Approaching Death Improving Care at the End of Life (1997) / Chapter Skim
Currently Skimming:
5 Accountability and Quality in End-Of-Life-Care
5 Accountability and Quality in End-Of-Life-Care
Pages 122-153
The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.
From page 122... ...
The unintentional result may be to leave no one participant clearly responsible for a patient's overall experience. Thus, at the individual, organizational, and community level, cultivating responsibility and establishing accountability for the quality of care for patients approaching death are especially important tasks.
|
From page 123... ...
This, in turn, limits efforts to establish and refine standards or benchmarks against which care processes and outcomes can be assessed and improved. CONCEPTS OF ACCOUNTABILITY AND QUALITY Accountability Under the banner of accountability, a variety of public and private policymakers, purchasers, health care organizations, researchers, and others have joined together to develop new methods to monitor and influence patient care in hospitals, managed care plans, and other settings.
|
From page 124... ...
For more than a century, however, state and federal governments in the United States have been developing regulatory mechanisms to supplement or, in some instances, replace professional accountability. A recent IOM report defined public accountability for those serving Medicare beneficiaries as involving not only beneficiaries but also "the larger public as interested parties and taxpayers" (IOM, 1996b, p.
|
From page 125... ...
The definition acknowledges the relevance of professional knowledge, which includes experience and judgment as well as the important but still limited results of biomedical and clinical research. Notably, the definition deliberately omits resource constraints on the grounds that judgments of what constitutes excellent, acceptable, or unacceptable quality should be independent of constraints on resources.
|
From page 126... ...
Typical of quality improvement strategies reflecting these principles are the guidelines recommended by the American Pain Society for the treatment of acute pain and cancer pain (APS, 1995~. The guidelines, which focus on inpatient care and address institutions rather than single individuals, are summarized in Box 5.1.
|
From page 127... ...
Untimely referral to hospice, which has already been cited as a problem, is a form of underuse as is inattention to patient and family needs for nonmedical support. Poor technical performance, for example, miscalculation of medication dosages for pain or other symptoms, has been little studied; for purposes of this discussion it is considered an aspect of undertreatment.
|
From page 128... ...
One of the few large studies to look at a range of diagnoses (nine altogether, including three cancer diagnoses) in seriously ill hospitalized patients found severe pain reported by about 40 percent of family members of conscious patients (Lynn, Teno, et al., 1997~.
|
From page 129... ...
Bruera likewise has found patients reporting multiple symptoms, with weakness, loss of appetite, and pain most common (Bruera, 1993~. The earlier cited study of hospitalized patients who were seriously ill with one of nine diagnoses reported moderate to high rates of symptoms for many patients.
|
From page 130... ...
130 APPROACHING DEATH TABLE 5.! Symptoms Reported in 1969 and 1987 for Cancer and Other Deaths in Two English Studies Cancer deaths ~ % Other deaths ~ % All deaths ~ % 1969 1987 1969 1987 1969 1987 Pain 87 84 58 67 ~66 72 Trouble with breathing 47 47 44 49 45 49 Vomiting, feeling sick 54 51 21 27 ~30 33 Sleeplessness 69 51 ~41 36 49 40~ Mental confusion 36 33 36 38 36 37 Depression 45 38 31 36 36 36 Loss of appetite 76 71 37 38 48 47 Constipation 42 47 23 32 ~28 36 Bedsores 24 28 13 14 16 18 Loss of bladder control 37 25 ~24 55 28 23~ Unpleasant smell 26 19 11 13 15 14 Number of deaths `=loo%yb 215 168 570 471 785 639 Difference between 1969 and 1987 significant at the 5% level.
|
From page 131... ...
Cleeland, 1989; Grossman et al., 1991; Au et al., 1994; APS, 1995~. In a study of nursing home patients, 60 percent of the patients with needs for pain management received effective pain care, whereas the rest had problems ranging from no medication to ineffective type or frequency of medication (Wagner et al., 1996~.
|
From page 132... ...
A number of comprehensive and specialized clinical guides are available to help physicians, nurses, and other health professionals provide effective palliative care for many patients.] These guides also suggest a number of barriers to effective palliative care beginning with inadequate clinician knowledge.
|
From page 134... ...
In a large stucly of seriously ill hospitalizeci patients, about 1 patient in 10 was reported to have haci care provicleci that was inconsistent with preferences (Lynn, Teno, et al., 1997) , anci doctors were often unaware of what patient preferences actually were (SUPPORT Principal Investigators, 1995~.
|
From page 135... ...
Given current cost containment pressures, it will, however, be important to monitor for signs of increasing underuse of such interventions. In addition, it would be useful to understand whether one factor in overtreatment is clinician uncertainty about or unfamiliarity with effective palliative care strategies, including methods of withdrawing mechanical ventilation and other life-sustaining technologies so as to cause minimum distress to patients and families (Brody et al., 1997~.
|
From page 136... ...
Structural Aspects of Quality of Care The link between specific health care structures and outcomes is a matter of continuing dispute based on modest and sometimes conflicting research (see, for example, IOM, 1986; Mor, 1987; Relman, 1988; IOM, 1990; Lansky, 1993; SUPPORT Principal Investigators, 1995; IOM,1996c)
|
From page 137... ...
This is another reason for the interest in continuous quality improvement strategies that focus on internal rather than external mechanisms of quality assessment and assurance.
|
From page 138... ...
As one committee member phrased it in discussing her critical care practice, "if the quality of care in my palliative care practice were judged by mortality rates, I would look pretty bad because 85 percent of my patients die." Similarly, nursing home administrators trying to reduce inappropriate hospitalizations of dying patients have particular reason to be concerned that mortality data be used carefully in judging their performance. Caution is particularly important when outcomes are linked to reimbursement for care.
|
From page 139... ...
In addition, patient and family perceptions of care are increasingly recognized as important in their own right. MEASUREMENT INSTRUMENTS AND ISSUES It is axiomatic in the continuous quality improvement literature that "if you don't measure it, you can't improve it." To that end, a number of instruments for measuring quality of care and patient status and well-being have been developed, and work to adapt these instruments or develop others helpful in improving care for seriously ill and dying patients is proceeding on many fronts.
|
From page 140... ...
Instruments Dozens, even hundreds, of instruments exist to measure health status or quality of life (McDowell and Newell, 1996~. For example, one recent review reported 159 different instruments used in the 75 articles analyzed (Gill and Feinstein, 1994~.
|
From page 141... ...
Various groups (IOM, 1990; Medical Outcomes Trust, 1995; Stewart, 1996; Lynn, 1997) have defined attributes of useful measures.
|
From page 142... ...
· Emotional status of family members · Economic status of family · Adequacy of information and decisionmaking process · Perceptions of care provided patient · Perceptions of care provided family including bereavement support Measurement Issues and Problems Developing measures of patient status or quality of care that meet these requirements is a significant challenge for any arena of health care (see, e.g., Ware et al., 1988; Fowler et al., 1994) , but measures appropriate to the special circumstances of dying patients and their caregivers present particular problems (Mor, 1987; Celia and Tuisky, 1990; Cohen and Mount, 1992; Byock, 1996; Ingham, 1996; Merriman, 1996; Puchalski, 1996; Roach, 1996; Stewart, 1996; Teno, 1996b; Wilkinson, 1996; Donaldson, 1997~.
|
From page 143... ...
Consistent with the discussion of undertreatment, pain measures have been more extensively developed and evaluated than measures for other symptoms common among people approaching death. The strategies employed in developing, testing, and refining pain assessment instruments have provided useful models and lessons for those working in other areas.
|
From page 144... ...
One result is that assessments are often made retrospectively after a patient's death and using recorded data or surrogates rather than during the dying process. The Role of the Patient or ~ Surrogate as ~ Source of Patient Information Seriously ill and dying patients may not be able to report for themselves because of the physical or mental impairments produced by their illness.
|
From page 145... ...
, the extent to which different surrogates provide different reports, the reasons for differences, and the bases for choosing a proxy. Such research is neither simple nor inexpensive but is a high priority for quality assessment and improvement for patients approaching death.
|
From page 146... ...
146 APPROACHING DEATH The Restive Emphasis on Ratings of Satisfaction versus Reports About Care Measures of satisfaction with care are widely used and sometimes relied on entirely or primarily as indicators of quality of care. Such measures have a variety of limitations, particularly those instruments that are developed informally without systematic validation (Ware, 1978; Ware and Hays, 1988; Ware et al., 1988; Ahorony and Strasser, 1993; Gerteis et al., 19931.
|
From page 147... ...
For people with advancing, eventually fatal medical problems, the relevance of particular functional indicators or capacities may change as their illness progresses. At an early stage of illness, for example, the ability to drive may seem paramount; later the ability to get out of bed may be a primary concern.
|
From page 148... ...
(Higginson, 1993~. Sensitivity to Change or Differences in Patient Status To be useful in guiding quality improvement, instruments should provide interpretable and meaningful information about changes in patient status that may occur as a function of disease or treatment.
|
From page 149... ...
GUIDELINES FOR CLINICAL PRACTICE Recent years have seen considerable interest in the use of clinical practice guidelines to improve the appropriateness, effectiveness, and cost-effectiveness of care (see, e.g., Brook et al., 1986; Chassin et al., 1986; Lohr et al., 1986; PPRC, 1988,1989; Roper et al., 1988; Audet et al., 1990; and IOM, 1990, 1992~.2 Practice guidelines have the potential to contribute to quality of care for dying patients in several ways as part of multifaceted quality improvement strategies. First, by describing specific processes of care identified as effective, guidelines may improve the technical provision of care.
|
From page 150... ...
Some guidelines for symptom management, for example, those for treating cancer pain, may be useful with patients approaching death, although they may not be sensitive to the shifting and balancing of goals of care that occurs as patients near death. Other guidelines focus on ethical and legal rather than clinical aspects of end-of-life care.
|
From page 151... ...
These approaches include · providing for clinician participation in the development of guidelines (to encourage "buy-in" ) ; · incorporating guidelines in continuous quality improvement initiatives that include feedback of statistical information on organizational and clinician performance; · integrating guidelines and outcomes measures into computer-based patient information and decision support systems; and · linking acceptance of guidelines and compliance to health plan contracting requirements or financial incentives.
|
From page 152... ...
. CONCLUSION This chapter has stressed the importance of cultivating responsibility and establishing accountability for the quality of care for patients approaching death.
|
From page 153... ...
A CCO UNTABILITY AND Q UALITY IN END- OF-LIFE CARE 153 7 will highlight the problem of anti-addiction drug policies that inappropriately target the medical use of opioids to control pain and other symptoms. In considering education and research, Chapters 8 and 9 reinforce the theme of inattention to the needs of dying patients, with the latter chapter also revisiting some methodological issues in assessing those needs.
|
Key Terms
This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More
information on Chapter Skim is available.