Improving Palliative Care for Cancer (2001) / Chapter Skim
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3 Quality of Care and Quality Indicators for End-of-Life Cancer Care: Hope for the Best, Yet Prepare for the Worst
3 Quality of Care and Quality Indicators for End-of-Life Cancer Care: Hope for the Best, Yet Prepare for the Worst
Pages 96-131
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From page 96... ...
in its report Ensuring Quality Cancer Care (IOM, 1999) outlined a vision for the development of quality indicators to cover the spectrum of cancer care, including the dying process.
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From page 97... ...
At this early stage in development, there is a strong evidence base to support the development of quality indicators for pain management for the purpose of accountability. However, demonstration programs will be needed before pain management indicators can be implemented nationally, and more basic research is needed to develop indicators for managing other common symptoms (e.g., emotional distress and depression, fatigue, gastrointestinal symptoms)
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From page 98... ...
Two national data collection systems warrant consideration for the development of quality indicators: Medicare claims files and the Minimum Data Set (MDS)
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From page 99... ...
The National Cancer Policy Board, in Ensuring Quality Cancer Care (IOM, 1999) , noted the wide disparity between the "ideal" cancer care system and the reality that confronts people with cancer today.
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The NCPB has outlined the characteristics of an ideal system for measuring quality of care for cancer patients. In order to meet these goals, we will need appropriate measurement tools for research to develop the scientific evidence base, for quality improvement, and for public accountability (Table 3-1)
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From page 101... ...
. tions of the use of measurement tools, more stringent psychometric properties than are now employed must be put into measures that will be used for public accountability.
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2. What are the proposed definitions and conceptual models for quality of care of dying persons and their family?
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Home Hospital Nursing Home ~~ 1 986 1 989 Year of death 1 993 FIGURE 3-2 Site of cancer deaths, 1986-1997 (selected years)
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From page 104... ...
Only 19.7 percent of those who died from cancer in 1993 used hospice care. The functional trajectory measured as the number of ADL impairments in the last five months of life was associated with dying at home and with hospice involvement (Teno et al., 2001 )
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From page 105... ...
, the NCPB recommended ensuring timely referral of dying cancer patients to palliative and hospice care. Currently, the only data that can shed light on the timing of these referrals are from Medicare claims files, and these do not tell the story of whether referrals are "timely." However, they do demonstrate a dramatic reduction in the median length of hospice stay during the late 1990s and substantial geographic variation in length of stay.
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From page 106... ...
If carried out, it should include data collection to document a surrogate perspective on quality of care with a focus on issues that proxies are known to report accurately access to care, decisionmaking, advance care planning, coordination of care, and the financial impact on dying persons and families. Additional research should be conducted to improve the quality of followback reporting (e.g., to examine the best timing of interviews within the constraints of current reporting of death data)
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From page 107... ...
Because of the high prevalence of pain and because it can be alleviated with proper treatment, pain and its control should be an outcome measure used to judge the quality of end-of-life care for purposes of public accountability. Future Directions: The NCI, AHRQ, Department of Defense, and Department of Veterans Affairs could consider research and demonstration efforts to implement accountability measures for pain management.
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From page 108... ...
More than 90 percent of people with advanced cancer who are close to death have more than three distressing symptoms (Donnelly and Walsh, 1995~. Weakness afflicts between 51 percent and 88 percent of dying cancer patients, and at least one-quarter have one or more gastrointestinal symptom, including nausea, vomiting, and anorexia (Conill et al., 1997; Donnelly and Walsh, 1995; Hockley et al., 1988; Portenoy et al., 1994b; Turner et al., 1996; Vainio and Auvinen, 1996~.
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From page 109... ...
It will be difficult to document progress unless the necessary tools are developed. Future Directions: The scientific evidence base of, and current measurement tools for physical symptoms other than pain need further refinement prior to their use for public accountability.
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From page 110... ...
for diagnosing emotional distress among terminally ill cancer patients, two broad categories of assessment tools have been employed: self-report questionnaires and clinical interview diagnostic criteria. Researchers have used many self-report questionnaires measuring psychological well-being to assess emotional distress among cancer patients; however, only the Memorial Symptom Assessment Scale (Portenoy, et al., 1994b)
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From page 111... ...
calls for physicians to speak truthfully to cancer patients and families about prognosis, treatment options, and advance care planning (ASCO, 1998~. Despite widespread endorsement by professional guidelines, the Patient Self-Determination Act, and court rulings, there is still significant concern about whether patients' preferences are honored along with persistent claims that they are "trumped" by physicians.
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From page 112... ...
Cancer, unlike other leading causes of death, does have a relatively predictable disease trajectory that would allow for such dialogues to be developed and implemented. The lack of impact of the SUPPORT intervention (which provided physicians with information on patient preferences and prognoses but did not result in increased physician understanding of patient preferences, timing of DNR orders, reduction in days spent in undesirable outcome states, and reduction in resource utilization)
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Measurement tools that examine whether treatment decisions reflect informed patient preferences should be developed and validated. Such measures, if validated, could be incorporated into HCFA's ongoing effort to monitor the quality of managed care.
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From page 114... ...
. tunctlonlng Family well-being and perceptions Safe and comfortable dying Self-determined life closure Effective grieving Receiving adequate pain and symptom management Avoiding .
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From page 115... ...
For the seriously ill patient, institutions and care providers striving to achieve patient-focused, fami] -y-centeredL medical- care shout
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From page 116... ...
Future Directions: NCI and AHRQ could fund research to elucidate the interrelations of structure, process, and outcomes of care, in order to develop valid quality indicators. Surveys and chart abstraction tools have been designed to examine the quality of care of the dying for purposes of quality improvement and research.
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From page 117... ...
Responding to the need to develop tools to measure quality of life and quality of care at the end of life, the Brown University Center for Gerontology and Health Care Research and the IOM have convened a series of multidisciplinary conferences (Teno et al., 1999~. The result has been a series of recommendations for a "Toolkit of Instruments to Measure End of Life Care," with the initial target of developing tools that measure the perspectives of the dying person and the family for the purposes of research and quality improvement.
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From page 118... ...
TABLE 3-4 Care Status of Quality Indicator Development for End-of-Life Domain Proposed Indicators Readiness Pain Frequency and severity of pain from Minimum Data Set Patient and family perspective on pain management Satisfaction Measures of patient satisfaction, based on patient or surrogate responses New instruments include some questions relevant to people dying from cancer Shared Questions from Toolkit of Decisionmaking Instruments to Measure End-ofLife Care Coordination and Continuity of Care Proposed indicators require validation, but can be measured for all hospitalized cancer patients Major limitation: captures only health care provider perspective Instruments available (e.g., from American Pain Society or Toolkit of Instruments to Measure Endof-Life Care) New instruments have undergone reliability and validity testing.
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? FIGURE 3-5 Proposed scheme for measuring patient and family voice about quality of medical care.
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From page 120... ...
The evidence that health care institutions can improve satisfaction with hospice interventions is very strong (Greer and Mor, 1986; Hanson et al., 1997; Kane et al., 1984~. There is strong normative evidence based on both guidelines and court rulings that attest to the importance of shared decisionmaking (i.e., decisions regarding treatment choices that are based on informed patient preferences if the patient desires a role in decisionmaking)
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From page 121... ...
Specifically, the experience of nursing homes is increasingly revealing the importance of unintencleci consequences of applying quality indicators to populations in which they are not applicable. For example, two of the proposed nursing home indicators focus on clehyciration and weight loss.
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From page 122... ...
. However, Medicare claims data alone cannot be used as appropriate quality indicators because they lack information on disease severity and patient preferences.
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From page 123... ...
In Ensuring Quality Cancer Care (IOM, 1999) , the National Cancer Policy Board recommended development of a core set of quality measures for the continuum of cancer care, including care at the end of life.
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From page 124... ...
Patient preferences and satisfaction are important at every stage of treatment, but they take on added significance at the end of life. The measurement tools now available are based on review of medical records or administrative data.
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From page 125... ...
The constraints imposed by feasibility and cost must guide the development of quality indicators. A key consideration is to minimize the institutional burdens and maximize the value in achieving the goals of quality care for dying persons and their families.
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From page 126... ...
Neuropsychiatric syndromes and psychological symptoms in patients with advanced cancer. J Pain Symptom Manage 1995; 10(2)
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The relationship of pain and symptom management to patient requests for physician-assisted suicide. J Pain Symptom Manage 1991;6(5)
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From page 128... ...
Reliability estimates for the Minimum Data Set for nursing home resident assessment and care screening (MDS)
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From page 129... ...
Dyspnea: pathophysiology and assessment. J Pain Symptom Manage 1997;13(4)
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For every numerator, you need a denominator: a simple statement but key to measuring the quality of care of the "dying." J Pain Symptom Manage 1999;17(2)
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From page 131... ...
Building an institutional commitment to pain management in long-term care facilities. J Pain Symptom Manage 2000;20(1)
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