Approaching Death Improving Care at the End of Life (1997) / Chapter Skim
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9 Directions for Research to Improve Care at the End of Life
9 Directions for Research to Improve Care at the End of Life
Pages 235-258
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From page 235... ...
From the cellular to the social level, much remains to be learned about how people die and how reliably excellent and compassionate care can be achieved. Important, unanswered questions exist about the fundamental physiological mechanisms of the symptoms that cause so much suffering among dying patients and about the kinds of interventions that will relieve these symptoms.
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From page 236... ...
Unlike other chapters, this chapter uses certain technical terms that may not be understandable to some readers; it does so in an effort to underscore research gaps and opportunities. The following sections consider a symptom-based strategy for biomedical research, directions for behavioral and health services research, ethical issues in research involving dying patients, some important methods issues in end-of-life research, and barriers to research and consequent opportunities for leadership from the nation's research establishment.
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From page 237... ...
The committee also concluded that although palliative care research has received little emphasis in the past 20 years, modest investments appear to have paid substantial dividends in the prevention and relief of symptoms experienced by cancer patients. Advances resulting from cancer researchsome of which benefit those who die of cancer as well as long-term survivors have occurred in several areas (see, e.g., Holland and Rowland, 1990; Breitbart and Holland, 1993; Doyle et al., 1993; AHCPR, 1994a; Gavrin and Chapman, 1995; Portenoy and Kanner, 1996~.
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From page 238... ...
Other research on the pain-inhibiting neurotransmitters has also led to new pain treatments (Max et al., 1992; Wall and Meizack, 1994; Yaksh and Malmberg,1994~. In another previously neglected clinical area, pain related to nerve injury, NIH-supported development of animal models and clinical trial methods in pain have recently stimulated many companies to synthesize candidate compounds and initiate clinical trials.
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From page 239... ...
Current laboratory studies on animal models and initial clinical trials suggest that new types of nonopioid analgesics can successfully influence these pain-stimulating systems. · strengthening developmental pharmacology intended to maximize benefits and minimize harms by taking into account patient differences in age, race, gender, weight, metabolic status, and other relevant factors.
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From page 240... ...
For example, in cancer patients, tumor products may play an important causal role with cytokines acting in an indirect supportive mode (Todorov et al., 1996; Tisdale, 1997~. As research findings on the relative influence of cytokines and chemical products induced by disease processes emerge, interference with this process should allow patients to have an improved quality of life as they die and may prolong life for some.
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From page 241... ...
The promise is that such agents may improve appetite and add weight in cachectic patients. The cytokine cascade, which contributes to the cachexia-anorexia syndrome, is becoming better understood, leading researchers to investigate inhibitors of cytokines or of agents that interfere with cytokine receptor expression and function (Plata-Salaman, 1995; Erickson and Hubbard, 1996; Laviano, 1996; Meydani, 1996~.
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From page 242... ...
Some pilot studies suggest that inhaleci morphine relieves the clyspnea of metastatic disease in the lung (Davis, 1994~. Wouici it show similar effects for congestive heart failure?
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From page 243... ...
The same holds true for delirium, which is common in advanced cancer patients and is important as a source of distress to families and health care personnel as well as patients (see, e.g., Lipowski, 1987; Fainsinger and Young, 1991; Bruera et al., 1992; Smith et al., 1995~. Similarly, scientific study of the biology and importance of cognitive and emotional symptoms is limited for patients with severe congestive heart failure, chronic obstructive pulmonary disease, and diabetes (see, e.g., Littlefield et al., 1990; Leedom et al., 1991; Cowley and Skene, 1994; Hawthorne and Hixon, 1994~.
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From page 244... ...
the patient and the family as a unit for purposes of assessing and managing symptoms, especially psychological symptoms (Breitbart et al., 1995~. SOCIAL, BEHAVIORAL, AND HEALTH SERVICES RESEARCH A stronger foundation of scientific and clinical knowledge about symptom mechanisms and effective therapies for the dying patient is important but insufficient to guide improvements in care at the end of life.
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From page 245... ...
Demonstration projects testing the effects on end-of-life care of alternative practitioner and provider payment mechanisms are virtually unknown. The next section identifies some methods issues that particularly complicate social, behavioral, and health services research.
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From page 246... ...
How an analyst is to account for variation related to the starting point (e.g., when a diagnosis is made, which may be early or late in the course of some diseases) or the effect of treatment decisions (e.g., when the patient receives therapies that both relieve symptoms and prolong life)
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From page 247... ...
Directions for Investigation As a starting point for establishing priorities and formulating a research agenda, the committee suggests a number of important areas for investigation. These investigations would draw on the expertise of epidemiologists, psychologists, economists, sociologists, anthropologists, health services researchers, and others.
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From page 248... ...
Given the special sorrows and stresses created by lifethreatening illness in children, the developmental aspects of illness and , ~ patient care involving neonates, infants, children, and adolescents need attention. Delivery, Financing, and Improvement of Health and Other Services As in much health services research, a useful descriptive step is mapping the nature and extent of variation in end-of-life care across clinicians and care settings.
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From page 249... ...
With cost pressures encouraging health care managers to reduce staffing levels and reassign responsibilities from more highly to less highly trained personnel (e.g., from RNs to LPNs or aides) , researchers need to investigate the impact of shifts in caregiving personnel on very sick and dying patients.
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From page 250... ...
One critical question is whether some financing arrangements pose particular threats to patient well-being, trust, and access to care. In this regard, it would be useful to learn about the patterns of enrollment, disenroliment, and continued enrollment by seriously ill patients in different types of managed care and in traditional health care plans.
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From page 251... ...
This research has laid out a range of questions for further investigation including: legal and other problems facing members of nontraditional families when their loved ones are not competent to make decisions; links between desire for assisted suicide and difficulties experienced or expected in receiving appropriate palliative care; and patient and family willingness or desire to rely more on clinicians to make certain important decisions about end-of-life care. Puzzled by patients reporting both high levels of pain and moderate or high levels of satisfaction with care, pain researchers have identified the determinants of patient and family satisfaction with pain treatment as an important research issue (APS, 1995~.
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From page 252... ...
Restricting patients suffering from advanced illness from clinical trials may deprive them of improved treatments for symptoms. In addition, to deprive palliative care patients of the opportunity to make their own decisions about participation deprives them of the special meaning of doing something to benefit future generations.
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From page 253... ...
Health professionals engaged in research are acting as double agents in that their research may help the research subject but also create benefits for society at large, advance basic knowledge, enhance careers, and improve the competitive position of sponsors. However, the current medical milieu commonly places health professionals in patient care settings in the role of double agents with responsibilities not only to patients, but to the patient's family, and to their own colleagues, departments, institutions, medical faculties, and, most problematic of all, the state or private health agencies.
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From page 254... ...
254 APPROACHING DEATH research on the experience of dying patients and on interventions to improve, prevent, or relieve symptoms and improve patients' quality of life while dying. In the committee's view, underlying many of these obstacles is the shared view of many researchers, educators, and practitioners that dying is a failure, that end-of-life care is unrewarding, and that scientific research in the area is uninteresting.
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From page 255... ...
By devoting at least a portion of their resources to promoting symptom-focused and other research to reduce suffering for those with advanced progressive illness, these advocacy groups could play an important role in creating public demand for improved care. It is also critical for those in leadership roles in research, clinical practice, education, and public policy to advocate for dying people who cannot advocate for themselves or those who will follow them.
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From page 256... ...
One promising clevelopment has been the work by patient groups, clinicians, health services researchers, anci others to encourage biomeclical researchers anci public anci private research sponsors to inclucle quality-oflife measures in clinical trials (Johnson anci Temple, 1985; Moinpour et al., 1989; Nayfielci et al., 1991; Varricchio et al., 1996~. Quality-of-life measures, however, often emphasize physical activities anci return to work with less attention to "issues that are clocumenteci to be relevant to terminally ill persons such as hope, loneliness, depression, anger anci anxiety about what is happening to the patient anci to family anci friends" (McMillan anci Mahon, 1994, p.
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From page 257... ...
This information would provide a clearer picture of patients' experience during the months before they died of conditions such as congestive heart failure, chronic obstructive pulmonary disease, and end-stage renal disease. Such protocols could be added to all clinical trials of potentially fatal illnesses, much as the National Cancer Institute added quality-of-life measures to its cooperative protocols some years ago.
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From page 258... ...
Other longer-term objectives would be to encourage interdisciplinary research and to develop career tracks for researchers interested in these topics and to attract researchers to areas not previously identified as being "interesting." The committee recognized that these kinds of initiatives are difficult to create and sustain but believed that policymakers and research leaders can devise creative ways to support focused biomedical research that will ultimately help people have a better quality of life while dying. CONCLUSION Progress in a clinical field is dependent on its research base.
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