Overcoming Barriers.
The following strategies will help overcome barriers to hospice care:
1. Have a hospice representative present when the option of hospice is discussed. This discussion alleviates patient and family fears that they will be abandoned by their physician if they enroll in hospice. At the same time, it establishes a relationship between the physician and the hospice team and demonstrates the collaboration that will occur between the physician and hospice team as they both care for the patient and family.
2. Develop a communication plan that allows the patient, family, hospice team, and physician ready access to each other. Exchanging phone and beeper numbers and instructing office staff to give calls from these individuals top priority can facilitate this communication. Patient status reports and consultation requests can be faxed to the physician’s office.
3. Develop a mechanism to allow the physician to participate as an active member of the hospice team. This could include physician attendance at meetings of the interdisciplinary team or participation by conference call. Joint home visits can be scheduled, and a hospice nurse or other team member may accompany the patient to office visits.
Many physicians are uncomfortable acting as a director of care. When the patient is homebound and the physician does not have direct access to the patient, the physician must rely on assessments made by individuals who may be unknown to the physician. This situation becomes particularly difficult when the physician is asked to make treatment decisions based on these assessments. Physicians unfamiliar with terminal care, for example, may find themselves uncomfortable writing orders for interventions that are standard practice in palliative care.
A working relationship with the hospice medical director provides opportunities for mutual learning and mentoring and can benefit the entire caregivingeffort.
Case 5, Continued. A hospice representative is present when you discuss the option of hospice care with the Sandos. The focus of the discussion is the coordination of Mrs. Sando’s care. The Sandos express several concerns:
1. What symptoms will Mrs. Sando experience in the months ahead?
2. How will her physical distress be relieved if she no longer goes to the ER when symptoms worsen?
3. How will you stay current on her condition when she is no longer able to visit the office?
4. How will the Sandos reach you when they need help?
You need to take a moment to think about these questions and what information should be given to the Sandos. You consult with the hospice medical director to develop a plan for Mrs. SandoÕs use of morphine. This plan includes medications to be taken when symptoms exacerbate. The plan is explained to the Sandos, together with reassurances that a hospice team member will be available 24 hours a day.
The hospice nurse explains to the Sandos how the team will interact with them and you. It is decided that your direct office number will be given to both the Sandos and the hospice team, and calls will be put through to you directly. Additionally, you are given the hospice nurse’s pager number so you can collaborate with her when needed. You also agree that when you are unavailable, you will apprise physicians covering for you of Mrs. Sando’s condition and her treatment plan.
As Mrs. Sando’s illness progresses, the hospice nurse contacts you for changes in medication orders and to update you on her condition. When Mrs. Sando’sdeath appears imminent, you and the hospice nurse visit the Sandos at home to say goodbye and offer your support to her family. Because of your longtime relationship with Mrs. Sando, her family draws comfort from this visit.
The glue that holds the caregiving team together is support: the physical, emotional, spiritual, and social activities provided to support and facilitate the caring effort. Everyone on the team requires this support to effectively perform the demanding work required in end-of-life care. The support provided by the team is dynamic, with team members supporting each other; patients often support the team. The more completely care needs are identified and the closer the caregiving team works together to support the consensus, the better the end-of-life period will be for all persons involved
Understanding the physician’s relationship with the patient and family, professionally and personally, helps clarify the physician’s roles. Three complex roles are described for physicians: consultant, collaborator, and guide. The roles will be discussed from the perspective of providing care to patients and families who are facing the end of life.[2], [5], [41], [42], [43]
The consultant role is based on providing expert, professional information to the patient and family. It is associated with three major characteristics: authority, education, and referral. Authority is established by the information and care the physician provides. Education is the information that helps the patient and family understand the diagnosis, prognosis, and treatment. Referral is involving other health care team members in determining and supporting the plan of care.
Case 1, Continued. When you first suspected that Tom Williams had lung cancer, you sat down with him and Betty and explained to them the results of the chest x-ray and how far test results show it had spread. You told them that the diagnosis wasn’t proven and that, if confirmed, it was possible that Tom would be a candidate for surgery. This was followed by a discussion in which you explained other options, including chemotherapy, radiation, and no treatment at all. You asked if they understand the treatment options.
Once they understood the information, you asked them what they wanted to do. You provided them with expert information and answered their questions. It was up to them to decide what they wanted to do. When they asked you to help decide, you based your recommendations on the clinical findings, for example, “Well, this cancer looks pretty advanced, I suggest you consider palliative radiation and hope for the best with chemotherapy.” Tom was then referred to an oncologist for treatment.
The authority-based relationship you have with patients is based on your technical and medical knowledge. Another physician with equal or greater knowledge could serve the same role. The professional component is the major component and the personal component is a minor component of the consultant role.
In the role of collaborator, the physician discusses treatment and other options with the patient and family and works with them to achieve consensus on a treatment plan. This role embodies additional characteristics, including:
1. Coordination. Coordination is ensuring that all members of the team are providing the patient and family care that is harmonious with the treatment plan.
2. Facilitation. Facilitation is working with the patient, family, and other team members to implement the care plan.
3. Therapy. Physicians promote healing through discussions and actions with the patient and family regarding medical, psychologic, spiritual, and social issues of the care plan.
4. Team member. Acting as a team member by working within the care plan and using and respecting other team members’ skills.
Case 3, Continued. Initially, you tried to tell Mrs. Gregory she probably had liver cancer, but she did not want to hear bad news and did not believe you. She said she just had indigestion.
Now, a collaborative process begins. You need to understand what Mrs. Gregory means about not wanting to hear bad news. What does indigestion mean to her? Why is the diagnosis of cancer so unsettling to her?
You need to find a way to explain to Mrs. Gregory, in a manner she can understand, what you feel she needs to know about her cancer. You also need to learn which herbal remedies she uses and where she gets them. You need to conduct the same type of collaborative process with her daughters.
Once Mrs. Gregory and her family understand their situation, the physician can shape and mold the conversation to supply them with information as they ask questions. Additionally, they may be challenged with knowledge that the physician feels is important for them to know, even if they do not want to hear it.
At this time, information is incorporated from all other team members and providers, including the daughters and the naturopathic physician who is providing her herbal remedies. Ideally, the physician will understand Mrs. Gregory and what is important to her, and she will understand her illness and what is important to the physician. This is the point when Mrs. Gregory and her daughters can be asked what kind of medical treatment they want to pursue.
The relationship that develops when the physician is in the collaborator role is much deeper than that which results if the physician remains in the consultant role. Mrs. Gregory and her family have to want the physician to fulfill this role for it to develop. Both the personal and professional meanings of this role for the physician are important. However, by leaving the final decision on treatment with the patient and family, the physician leaves some professional distance and a lot of personal distance within the relationship. Whatever happens in the end-of-life period, it was the patient and family who decided what they wanted. The physician’s role is to understand their needs, educate them about the situation, and then support the choices they make.
The role of guide requires the physician to consult and collaborate with the patient and family to show them the way to accomplish their goals. The role of guide uses the physician’s greater understanding of the medical context. Guiding has 2 additional characteristics:
1. Advisor. The physician acts to promote a treatment plan that is most appropriate for the unique experience of the patient and family.
2. Advocacy. The physician helps the patient and family to overcome barriers impeding their care plan.
Case 4, Continued. You enter Mr. Sen’s room at the monastery with the hospice nurse. He appears to be in great pain; he is rubbing his stomach and winces when he moves. Next to his bed is a bowl that smells of vomit. Also in the room is another Buddhist monk, who looks much younger than Mr. Sen, and a young woman who appears to be the caregiver for Mr. Sen’s personal needs. They are sitting in opposite corners of the room. A translator was promised but is not present.
As you interview Mr. Sen, you sense that he understands much more than he admits. You ask him to rate his pain intensity on a 0 to 10 scale, and he indicates that it is severe, 8 or higher most of the time. When he takes his pain pill (30 mg of IR morphine) it goes away, but the pill makes him sick, and he refuses to take any more. The rest of the history and examination are consistent with nociceptive pain from the tumor, with perhaps a mild bowel obstruction.
You try to convince Mr. Sen to take his oral pain medication but do not succeed. You leave the room and talk with the hospice spiritual counselor. She knows a little about Buddhism and suggests you talk to a friend who has studied Cambodian Buddhism.
The friend tells you that taking pain medication goes against the Buddha’s teachings; anything that clouds the consciousness is unacceptable. Additionally, the volitional act of taking a narcotic goes against the teachings of the Four Noble Truths and the Eightfold Path. You also read a short book on the tenets of Buddhism.
You visit Mr. Sen again; this time a translator is present. Mr. Sen is in great pain. He is moaning softly and rocking but is able to focus during the conversation. He relates his pain is now consistently 10/10, yet he still refuses to take oral morphine. You ask him about Buddhism and its teachings, his position in the temple, and what he is trying to achieve with the life he has left. It becomes clear that Mr. Sen is a respected teacher who is trying to continue his teaching of meditation and enlightenment to his pupils, but the pain is getting in the way. He cannot ask for morphine or actively take it himself without violating his spiritual beliefs.
You tell Mr. Sen that you have a recommendation. He should try taking pain medication delivered by a subcutaneous pump. You explain that you feel it will greatly improve his pain control and that the dosage can be adjusted by the hospice staff if he feels it is making him sick (which you now understand to mean that it clouds his level of consciousness). He is unsure but agrees to try the pump.
You start a 1-mg-per-hour, continuous subcutaneous drip of morphine and allow it to be raised slowly by the hospice staff. The nurse insists that a 1-mg bolus capacity be included in the regimen, and, while you agree, you are pretty sure Mr. Sen will not ask for it. Within 48 hours, Mr. Sen’s pain is markedly reduced.
When you visit him next, the morphine infusion rate is 3.5 mg per hour, and Mr. Sen is sitting up, eating broth, and smiling. He thanks you for your suggestion. He never asked for the bolus option.
Mr. Sen has been helped during his end of life. By taking into account Mr. Sen’s values, a method of pain control was started that allowed him to attain his goals. The physician guided Mr. Sen based on his understanding of Mr. Sen’s destination.
There is danger in this role that is not present when you consult or collaborate. Mr. Sen may be guided toward a goal he does not want. Yet, without active physician involvement, it would be extremely difficult for Mr. Sen to find an acceptable method to relieve his pain.
Additionally, the relationship has gained deeper professional and personal meaning. Unlike the consultant role, the relationship is no longer based on professional knowledge alone; the physician is personally involved. For Mr. Sen and his community, the physician, as guide, cannot be easily replaced.
For experienced hospice team members, caring for patients like Mr. Sen is not overwhelming. When one member is not available, other team members share the professional caregiving role. However, physicians working independently may find that caring for end-of-life patients creates significant tension. What happens when the physician is at home and Mr. Sen has a problem? What happens when no one else knows Mr. Sen and his community quite as well as the physician and Mr. Sen’s quality of care is dependent on the involvement of that physician? Despite these difficulties, many physicians find serving as a guide can be personally satisfying.
Mastering each of these 3 roles (consultant, collaborator, and guide) is important for physicians to be able to deliver quality care at the end of life. None of them is more important than the others.
Which role the physician plays depends on many factors. What role do the patient and family wish? What role does the situation demand? What role is the physician most comfortable playing? Ultimately, the role or roles played will be defined by the relationship shared with the patient and family and the personal and professional meaning it has for all parties involved.
Ideally, physicians will have the ability to play all 3 of these roles, however, not all physicians will be equally adept at all roles. It is important for physicians to understand which roles they perform best and recognize when the patient or family needs support from a role with which they are less comfortable. Another person can provide this role, e.g., a member of the hospice team, a practice partner, a consultant, a mental health therapist, a clergy member, or your office nurse.[44], [45], [46], [47]
Death is a most profound and personal experience and affects each of us in singularly deep and personal ways. This is true for the patient, family, community, and caregivers, including physicians. Each patient and family has specific personal concerns, varied ways of relating to their physicians, and different perspectives on life and death. Each case provides unique challenges for managing a “good death experience.”[4]
In this section, we will explore the end of life as a unique personal experience. This requires exploration beyond disease and its treatment; it goes into the personal domain, the issues of being a person that fall outside the biomedical, disease-oriented model.
The concept of personal domain is useful to understand the experiences of the patient and family. Kubler-Ross has described individuals as functioning in physical, emotional, intellectual, and spiritual domains.[48] Domain implies an area over which a person exerts control. Personal domain is that highly private experience we call our life.
Medical culture focuses on its area of strength, the physical domain. How do physicians explore emotional, intellectual, and spiritual domains? Focusing on disease does not provide a framework for understanding what it means to be a person experiencing illness.[2]
During the past 2 decades, family medicine has embraced a broader model of medical care by promoting the biopsychosocial model.[49], [50] Physicians must discover for themselves the many aspects of the patient; at a minimum, what are the patient’s and family’s goals that drive what the physician should do. Exploring the unique domains of the patient, family, and physician as they deal with terminal illness provides insights for all involved.
To understand a person is to appreciate the different aspects of being that are not reducible and must be comprehended in their totality. Cassell describes numerous characteristics of being a person: personality and character, a personal history, experiences, family, cultural background, roles, a community and relationships with others, a political sense, activities, habits, an unconscious self, a body, a private self, a future, and a transcendent self.[2]
Cassell describes a threat to a person’s integrity as the mechanism of suffering. [2] According to Cassell, suffering is different than pain, and to understand suffering, one must understand what it means to be a person. Suffering continues until either the threat is removed or the person fashions a new sense of self that accounts for the changes causing the threat. Failure to understand suffering may inflict greater suffering on the patient and family. If family physicians cannot help patients and families deal with personal domains, then an enormous opportunity to relieve suffering has been missed.
Thoughtful consideration of the personal responses of patients, family, and physicians alike is important to the provision of quality end-of-life care. How well these responses are explored is related more to personal characteristics of the physician and the relationship with the patient and family than to medical knowledge. The effects of dying on the personal domain involve stress, rapprochement, and transcendence. Exploring some of the major issues in each of these dimensions will help in caring for patients and their families.
Confronting an incurable, terminal illness and its associated physical decline, multiple losses, and death is stressful for patient, families, and physicians.[51], [52], [53], [54] Powerful personal responses unavoidably affect all persons involved and the quality of care provided the patient. Successfully providing quality care in a highly stressful climate requires insight and the ability to create relationships with the patient and family that will guide management.
The patient facing death confronts a variety of stressors. The patient’s whole world is under attack. The loss of health is accompanied by the loss of the future and the threatened loss of the present and past, such as memories of relationships and achievements. The emotional reactions of the patient include shock, denial, anxiety, bargaining, depression, anger and hostility, guilt and shame, and acceptance. [8], [55]
Denial is a common reaction. Most patients overcome denial as they process the meaning of their dying and as the disease progresses. However, some patients adopt denial as a coping strategy and should not be forced to confront their death.[56] Denial may take the form of bargaining, trying to forestall or avoid death through any number of means.
Denial can present problems for the physician, as in the case of Mrs. Gregory, who does not want to hear any bad news. How can the physician confront her denial and inform Mrs. Gregory of treatment options? How can the anguish of Laura Gregory be handled? One response to denial is to proceed with increasingly aggressive medical treatments, waiting for Mrs. Gregory to either say “Enough!” or become so ill that her daughters take charge and ask for more palliative treatment. However, exploring Mrs. Gregory’s personal domain may open other treatment options.
Case 3, Continued. You know that Mrs. Gregory felt overwhelmed when she watched her husband die unexpectedly in front of her several years ago. You also know that she has expressed little overt grief; denial is her coping mechanism.
Despite this, it is important that you and she discuss how she wants her care provided in the event that something bad happens to her. She asks, “What do you mean?” You reply, “Well, as you know from your husband’s death, you can never tell when something might happen. Should something unexpected happen to you, what do you want me to do?”
This approach leads to a discussion regarding resuscitation orders, living wills, durable power of attorney, and specific concerns of dying, such as pain relief. This hypothetical, nonthreatening approach allows her to explain that she does not want aggressive treatments, such as cardiopulmonary resuscitation or hospitalization, and prefers to be home and free from pain.
The daughters are then called together to discuss issues of their mother’s denial and her wishes should she become seriously ill. Laura is helped to understand her mother’s denial is a coping mechanism and is given a referral to a support group and a bereavement counselor.
Anxiety differs from fear in that it is an apprehension in the absence of a specific danger. Anxiety accompanies most change. The family physician can help patients manage their anxiety by exploring the specific fears they harbor and listening with an empathetic and perceptive ear. After helping patients name their fears, the physician can provide appropriate education and reassurance that addresses specific sources of anxiety and implement appropriate intervention to minimize some fears while acknowledging the reality of others. For example, understanding Mr. Sen’s fear of pain management that compromised his religious beliefs allowed the creation of an acceptable pain management plan.
Most end-of-life patients harbor at least two basic fears: pain and abandonment.[57] Additionally, the anticipation of actual losses and associated grief are endless, such as the unknown; loneliness; loss of family, friends, self-control, body parts, identity, roles (e.g., parent, lover, or provider); disability; sorrow; dependency; and concerns related to actual death–mutilation, decomposition, and premature burial. [8] These fears and anxieties need to be addressed as part of care and can best be understood by the concept of “total pain,” including not only physical pain but also the mental, social, and spiritual pain that end-of-life patients suffer. [56]
Grief associated with serious illness is often difficult to discriminate from depression. Grief is a part of the “working-through” process for patients and cannot necessarily be relieved by medication nor treated in the same way as a less-serious loss.
Patients at the end of life must adjust to the thought of losing all connection to the worldly things they hold important. It is important for the physician to determine if the patient is experiencing more than appropriate sadness for the situation and has developed a true depression. Classic vegetative signs of depression can be mimicked by disease and its treatment. Thus, exploration of feelings of hopelessness and lack of meaning is much more valuable in judging whether depression exists.
Paradoxically, depression may present with signs of hyperactivity, restlessness, or somatic features. These patients rarely become suicidal, and unrealistic assurances of hope are of little help. [56] Patients should be provided a forum to discuss their sense of loss, receive affirmation, and draw strength to work their way toward acceptance of their condition.
Case 5, Continued. You are now visiting Mrs. Sando and her son at their home on a weekly basis and have become concerned that she is depressed. She looks sad, eats little, and expresses little enjoyment of life or hope for the future. Is she depressed or is she just appropriately sad? You try to figure out what to ask to provide her the best care.
During your next home visit, you ask her how things are going, and she says, “Just fine, doctor.” You tell her that you are concerned she might be depressed. She begins to cry and says she is. You ask why, thinking she will talk about her fears of dying and increasing physical symptoms of CHF. Instead, you learn that her depression relates to unresolved issues with her son. She relates that her son has never forgiven her for divorcing her alcoholic husband, who later died in a car accident. In response to your suggestions that she address this issue with her son, she finally decides to write him a letter.
Together, you decide to try an antidepressant, paroxetine. Two weeks later, she still has not resolved her differences with her son but is feeling better.
A common fear many patients have is the belief that their terminal illness is a punishment for something they have done wrong or not accomplished in life. Trapped by their own perceived commissions or omissions, emotions, such as anger, anxiety, or sadness, erupt. In these cases, physicians can aid patients by not responding to the emotion directly, especially anger or hostility but, instead, by helping them to understand that illness is not a punishment. This task can be difficult; for example, Mr. Williams’ lung cancer may be directly related to his smoking.
The physician can avoid judging the patient by framing the disease in a medical model and by recognizing the patient’s feelings and allowing them to be vented without responding in kind. The physician can further assist by educating family members to accept emotional responses, especially angry responses, avoid confrontation, and address the patient’s underlying feelings, fears, and frustrations.
Guilt and shame are other stressors commonly experienced by patients. Often, patients review their lives, contemplate areas in which they did not behave according to their values, entertain regrets, and experience remorse for past mistakes. This can produce feelings of guilt for not having lived up to a sense of self that is thought to be important. Indeed, patients often experience guilt over the anger and hostility they feel as they confront their death.
Shame arises from perceptions of the “state of the self” as being “no good, not good enough, or defective.” [58] Patients often feel shame for their loss of control, dependence on others, and not living up to what they believe they ought to be for their family and friends. Self-reliance, independence, and autonomy are highly valued in the United States, and individuals whose illness creates dependence often feel shame and a loss of self-worth for failing to live up to these values. In this situation, the physician can assist by listening carefully to determine the sources of guilt and shame, normalizing these when possible, and helping the patient reframe perceptions in ways that are less painful.
Case 3, Continued. As Mrs. Gregory becomes increasingly ill, she can no longer live alone safely. She has been living in her home for 45 years. Her daughters offer to live with her or to have her live with one of them. She adamantly refuses. She won’t consider having hired caregivers in her home; moving to an assisted-living or nursing home is out of the question.
You arrange a family conference with Mrs. Gregory, her 3 daughters, and a hospice social worker. You ask Mrs. Gregory why she refuses any help, and she states that she doesnÕt want to burden anyone, especially her daughters, and she feels that once she lets someone in her home, she will lose all her independence. You agree with her that being a burden and losing independence are some of the hardest situations for anyone to face.
The hospice social worker asks if her daughters feel that caring for their mother is a burden. All 3 daughters say no; it is an intimate and meaningful way for them to repay their mother for all the years she cared for them and all the sacrifices she has made. Laura, whom you know feels that her mother never gave her enough emotional support or attention, says this is her last chance to have a truly intimate and loving relationship with her mother.
You ask Mrs. Gregory if she can give her daughters a gift, perhaps the most difficult gift she has ever given them–to allow them to care for her and give her their love and nurture, just as she did for them when they were young and needed her. Overcome with emotion, the first you have seen in her during this illness, she consents to having her daughters care for her in her own home.
By eliciting Mrs. Gregory’s fears, normalizing them, and then reframing them, you have allowed her to understand her need for care not as a burden on her children and a loss of independence but as a gift and a way of connecting to her family in a deep and meaningful way.
Acceptance is usually marked by patients recognizing that they will die. With acceptance, patients often become more peaceful, treasuring their moments with family and friends. They may also begin to withdraw from the world, preparing themselves and their loved ones for their death. Acceptance may be difficult for patients who have young children or grandchildren and who feel that death is robbing them of needed time with loved ones who are dependent on them. However, in most cases, patients come to accept their mortality and impending death. Faced with a limited future, patients often develop a profound appreciation of the present moment and an acceptance of the world and others, warts and all, as an affirmation of the value of life and the joy of simply being alive.
Having settled accounts with life, the patient who has reached acceptance often shows a refreshing equanimity that is often lacking in those distracted by the toils and tensions of busy living.
While the issues surrounding the personal confrontation with death are powerful and profound, so is the potential for growth on the part of the patient. To be a witness to such events can be an affirmation of the power of the human spirit to transcend tragedy and suffering with grace, dignity, and purpose and is one of the greatest rewards of caring for patients in the end-of-life period.
The technical, ethical, social, psychologic, and spiritual issues comprising quality end-of-life care challenge the family physician to the highest callings of the medical profession. When caring for dying patients, physicians confront their personal vulnerability to death [59] and must develop a “high level of insight, maturity, and self-knowledge.” [60] The provision of quality end-of-life care can be a catalyst for personal development because it requires self-awareness, insight, and a metaphysical or philosophical perspective that brings dignity and meaning to death.
Western society is uncomfortable with death and prevails on the physician to have mastery where none exists. [61] Also, physicians are fallible human beings laboring under the expectation of perfection and occasionally bearing the responsibility for errors that contribute to a patient’s death. [57], [62], [63] In this context, the death of the patient can take on an even more ominous tone, a challenge to the physician’s competence or a proof of the failure to do no harm, thus, leaving the physician frustrated and guilty. The challenge for the physician managing end-of-life care is recognizing the limits of medicine and assisting the patient and family to accept the inevitability of impending death while helping patients toward an end-of-life experience that is graceful and balanced.
Case 5, Continued. In response to the Sandos’ request for a meeting, you arrange to meet with them at the end of the day when you have time to answer the many questions you know they are sure to have. You begin by soliciting their understanding of Mrs. Sando’s medical condition. She appears to understand that she is failing, but her son is confused as to why more is not being done. Gently, you introduce the ideas that Mrs. Sando’s problems are incurable, progressive, and terminal. After answering questions and processing the immediate feelings that arise, you suggest that the goals of care should be to avoid inappropriate treatments and to promote living with quality until death. Mrs. Sando and her son can now consider what comprises a quality end of life and the resources needed to achieve this. Gradually, a care plan begins to take shape.
To be compassionate is to suffer with another; thus, compassionate physicians experience the suffering of their patients and families. In the case of Tom Williams, Jr., he is deeply scarred by his grandfather’s painful death, memories of which are recalled by his father’s present discomfort. These memories underlie his antagonism toward the physician. To witness such suffering is not easy and can lead caregivers to respond in a self-protective fashion:
“Denial, abstraction, pity, professional warmth, compulsive hyperactivity; these are a few of the ways in which the mind reacts to suffering and attempts to restrict or direct the natural compassion of the heart. This tension between head and heart leaves us tentative and confused. As we reach out, then pull back, love and fear are pitted against one another. As hard as this is for us, what must it be like for those who need our help?” [64]
Staying engaged with dying patients and their families is imperative but draws heavily on the personal qualities of the attending physician.
Included in the physician’s role are a variety of realities that are, in themselves, stressful for the patient, family, and physician. The sharing of the diagnosis is painful for all because no one likes to give or receive bad news. Occasionally, ethical mismatches between the physician and the patient or family lead to disagreements in reaching a consensus regarding the goals of care. Mr. Williams and Tom Jr. have already clashed in this regard, as Mr. Williams previously declined an experimental protocol offered by the oncologist, leading Tom Jr. to stomp out in frustration, thinking that his father was giving up. These kinds of clashes are common, particularly with distant relatives who have not had time to process the meaning of events. These conflicts can be sources of great pain in families and present challenges when the family and patient turn to the physician for guidance.
Patients are free to seek treatments the primary physician considers futile but for which protocols exist, and refusal is not a viable option. This places the primary physician in the position of participating in care and witnessing the patient’s continued suffering or abandoning the patient by relinquishing care to another physician. Although the physician may be certain of the terminal diagnosis, uncertainty hampers consensus and eliminates the ability to provide assurance regarding the exact timing or circumstances of death, concerns of great importance to patients and families that the physician is helpless to allay. As with the Williams case, you can address Tom Jr.’s questions but guarantee no truly satisfying answers.
Cultural differences are another stressor for the physician. The family physician is challenged to understand traditions that may seem foreign and address spiritual issues that may be unfamiliar. The use of an interpreter introduces a third party to the medical interview and complicates an already challenging situation. The use of a family member as interpreter poses problems for the physician wishing to protect the patient’s privacy and is to be avoided if at all possible. [65] In the case of Mr. Sen, the absence of an interpreter posed yet another problem that hampered the clarity of communication.
A useful approach to the challenges posed by cultural differences is to elicit from patients and families their understanding of the illness, the role of the physician, and their traditions about death. With Mr. Sen, understanding the interaction between the patient’s religious beliefs and the use of pain medication provides insight leading to the suggestion of an analgesic delivery system that is philosophically and spiritually agreeable to him.
Accessing resources within a community is important and can usually be accomplished by asking community leaders who are knowledgeable about particular aspects of the traditions of that community. Some questions for eliciting patients’ explanatory models of illness can be found in Table 5.
Another source of stress for physicians caring for dying patients lies in the nature of the personal relationship between physician and patient. A common scenario involves the patient who is close in age to the physician or to someone the physician loves. This activates the sense of mortality described earlier and can increase the physician’s stress. Physicians also struggle with personal feelings of loss when the patient is well known, perhaps a friend or a favorite patient. To care for individuals is to become a part of their lives, to blend one’s life story with theirs. When this occurs over time and through significant life events, as often happens for family physicians, the process of patient care creates bonds that the physician mourns when the patient dies.
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Table 5
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| What do you call your illness? What name does it have?
What do you think has caused your illness? Why do you think your illness started when it did? What does your illness do to you? How does it work? How severe is your illness? Will it have a short or long course? What do you fear most about your illness? What are the chief problems caused by your illness? What kind of treatment do you think you should receive? What are the most important results you hope to receive from treatment? |
The death of the patient also closes a chapter in the physician’s life, which can be very stressful. In the case of Mrs. Sando, she has been your patient for years – the first patient you ever saw in your practice, the first to ever call you “Doctor” in your office. Her death will be the loss of a witness to your beginning in medicine, the silencing of a testimony to the start of your career.
Managed care can be another stressor for physicians attempting to provide quality end-of-life care. Business realities can encroach on the time available to spend with the patient and family. Home visits may be difficult to arrange and family conferences nearly impossible to schedule. The physician may experience frustration and guilt over not being available for the patient and family. A referral to hospice appeases some of these concerns but may raise other stresses.
Physicians providing end-of-life care must deal with the ethical issues of dying. While it is not within the purview of this monograph to detail all of these issues, assisted suicide is receiving increasing attention as a growing “right to die” movement reflects public dissatisfaction with end-of-life care. Euthanasia implies a compassionate death or the right to means for prompting the same. While 6 types of euthanasia are described, “double effect” is the type of most concern to the practicing family physician.[66] In this situation, treatment aimed at the relief of suffering may have a secondary effect that hastens death, even though death is not the intention of the treatment.
Case 1, Continued. It is clear that no matter what medical interventions are implemented, Mr. Williams will die within the next few days or, at most, within a few weeks. The use of high-dose narcotics will relieve his pain but carries the risk of suppressing his respiratory drive and perhaps hastening his death. The only issues remaining are under what circumstances–in excruciating pain or in comfort–and at what moment he will die.
In your discussions with Mr. Williams and his family, it is clear that their goal is to provide maximum comfort and quality of life in his remaining time. Thus, prescribing morphine is agreed to by everyone. Mr. Williams may die sooner, but his comfort, not his death, is the primary goal.
All Western legal and philosophic traditions uphold “double effect” as ethical and moral, based on compassion and relief of suffering. You assure them that their choice is one of compassion and adjust the dose of medication to relieve the obvious pain and agitation Mr. Williams is suffering.
Many challenges confront the family physician during the death process, including:
1. Confrontation with mortality;
2. Repeated witnessing of suffering;
3. Inevitable encounters with limits and fallibility;
4. Bearing bad news;
5. Potential ethical conflicts;
6. Uncertainty;
7. Meeting the needs of diverse patients and their families;
8. The pressure of managed care;
9. The potential for requests to prematurely end suffering;
10. The sense of personal loss of a valued patient-physician relationship.
While stressful, these challenges also foster personal growth and development for the physician, which are some of the rewards and satisfactions of end-of-life care. Which issues in the list above provoke the most stress in you? How do you deal with this stress? Are your coping strategies effective, and do they help you deliver quality end-of-life care? How might your biases impede your ability to deliver good care?
Family members also suffer from the impending loss of a loved one. The family experiences many of the same issues confronting the patient, often in mirror image. Anticipatory grief begins as soon as the family learns of the diagnosis. This grief involves coming to terms with the impending loss and entails a variety of adjustments in the relationships with the patient. [67] Family members face the delicate task of remaining involved with the patient while simultaneously maintaining separation from the patient so as to not perceive the patient’s death as tantamount to their own.
Loss of a family member inevitably brings multiple changes in familial roles. These changes must be recognized and accommodated as the family restructures itself. Achieving these changes depends on skills that may need to be acquired, and different families achieve change to varying degrees. In the case of Betty Williams, she will need to learn practical skills, such as driving and managing finances. Also, she will need to assume a more independent role in managing her life or find someone else to replace Tom’s dominance.
Family members must also adjust to feelings that accompany their impending loss, including feelings from prior losses and conflicts with the patient. Tom Williams, Jr., may need help resolving his anger at his father not pursing more aggressive treatment options, as well as adjusting his feelings regarding his grandfather’s death.
Families must also come to terms with the reality of the impending death and say goodbye, acknowledging that leaving will occur. Mrs. Gregory and her daughters faced the difficulty of adjusting to these issues when they could not openly discuss the fact that she was dying.
It is important for the family physician to establish relationships with family members that embody the safety necessary to permit vulnerability and the sharing of anxieties and concerns. This task entails identifying concerns and then making them legitimate. Family fears, like those of the patient, are often nonspecific feelings. Helping to identify concerns gives insight into what type of reassurance is needed for both the patient and family.
Meeting with Mrs. Gregory’s daughters is imperative to help them develop a plan for how they might approach their mother and support each other. Helping Laura understand the source of her mother’s denial and making a referral to appropriate support resources helps ease her tension. For example, knowing that Tom Jr. is the computer buff in the Williams family lets you refer him to Internet sources that can provide him greater insight into the reasons behind his father’s refusal of experimental treatment.
Tension can arise when the patient and family members are at different points in the grief process. We see this in the case of Mrs. Sando and her son. Mrs.Sando was much more accepting of her diagnosis than was her son. She experienced her gradual failure, had daily reminders that she was deteriorating, and, therefore, needed only an open, honest discussion to confirm her suspicions and begin the process of planning for a quality death. However, her son was shocked by the diagnosis and needed a lot of discussion to help him understand the limitations of medicine and that there was no cure for his mother’s illness.
The family physician is a key source of information by being able to project what might happen to the patient. Knowing what is natural in the disease process makes the physician a source of control for many patients and family members. Helping families to realize that there are a variety of styles for grieving and effecting closure can free family members to express themselves more openly and honestly. Reframing emotional responses, such as crying, as healthy aspects of the grieving process allows individuals to feel unashamed when they lose control. Legitimizing the tension between grieving and trying to get on with living is also helpful.
As death becomes imminent, educating the family regarding what to expect is helpful, particularly if the patient is to die at home. All family members should be welcomed to a family conference and have a chance to pose questions, clarify concerns, and receive information to help them understand what is to come.
Coma can be described as a natural process by which the patient draws inside to prepare for dying. It is important to assure family members that, while their loved one cannot respond and does not feel pain, comatose patients might be able to hear, and endearments, assurances of love, and goodbyes should be shared. [68], [69], [70], [71]
Family members may also need permission to give sanction to their loved one to die, freeing the patient from any need to hang on for the family’s sake, while at the same time eliminating any guilt the family may feel for “giving up on” the patient.
While many family members will want to be present during the dying, others will find this intolerable and need permission and legitimization to withdraw.
Although family members may want psychotropic management of their distress, it should be offered judiciously so as not to cloud the sensorium and impede natural grief processes. Attendance to these details during the patient’s dying can relieve many unneeded sources of stress for family members.
Case 1, Continued. When Mr. Williams was being cared for at home and comfortable from the pain relief you prescribed, you received a telephone call from Mrs. Williams who was distraught. Her husband was hanging on, and she thought he might never die and stay in the comatose state forever. You knew that Mr. Williams was always worried about how Betty would survive without his help. You asked her if he might be hanging on for her. Had she told him that it was OK for him to die? Had she told him that their children would help her?
She hadn’t told him anything like this and promised to do so. You were not surprised to receive a call from the family at the end of the day saying Mr. Williams died peacefully a few hours after his wife gave him permission to leave her alone in the world.
The technical abilities of the family physician in treating the patient’s pain and related symptoms accompanying death are extremely important in thepsychologic care of the family. Aggressive management of pain and related symptoms relieves the patient’s distress and also assists the family to be comfortable by preventing memories of their loved one dying in agony. [56] Preventing such memories is much easier than trying to erase them.
In summary, the physician helps families by providing permission to explore and normalize their responses, encouraging family members to share their responses with the dying patient, suggesting ways to effect closure, and providing concrete medical services that reduce the ordeal of dying.
Rapprochement is resolving unfinished business and creating experiences to effect closure that lasts beyond the end-of-life experience. Rapprochement is an important issue for patients, families, and physicians. The etiology of rapprochement springs from the human need to create sense and meaning from our experiences, particularly from the imperfect world and the sometimes fragile and difficult relationships that bind us. Most relationships have some unfinished business, and most patients and their families have issues that should be settled before death separates them. As these issues become settled, energy previously bound in conflicts is released and encourages people by introducing hope and lightening psychologic burdens.
A key question that helps patients, families, and physicians identify issues needing rapprochement is: “If the patient or you were to die tonight, is there anything you have not said or done that you would regret?” Patients and families can then be told that they should resolve these issues so that they will not have needless regrets. Five statements are important to create closure in relationships: [72]
I love you.
Do you love me?
I forgive you.
Do you forgive me?
Goodbye.
Expressing love and getting assurance of love is important to strengthening ties at the end of life. Unfinished business can give rise to the need for forgiveness, the granting of which benefits all. Lastly, effecting goodbyes facilitates closure and allows people to let go of the relationship as previously experienced.
Other issues involved with rapprochement concern creating rituals that allow patients to let go of this world and prepare the living to grieve and create a new life after their loss. Rituals establish a legacy for remembering the patient that the family and community can share for years to come.
For the patient, resolving conflict releases energy to contemplate the meaning of life and to prepare for impending death. Key to this is becoming reconciled with the reality of mortality, understanding and accepting death as a part of life rather than as a punishment. By settling conflicts, patients resolve guilt that may tie them to the world allowing them to move to a stage of detachment from active involvement in the world. As issues are resolved, a shift in values often moves patients toward treasuring the present.
Tom Williams, Sr., began this shift when he chose standard treatment and rejected the experimental protocol. He told his wife that he had experienced enough treatment. They began to discuss his impending death and regrets regarding things they had hoped to share but could not now.
Family members face challenges similar to those of the patient. As the disease progresses and death becomes imminent, role changes create new family dynamics that can help effect closure for survivors. This may include deeper, more honest, and closer relationships than the family members shared previously. For Tom Williams, Jr., this took the form of his breaking down, crying, and sharing his grief over his father’s death with his younger brother and sister; by this, he relinquished his previous role as the oldest child who was always in control.
The loss of a family member is a potent reminder of the fragile and tenuous nature of life and can occasion a reassessment of values that, in turn, changes perceptions of the importance of past slights or indiscretions. It is not unusual to see grief motivate reconciliation of previously estranged family members.
Case 5, Continued. During one of your home visits to the Sandos, you have the chance to speak privately with Tony. Being aware of an unresolved conflict between them regarding the divorce and death of his father, you take the opportunity to ask him how things are going. You explain to him that his mother’s condition is getting worse. You ask him if she died tonight, is there anything he has not said or not done that he would regret? His demeanor changes, and he begins to tell you a little about his anger regarding his parent’s divorce and the subsequent death of his father. Twenty years ago, he angrily accused his mother of driving his father away to his death. He wants her to know that despite what happened, he loves her and regrets the pain it has caused both of them over the years. You encourage him to share his feelings with his mother. Later, when visiting Mrs. Sando, she appears a bit calmer. On inquiry, her eyes brim with tears and she softly says, “Oh, Tony and I finally buried an old hatchet.”
Physicians also face their own issues of rapprochement. These entail regrets about the inability to do more for the patient, perceived deficiencies in care, and the loss of what may be a valued relationship. The physician may need to resolve these issues with the patient and family to lighten the burden associated with caring for them. It is particularly important to create a psychologic climate that allows the physician to be present and engaged with the patient and family. After the patient’s death, attending the funeral can be healing for the physician and helps bring closure to the relationship between physician and patient.
Taking time to reconcile personal feelings regarding the death of a patient is important to the physician’s abilities to provide end-of-life care throughout a career. Physicians must give specific attention to their personal feelings to prevent their grief from being lost in the practice of medicine and suffering neglect that leads to detachment from the pathos associated with end-of-life care and emotional abandonment of the patient.
Case 3, Continued. Laura Gregory calls and tells you that Mrs. Gregory has died peacefully at home. This news fills you with sadness. It also makes you uncomfortable, and you are not sure why. Lots of patients have died before, but none has affected you this way. You figure it will go away in a few days, but it doesn’t. What would you do to create rapprochement with Mrs. Gregory?
After talking with the hospice medical director and the bereavement counselor, you decide to do several things. First, you call Mrs. Gregory’s daughters and ask to meet with them. You ask how they feel about their mother’s death. In particular you want to know:
1. Were their mother’s symptoms well managed and her pain controlled?
2. Did they and their mother have adequate emotional support?
3. Were there any social interactions with health care providers that were difficult for them or their mother?
4. Are there any other issues they would like to discuss that would help you provide better care to other patients and families in the future?
Your discussion is satisfying, especially because of the many appreciative comments made about the care you and the hospice team provided. They particularly appreciate how you helped their mother accept care from them. You tell them of your sense of privilege from the opportunity to help them during such a difficult process. Later, you make a contribution in Mrs. Gregory’s name to her favorite charity. Lastly, you go to the annual hospice memorial service. There, you meet the hospice team and the daughters, and you all share stories about how you worked together and what has happened since the death. You find yourself feeling much better about things and look forward to working with the hospice team in the future.
There are many methods of helping patients and family effect rapprochement. One method is creating positive memories. For example, patients can write letters to their loved ones for them to open on special occasions, such as becoming a teenager, graduating, getting married, or on the birth of a child. Audio- or videotapes can be used in a similar fashion. If time and circumstances allow, the patient can also dictate or write a personal history to be passed on to family members. These types of activities help patients clarify their feelings and create a way their thoughts, dreams, and wishes can be conveyed to their loved ones. They leave a legacy for families who will be able to recall warm memories from the experiences shared with the deceased.
Case 3, Continued. During the remaining weeks of Mrs. Gregory’s life, her daughters took her on an outing with them and her grandchildren. They went to a holiday festival, making sure to take photographs. A videotape was made of an incident when granddaughter Lisa, fearful of sitting on Santa’s lap, was sitting on one of Santa’s knees and “Grandmama,” caught up in the moment, perched on the other.
The daughters also encouraged their mother to begin recording her personal history by purchasing a tape recorder and asking her to describe important events of her childhood, anecdotes from her family, and other aspects of her life. Mrs. Gregory asked why they would want her to do such a thing and they replied: “You know, Dad died so suddenly that we lost a lot of his life’s story. We don’t want something unexpected to happen to you and then feel like we’ve lost the other half of our history.”
The resolution of unfinished business before the death of the patient leaves everyone with less emotional “baggage” to process after the death occurs and helps limit prolonged grief related to unresolved conflicts. Family physicians may be aware of issues needing resolution and may encourage patients and family to see that resolution occurs. Physicians must also tend to their own feelings that need resolution and effect their own closure so as to enhance their abilities to be emotionally open and available to patients and their families.
Humans have a transcendent dimension, an ability to see beyond themselves into realms of existence beyond death, which is a key to coping with the end-of-life experience. Transcendence shares an important relationship with suffering because suffering often opens those spiritual aspects of being that expand the meaning of existence and foster transcendence. [2], [48]Conversely, transcendence helps allay suffering. “The sufferer is not isolated by pain but is brought closer to a transpersonal source of meaning and to the human community that shares those meanings. Such an experience need not involve religion in any formal sense; however, in its transpersonal dimension, it is deeply spiritual.” [73]
Understanding the transcendent aspects of end-of-life care involves appreciating spirituality, which is poorly understood by science and generally ignored by medicine. Physicians seeking to understand spirituality must accept forms of truth that are not scientific.
Spirituality refers to “the basic experience of persons in relationship to their world view, a value system, and a sense of the ultimate, if it is present.” [74] Spirituality is not synonymous with religion and should not be confused with a faith tradition, although many patients define their spirituality within the parameters of a particular religious faith. Spirituality is an essential need of human nature, varying in degree from person to person, but it is present in everyone and sharply focused by serious illness:
“It is as if the process of illness, limitation, suffering, the shocking isolation of a brutal disease, awakens in us the seeker, which is so much more than the scientist. We begin to sort values, what matters, and what doesn’t. We become open to looking at the meaning of life, not just the meaning of pain, of one’s own pain, but even the meaning of life itself .[75]
To understand the spirituality of patients is to understand that part of their being that is seeking to find in the experience of dying meanings that transcend death. Clergy or spiritual communities may provide patients solace and guidance. Other patients are not connected to spiritual communities and are isolated in their spiritual concerns. It is important to conduct a spiritual assessment of the patient, a task that may feel foreign and strange to the physician.
The spiritual assessment of the patient develops as the relationship between the physician and patient deepens. It is useful to have two sets of questions: one for patients who are members of a religion and another for those who are not. [76]
Examples of questions for religious patients are:
Tell me how your religion is helpful to you?
Tell me how God functions in your daily life?
Examples of questions for other patients are:
What helps you calm your anxieties?
What (other than people) do you call sources of strength, help, or hope?
Physicians may feel uncomfortable discussing spiritual matters with patients, but a judicial exploration of spirituality helps determine issues of importance to the patient. Questions for exploring the spirituality of patients are summarized in Table 6. [77]
Exploration of the patient’s spirituality often reveals issues associated with the past, present, and future. [78] Issues of the past may involve feelings of guilt, shame, and trust. As the threat of impending death challenges religious faith, guilt and shame can arise from a loss of faith, leaving an individual feeling alone and isolated. Although the physician may in no way share the patient’s faith tradition, regular physician visits may temper the patient’s feelings and are implicit statements of the patient’s worth. Members of the patient’s religious community can also play a large role in reconciling these differences.
Case 5, Continued. As Mrs. Sando’s disease progresses and regular physician visits continue, she begins to talk more openly about her growing awareness of death as evidenced by her increased limitations. You ask how she is coping with this problem, and she says, “Well, you know, the best I can.” You inquire as to what helps calm her anxieties and gives her strength, and she says, “Well, I pray, and I’d like to go to church, but it’s been a while so I’d feel funny going.” She was raised a Catholic; after her divorce, knowing the church did not approve of divorce, she felt self-conscious and guilty and stopped attending. Now she feels alone and would like to return but considers this hypocritical and fears rejection. You affirm that you can see how this might be a struggle but suggest that she might consider having a priest call on her at home to discuss her feelings. She says she will think about it.
Faith involves the ascription of validity to a set of beliefs. [79] In most cases, patients can be assured that doubt is the complement of faith, a struggle with the validity of their beliefs, whereas apathy is the opposite of faith. Patients struggling with doubt may receive some comfort from the knowledge that doubt does not mean they have lost faith but, rather, are examining their faith. The physician need not share the patient’s belief system to understand these aspects of faith but, rather, need only comprehend the relationship between faith and beliefs and appreciate the importance of these to patients facing the end of life.
Spiritual health entails understanding illness in a way that allows patients to cope with dying. Helping the patient learn to live each day can do much to relieve fear and suffering. This can be facilitated by giving anticipatory guidance to the patient and family regarding how to gain the most from each day. [80] Patients should be encouraged to return to their normal routines as soon as possible, meeting their responsibilities, and taking pleasures from each day.
Activities can provide meaning but should not be done to excess; for example, Mr. Sen has remained a part of his religious community, teaching and meditating with his pupils. He is using his death as a method of instructing his pupils about the management of suffering so that they might have morefulfilled, spiritually aware lives. Although he can spend less time meditating and his lessons become correspondingly abbreviated, Mr. Sen remains a model for his pupils.
Spiritual issues concerning the future include hope, the mystery of death, and religious responses. [80] Hope is “a multidimensional dynamic life force characterized by a confident, yet uncertain, expectation of achieving a good future which, to the hoping person, is realistically possible and personally significant.” [81] Hope protects patients from the ravages of despair and is an active, adaptive mode of coping with uncertainty. [82] Hope permeates all spheres of a patient’s life and expresses, as Stephens, a family physician, has described, “the possibility for something unexpected.” [83] As Shakespeare observed, “The miserable have no other medicine but only hope.” [84]
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Table 6
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| How do you express your spirituality? How do you feel about your current spiritual practices?
How would you describe your philosophy of life? How are you feeling about your philosophy of life at this time? Do you have a philosophy about illness (or your illness)? How do you understand hope? For what do you hope? What helps you the most when you feel afraid or need special help? What is especially meaningful or frightening to you now? How has being sick made any difference in how or what you believe? Whad do you think is going to happen to you? What does death mean to you? Do you believe in an afterlife? Do you have feelings of bitterness or resentment towards anyone? How do you handle feelings of bitterness, resentment, guilt, or anger? Do you desire spiritual support to deal with such feelings? Do you have any unresolved guilt or anger surrounding your illness or about the illness itself? What are the most important relationships in your life? Why are they important? Would the loss of any relationship change the purpose of your life? Do you feel a source of love from God or any spiritual being? Has spiritual support been helpful to you in the past? What is your source of strength during this illness? |
Physician strategies for enhancing hope include being available, moving from curing to caring, reflecting honest empathy, exploring emotions, and emphasizing the positive.[85] Availability is a basic method of caring by not withdrawing physically or emotionally from the patient. As time progresses and the relationship with the patient deepens, issues arise, as with Mrs. Sando, that afford an opportunity for input.
With the switch from cure to care, treatment efforts foster the hope of controlling symptoms to provide a better quality-of-life experience. Thus, Mr. Williams is given a peaceful death free from pain. Similarly, Mr. Sen uses a nonvolitional pain medication-dispensing system that allows him to deal with the suffering of his disease while not willfully taking medication, thus maintaining his position as teacher and model until his death.
It is natural for patients to hope for a cure, and excellent physician communication skills are needed for the patient to retain hope for the miraculous while focusing efforts on the almost-certainty of death. Information needs to be scaled to the patient’s capability for understanding and shared. Attention to the patient will reveal cues as to how much information the patient might be able to understand at any one time.
Exploring emotions involves listening to how the patient and family are experiencing the dying process. This produces opportunities to suggest that conflicts might be resolved, endearments shared, and intimacies communicated, thereby helping bring closure. By emphasizing the positive, the physician focuses on what the patient might achieve rather than dwelling on losses or the improbable, preserving the possibility for things to be different and the unexpected to occur. At the very least, becoming more loving and lovable is very important to many patients and their families. The physician can help by maintaining contact with the patient and family and acting as a catalyst to encourage healthier, more loving relationships.[78]
Death is a mystery to the patient. Exploring concepts of death helps patients clarify their thoughts and feelings about dying and helps patients and families adjust to the reality of death. Addressing issues such as how symptoms will be controlled, beliefs in an afterlife, creating wills, fears about what precedes death, what happens when an individual dies, and planning for funeral arrangements provides opportunities for patients and family to face the reality of death and plan for transcending the event.
In some cases, family members need protection from making promises that are impossible to keep and that may result in increased guilt for not carrying out the loved one’s last wishes.[78] Attempts to honor requests such as, “Never sell the house,” or, “Always keep my garden because you know how important it is to me,” can keep survivors from moving on to a healthy life of their own.
Religious responses are often associated with transcending death, and all major religions encompass rituals aimed at supporting dying patients and their families. Religious rituals also provide relief for the family, helping them to accept the loss and to move on in life. When religion is a part of the lives of the patient and family, it may assist them to move beyond death through assurances of a future together in a transcendent realm.
If the family physician shares a religious perspective with the patient and family, spiritual aspects of care may be incorporated into the relationship. Shared prayer may be appropriate as the physician joins the patient and family in important spiritual rituals.
However, if there is no shared spiritual tradition, such involvement is foreign and inappropriate. In this event, assisting patients to obtain support within their community of affiliation or referring patients who do not have such a community to appropriate spiritual advisors becomes an important aspect of spiritual care. Mr. Sen is an example of this issue; he faced his death with the comfort of being surrounded by his pupils in a community of believers within a faith tradition that was foreign to his physician.
The transcendent aspects of care of the dying may be difficult for physicians to appreciate. Yet, the mystery of death and the gravity of suffering also affect the spirituality of the primary physician. Exposure to death stimulates contemplation of one’s own spirituality; it activates the seeker in oneself. Unresolved feelings surface, and fears of mortality arise that, if left unaddressed, may affect the ability of the physician to suffer with the patient and family and provide compassionate care.
The physician may withdraw into a protective way of relating to the patient, attempting to minimize the impact of caring for dying patients and their families.[71] For this reason, physicians dealing with end-of-life care are challenged to manage their own spiritual issues. This need not be approached from a religious perspective but does require the thoughtful development of a spiritual or metaphysical perspective that provides meaning in the face of suffering, debilitation, and death.
Take a moment and reflect on your spiritual framework:
What does death mean to you?
What are the emotions, thoughts, and reactions you experience as you witness the grief, loss, and death of your patient?
How do you grieve?
These questions are important to consider; physicians cannot be expected to lead patients and families to places where they are afraid to go themselves.
Bereavement is a natural reaction to the loss of an important relationship. Helping patients and families understand the grieving process and finding ways to support them when they are expressing grief are important tasks for family physicians. Bereavement begins with any serious loss. For the patient and family, anticipation of death and the losses occurring up to the time of death create a profound sense of grief that may be described as anticipatory grief. For patients, anticipatory grief prepares them to let go of this world and prepares them for death. For families, anticipatory grief prepares them for the death of their loved one and the continuation of life.
Case 2, Continued. After Ms. Moore’s pain is adequately controlled, you ask her what issues are important to her. She answers that she is concerned about how to assist Oscar and her 2 daughters, Alicia, aged 8, and Sarah, aged 11, and how to deal with her impending death.
Wendy relates how devastated she was when her father, whom she adored, had a heart attack and died suddenly when she was 13 years old. She was not allowed to attend the funeral, and his death was never discussed by her mother or siblings.
While bereavement was difficult, Wendy speaks of how her bonds with her father have influenced her. She describes receiving an outstanding student award in sixth grade; her proud and beaming father was in the audience. His support and memories of him helped Wendy succeed in school and become the only member of her family to earn a college degree. As she describes her relationship with her father, she becomes increasingly animated. She relates how her father would take her to church, and they would sing together in the choir. Wendy’s strong faith and love of music were born from these experiences.
Wendy has modeled her parenting on her father. She is wisely attempting to help Oscar and her daughters prepare for her death and resulting bereavement.
The expression of bereavement is shaped by our dominant social and cultural values. During the 19th century, emphasis was placed on personal loss, and elaborate, public expressions of survivor grief developed. [86] These included large monuments, visits to graveyards, wearing black mourning clothes, and hanging pictures or embroidered pieces in the home in memory of the deceased.
Today, the expression of grief has changed and is more private; pain and loss after a death are personal matters. Public mourning traditions are less common. Grief is no longer a communal issue but an individual one.
Grief has been perceived as an illness, something to be gotten over, something from which one will recover: “The image created is that grief is a germ that has infected the body and can be expunged with proper treatment, rather than something that changes the ways in which people live their life. Most theories of grieving rarely mention the meaning of the relationship that is lost and the larger disruption in living that the mourners experience. Their goal is to explain how an individual mourner can arrive at a place where grief ends. This end is reached by passing through a series of tasks or steps. By following these steps, grief will end, and the mourner can return to normal functioning as quickly as possible. Mourning is made simple.”[87]
Modern views of grief no longer perceive it as an illness. The relationship between the bereaved and the deceased does not end with death. Instead, grief and bereavement are lifelong processes. The bereaved maintains a relationship with the deceased throughout life. Wendy Moore demonstrates this by maintaining her relationship with her father.
Children have the same sense of connection with their primary relationships as do adults and carry lifelong connections to them. Children are never too young to experience bereavement. While children may understand or express their feelings differently, they experience bereavement. Contacting local child bereavement resources is an important first step in helping the family involve children in a healthy expression of their grief.
Understanding what information may be appropriate during a particular stage of child development can be helpful, but the information must be integrated into the unique needs of a particular family and child. A general rule is to follow the child’s lead and answer questions honestly. For example, how can Mrs. Gregory’s daughters explain to their children that their grandmother is dying. This information should be shared only when the child begins to sense changes in her grandmother and inquires about them. These changes should be explained in medical terms, i.e., “Grandmother has an illness that is making her sick. No one caused it, no one made it happen, and you can’t catch it as you would a cold. It’s just one of those things that unfortunately happens, and it’s sad. Grandmother doesn’t like to talk about it, but if you have any questions, you can ask me.”
When the child later inquires whether Grandmother will ever recover from her illness, it is a signal of readiness to deal with more information, and, accordingly, more appropriate information can be given.
Most grieving individuals acutely experience a variety of symptoms–anorexia, insomnia, nightmares, confusion–that are related to the grieving process. Helping family members to understand that these are normal responses to acute grief can help alleviate fears that they might be “going crazy.” Generally, grieving family members go through a process of initial numbness, in which the death seems unreal; this is followed by recoil, in which the numbness lifts and the enormity of the transition to be made is realized; and, eventually, to a sense of accommodation of the myriad relationships affected by the death.[87]
While many of the symptoms of grief mimic those seen in depression and anxiety, the etiology of acute grief is different, and grief should not be treated as a psychiatric illness. Generally, psychotropic medication is not appropriate, although mild sedation may be helpful early in the grieving process, and medication to assist with sleep may be beneficial.
Common symptoms of grief and loss are listed in Table 7. Grief and loss are felt acutely in the first few months after the death and then gradually wane over the succeeding months. These times may be extended in cases of unexpected death, the death of a child, or a death that is perceived to be unnatural, such as suicide or homicide.[88], [89], [90], [91], [92]
Grief over the death of a patient reappears throughout the lives of surviving family members as they review their loss in light of new perspectives that arise from life experiences and maturation. The dynamics of a particular family when grieving are related to their relationship with the deceased, the age of the patient at death, the family’s prior experiences with death, the health of premorbid family functioning, and familial roles that need reworking. The family physician’s role in assisting patients and families through the end-of-life scenario has been summarized by Geyman, Table 8. [93]
Funerals commonly provide a ritual for helping families grasp the reality of their loss and allow each family member to begin confronting the meaning of death. The family physician continues involvement with the family and encourages successful grieving, giving families permission to do what is necessary to let go of the sense of loss and redefine the meanings of their lives. This often requires allowing emotional ventilation, crying, constructive pampering, “owning” and losing anger, appealing for and accepting support, defining major stressors, rising above regret, affirming the power to heal in each family member, completing unfinished business, capturing good memories of the deceased, and redefining essential values.[94]
|
Table 7
|
| Emotional ups and downs
Insomnia and bad dreams Somatic complaints Fears of being left alone Anorexia or weight loss
Depression or hypomania Anger, irritability, or guilt Loss of sense of meaning Substance abuse Crying or feeling hopeless Inability to concentrate Feeling of “going crazy” Preoccupation with images of the deceased Loss of conduct patterns previuosly influenced by the deceased Pining Fears of death similar to a deceased loved one Suicidal ideation |
To lighten the load, given the strength of feelings and the painful work of grieving, is a useful suggestion made more powerful when given the medical authority of a physician’s recommendation. Families may be referred to bereavement support groups that might be available in communities through churches, hospices, funeral homes, or mental health centers. Family members may be reassured that time is one of the greatest healers of grief and that life eventually returns to some level of normalcy and meaning.
|
Table 8
|
|||||||||||
| Stage | Symptom | ||||||||||
| Preterminal Care | Communication with patient and family concerning:
Diagnostic and theraputic intervention as desired and indicated Regular phusician visits |
||||||||||
| Terminal Care |
|
||||||||||
| Follow-up care | Initial family support after death:
Later visit(s):
|
||||||||||
The family may be given specific suggestions for creating rituals to promote healing, including tangible methods for effecting closure. Scrapbooks summarizing the deceased’s life can be constructed to coalesce memories, and letters to the deceased can be written expressing things that family members were unable to discuss with or make known to the deceased. Creating new family rituals for birthdays, holidays, and other special occasions that address the needs for connection with the deceased should be encouraged.
It can be useful to remind family members that the people who are significant in their lives are so because they “touched” or changed them. Death separates loved ones, but does not take away these changes. Thus, we become living memorials to departed loved ones. Such a view can help family members see beyond their acute grief to the possibility of reworking their relationships with the deceased so that the acute pain is no longer foremost.
The family physician must also be alert for pathologic grief reactions. Pathologic grief is severe grieving that lasts longer than 13 months and in which an individual is overwhelmed, becomes maladaptive, or remains in a state of grief.[95] High risk factors for pathologic grief include multiple previous losses, a history of drug or alcohol abuse, a history of depression, a young age when bereaved, and sudden death of a loved one. Pathologic grief generally presents as 1 of 3 syndromes: dependent grief, unexpected loss, or conflicted grief.[96] Patients experiencing pathologic grief should be referred to a professional grief counselor.
Case 2, Continued. While listening to Wendy’s story, you feel a deep sense of emotion as you remember your own father’s death and what it has meant to you. You also remind yourself to spend some special time with your children when you get home. You let Wendy know that you will assist her in her efforts to support Oscar and her children during this difficult time.
You give Wendy reading materials on grief, in general, and how children grieve. You also give her the Web site address for the National Hospice Organization [http://www.who.org] and refer her to the hospice bereavement coordinator. Over the next 4 months, Wendy accomplishes the following goals and rituals to assist herself and her family in dealing with their upcoming loss and bereavement: she has frank and open discussions with Oscar and her daughters that explore their concerns, fears, and grief; and she leaves letters for her daughters in Oscar’s keeping to be opened on their 16th birthday, graduation from high school, 21st birthday, wedding day, and the birth of their first child.
As her love for and connection with Oscar deepens, they marry, and he adopts Alicia and Sarah. Together, Oscar and Wendy buy a home in which they celebrate a final Christmas. Wendy asks that the family come together on the anniversary of her death to sing her favorite hymn, which she and her father often sang together. Recognizing this as an unobtrusive request, and understanding that as the girls grow and eventually leave home complying with the request may become impossible, Oscar and the girls agree to Wendy’s request.
When Wendy dies peacefully at home, the family grieves deeply. Yet, over time, the grief lessens and her legacy allows her to remain a continuing member of her strong and growing family. You also feel enriched and transformed by your involvement in this rich experience and always feel Wendy’s presence when you provide care to Oscar and the children.
Personal domain aspects that emanate from caring for the dying–stress, rapprochement, and transcendence–reflect the powerful emotional, intellectual, and spiritual forces that conjoin in the mystery called death. All persons involved in caring for a patient confront these forces, are affected by them, and are changed by active participation in the challenge of death. No one escapes death, and no one escapes being affected by exposure to death. The challenge to the family physician is to manage this impact for patient, family, and self to facilitate a good death experience.
The burdens and rewards of end-of-life care stem from the “suffering with” that is part of compassion. The physician compassionately engages the story of the patient and family to create an end to life that is reconciled with the realities of death. Success depends on many variables that arise from one of the most powerful metaphysical contexts in human experience. With quality end-of-life care, the life of the patient is affirmed and the good death–however defined by the patient and family–celebrated.
The science of medicine offers much for relieving pain and assisting patients to feel comfortable, less anxious, and peaceful. However, the quality of the relationships the physician engenders as an agent of change greatly affects the family’s ability to effect rapprochement and address the transcendent aspects of death. To be effective, family physicians must deal with personal domain issues surrounding death.
Interfacing and intervening as a healer in the end-of-life context is extremely demanding because it challenges the physician on both technical and personal levels.
The failure of medicine to accept death as a natural process has placed medicine at odds with the design of nature and has, occasionally, left patients abandoned at a time of great need. The task of the physician providing end-of-life care is to become a guide for life and death, as Nuland observed: “Each of us needs a guide who knows us as well as he knows the pathways by which we can approach death.”[57]
The ability to enjoin the patient and family in a personal way is key to quality end-of-life care and, in each case, is predicated on facility with the personal domain issues surrounding the end of life. Without this human touch, the physician-as-healer is reduced to physician-as-purveyor-of-treatments, and quality end-of-life care is left to others in the care team.
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Recent Articles fromAmerican Family Physician
1. Montauk SL. Home health care. Am Fam Physician 1998;58:1608-14.
2. Keay TJ, Schonwetter RS. Hospice care in the nursing home. Am Fam Physician 1998;57:491-8.
Resources
List for Palliative Medicine Library Materials
1. Doyle D, Hanks, GWC, MacDonald N. Oxford textbook of palliative medicine. 2nd ed. New York: Oxford University Press, 1998.
2. Cassell EJ. The nature of suffering: and the goals of medicine. New York: Oxford University Press, 1991.
3. Callahan D. The troubled dream of life: living with mortality. New York: Simon & Schuster, 1993.
4. Storey P. Primer of palliative care. 2nd ed. rev. Gainesville, Fla: American Academy of Hospice and Palliative Medicine, 1996.
5. Storey P, Knight CF. UNIPAC one: the hospice/palliative medicine approach to end-of-life care. Gainesville, Fla: American Academy of Hospice and Palliative Medicine, 1998.
6. Storey P, Knight CF. UNIPAC two: alleviating psychological and spiritual pain in the terminally ill. Gainesville, Fla: American Academy of Hospice and Palliative Medicine, 1998.
7. Storey P, Knight CF. UNIPAC three: assessment and treatment of pain in the terminally ill. Gainesville, Fla: American Academy of Hospice and Palliative Medicine, 1998.
8. Storey P, Knight CF. UNIPAC four: management of selected non-pain symptoms in the terminally ill. Gainesville, Fla: American Academy of Hospice and Palliative Medicine, 1998.
9. Storey P, Knight CF. UNIPAC five: caring for the terminally ill–communication and the physician’s role on the interdisciplinary team. Gainesville,Fla: American Academy of Hospice and Palliative Medicine, 1998.
10. Storey P, Knight CF. UNIPAC six: ethical and legal decision making when caring for the terminally ill. Gainesville, Fla: American Academy of Hospice and Palliative Medicine, 1998.
11. Johanson GA. Physicians handbook of symptom relief in terminal care. 4th ed. Santa Rosa, Calif: Sonoma County Academic Foundation for Excellence in Medicine, 1994.
12. Twycross R. Pain relief in advanced cancer. New York: Churchill Livingstone, 1994.
13. Management of Cancer Pain Guideline Panel. Management of cancer pain. Clinical practice guideline no. 9. Rockville, Md: US Dept. of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research, 1994. AHCPR publication no. 94-0592.
14. Ariès P. The hour of our death. New York: Oxford University Press, 1991.
15. Kubler-Ross E. On death and dying. New York: Macmillan, 1969.
16. Byock I. Dying well: peace and possibilities at the end of life. New York: Riverhead Books, 1998.
17. Kearney M. Mortally wounded: stories of soul pain, death, and healing. New York: Scribner, 1996.
18. Field MJ, Cassel CK, Institute of Medicine (US) Committee on Care at the End of Life. Approaching death: improving care at the end of life. Washington, DC: National Academy Press, 1997.
19. Rando TA. Grief, dying, and death: clinical interventions for caregivers. Champaign, Ill: Research Press Co., 1984.
20. American Board of Internal Medicine. Caring for the dying: identification and promotion of physician competency: educational resource document. Philadelphia: American Board of Internal Medicine, 1996.
21. The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT) [published erratum appears in JAMA 1996;275(16):1232]. JAMA 1995;274:1591-8.
22. Buckman R. How to break bad news: a guide for health care professionals. Baltimore, Md: Johns Hopkins University Press, 1992.
23. Cassell EJ. Talking with patients. Vol. 1. The theory of doctor-patient communication. Cambridge, Mass: MIT Press, 1985.
24. Cassell EJ. Talking with patients. Vol. 2. Clinical technique. Cambridge, Mass: MIT Press, 1985.
25. Lynn J, Harrold JK. Handbook for mortals: guidance for people facing serious illness. New York: Oxford University Press, 1999.
11. Johanson GA. Physicians handbook of symptom relief in terminal care. 4th ed. Santa Rosa, Calif: Sonoma County Academic Foundation for Excellence in Medicine, 1994.
12. Twycross R. Pain relief in advanced cancer. New York: Churchill Livingstone, 1994.
13. Management of Cancer Pain Guideline Panel. Management of cancer pain. Clinical practice guideline no. 9. Rockville, Md: US Dept. of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research, 1994. AHCPR publication no. 94-0592.
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Fiction
1. Agee J. A death in the family. New York: Grosset & Dunlap, 1967.
2. Broyard A. Intoxicated by my illness: and other writings on life and death. New York: C. Potter, 1992.
3. Tolstoy L. The death of Ivan Ilych, and other stories. London, UK: Oxford University Press, 1971.
4. Williams TT. Refuge: an unnatural history of family and place. New York: Vintage Books, 1992.
5. Sacks OW. Awakenings. New York: Vintage Books, 1999.
6. Camus A. The plague. New York: A.A. Knopf, 1954.
Web Sites (Accessed 2/1/00)
1. American Academy of Hospice and Palliative Medicine. Home page. http://www.aahpm.org.
2. National Hospice Organization. Home page. http://www.nho.org.
3. Project on Death in America. Home page. http://www.soros.org/ usprograms/pdia.htm.
4. American Medical Association Educating Physicians in End of Life Care (EPEC). Project web site: http://www.ama-assn.org/ethic/epec/index.htm.