Defining Palliative Care

When a patient and family are living with serious illness, deciding what is good medical care can be a confusing and difficult challenge not only for the patient and family but for health professionals as well.  In this clerkship we will be exploring how clinicians use the palliative care and hospice philosophies in providing “good” medical care at the end of life.  In understanding the palliative care and hospice philosophies several important points are worth emphasizing:

  • Death is understood as a universal human experience to be lived by each of us.  Death is not a problem to be solved and not the last alternative after all medical treatments have failed.
  • When a patient has an illness with a significant likelihood of causing death it is our professional responsibility to explore with the patient and family their concerns and what type of care best supports them in the time they have left to live.
  • Over emphasizing care that prolongs life and attempts to reverse or “cure” disease often diverts physicians and other clinicians from other desirable and important goals.  This includes relief of suffering, control of physical symptoms and incorporating patient/family values and goals into the medical plan of care.
  • The clinician’s relationship with the patient and family has important therapeutic value often exceeding the power of medical interventions.  Like all relationships it is reciprocal in nature, acting both upon the patient and family as well as upon the clinician.  Developing a therapeutic relationship requires a high level of mastery including mindfulness and self-reflection on the part of the clinician.
  • The hospice philosophy is usually implemented when a patient and family have accepted the terminal nature of their illness and life prolonging therapies are of limited value.  The Palliative Care philosophy is implemented whenever death is a realistic possibility and life-prolonging therapies may be used simultaneously with palliative interventions promoting comfort and quality of life.

Most palliative care physicians would define good medical care as care that allows a patient and their family to live a life that has meaning and makes sense to them.  A life that allows the patient and family to be who they have always been or become who they need to be during this difficult time.  Any treatments that support these goals should be continued.  Less desirable medical care increases a patient’s and a family’s suffering, causes them to live a life they don’t want to live or become someone they don’t want to be.  Any medical treatment that increases suffering should be thoughtfully reviewed to determine if it should be stopped. 

Using the previous definition of “good” medical care creates a significant problem for physicians and other clinicians.  Normally the way we (physicians) know if a treatment is working is by using objective measures that show disease improvement.  Improving physical exams, lab values, and MRI scans or negative biopsies are all signs of improvement.  But there are no objective tests that allow us to know what makes sense to the patient and family.  The only way a physician can “know” this information is to have a conversation to learn the patient and family’s perspective.  These are difficult conversations to have and how to conduct them effectively is at the heart of Palliative Care.  Such conversations focus on clearly understanding and defining the patient and family’s goals and values.  Only by integrating the patient and family’s story into the medical context can care be tailored to meet the unique needs of the patient and family including their physical, psychological, social, cultural, ethical and spiritual concerns. 

In this context determining good medical care can vary widely.  Take Joe for example.  He is a 54-year old male with advanced pancreatic cancer.  He has been at home with hospice support.  One night when you are on call his wife contacts you sounding exhausted.  She states that Joe has not slept for over 24 hours.  He keeps trying to get out of bed and protect her and the family from “invaders” who are just outside the house.  No amount of reassurance calms him.  She begins to sob and state, “this isn’t my husband.  I can’t keep on like this.  We need help.”

What is good medical care at this point? 

  • Through a well structured conversation with his wife you learn that Joe’s biggest hope is to witness his son’s graduation from college in two weeks, then bringing him into the hospital for evaluation and treatment makes sense.  This is exactly what happened to Joe.  Once in the hospital, lab studies determined Joe was experiencing hyper-calcemia and dehydration.  After these underlying conditions were treated his delirium cleared.  While Joe was too sick to attend his son’s college graduation in person the entire family relived it through the video they watched together.
  • Instead, what if his wife described Joe as suffering.  “He’s a man of action who hates being dependent.  Despite our loving care and hospice support Joe doesn’t see any sense in prolonging the inevitable.  The last time he was in the hospital he said to me, listen tell those doctors when my time comes let me go.  I don’t want any heroics keeping me going.”  Then aggressive comfort measures, potentially including palliative sedation, at home or in the hospital would make sense. 

 Each of these outcomes represents “good” medical care and excellent palliative care.  Each requires physicians who have mastered the knowledge and skills of disease management as well as relational and communication skills necessary to maintain a therapeutic relationship with the patient and family.  The table below emphasizes significant differing characteristics of the Palliative and Curative models of care.

 

Characteristics of Palliative and Curative Care Models

Modified by S Farber from Fox E, Predominance of the curative model of medical care, JAMA, 1997;278(9):761-3.

Palliative Model

Curative Model

Primary goal is the relief of suffering Primary goal is cure
Object of engagement is the patient and family Object of engagement is the disease process
Distressing symptoms are treated as entities unto themselves Symptoms are treated primarily as clues to diagnosis
Both measurable and subjective data are valued Primary value is placed on measurable data e.g. lab tests
Values the patient’s experience of an illness Tends to devalue information that is subjective, immeasurable or unverifiable
Therapy is medically indicated if it controls symptoms and relieves suffering Therapy is indicated if it eradicates or slows the progression of disease
The patient and family are viewed as complex emotional beings consisting of physical, emotional, social, and spiritual dimensions The patient’s body is differentiated from his/her mind
Treatment is congruent with the values, beliefs, and concerns of the patient and family Treatment is based on the disease process thus exploration of patient and family values and beliefs are not central to medical care
Enabling a person to live fully and comfortably until she or he dies is a success Death is an acceptable alternative only after life extending medical therapies have been exhausted or deemed futile
 
Please read: Fox E, Predominance of the Curative Model of Medical Care, JAMA, 278(9);1997:761-764 for a deeper discussion of the palliative care model of care and its comparison to the curative care model.
 
SF 11/5/03

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