Facing one’s own mortality is one of life’s greatest challenges, one that makes all people vulnerable. Despite the successes of the hospice movement and advances in the field of palliative care, physical and existential sufferings are still common at the end of life. At the lowest estimates, every year about 20 million people worldwide need end-of-life palliative care, including over a million children.¹ Even in North America, Europe, and Australia, with developed palliative care programs, there are many unmet needs.¹ Access to palliative care is considered by many to be a basic human right.² The UN Committee on Economic, Social and Cultural Rights stresses the importance of providing “attention and care for chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity.”³

The palliative care movement also considers dying pain free and with dignity a basic human right. Human rights groups see denying access to pain relief to the dying as tantamount to torture. For people marginalized by social or economic circumstances, illiteracy, or cultural or language barriers, suffering may be compounded by additional burdens. As a result, end-of-life care goals and priorities for marginalized patients extend beyond clinical concerns and may require providers to act as advocates on behalf of social and economic equity.^4,5,6 This chapter identifies key issues for the dying patient, focusing on difficulties encountered in medical discussions and in decision making in the face of death in marginalized patients in the United States. Various end-of-life health-care delivery models are summarized along with practice guidelines and other strategies that may improve the quality of life for dying patients.

DEFINING A GOOD DEATH IN THE CONTEXT OF SOCIAL INEQUITIES

How does one define a “good death” for the person whose capabilities in life have been constrained by disadvantage, or whose imminent death may result, in whole or in part, from societal factors responsible for socioeconomic inequalities or racial or ethnic-based inequities? Life expectancy among vulnerable persons is generally lower than their more privileged counterparts.⁷ Their deaths are often premature, occur at younger ages, and are associated with a markedly diminished quality of life.

Many factors, including religious or spiritual beliefs and cultural heritage, determine how one thinks about death and dying, advance directives, hospice, and the concept of a good death. For example, not all persons value dying at home or have the support to do so. Homelessness in particular rules out this option. In addition to lack of housing, homeless persons are challenged by having no safe place to store medication and by unreliable transportation to follow up with health-care providers. Paying particular attention to a patient’s conception of a “good death” and the support needed to achieve it can in itself relieve suffering. Avoiding the temptation to engage in stereotyping by social, racial, ethnic, or cultural categories and maintaining a focus on the quality of care offered to each individual or family (Table 24-1) is a first step to easing suffering at the end of life.

DIFFICULTIES IN DISCUSSING DEATH AND DYING

In the case of Mr. Smith, and generally for all patients at risk for death, clear, ongoing, intelligible, and compassionate communication is essential. When discussing difficult diagnoses and prognosis with patients and families, it is critical to attend to timing and setting. Additionally, the ability to exchange information is influenced by native language, cultural backgrounds, education, and literacy, as well as by trust, continuity, and the relationship between patient and providers. The emotional and psychological nature of conversations about serious illness and death may interfere with any patients’ ability to hear, understand, or remember conversations with health-care providers.

COMMUNICATION BARRIERS

Obvious communication barriers occur when patients and providers do not share the same native tongue or professional language (see Chapter 31). Highly technical medical vocabulary may be foreign to patients. Less evident, but perhaps more problematic, are cases in which a patient’s primary language is a dialect of a shared native tongue, such as black vernacular English or Creole. In such cases, the need for translation may not be apparent even though the parties may not fully comprehend each other.

Literacy, which entails not only the skill to read or write in a primary language well enough to function in society but also the ability to understand health information provided orally, including instructions for procedures or therapies (see Chapter 15) also has a profound effect on communication between patients and health-care providers. Health literacy requires the negotiation of explanatory models, and some patients or surrogate decision makers, including those with Durable Power of Attorney authority, may not understand basic physiologic processes well enough to comprehend medical explanations, even when such explanations are presented in lay terms.

TERMINAL ILLNESS AND DISCUSSIONS OF PROGNOSIS

Discussing death and delivering bad news is not an easy task, even for the seasoned provider. It may require one to confront one’s own mortality or unresolved grief from a personal loss. Communicating difficult news may be particularly problematic for providers who see death not as an inevitable part of life but rather as the failure of the limits of medical skill or technology. As a coping strategy, they may overuse technical language, defer the conversation, or, worse, avoid the patient altogether.

Providers who care for large numbers of vulnerable patients may come to view death as a failure of social responsibility or they may worry that communicating bad news may diminish hope. The desire to maintain hope may explain the general tendency for physicians^8,9,10,11 to overestimate prognosis by a factor of 3–5. The consequences of these overestimates are serious and may, in part, account for late referrals to hospice when patients have only hours to days, rather than weeks to months, to benefit from quality palliative care.

Do we know what and how much patients want to know about their prognosis? Few studies have identified patient preferences regarding information sharing before receiving a terminal diagnosis.¹² The question often presumes that patients already know that they have a terminal or potentially fatal condition and that they wish to get a realistic picture of the future. This may be based on a hidden assumption about an “ideal” patient, one who shares the Western ethical precepts of truth-telling and respect for patient autonomy.¹³ Cultural differences influence preferences about information sharing and the willingness to discuss prognosis. For some, discussing death may be tantamount to wishing it upon the patient. Some families prefer that the patient never know of their condition, and that decision making be carried out by a proxy.^14,15 These values and preferences may conflict with those of the provider or others involved in care of the dying patient.

The ability for a patient to hear, understand, and accept difficult news may be influenced by patient trust in the provider or the health-care system. In the case of Mr. Smith, the first intimation of a poor prognosis came early during his admission when asked about his resuscitation preferences by a hurried health-care provider. Later, receiving the news of his cancer diagnosis from another physician, one with whom he had no prior relationship, increased his suspicions. Had he received the information in a longstanding primary care relationship, his acceptance and understanding might have been different. For some vulnerable persons, access to care is limited, making continuity of care at the level of health services or of providers an unrealistic option and uncoordinated care in resource-constrained settings more common. In the absence of long-term continuity, compassionate communication is all the more critical.

DELIVERING BAD NEWS

Clinicians can learn to deliver bad news in a manner that can aid in patients’ acceptance and facilitate their participation in health-care decisions. Advance preparation is a key prerequisite. Medical facts should be confirmed prior to having the discussion and the providers must be prepared to discuss them in simple language. Every effort should be made to invite not only medical staff but also family or others important to the patient. A six-step protocol for delivering bad news, based on the work of oncologist Robert Buckman, has been widely adapted and endorsed¹⁶ (see “Core Competency”). By practicing the following steps in advance, the provider can increase his or her own comfort level before facing a difficult situation and, perhaps most importantly, ensure that they will not deliver unwanted information.

FAMILY MEETINGS

Far too often, when medical information is shared, it is misunderstood, misinterpreted, and confusing to a patient. When bad news is delivered, even in the most clear and compassionate manner possible, the patient may recall very little of what was presented, and what they do remember is often inaccurate. In a time of great shock, it is important to have another person present to participate in the discussion, take notes, and ask questions. Ideally, this person would be the surrogate decision maker, if one has already been established.

For those who wish to have multiple family members present and involved in the decision making, then a family meeting would be most useful. What is especially useful in the Buckman protocol described earlier is its adaptability for use in a family setting. It can provide structure to the meeting in a way that establishes order and allows inclusion of all those present. Beginning the meeting with a question probing understanding of the diagnosis and prognosis allows the team to hear from the patient and family in their own words what they understand as the medical problem. Having the patient or family speak first not only shows respect but also establishes the team’s listening role, which is critical in providing care. It also allows the team to deliver the news in a framework informed by the patient’s understanding. Whenever possible and appropriate, it is important to include other members of the interdisciplinary health-care team. Chaplaincy and social work support can be of tremendous help during the meeting and will help the team to recognize needs that may impact the course of future care.

A central tenet in medical practice is that individuals have the right to autonomous choice in receiving or refusing medical care. This presumes that such choices are intentional, informed, and free of controlling influences.¹⁷ However, a range of circumstances that disproportionately affect the vulnerable (e.g., language, education, or literacy barriers; mental disorders; economic constraints) may undermine the ability of providers to understand and assure that the choices are clearly and freely made. Ideally, end-of-life decisions should be guided by a person’s values and wishes, and it is important for health-care providers to learn what these are. Chaplaincy assessment can be invaluable in this regard.

Various hospices, palliative care organizations, and providers promote the use of values history forms (http://c.ymcdn.com/sites/www.hospicefed.org/resource/resmgr/hpcfm_pdf_doc/valueshistoryform.pdf) that provide a useful set of exploratory questions such as the following: “What goals do you have for the future?” “How satisfied are you with what you have achieved in your life?” or “What do you fear most?”¹⁸ Written for a more general audience, some of the questions in these forms are oriented to life conditions that may not be relevant to the poor, the homeless, refugees, or other vulnerable persons. In these circumstances, rather than asking generally about future goals and past achievements, one might inquire more specifically, “What do you hope for in the near future in regard to living situation, physical comfort, medical conditions, relationships, etc.?” or “Where do you find satisfaction?”

An additional ideal is that goals of care and values be documented in a written advance directive, a living will, POLST (Physician’s Order for Life Sustaining Treatment) (http://www.polst.org/), or other formal or legal document. This helps ensure that if patients are unable to speak for themselves, their autonomous wishes nonetheless will be known and carried out. Although Mr. Smith demonstrated capacity to understand the information, should his disease progress, his capacity may diminish. Persons who are deemed unable or incapacitated to make informed end-of-life decisions need to have a surrogate decision maker for them.

In the absence of an advance directive, designated decision makers could be those closest to the patient. When suitable contacts, family, or legal guardians are available, they may be asked to provide a substituted judgment—one that is based on the wishes of the patient (and not on the surrogate’s wishes). In some cases, there may be no one who can speak for the patient. Social isolation is common among vulnerable patients with serious life-limiting conditions. A medical social worker may investigate the patient’s support system to identify possible surrogates. Physicians, hospital ethics committees, hospital surrogate decision teams, or courts may need to serve in that role. Without knowledge of the person’s values and wishes, quality-of-life criteria have been applied to decisions based on what is in the best interest of the patient. These determinations can be challenging, at best. For example, consider the case of a young man found unconscious and badly beaten, and without any form of identification. An emergency room evaluation reveals severe nonsurgical brain injury; he is stabilized and admitted to intensive care. Two weeks later, he remains comatose. He also remains a “John Doe” with no known identifiable family members, friends, or social network. What decisions should be made about his care, particularly if his neurologic condition fails to improve and a diagnosis of persistent vegetative state is made? Who should make these decisions and whose values should guide the decision-making process on his behalf?

Values become a contestable arena for vulnerable patients at the end of life. This is particularly true for decisions involving medically futile interventions, often defined as life-sustaining interventions that lack medical efficacy and lead to little or zero chance of survival.^19,20,21 Providers should not be required to provide services that offer no meaningful benefit to the patient. However, complex decisions require the inclusion of the patient’s personal values in defining what is deemed meaningful. Ultimate decisions regarding the withdrawal or withholding of medically futile interventions may be ethically defensible but still subject to legal challenge. Furthermore, larger societal forces (e.g., poverty, war, and trauma) may have contributed to the conditions that directly or indirectly led to death in the first place. In some cases, dying patients who have lacked access to health care may view discussion of withdrawal or withholding of care a further example of social injustice. In addition to principles of beneficence and nonmaleficence then, other ethical principles—most notably justice and equity—may need to be considered in such end-of-life decisions.

PALLIATIVE CARE SERVICES