Approaching Death Improving Care at the End of Life (1997) / Chapter Skim
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4 The Health Care System and The Dying Patient
4 The Health Care System and The Dying Patient
Pages 87-121
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From page 87... ...
who are prepared to determine what care is appropriate, to arrange its provision, and to monitor performance for consistency with organizational and external norms. Broadly, this means having the capacity to provide or arrange for symptom prevention and relief; attention to emotional and spiritual needs and goals; care for the patient and family as a unit; sensitive communication, goal setting, and advance planning; interdisciplinary care; and · services appropriate to the various settings and ways in which people die.
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From page 88... ...
Nationally, there are roughly 6,000 hospitals, 16,000 nursing homes, 11,000 to 15,000 home health care and hospice agencies, 650,000 generalist and specialist physicians, 2 million nurses, tens of thousands of social workers involved in health cared and numerous other categories of health personnel and facilities including several hundred health maintenance organizations (HMOs) and other managed care and health insurance arrangements.
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From page 89... ...
That continuum is clearly evident in the nation s managed care organizations, which range from fairly strongly integrated systems such as Henry Ford to weakly linked entities based on limited and often unstable contractual relationships. A hospice organization is a specialized care system that emphasizes palliative care for terminally ill people and their families and that may like managed care organizations be more or less strongly integrated.
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From page 90... ...
The committee uses the term care system to highlight the special role in care for terminally ill patients and frail individuals more generally of nonmedical services such as spiritual and bereavement counseling, respite care, and housekeeping assistance. In addition to formal or organized health care systems, informal care systems can also be distinguished; they include the family, religious communities, and folk culture (Kleinman, 1978; Kleinman et al., 1978~.
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From page 91... ...
They offered options for life-prolonging but invasive treatment; he declined. He was discharged home with home care and follow-up appoint
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From page 92... ...
The case attracted the attention of the hospital ethics committee, which concluded such clearly inappropriate care indicated serious system problems. It began to mobilize an institution-wide effort at self-examination, staff education, process changes, and quality measurement and improvement.
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From page 93... ...
"Millie Morrisey" The problems of appropriate end-of-life care for nursing home patients are increasingly being recognized. This case illustrates both inadequate expertise in palliative care and faulty organizational procedures for assuring that patient and family wishes are respected.
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From page 94... ...
The niece was still upset, and the nursing home staff concluded they needed to avoid similar problems in the future. The nursing director learned that she could participate in a new statewide working group comprised of many health care, social service, and religious organizations that were attempting to devise clinical and administrative guidelines to understand and honor patient and family goals and to assure excellent end-of-life care.
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From page 95... ...
This discussion starts with the hospital because it is still the most frequent site for end-of-life care, despite increased pressure from various sources to shift care to other settings. Later sections consider nursing homes, home care as part of a hospice program, home care without hospice, and coordination of care within and across settings.
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From page 96... ...
This shift can be expected to continue as physicians, nurses, social workers anci others working with hospitals, hospices, nursing homes, anci professional anci community eclucation programs help crying patients
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From page 97... ...
. What care options are available for dying patients within the hospital, for example, a designated area of palliative care beds governed by different rules regarding visiting hours and other matters for dying patients?
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From page 98... ...
What structures and processes are in place to help patients and families with transitions to or from the hospital and other care settings? What relationships exist with nursing homes, home care agencies, hospices, and other organizations that care for or assist dying patients?
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From page 99... ...
Nursing Homes The care of dying patients will be an increasingly important issue for nursing homes in future years as the number of older people most at risk for nursing home admission grows and as hospitals and managed care plans continue to minimize hospital stays. Home care agencies, however, are caring for some patients who might previously have been admitted to nursing homes, although the extent to which home care substitutes for inpatient care is debated and the growing cost of home care is creating increasing concern (see the discussion later in this chapter)
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From page 100... ...
Cancer caused 17 percent of the deaths among the nursing home patients compared to 50 percent in the hospice and home care groups. Only five of the nursing home deaths were considered unexpected.
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From page 101... ...
. · What internal palliative care expertise is available to guide physical, psychological, spiritual, and practical caring for dying patients and those close to them?
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From page 102... ...
Ethics committees are helpful, but more than ethical problems are involved. Home Care Home Care with Hospice In the United States, hospice care is usually intended to help people die comfortably at home, although inpatient care and inpatient hospice programs have a role (see generally, Zimmerman, 1986; Mor, 1987; Buckingham, 1996~.
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From page 103... ...
What education and training related to endof-life care are available to hospice personnel? If home hospice care proves insufficient for a patient's needs, what are the arrangements for hospital or nursing home care?
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From page 104... ...
Even more broadly, this kind of work may contribute to improved care for those with serious chronic illness who are not considered to be dying. Early studies comparing hospice and nonhospice care did not find as much difference in symptom control as advocates might have expected, although the difficulty of conducting research and the variability of research settings and designs have complicated comparisons.
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From page 105... ...
Home Care without Hospice Home care through alternative arrangements is important for people who do not qualify either for inpatient care or for hospice programs. This latter group includes many people with serious chronic illness (e.g.
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From page 106... ...
The debate about the cost-effectiveness of home care in averting nursing home or hospital use is reviewed in Chapter 6. For end-of-life care at home without hospice, questions generally should raise the issues noted in earlier sections for both home hospice care and nursing home care.
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From page 107... ...
, followup mechanisms, and standardized interorganizational relationships among hospitals, home care agencies, nursing homes, hospices, and other organizations that are or should be involved. Formally integrated health care systems, as described earlier, attempt to provide even stronger mechanisms for coordination, including designated primary care providers and integrated patient information systems.
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From page 108... ...
The care team exists, in any case, to support the patient and family, not to intrude upon their efforts to deal with the personal, social, emotional, philosophical, or spiritual experience of dying. Home Hospice Teams A core element of palliative home care is the interdisciplinary care team (Mor, 1987; Hull et al., 1989; Ajemian, 1993; Buckingham, 1996~.
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From page 109... ...
The team may also support staff in institutions, such as hospitals and nursing homes. that can provide most or ..
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From page 111... ...
. Inpatient Palliative Care Teams Clearly identifiable inpatient palliative care teams have not been routine for nursing homes or hospitals.
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From page 112... ...
The care team may be the option best suited for the varied and complex needs of seriously ill, hospitalized patients, whereas designated personnel and care protocols may be reasonable for nursing homes that can call on outside experts for consultation about more difficult situations including those that might otherwise appear to call for hospitalization. In some cases, members of a designated hospital-based palliative care team may function less as regular caregivers than as consultants, particularly if the hospital does not have an inpatient palliative care unit (Abrahm et al., 1996~.
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From page 113... ...
They may provide consulting services to hospice care teams, nursing home staff, and others faced with particularly difficult clinical problems. Educational and research roles of palliative care specialists are discussed further in Chapter 8.
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From page 114... ...
of palliative care includes ~1 1 ·1 1 1 ~ clans, and . more attention to preventing medical problems, greater continuity of care, reduced levels of inappropriate treatment, better use of health care teams coordinated by primary care clini coverage of services not included in traditional health insurance.
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From page 115... ...
Again, these findings are consistent with other research, which suggests possible problems in the treatment of people with serious chronic illness who need further attention from managed care plans, policymakers, and researchers. In Minnesota, Miles and colleagues indicate that health plans ration the use of hospice care, visiting nurse care, respite care, and spiritual and psychological counseling for end-of-life care (Miles et al., 1995~.
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From page 116... ...
Thus, just as those in fee-for-service medicine may need education about palliative care and hospice programs, so may those in managed care. REVISITING THE CARE SYSTEM AT THE COMMUNITY AND NATIONAL LEVELS The concerns raised earlier in this chapter and the promise of initiatives such as those described in this report led the committee to consider characteristics of community care systems that would more effectively and reliably serve dying patients and their families.
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From page 118... ...
Personal values, financial circumstances, family structure, and other patient or family characteristics set limits on what is possible or, at least, what is more or less difficult to accomplish. Over these individual conditions, clinicians and health care organizations typically superimpose a template or protocol that guides but need not rigidly dictate care.
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From page 119... ...
Chapters 6 and 7 consider some of the economic and legal factors that may support or impede good outcomes. ADDENDUM Physicians' Orders for Life-Sustaining Treatment (Used with permission of the Center for Ethics in Health Care, Oregon Health Sciences University)
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From page 120... ...
Physician Name (type or print) Time and Date Signed OR ETHICS IN HEALTH CARE, Oregon Health Sciences University, 3181 SW Sam Jackson Park Rd.
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From page 121... ...
if) CENTER FOR ETHICS IN HEALTH CARE, Oregon Health Sciences University, 3181 SW Sam Jackson Park Rd.
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