Respectful Death

INTRODUCTION

This chapter will explore the concept that approaching death provides an opportunity for individuals, families, and health professionals to experience something profound and respectful. Within the modern culture of medicine a positive concept toward death is relatively recent. In the opening chapter Phyllis Silverman discusses death from a social and historical context. This chapter will explore similar issues from an individual and family context. How do we as individuals, family members, caregivers and clinicians make sense of death? How do we shift from Weissman’s middle knowledge to the reality that we or someone we know will die soon? Are there any universal experiences that will help social workers and other health team members assist patients and families to have a more positive experience? We will present a research-based model for a respectful death, discuss the implications of this model for social work practice, and share the field experience of Pat and Kristin, social workers who practice exclusively in end-of-life care.

“A Good Death”
A “good death” is a term used increasingly to describe the option for positive possibilities at the end of one’s life. The concept of a good death certainly contrasts with the idea that death in any form is bad and the result of medicine’s failure to cure. A good death acknowledges the inevitability of death and provides values upon which to judge more positive experiences. An example of well accepted values for judging a good death are supplied in Ira Byock’s book, Dying Well (1997). Byock describes essential elements of a good death to include: a safe environment where basic human needs of shelter, food and nurture are provided; physical symptoms, especially pain, are aggressively managed to minimize physical suffering; and the opportunity to pursue issues of human development appropriate to the end of life are supported. He describes basic developmental tasks of value to patients and their families. These include affirmation: I love you; do you love me? Reconciliation: I forgive you; do you forgive me? And, saying goodbye.

While few would argue the inherent value of Byock’s elements for judging a “good death,” they are by no means universally accepted. Anyone with personal and clinical experience in caring for seriously ill patients has experienced cases where affirmation, reconciliation or saying goodbye were not part of either the patient’s or family’s experience, nor, in some cases, their agenda. In fact there is grave danger that such values start to become prescriptive and are seen as a formula for the successful or good death. “If only she would tell her husband that she loves him.” “If he would just take his pain medicine as prescribed his dying would be so much better.” “She is not safe in her apartment. She’s going to fall and hurt herself. She needs to be living in a safer environment.” Such statements are frequent in most hospice team meetings. The judgments are sound but are often diametrically opposed to the values, goals or abilities of the ill person and family.

The concept of what is “good” is value laden and implies a judgment by someone. Determining who that someone should be is not always easy. Given the high value placed on patient autonomy by our society and health care teams, should that someone always be the patient? What role does the caregiver have in deciding what is good, especially when they are worn thin by long hours of caring and are now expected to do even more? What about the social worker and other health care professionals who have extensive clinical experience and wisdom to share? What should clinicians do when they witness patients and families making decisions that they deeply grieve because they are certain patients and families will only add to their combined suffering? In the clinical context these competing points of view make determining what is “good” an ephemeral task.

A Respectful Death
As an alternative to “a good death” we propose the term “a respectful death.” In choosing the word “respect” we wish to emphasize a non-judgmental relationship between parties. A relationship that acknowledges differences and allows for a shared process of integrating differences into as coherent a whole as possible. This shared point of view allows patients, families and health team members to make judgments and simultaneously embrace differences as valid and worthwhile. The challenge becomes weaving these differing perspectives into a whole cloth that supports as many of the common values as possible for all parties. Respect guides all participants to act within a tight community where the patient, family and clinicians act upon, as well as with, each other. For respect to flourish each member must be mindful of the others and strive to understand their values and goals. It is particularly important for health team members to understand the values and goals of the highly vulnerable patient and family dealing with incurable illness who are almost always novices navigating a frightening road through the powerful culture of medicine.

Process vs. Prescription
What we wish to propose is a process of respectful exploration of the goals and values of patients and families at the end of life rather than a prescription for successfully achieving “A Good Death.” This proposal, while ambitious, is well supported by four decades of literature. Researchers, educators and social critics have explored how health professionals provide end-of-life care (Feifel, 1959; Glaser and Strauss, 1968; Kubler-Ross, 1969; Weisman, 1972; Becker, 1973; Corbin and Strauss, 1988; Charmaz, 1991). All reflect this common theme: the need to provide care based upon the unique illness experience and values of the patient and family. That we are still striving to provide such care 40 years later speaks to the challenges of doing so in our present health care systems. The medical culture is incredibly powerful and defines the human experience in a way that easily ignores individual experience. There is little language, time or ritual for patients and caregivers to conceptualize, let alone express, their values and goals in the battle against disease and death until death is the only possible outcome. Only then does the medical culture allow for something else to fill the void.

All of us are trained to identify problems that the patient and family experience. Once the problems are identified we typically offer prescriptive solutions from our professional experience. How often do we mindfully listen to the lived experience of our patients and families as they struggle with loss and grief (Langer 1990)? How often do we mindfully hear their stories and understand them as singular experiences at one of the most mysterious and challenging points in the life cycle? How often do we act both from our professional experience and our human experience to offer creative solutions that allow our clients to live the best lives possible, based on their values and goals, before attempting to solve their problems? Coming to death is an inevitable event to be lived and not a problem to be solved. Like all living we propose it is an ongoing process occurring within a community. Our job is to help each member of that community: patients, families and ourselves live the best quality life possible while a singular life comes to an end.

Our model will describe a process for exploring a Respectful Death for patients, families and health team members. The first step in this process is discovering the individual values, meanings, and goals of the central players. The core group includes the patient, family and clinicians. Eric Cassell (1991) describes this process as understanding stories. He particularly emphasizes understanding the patient’s story. Storytelling is a way that we make sense of our lives, provide continuity and gain a sense of identity (Kaufman 1986). By voicing and understanding all the stories being told the community has the opportunity to create a common story in which the lived experience of the patient and family are at the center. This common story increases the opportunity for patient and family values and goals to drive health care decision-making, thus increasing the opportunity for medical care to support the life patients and family want to live rather than supporting life continuance at all costs.

A RESEARCH BASED MODEL


When to Begin the Discussion
When is it appropriate for social workers and other health care professionals to have conversations acknowledging that people are entering the end stage of their lives? Another way of phrasing this question is, “When do you believe that your patient is at the end of her/his life?” In our work, we ask this question often of physicians, nurses and social workers. The typical answer focuses on prognosis. Certainly a patient is at the end of his/her life when she/he has a serious illness and all known treatments are likely to be ineffective. The problem with using prognosis in defining end of life is that we aren’t very good at it (Fox, et al, 1999). Using prognosis as the guide will lead to end-of-life discussions occurring in the last days or weeks of life when death is the only possible outcome. Conversely, discussing the possibility of end of life when the risk of dying is very small is equally problematic. Focusing on the possibility of dying with an otherwise healthy 75-year-old who is contemplating a hip replacement may prevent that person from having a valuable surgical procedure.

Despite our limited prognostic ability clinicians acknowledge that they do know when death is a likely outcome, though it may not be the only outcome. The typical question innovative palliative care programs and end-of-life researchers use with clinicians to identify end-of-life patients is, “Do you have any patients in your practice that, if they died in the next year, you wouldn’t be surprised (Farber, et al, 2003)?” By removing the need to be certain the ill person will die, you open up the opportunity of having more than one outcome. They may well die or they may outlive you, but the understanding that they have a significant chance of dying makes the conversation a possibility.

Those experienced in geriatric care have evolved another definition of the end of life. The end of life is that period in the life cycle where the person can expect a future of loss and diminishment on the physical and/or cognitive level. Depending on the disease process and individual experiences, the end-of-life period can be brief or prolonged. An otherwise healthy woman who dies of a massive heart attack may have an end-of-life experience that lasts no more than 3 minutes. On the other hand a man who develops Alzheimer’s dementia is likely to have an end-of-life experience lasting many years. As the dementia progresses each time he has a major life threatening complication it could be the end of his life or not. This depends on the decisions his family and health care team makes on his behalf. A bout of pneumonia, a fall causing a fractured hip, or the loss of the ability to swallow food can either be seen as opportunities for a natural end to a life well lived, or for medical interventions to sustain life until the next serious illness occurs.

We propose that end-of-life discussions should be considered whenever there is a serious medical illness that threatens a person’s life or when health team members believe that death is one of many significant possible outcomes in the foreseeable future (Would you be surprised if this person died in the next year?).

Cross Cultural Perspectives
One way of understanding and integrating the differing perspectives of seriously ill people, their families and the health care team is to view each medical encounter as a cross-cultural experience. While each of these participants have in common that they are dealing with the end of life, each is doing so from their own unique perspective. Our research describes three “cultural” perspectives – the ill person, the family caregiver, and the health care team (Farber, et al, 2003). We identified four domains common to each of these participants when dealing with far advanced, life threatening illness:

Awareness: The process of interpreting and embracing the impact of terminal illness on life experience.
Management/Coping: The necessary regimen or tasks the patient and family must accomplish in order to get through each day.
Relationships: Bonding through time with self, others and the environment.
Personal experience: The individual living through the dying process.
While each participant is dealing with these common domains, they are doing so from their differing and unique perspectives.

The Ill Person
The ill people in our research emphasized the personally overwhelming impact of serious illness. Whether consciously acknowledged or not, the awareness of impending death infused every moment of their lives. This became the context in which each day was lived. Coping with the physical, financial, psychosocial and spiritual challenges of illness; maintaining relationships in the light of change, conflict and potential growth; and experiencing suffering, loss, spiritual growth, reconciliation, uncertainty and physical discomfort became primary tasks. The ultimate task of the ill person was to accommodate to “my death,” inevitably leaving this world and all his/her attachments to it.

The Family Caregiver
Family caregivers also described the overwhelming impact of serious illness, emphasizing subtle but significant differences from their loved-one who was ill. Family caregivers are dealing with “my loved one’s death,” As opposed to dealing with “my death.” The potential loss of their loved one challenged them to continue to meet their usual daily obligations while assuming the new and ever changing responsibilities of care giving. Family members are not preparing to leave this world; instead they are living in forever-changed circumstances. The family needs to maintain stamina in order to provide care giving; to garner appropriate community resources to actually provide care; to accommodate change and the loss of relationships; to experience suffering, loss, spiritual growth, reconciliation, uncertainty; and to advocate physical comfort for their loved one. The ultimate task for the family is to remain close to the ill person and support them and at the same time accommodate themselves to the pain of losing their loved one and constructing a new life, forever changed after the death of their loved-one.

The Health Care Team
Social workers, physicians, and nurses are trained to be experts in identifying problems and providing solutions from the perspective of their professional expertise. The medical perspective places the initial focus on reaching consensus with the ill person and family on the diagnosis – You have a serious disease, do you know what it is? the prognosis – Your disease is incurable and will likely cause you to die prematurely (Farber, et al, 2003), and the plan – Here are the set of actions medicine recommends and here is the medical team that will provide them to you based on your disease. Clinicians described the difficulty of developing this consensus in light of the unpredictability of the disease course for any individual patient (Farber, et al, 1999).

The objective world of Western medicine upon which the diagnosis, prognosis and plan is based is an enormously powerful view of the world of the sick. Diagnosing, prognosing, and treating define the comprehension of an illness experience that is understandable, controllable, and offers the hope of actions that can prolong life. Appreciation of the personal values and goals of the ill person and family may be acknowledged but is generally interpreted from a disease perspective. The lived-experience of the patient and family cannot be seen without going beyond the borders of disease and its treatments. This includes awareness of death, coping with illness on a daily basis, maintaining relationships and experiencing suffering, loss, spiritual growth, reconciliation, uncertainty and physical discomfort.

Bridging the Cultural Gap
Given the differing cultural perspectives it becomes easier to see why it is so difficult to integrate an ill person’s and family’s perspectives into medical decision making and caring. The experience of the patient and family in their own cultural context of illness must become as real and engaging to the health care team as the disease that is being treated through the powerful lens of medicine in order for end-of-life care based on the values and goals of the patient and family to occur. All those involved in the patient’s care must strive to bridge the cultural gap between the dominant medical culture and that of the patient and family.

One concept on which all parties – ill persons, family members and health care team members – strongly agree is the importance of the presence of a therapeutic relationship (Farber, Egnew and Herman-Bertsch, 1999; 2002). This concordance provides the most effective avenue of overcoming these cultural gaps. Clinicians identified the following domains as necessary for a therapeutic relationship:

  • Commitment: Stressing she/he will care for the patient and family through and beyond death.
  • Connection: Creating a special relationship that allows any topic of importance to the patient and family to be discussed regardless of whether or not it is medical. This aspect of relationship is similar to Carl Roger’s concept of unconditional positive regard (Rogers, 1951).
  • Consciousness: Understanding the patient’s and family’s personal experience as well as the personal and professional meaning for the clinician within the ever changing context of illness.

With definitions unique to their perspective, ill people and their families identified the same domains (Farber, et al, 2003):

  • Commitment: Actions that demonstrate commitment beyond traditional medical care; receiving help out to the car, a home visit, special foods while in the hospital, or a call between visits were perceived examples of commitment.
  • Connection: Empathic/supportive clinicians who listen and allow the patient and family to express their personal concerns. They also spoke about clinicians who do not listen or ignore their personal concerns in strongly negative terms. Family members especially appreciate being listened to and having their perspective elicited and valued.
  • Personal Caring: Patients appreciated clinicians who treat them as “persons” and not as “diseases.” Communicating a sense of caring and openness to the ill person’s experience was a fundamental need expressed and universally valued.

A Proposed Protocol for Exploring a Respectful Death

  1. Meet the ill person and family in a quiet setting.
  2. Include all of the important participants, both from the family and the health care team.
  3. Make sure you have adequate time and that all beepers, cell phones, etc. are turned off.
  4. Create a safe environment through a therapeutic relationship. You will be discussing difficult and distressing issues and your demeanor and presence should reassure the ill person and the family that you will listen to any concerns they wish to explore, that you are committed to caring for them through the end of life, and that you will provide the information and context from your professional experience that they need to make sense of their situation.
  5. Explore the ill person and family’s story by asking open-ended questions.Suggested Protocol Questions
    • How do you understand your situation?
    • What do you want to be sure we discuss today?
    • From where do you draw your strength to cope with this situation?
    • What are your past experiences in caring for others with serious illness, loss?
    • Who is your “family” that will support you?
    • What are your goals? Often an effective way to approach this question is to ask:
      • What are you hoping for?
      • What are your greatest concerns or fears?
    • What else do you want me to know about who you are and what you believe?

     

     

  6. Listen fully, resisting the need to identify problems or suggest solutions. As you hear the story unfold ask deeper questions that will encourage the ill person/family member to go more deeply into their own experience and will allow you to gain a better understanding of their stories (See Table I at the end of this chapter).
  7. Once you have gained an understanding of their stories, verify what you understand by using reflective statements. Clarify the shared values and goals that are at the core of the ill person and family stories. Acknowledge differences where they exist.
  8. Emphasize your commitment to integrate these values and goals into the medical context that you understand and share your professional experience on how medical/social resources can best support the patient’s and family’s goals and values.
  9. Develop a plan of care that supports the ill person and family’s story using their values and goals as the driving force in decision-making, whether around medical or psychosocial support.
  10. Acknowledge that suffering and loss are a part of the end of life and be a compassionate witness when no solutions are possible.

RESPECTFUL DEATH CASE STUDIES


In our workshops we find that clinicians readily understand and embrace these concepts in theory, however most are challenged to apply them in practice. Why is this? Participants describe many barriers, but two significant hurdles were frequently mentioned: 1) the difficulty of identifying what we do automatically and reflecting on its value; 2) the uncertainty inherent in practicing something new. This latter obstacle moves us from the comfortable position of “expert” to the uncomfortable one of “novice.” To help the reader better grasp the attitudes and skills needed to put this respectful death model into action, we will present two case studies based on clients served by Pat and Kristin, the palliative care social workers mentioned in this chapter’s introduction.

Pat was educated as a social worker then pursued advanced training in bereavement and spiritual counseling. She has been caring for ill people for over 29 years; the last 14 have been dedicated to end-of-life care. Pat’s calling has been that of a spiritual guide – listening, counseling, teaching and being present to patients, families and co-workers. Kristin began her social work education later in life after having been a school counselor for many years. Both her life and professional experience prepared her well for social work. Kristin was drawn to end-of-life work by some unique experiences during her training, beginning with her practicum at a mental health center in a low-income community. She observed, “It seemed that whatever they [clients] were coming in for – abuse, depression, whatever – at the base of it was grief and loss.” Kristin also elected to take two interdisciplinary courses, Spirituality and Medicine and The Hospice Training course, both co-facilitated by Stu Farber. These courses impacted her decision to enter end-of-life care. Kristin has been a Hospice social worker in our community for 2½ years.

We will begin the client and family stories that Pat and Kristin shared with us then follow these cases as we explore the implications for social workers of practicing the respectful death care model. In this way we will emphasize the diversity and challenges that social workers face when caring for clients and their families at the end of life. The names used here are not the real names of these clients.

The Case of Susan
Pat recalled a specific experience with a woman named Susan who was admitted to our local hospice during the time that Pat was the bereavement counselor and chaplain for that team. At the team meeting Susan’s husband from her second marriage was described as “very controlling” and her children were described as “extremely Christian.” As Pat later listened to Susan’s own story, she became aware of a woman who was “very spiritual with a more universal view of the Divine.” She noted that different dimensions of this family’s dynamics hooked different people on the hospice care team.One of the nurses, whose theology was similar to the children’s, sympathized with the them. The children were worried about their mother’s spiritual salvation and they wanted to help care for her as well, but Susan’s husband would not allow them to share in their mother’s care. Another of the hospice nurses worked actively to encourage the aggressive use of pain medications in support of Susan’s husband’s agenda. Susan said she wasn’t afraid to suffer, especially if not taking medication allowed her to do the things that she wanted to do. She told the team that she could manage her pain with meditation and other complimentary therapies.

The Case of Trudy
Kristin and a hospice nurse visited Trudy in her home at the trailer park 3 times before Trudy trusted them enough to allow limited support services. Trudy’s goals were to live independently and to have control over the decisions that affected her daily life. She was reluctant to share information or talk about what the future held.

Eventually Trudy began to tell Kristin about her childhood, problems among siblings, a strained relationship with her mother, stormy relationships with her own children, and her three marriages. Trudy also shared that she had worked in a nursing home for a while and was adamant that she not end up in one. The meaning that shaped Trudy’s values and therefore her decisions became clearer as her story unfolded. Her desire for absolute control of daily activities and her uneven moods began to have some context.

As Trudy’s illness progressed, both her son and her sister began to reconcile their differences with her. Her son was even ready to be Trudy’s caregiver, but during one of her dramatic moods swings, Trudy lashed out him and he withdrew his offer. As Kristin put it, Trudy “had one egg in her basket and she broke it.”

IMPLICATIONS FOR SOCIAL WORK PRACTICE

We have shared that a respectful death involves helping patients and their families realize the end-of-life care that supports the life that they choose to live until death. Thus a relational emphasis in end-of-life care giving can bring out the values, preferences and attitudes that support how the patient prefers to live until death, while also being attentive to similar issues for the family and coordinating those services that compassionately and respectfully support all involved. Yet, what does a respectful death mean for social workers serving dying patients and their families? What personal and professional skills are required of the social worker?

It was noted in the Preface that social workers are not well trained in the required attitudes and skills to support a respectful death. Therefore, most social workers need further preparation in order to be adequately prepared to provide care to the seriously ill and their families. This challenges each social worker who is engaged in the palliative care field to obtain education that builds professional skills and competency in 1) understanding the roles that we play when assisting a respectful death, 2) self knowledge to facilitate appropriate role performance, 3) an appreciation for the healing power of the story of the ill person and family members, and 4) a capacity to witness suffering. Proficiency in these areas helps assure that social workers functioning in end-of-life care settings are adequately prepared to competently and professionally orchestrate a respectful death experience for dying patients and their families.

The Role of the Social Worker in End-of-Life Care
Our research-based model indicates that quality end-of-life care is organized around relationships, meaning and roles (Farber, et al, 2002). While the subjects of the original research were physicians, patients and family member caregivers, our Patient-Centered Care workshops have demonstrated that the knowledge, attitudes and skills drawn from this research are readily generalizable to social workers, physicians and nurses as well.

The social worker role is shaped by the non-medical goals set by the patient, the family and the palliative care team, the systems in place to meet these goals, and the expectations of all involved (Monroe, 1993). Non-medical goals include the expression of emotional pain and the exploration of spiritual pain. The values, meanings and goals expressed as clients reflect on these issues are integral to the unique story that defines the hopes and dreams for the time left to the patient and family. Using the questions in our model as a process for learning these stories begins to establish a personal relationship with them. Therefore, the clinician attending a respectful death is not a detached bystander providing professional services, but rather becomes part of the fabric of the story and of the end-of-life process.

Seeing oneself “in relationship” with the ill person and family may test the traditional role that the social worker plays. This model for facilitating a respectful death challenges the standard professional and personal boundaries of relationship that clinicians create, as illustrated by Susan’s story:

Each participant in this story, the husband, the children and the individual hospice team members, focused on their own goals and their own way of problem solving. Susan often seemed to struggle against the team. She had a clear path that she wished to follow which was different from the agendas of her husband, her children or some of the hospice team members.

One day the hospice nurse that sympathized with the children made a home visit and listened to Susan describe a recurrent dream that she was having about snakes. The nurse became alarmed and called Pat out to the home to “take care of this.” The nurse feared that this was some horrible satanic imagery and she was concerned that this indicated that Susan was in great distress.

By acknowledging that the social worker cannot separate her/his personal and professional self from the shared story of the client and family, significant tension may arise. If we become personally overwhelmed by sharing in the client and family’s grief and suffering, our ability to offer them professional support may be impaired. Conversely, if we distance ourselves to prevent being overwhelmed, we run the danger of being so detached that we are unable to truly share in the patient and family’s experience to gain an understanding of their story.

In our research we describe three roles that clinicians often assume in developing effective relationships with patients and families when facilitating a respectful death: the consultant, the collaborator and the guide (Farber, et al, 2002). We will explore these roles and the implications for palliative care social workers as they become actors in the patient and family story. More important than the role labels themselves are the attitudes and skills adopted in each role.

The consultant provides expert information to the dying patient and family, based on their particular diagnosis and stage of disease. This requires an appreciation of a variety of personal and systems responses to death and dying. In this role social workers must understand the impact of pain, disability and chronic illness on the ill person and the family, they must integrate physiological data pertinent to a particular case, and must be aware of national policies, funding and other systems variables that impact the care effort (Sieppert, 1996; Egan & Kadushin, 1999; Yagoda, 2002). The consultant tends to remain more detached and be a provider of clinically significant information. Yet providing pertinent information and appropriate referrals can only occur after careful exploration of the family’s values and goals in order to appreciate their understanding of the situation and provide the support they need. Effective consultation leads to referrals that alleviate troublesome symptoms and stressors, freeing the ill person and family’s energy for achieving their personally defined goals.

More effective roles for an end-of-life practice that embraces the respectful death model are those of the collaborator and the guide. As a collaborator, the social worker shares information with the patient and family to promote a common understanding of the end-of-life experience. This involves developing therapeutic relationships with patients and their families to provide personal support. Clinicians have knowledge of the medical environment and the resources available to treat and support the challenges of illness. But what significant knowledge do the patient and family bring to the discussion? They are experts in knowing how they live their lives, what is meaningful to them, and in defining their important goals. Using the questions outlined in the protocol above, we begin by determining the patient’s understanding of the situation, her/his past experiences with illness that shape present responses, and the particular concerns of the patient and family that will impact the care effort. Effective collaborators elicit the special knowledge of the ill person and family then weave this together with their expert knowledge of the end-of-life experience to recommend a plan of care consistent with the hopes, dreams, wishes and values for the time left to them to share. Social workers, possessing relational skills and a systems focus, are particularly suited to be collaborators.

In the role of guide, the social worker may seek solutions for the patient based not only on professional expertise and the patient’s values and preferences, but also on the social worker’s knowledge of the end-of-life context. Having determined that the end of a person’s life is near and what’s important to that person and her/his family at this time, the guide shows them “how to get there” (Farber, et al, 2002, p. 155). In this role, the guide acts as both an advisor, promoting a treatment plan that is most appropriate for the dying patient’s and family’s unique situation, and an advocate, actively helping them to overcome obstacles and achieve their goals (Farber, Egnew, Stempel & Vleck, 2000). The guide role is perhaps the most difficult and controversial for social workers due to its potential conflict with the social work value of self-determination. We believe that it may also be the most effective role for promoting a respectful death.

Self-determination is a core value that social workers are trained to promote particularly in cases of palliative care (Csikai & Bass, 2000). Indeed, NASW (1994) has published a policy entitled “Client Self-Determination and End of Life Decisions.” Yet, the NASW policy has been criticized for stressing self-determination at the expense of the common good, and social workers are called to promote both (Wesley, 1996). Let’s look further at Trudy’s situation:

Trudy’s fierce independence often posed grave safety hazards. She used oxygen and she was a smoker, sometimes she would do both at the same time. When it became clear that Trudy was not safe and that no amount of counseling would change her behaviors, Kristin began to seek options for care that honored Trudy’s goals. One day Kristin found Trudy in a coma when she came to her home for a scheduled visit. Kristin admitted Trudy to the hospital for a respite stay while the hospice team tried to figure out how to best care for her.

The only safe options for care appeared to be either a nursing home or an adult family home. Kristin knew that it was her job as the team’s social worker to discuss these limited options with Trudy.

How does the social worker attending a respectful death act as a guide or collaborator for the dying patient and family without compromising self-determination? The answer lies in understanding the limitations of self-determination in the end-of-life scenario. The reality of palliative care is that the dying person and family have no choice in the impending death, only in the quality of life until death. With death looming, self-determination can be limited by a lack of information for considering options, compromised mental competency, external factors that limit choices, the values of the professionals involved in a particular case, or the legal requirements regarding interventions (Biesteck, 1957). “Patients often can’t make these [medical] decisions because they never have;” Pat notes, “they live in the context of their families and communities. We are responsible to help them.” In a respectful death, self-determination is best realized when the dying person and the family have authorship of the story of their time left together and are guided to care that supports the values and goals they define.

We earlier described the seriously ill patient and family as novices to the worlds of medicine and death. They often have little or no understanding of the medical and social systems that shape the process of dying. Thus, they are naïve regarding the impact of their choices on the attainment of their goals and objectives. This renders them both dependent upon those providing advice and vulnerable to unintended consequences from their decisions. Into this breach the social worker steps to usher the patient and family toward an end-of-life experience that respects their values. This is what Pat was able to do for Susan, her family and the hospice team:

At the request of the hospice nurse, Pat made her first visit to Susan’s home. She sat with Susan and began to explore Susan’s experience, “Do your dreams upset you? What do these dreams mean to you?” Susan answered that she hadn’t been upset at all until the nurse and the kids had gotten so upset. In Susan’s view of the world she had many ways of seeing the Divine all around her. She frequently drew on symbolism from mythology. A certain snake in mythology swallows its own tail, which begins the process of regeneration. She saw her dreams as a symbol of healing and rebirth, and she talked about the snakes intertwined on the staff of the healer — the age-old symbol for doctors of medicine.

“Each one of us,” Nuland (1994) notes, “needs a guide who knows us as well as he knows the pathways by which we can approach death” (p. 266, original emphasis). By bringing the special knowledge of the patient and family to care planning, by asking about their meanings, values and goals and by grounding care decisions in this knowledge, the social worker guides the ill person and the family to decisions that will best fulfill their desires and helps to create a respectful death for all involved.

Self Knowledge
Death is a most personal and profound human experience. The combination of physical, social, psychological and spiritual issues involved in death demands that those working in end-of-life care not only have a broad understanding of the issues related to death and dying, but also are personally comfortable with those issues. When we are able to achieve this balance, we may still be challenged. We wonder if we are accurate in our understanding of the client and family’s story. Are our professional caring actions supporting their goals or are these actions merely our own projections of what we hope or wish for them or, perhaps, for ourselves? The skills of self-reflection, living with uncertainty, creativity and flexibility become paramount for success. Our research found that attending to seriously ill patients means that clinicians are exposed to loss, incapacitation, disability, despair and grief, which could be very stressful (Farber, et al, 1999). Adopting an attitude of unconditional positive regard helps the ill person to set the agenda so the social worker better can understand the client’s story. Respecting the story of the client and family while presenting a medical context that may create distress and suffering requires a highly developed set of relational and communication skills.

Personal knowledge of one’s own responses to loss, the professional confidence to be flexible in care planning, and collaboration with other professionals to promote therapeutic relationships with clients and families all support a respectful end-of-life experience. Having gained perspective, the stresses of caring for the seriously ill can be balanced by the personal satisfaction of assisting these people and their relatives in the experience of a death reflective of their hopes and values (Ramirez et al, 1998).

The System of Care
Palliative care social work cannot be done by rote; each case is a unique creation meeting the distinctive needs of the patient and family for a respectful death. Neither can this work be done in a vacuum. Much of what we need to know is how to access and interpret the knowledge of the patient and family. Palliative care social workers must therefore be open to the uncertainty that comes with not owning all of the knowledge as well as have insight into their personal biases in order to maintain the flexibility required to assure that care plans reflect the desires of patient and family.

Our respectful death model has significant implications for how social workers and other clinicians work together in providing appropriate care for the ill person and family. The same approach we use in developing relationship with the client and family – acknowledging their expertise, accepting differences, self reflection, collaboration, building consensus and providing care that supports the client and family’s goals – should be brought to our work with fellow clinicians. Traditional multidisciplinary medical teams do not reflect this parallel process. Defined professional boundaries, hierarchical structure, communication limited to the medical chart, constrained appreciation for discipline-specific expertise restricts the ability of social workers and other clinicians to collaborate and support each other in the challenging work of caring for ill people and families at the end of life (Doyle, D., Hanks, G. W. C., MacDonald, N., 1998).

Interdisciplinary teamwork requires open communication, allowing team members to work together for goal development supporting patient and family values more effectively than individual efforts could achieve. The challenge of creating and maintaining such teams is significant but can be achieved by applying the same model of care that we propose employing for patient and family – discovering and understanding the values and goals of each teammate in an effort to enhance collaboration. Keeping team function or dysfunction from interfering with the intense end-of-life experience of clients is very important. Social workers often uniquely possess the attitudes and skills to facilitate team development while still advocating for a care plan that focuses on supporting their clients’ values and goals. And an integral part of the care team is the family, especially as the patient’s support needs increase.

Family, whether biological or “of choice,” is most often the basic source of daily support for the seriously ill person. Family caregivers must be identified, prepared to do their jobs, and supported, since care plan implementation is “only as good as their primary caregiver” (Farber, et al, 1999, p. 528). Imparting sensitive information to promote an accurate understanding is important to the patient and family being able to make informed decisions (Buckman, 1992). Social workers should begin the exploration of available support systems early, in order to maximize preparedness in the event that the need for daily care arises. One who is seriously ill is often overwhelmed with the immediate circumstances of their illness, as is the family, so no one is projecting much beyond the current moment. The simple question, “Who would care for you if you were no longer able to care for yourself?” often helps the family prepare for this potential future outcome.

Another key social work task is listening to and helping the client and family share feelings and information to address the problems death brings, to raise awareness of differing values and objectives, and to facilitate the consensus-building necessary to help them achieve their desires for their time left together (Monroe, 1993, p. 570; Csikai & Bass, 2000). Returning to Susan’s story, her family was in great distress about her care and had not been guided to develop a consensus on the goals of care.

After meeting with Susan and coming to understand her goals, Pat asked the hospice social worker to join her in a conversation with the children. They began by asking the children what they valued most about their own religious beliefs. It took some time but the children were eventually able to articulate that they value, “God’s love for each of us.” Identifying this core value began to change their view of the situation. Pat asked them to think about how they could be most respectful of their mother. They decided that their role was to love their mother and to try to accept that Susan’s values worked for her.

Pat and the social worker then had a separate meeting with Susan’s husband. They began by acknowledging the husband’s pain and asking how this situation was feeling for him. Pat asked him how he thought his decisions were affecting his wife. They helped the husband reframe his need for control and see that it was his way of loving his wife — he couldn’t bear losing her, so he tried to control all was going on.

To make space for such awareness and sharing, the social worker must master the role of being a listening presence in the company of the client and family, sometimes a difficult task in the face of all the suffering that accompanies palliative and end-of-life care.

The Importance of Story in the Social Work Assessment
The mark of a caring relationship is the intent to induce positive change (Mayeroff, 1990). Yet, in a respectful death, who is to determine what change is positive? This can only be discovered by attending to the story that the client and family tell of their experience, for it is through their story that their suffering is voiced and the clues to its resolution revealed. Most clinicians are not trained to hear clients’ stories and often seek to limit their storytelling in order to maintain diagnostic clarity, support efficiency, and avoid confusion and unpleasant feelings (Waitzkin, 1991). In this process, the patient’s story is neither heard nor honored. The social worker who would hope to orchestrate a respectful death must therefore have an appreciation of the power that story holds in caring for those facing serious illness and their families.

Becoming ill and dying calls for story in two senses: to address the damage to the sense of where one is and where one is going in life, and to convey this sense of being broken to those who inquire, as Frank (1995) explains:

“The conventional expectation of any narrative, held alike by listeners and story tellers, is for a past that leads into a present that sets in place a foreseeable future. The illness story is wrecked because its present is not what the past was supposed to lead up to, and the future is scarcely thinkable” (p. 55).

Indeed, there is a the driving need for the individuals facing illness and death to make sense of and communicate their experience (Cousins, 1979; Broyard, 1992; Topf, 1995). Often facing illness and death brings about major changes in how individuals perceive themselves, others and life.

Suffering has been conceived of as a threat to the self, and the self is revealed in stories, particularly those of suffering. “Nothing so denies us and our stories,” Amato (1990) has observed, “as the denial of our sufferings and sacrifices” (p. 210). The sharing of stories of suffering and sacrifice allows a seriously ill person to fashion a new sense of self with new meanings, essentially rewriting the story of the life that is being lived and is soon to end. The simple act of hearing the story helps the social worker develop a therapeutic relationship that is crucial to the care effort. “All of our interactions put us in relationship with the people that we are serving,” Pat shares, “when you see patients in a relational way it can’t help but impact you.” From this relationship spring the seeds for crafting a life-end story that is respectful and meaningful, but only if the caring relationship is grounded in the patient’s story, as in Susan case:

Susan’s end-of-life was not what many would consider a “good death.” Susan chose to live the end of her life in a way that, by others’ standards might have appeared to include a lot of suffering related to her refusal of pain medications. It was often difficult for her family and hospice team members. The ending she chose, however, had meaning for her. As the family developed a better understanding of Susan’s goals and their role in supporting her, they too came to a better place.

Care must be taken that the goals of professional assessment not take precedence over sharing the patient’s and family’s story. Assessment is a reorganization of the material contained in the story, rewritten in professional language to communicate to the care team what is necessary to support the care effort. Ideally, the assessment utilizes patient-centered interviewing techniques (Steward et al, 1995; Laine & Davidoff, 1996), drawing on the full range of questions represented in Table I (Farber, et al, 1999). Patient-centered interviewing focuses on experiences of illness in the context of clients’ lives and considers treatment decisions as being collaborations toward common ground concerning the care to be dispensed. Still, an interview technique is not the same as sharing a story, for interviews focus on the collection of professionally pertinent data and stories are revealed through dialogue.

Dialogue is distinctive for its exclusive focus on understanding without judging or categorizing (Senge, 1990). The drive to collect data in an interview can inadvertently squelch the telling of the story. Patient-centered interviewing techniques use open-ended questions and probe for meaning, values and goals. Only after hearing the values and goals embedded in the stories of the client and family can a useful care plan, reflective of their wishes, be crafted. The story of the patient and family must first be woven into the assessment so that the care plan can reflect their story in a meaningful way and have healing power (Hunter, 1991).

A respectful death is grounded in the values and goals of the client and family. Simply sharing in the story can be therapeutic for all, for it provides the context in which both patient and family can rewrite the story of their lives together to bring closure and meaning to the end-story. Ideally, a respectful death occurs when the care provided closely supports the authorship of the dying patient and family, with the clinician acting as editor rather than author in the process.

A Witness to Suffering
In our research patients and families identified concerns about abandonment as influential to their experience and stressed the value of having a healthcare team committed to staying the course with them. Suffering occurs in the context of a perceived threat to the integrity of the self (Cassell, 1982), loss of a perceived future and unresolved relational issues. In the face of such discomfort, to rush to action and try to somehow ”fix” things is tempting. This is often counter-productive, for the locus of action stems from our own anxiety and professional training rather than being centered on the needs and goals of the client or the family. In the face of suffering, it is better to “just stand there” rather than to aimlessly or precipitously “do something”.

To be present to those who are suffering, it is important for the palliative care social worker to cultivate what Dass & Gorman (1985) call a “Witness”:

“What’s required is to cultivate a dispassionate Witness within. This Witness grows stronger, can see precisely how we jump the gun in the presence of pain. It notices how our reactions might be perpetuating denial or fear or tension in the situation, the very qualities we’d like to help alleviate. The Witness catches us in the act, but gently, without reproach, so we can simply acknowledge our reactivity and begin to let it fall away, allowing our natural compassion to come more into play. The Witness gives us a little room.” (p. 67)

The development of such a presence in the face of suffering enables the social worker to stay engaged without rushing to relieve that which may not be relievable. We see this in Trudy’s case:

As Kristin made several attempts to discuss safe care options over the course of two days, Trudy became deeply resentful and accused Kristin of not having been honest with her. On the third morning Kristin went to Trudy’s room again, very uncertain about how to resolve the situation. Trudy met her with intense anger.

Kristin sat quietly with Trudy then began by observing that this was a tough situation with no easy solutions. She reviewed some of the things that had occurred leading up to this decision point then, she said, “Trudy, this is such a hard situation, what do you think the solution is?” Trudy thought for a while, then responded, “I guess it’s time for me to go to a nursing home.” Kristin was amazed at this response and noted the immediate change in Trudy’s demeanor: “She came back to her old self again and began to make the best of a really horrible situation. Once she was listened to and not pushed, she was able to come to her own decision, which gave her the power that she wanted.” Kristin had taken the time to understand what made life meaningful for Trudy. Because of the safety issues Hospice was unable to honor Trudy’s desire for autonomy and independent living, but Kristin was able to respect Trudy’s need to make decisions for herself and retain a sense of control.

Staying engaged helps reduce suffering by allowing the ill and their families to share their suffering, thereby addressing their fears of isolation and abandonment. Staying engaged means sharing the patient’s and family’s experience, not being a detached problem solver. It requires becoming comfortable with silence, something with which professionals, taught to be instrumental and in control, often struggle (Monroe, 1993). Staying engaged creates a safe space for those suffering to come to terms with their real and impending losses. Kristin did something for Trudy that was very powerful: she sat with Trudy’s suffering, fully committed to staying the course with her, until Trudy could come to her own resolution. There is therapeutic power in being present to suffering.

Summary
Social workers are not well-prepared by their professional education to provide end-of-life care services, but they do come with knowledge and skills helpful to ill people, their families, and the palliative care teams that support them. Pat and Kristin both stressed the value of learning the client’s story – what they value, what gives them meaning and strength – and discovering the client’s personal goals. Kristin observed that the value of this respectful death model is that “it puts the patient in the center of the system, across the system.” It informs the development of the plan of care and the resources that social workers bring to support the family.

In years of caring for and learning from the families she has served, Pat noted that often “how we try to ‘save’ people can be abusive.” She added that we must work to be present out of our “giftedness rather than out of our own need.” Both of these palliative care team members believe deeply in the need to recognize and separate their own values and discomfort from those of the ill person and family. Pat explains, “I must acknowledge first what is going on with me, I must name my own discomfort, before I can be a witness to your suffering.” Here is where we begin to work with the ill person and their family in a meaningful way. This requires learning the deeper techniques of open questioning, listening, and being present to the client, the family, ourselves and our co-workers on the clinical team.

Suggested Questions to Explore Patient/Caregiver Perspectives
(Farber, Egnew, Herman-Bertsch, 1999)
(Questions may be asked of Patient and Caregiver alone or together)

Awareness

Patient
Caregiver
My Death:
My Loved One’s Death:
Many Patients with this condition tell me they think about the possibility of dying. They have questions about this. Do you? You say you will beat this illness. Is there any time, if only for a few months, when you are not so sure? How does your cultural tradition approach a serious illness like yours? What traditions, beliefs or rituals should we be aware of?
Many families caring for a person with this condition tell me they think about the possibility of their loved one dying. They have questions about this. Do you? You/your loved one says (he/she) will beat this illness. Is there any time, if for only a few moments, when you are not so sure? How does your cultural tradition approach end-of-life? Are there any traditions, beliefs or rituals we should be aware of?
My Life Has Changed:
How has your life changed since you began caring for your ill loved one that you are aware of?
Uncertainty:
Uncertainty:
When you think about getting very sick, what worries your the most?
When you think about your loved one getting very sick, what worries you the most?

Managament/Coping

Coping/Physical: Coping/Stamina:
How do you cope with the physical limitations and challenges of your illness? How do you maintain the energy to care for your loved one and at the same time renew your own physical, emotional and spiritual strength?
Coping/Financial: Coping/Financial:
How do you cope with the financial demands resulting from your illness? How do you and your loved one cope with the financial demands resulting from (his/her) illness?
Coping/Psychosocial-Spiritual: Coping/Psychosocial-Spiritual:
As you think about your current condition, what are the hardest issues for you? As you think about your loved one’s current condition, what are the hardest issues for you?
  Coping/Resources:
  Do you have all the resources you need to care for your loved one? If not, where do you need help?
   
   

Suggested Questions to Explore Patient/Caregiver Perspectives

Patient
Caregiver
Relationship:    
Continuity:   Continuity:
What roles and responsibilities do you wish to maintain?   What roles and responsibilities do you want your loved one to maintain? What roles and responsibilities do you want to maintain?
Change:   Change:
What roles and responsibilities have you had to give up?   What roles and responsibilities have you had to tak on/give up due to your loved one’s illness?
Conflict:   Conflict:
How do you deal with the changes in the way you relate to your relative or caregiver caused by your illness?   How do you deal with the changes in the way you relate to your loved one caused by his or her illness?
Growth:   Growth:
Has the illness increased your appreciation of your abilities or potentials?   Has caring for your loved one increased your appreciation of your potentials?
Personal Experience:
Suffering:   Suffering
As you think about your current condition, what is the hardest for you? What do you fear most?   As you think about your loved one’s current condition, what is the hardest for you? What do you fear most?
Loss:   Loss:
What are the hardest losses you have experienced with this illness?   What are the hardest lossess you have experienced while caring for your loved one?
Spiritual:   Spiritual
From what sources do you draw your strengths?
What role does spirituality play in your life?
  From what sources do you draw your strength?
What role does spirituality play in your life?
Reconciliation:   Reconciliation:
If you died tonight, is there anything you would leave unsaid or undone that you would regret?   If your loved one died tonight, is there anything you have not said or not done that you would regret?
Physical Discomfort:   Symptom Management:
Are you suffering physicall in any way? Afraid of anything?   Are there any symptomes your loved one is experiencing that cause you to suffer?

REFERENCES

Amato, J. A. (1990). Victims and Values: A History and a Theory of Suffering. New York, NY: Praeger Publishers.

 

Becker, E. (1973). The Denial of Death. New York, NY: Free Press.

 

Biestek, F. (1957). The Casework Relationship. Chicago, IL: Loyola University Press.

 

Broyard, A. (1992). Intoxicated by My Illness. New York, NY: Potter.

 

Buckman, R. (1992). How to Break Bad News. Baltimore, MD: Johns Hopkins University Press.

 

Byock, I. (1997). Dying Well. New York, NY: Riverhead Books.

 

Cassell, E. J. (1982). The nature of suffering and the goals of medicine. New England Journal of Medicine, 306(11), 639-645.

 

Cassell, E. J. (1991). The Nature of Suffering and the Goals of Medicine. New York, NY: Oxford University Press.

 

Charmaz, K. (1991). Good Days, Bad Days: the self in chronic illness and time. New Brunswick, NJ, Rutgers University Press.

 

Corbin, J.M., Strauss, A.L. (1988). Unending Work and Care: managing chronic illness at home. San Francisco, CA: Jossey-Bass Publishers.

 

Cousins, N. (1979). Anatomy of an Illness as Perceived by the Patient. New York, NY: W. W. Norton.

 

Csikai E. L., & Bass, K. (2000). Health care social workers’ views of ethical issues, practice, and policy in end-of-life care. Social Work in Health Care, 31(2), 1-22.

 

Dass, R., & Gorman, P. (1985). How Can I Help. New York: Alfred A. Knopf.

 

Doyle, D., Hanks, G. W. C., MacDonald, N., editors (1998). Oxford Textbook of Palliative Medicine, 2nd ed. New York: Oxford University Press.

 

Egan, M., & Kadushin, G. (1999). The social worker in the emerging field of home care: Professional activities and ethical concerns. Health and Social Work, 24(1), 44-55.

 

Engel, G. L. (1977). The need for a new medical model: A challenge to biomedicine. Science, 196:129-36.

 

Farber, S. J., Egnew, T. R., & Herman-Bertsch, J. L. (1999). Issues in end-of-life care: Family practice faculty perceptions. The Journal of Family Practice, 49(7), 525-530.

 

Farber S. J., Egnew, T. R., Stempel, J., & Vleck, J. (2000). End-of-Life Care. AAFP Home Study Self-Assessment Program Monograph No.250/251 (March/April). Kansas City, MO: American Academy of Family Physicians.

 

Farber, S. J., Egnew T. R., & Herman-Bertsch, J. L. (2002). Defining effective clinician roles in end-of-life care. The Journal of Family Practice, 51(2):153-158.

 

Farber. S. J., Egnew, T. R., Herman-Bertsch, J. L., Taylor, T. R., Guldin, G. (2003). Issues in end-of-life care: Patient, caregiver and clinician perceptions. In Press: Journal of Palliative Medicine.

 

Farber, S. J. and Farber, L. (2001). My Care Guide: A plan for personal healthcare (unpublished manuscript). Multicare Health System, copywrite 2001. Tacoma, WA.

 

Feifel, H., editor (1959). The Meaning of Death. New York. NY: McGraw Hill Book Co.

 

Fox, E., Landrum-McNiff, K., Shong, Z, et al (1999). Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart or liver disease. JAMA, 282(17):1638-45.

 

Frank, A. W. (1995). The Wounded Storyteller: Body, Illness, and Ethics. Chicago, IL: University of Chicago Press.

 

Glaser B.G., Strauss A. (1968). Time for Dying. Chicago, IL: Aldine.

 

Hunter, K. M. (1991). Doctors’ Stories: The Narrative Structure of Medical Knowledge. Princeton, N. J.: Princeton University Press.

 

Kaufman, S. R. (1986). The Ageless Self. Madison, WI: University of Wisconsin Press

 

Kubler-Ross, E. (1969). On Death and Dying. New York, NY: MacMillin.

 

Laine, C., & Davidoff, F. (1996). .Patient-centered medicine. Journal of the American Medical Association, 275, 52-56.

 

Langer, E., (1990). Mindfulness. Cambridge, MA: Perseus Publishing.

 

Mayeroff, M. (1990). On Caring. New York, NY: HarperPerennial.

 

Monroe, B. (1993). Social work in palliative care. In D. Doyle, G. W. C. Hanks & N. MacDonald (Eds.), Oxford Textbook of Palliative Care (pp. 565-574). London: Oxford University Press.

 

National Association of Social Workers, (1994). Client self-determination in end-of-life decisions. In Social Work Speaks: NASW Policy Statements (3rd ed., pp. 58-61). Washington, DC: NASW Press.

 

Nuland, S. (1994). How We Die. New York, NY: Knopf.

 

Ramirez, A., Addington-Hall, J., & Richards, M. (1998). ABC of palliative care. The carers. British Medical Journal, 316(7126), 208-211.

 

 

Rogers, C. R. (1973). Client-centered therapy: My philosophy of interpersonal relationships and how it grew. Journal of Humanistic Psychology, 13: 3-15

 

Senge, P. M. (1990). The Fifth Discipline: The Art and Practice of the Learning Organization. New York, NY: Doubleday/Currency.

 

Sieppert, J.D. (1996). Attitudes toward and knowledge of chronic pain: A survey of medical social workers. Health and Social Work, 21(2), 122-130.

 

Steward, M., Brown, J. B., Weston, W. W., McWhinney, I. R., & Freeman, T. R. (1995). Patient-Centered Medicine. Thousand Oaks, CA: Sage Publications.

 

Topf, L. N. (1995). You Are Not Your Illness: Seven Principles for Meeting the Challenge. New York, NY: Simon & Schuster.

 

Waitzkin, H. (1991). The Politics of Medical Encounters: How Patients and Doctors Deal with Social Problems. New Haven, CT: Yale University Press.

 

Weisman, A. (1972). On Dying and Denying: A psychiatric study of terminality. New York, NY: Behavioral Publications.

 

Wesley, C. A. (1996). Social work and end-of-life decisions: Self-determination and the common good. Health and Social Work, 21(2), 115-121.

 

Yagoda, L. (2002). End-of-life care for older clients: What social workers should know about the Medicare hospice benefit. National Association of Social Workers internet website). Washington, DC: NASW


Warning: count(): Parameter must be an array or an object that implements Countable in /nfs/bronfs/uwfs/hw00/d77/pcare/wordpress/wp-includes/class-wp-comment-query.php on line 405