Approaching Death Improving Care at the End of Life (1997) / Chapter Skim
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3 Caring at the End of Life
3 Caring at the End of Life
Pages 50-86
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From page 50... ...
Attempts to mitigate the negative consequences of advanced technologies and narrow medical approaches to human problems have sometimes been based on the results of research or systematically defined professional consensus; other times, their basis has been primarily ethical or philosophical. Such attempts involve an acknowledgement that death brings losses but also a declaration that people can grow emotionally and spiritually as death approaches (see, e.g., Bernard and Schneider, 1996; Byock, 1997a; de Hennezel, 1997)
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From page 51... ...
The number and variety of these initiatives reinforce the basic messages that people not diseases or technologies are the central concern of health care and that people are much more than their illnesses. These initiatives likewise reinforce and indeed have shaped and been shaped by efforts to improve care for those approaching death and to establish palliative care as a legitimate clinical field.
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From page 52... ...
DIFFERENCES IN DYING PATHWAYS: ILLUSTRATIVE CASES Over 300 years ago, the playwright John Webster wrote in The Duchess of Malfi, "I know death bath ten thousand several doors for men to take their exits." The doors to death remain many and varied, although, as Chapter 2 described, today's most common patterns of death differ in key ways from the past. This section supplements the definitional and statistical discussions presented in Chapters 1 and 2 with a more qualitative consideration of how people may die and how care for dying patients may need to be adjusted to their circumstances.
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From page 53... ...
Others describe unusual situations that particularly strain care systems or underscore the inevitable limits of human arrangements in coping with every possible problem. As explored further in Chapter 4, the dying process is also affected by the health care system, including the care options available in different communities and the expertise, values, and circumstances of health care professionals.
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From page 54... ...
The care team anguished over whether to continue intrusive care in the intensive care unit in order to establish a clear diagnosis or to shift toward a primarily palliative approach. Her condition continued to deteriorate, and she became minimally responsive.
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From page 55... ...
The daughter felt that the intensive care environment deprived her of the opportunity to spend time with her father, made informed decisionmaking difficult if not impossible, and subjected her father to intrusive tests and interventions that would make her memory of his dying a continuing source of guilt and regret. She was, however, too drained of energy to complain and felt no one would respond anyway.
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From page 56... ...
Hospital social workers noted that he qualified for government-sponsored health insurance. Then, Mike developed severe hepatic coma and was admitted to the pediatric intensive care unit.
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From page 57... ...
Camille Santos turned to a local hospice where a social worker provided information about feasible and effective pain management, helped her through role playing to prepare for discussions with her family and her father's physician, and generally gave her encouragement and emotional support. When the physician again responded negatively to requests for stronger pain medication, the daughter was ready to ask for referral to the hospice, which quickly provided effective pain relief and guidance about how the family should prepare for Mr.
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From page 58... ...
He was resuscitated after intubation, fluids, and 20 minutes of external cardiac massage. During the next 24 hours in the medical intensive care unit, Mr.
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From page 59... ...
establishing clinical and personal goals with patients and those close to them; and 3. fitting care strategies physical, psychological, spiritual, and practical to patient goals and circumstances.
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From page 60... ...
Several clinical predictive models have been developed and have demonstrated their value in helping clinical investigators, intensive care directors, clinicians, and researchers understand patient risk factors as an ele 1This discussion draws on Berger et al., 1992; Pollack et al., 1994; Thibault, 1994; Zimmerman et al., 1994; Knaus et al., 1995; and Lynn et al., 1996.
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From page 61... ...
It may likewise haunt physicians and prompt them to avoid patients in a time of particular vulnerability and need. Not surprisingly, a prominent component of initiatives to improve medical education in end-of-life care includes role playing and other exercises involving the communication of bad news to patients and families (see Chapter 8~.
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From page 62... ...
62 APPROACHING DEATH More generally, patients and family should be able to get as much information as they want; for some, that will be a great deal, for others, much less. The basic view of those caring and advocating for people who are dying is that patients and those close to them should always be able to have their questions answered fully, and they should be able to get information when they need it, day or night.
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From page 63... ...
Moreover, those who have experienced discrimination and deprivation may distrust a judgment that their prognosis is terminal and the suggestion that aggressive attempts to prolong life will be ineffectual and even hurtful. Thus, sensitivity to the social and cultural values and experiences of patients and those close to them is important in guiding communications about care at the end of life.
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From page 64... ...
Sometimes, a patient's preference may be to defer as much as possible to the physician, the hospice team, or family and to avoid direct discussion of options, risks, and benefits (Medica Foundation, 1994; Koenig and Gates-Williams, 1995~. Thus, physicians, nurses, social workers, and others caring for dying patients cannot assume that patients will wish to discuss death explicitly or will want to be actively involved in planning their care.
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From page 65... ...
Social workers may also be very much involved in discussions of finances, the availability of services, and coping mechanisms. One challenge for those involved with dying patients and those close to them is to establish effective communication among members of the health care team and relevant administrative personnel.
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From page 66... ...
Advance care planning often includes written directives. The directives and their legal context are discussed in Chapter 7.
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From page 68... ...
In contrast, one study of interest in advance directives found that the 5 percent of patients who were not at all interested in advance directives were more likely than the other 95 percent to have spent time in an intensive care unit (Gilligan and Jensen, 1995~.
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From page 69... ...
F of durable power of attorney documents Preferences Discuss and document C, P F preferences for end-of-life care and make arrangements as appropriate Discuss hopes and expectations C
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From page 70... ...
For example, a small study of Navajos found that 86 percent believed that talking about advance directives is a "dangerous violation of traditional Navajo values and ways of thinking" (Advance Care Planning Conflicts with Navajo Values, in Advances/A Bridge, Issue 1, page 6, 1996)
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From page 71... ...
Inadequate processes for patient and family advance care planning and lack of clinical information about patient prognosis and preferences have been identified as problems. Efforts to improve information, decisionmaking, and outcomes have sometimes proved disappointing.
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From page 72... ...
· 1 1 · · 1 ~ 1 In the Individual use ot advance directives and physician regard tor such directives (Sehgal et al., 1996~. Given this multiplicity of influences on advance care planning and the limited evidence of the effectiveness of written directives, it is not surprising that a number of observers have questioned the emphasis on such documents (see, e.g., Lynn, 1991; Lo, 1995; Solomon, 1995; Emanuel, 1996~.
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From page 73... ...
Physical therapists, pharmacists, nutritionists, and others play variable roles depending on specific patient needs, and the availability of family care can be a major consideration in determining whether home hospice care is feasible for a patient. (The concept of the palliative care team is discussed further in Chapter 4.)
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From page 74... ...
It includes but is not limited to the identification and treatment of depression, anxiety, and other common psychological problems identified in Box 3.5. Care typically combines clinical and nonclinical elements.
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From page 75... ...
The diagnosis and management of depression in people with advanced illness is, however, important in its own right, although conventional treatments such as siow-acting medications or psychotherapy may be of limited value for those with a or restricted communication capacities. Psychological caring involves recognizing and managing emotional barriers to accepting incurable illness and preparing for death.
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From page 78... ...
The appropriate response might be to arrange conversations with a social worker, psychologist, chaplain, or clinician skilled in explaining medical problems to laypeople. A hospital ethics committee may also be invoved.
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517~. The role of spiritual caring is, in principle, widely recognized in hospital provisions for chaplains and religious services and inclusion of chaplains or other religious advisers in hospice and hospital palliative care teams.
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From page 80... ...
Box 3.6 suggests just some of the practical issues that dying patients and those close to them may have to face. Some are not applicable to those who die suddenly or very quickly, and some are more relevant to those whose dying is managed in the home rather than in an institution.
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From page 82... ...
1 J 1 1 For situations in which the categorizations in Table 3.3 fit well, many clinicians finci them helpful because concepts anci terms help organize anci regularize care plans. The labels serve as a shorthand for communicating a coherent plan of care.
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From page 83... ...
New Models of Care at the End of Life: Mixed Management Although health care and public language have been comfortable with a "transition from cure to care" concept, the committee concluded that this traditional conceptualization does not capture or support the reality of simultaneously pursuing a broad array of desired ends. Figure 3.1(A)
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From page 84... ...
many of the symptom problems that afflict dying patients could be either eliminated or more readily managed. , c, For example, the body does not usually accommodate physiologically to chronic pain (Meyer et al., 1994; Woolf and Doubell, 1994~.
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From page 85... ...
Revised Model for Cancer Care Diagnosis Recurrence Palliation/symptom control Death preparation > Death Curative efforts Life-prolonging therapies Palliation/symptom control Death preparation Family support 85 Bereavement Support C Mixed Management of Various Eventually Fatal Illnesses Diagnosis Recurrence > Death Disease-modifying therapies Palliation/symptom control Advance care planning/death preparation Family support Bereavement Support FIGURE 3.1 Alternative models of end-of-life care.
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From page 86... ...
CONCLUSION Care at the end of life has both a specific focus on those approaching death and a very expansive interest in the patient's family and friends; the health care team; and, ideally, the larger, caring community that tends to its members in both health and sickness. This caring community most immediately includes neighbors, co-workers, employers, and members of religious and voluntary service organizations, but it also extends to those in government and communications whose policies or images may nourish the caring spirit or subvert it.
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