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Performance Measurement: Accelerating Improvement (2006)

Chapter: Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn

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Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
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Appendix J
Commissioned Paper

Palliative Care/End-of-Life Measures

Sydney Dy and Joanne Lynn

INTRODUCTION

Recent advances in medical care and expansion of services offer tremendous potential for reducing suffering and improving quality of life for persons with life-threatening illnesses. However, study after study has demonstrated that these advances have not been translated well into clinical practice and that serious quality deficiencies persist for the care of this population (Teno, 2001). Few palliative care performance measures are included in population-based assessments of quality such as the National Healthcare Quality Report, or even in quality reports focused upon settings with high proportions of palliative care patients, such as nursing homes. Measuring quality for palliative care entails many challenges, including defining the denominator, adjusting for risk, accounting for patient preferences, assessing surrogate respondents, adjusting for differences in length of life arising from treatment choices, and evaluating patient-centered outcomes (Rosenfeld and Wenger, 2000). While measurable processes of care should be tightly linked to desirable outcomes, high-quality evidence of that linkage is quite uncommon in end-of-life care, and elements that reflect patient-centered care can be very difficult to measure.

On the other hand, assessing quality in care for the last years of life also has many opportunities for growth, including recent systematic reviews (Higginson et al., 2003; Lorenz et al., 2004), a national consensus project on clinical guidelines (National Consensus Project, 2004), and a large body of literature addressing the important domains and the development of measurement instruments. Palliative and end-of-life care measures must be

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

prominent in any national set of quality measures, since such a high proportion of care occurs in patients with life-threatening illness and since deficiencies in quality may cause particular harm in patients with little time or reserve remaining to recover from adverse effects. A national measurement set must consider the unique priorities and challenges of palliative care patients, as many measures associated with improved outcomes in a healthy population may be inappropriate or even harmful in patients with serious illness and limited prognoses.

For the purposes of this paper, we will use the World Health Organization definition of palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (World Health Organization, 2002).

For our conceptual model, we will use the domains of the framework of the Toolkit of Instruments to Measure End of Life Care (Teno, 2000):

  • Pain and other symptoms

  • Emotional and cognitive symptoms

  • Functional status

  • Survival time and aggressiveness of care

  • Advance care planning

  • Continuity of care

  • Spirituality

  • Grief and bereavement

  • Patient-centered reports and rankings (aka satisfaction) with the quality of care

  • Caregiver well-being

  • Quality of life

For each domain, where appropriate, we have also organized measures into those applicable to assessment, management, and outcome. We have listed topics in this order in the text and Table J-1, and compared the results of our searches to these categories to determine where there are particular gaps in performance measurement for palliative care.

METHODS AND SOURCES

We limited our review to measurement sets particularly relevant to palliative care, as more general sets are under review in other parts of this project. We considered information from recent systematic reviews and consensus statements in palliative care, as well as previous reviews of quality indicators

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

for palliative care, relevant reports from the Institute of Medicine (Lunney et al., 2003; Teno et al., 2001), and other pertinent books and reports. We also reviewed articles and Web sites from recent RAND initiatives to define performance indicators. We performed Medline searches using the terms “quality indicator” and “performance measure” with the terms “palliative” and “end of life.” Finally, we reviewed Web sites for palliative care standards or indicator initiatives in other countries, including Canada, Australia, and the United Kingdom.

MEASURE SETS

Palliative Care

Leading measurement sets in palliative care are described below, and pertinent measures are included in Table J-1.

Dartmouth Atlas

Wennberg and colleagues (1999, 2004) have used Medicare administrative data to evaluate a number of potential performance measures and to compare them across geographic regions defined by political division or hospital referral region. For the end-of-life measures, they have tabulated the services that Medicare recipients used in the last 6 months of life, showing wide variation by region and provider. Their measures include the number of days spent in the hospital; number of days spent in the intensive care unit; percentage of patients seeing 10 or more physicians; percentage ever enrolled in hospice; percentage of deaths occurring in the hospital; and percentage of deaths occurring in association with an intensive care unit. We describe several of these measures in more detail in Table J-1. Although the variation in these measures is striking, it is unclear whether those variations correlate with the quality of the end-of-life experience. Fisher et al. (2003a,b) did find that higher levels of resource utilization in the last 6 months of life were not associated with improved mortality or satisfaction for Medicare patients with serious illnesses, measuring regional satisfaction with the Medicare Current Beneficiary Survey. Drawbacks of retrospective analyses of patients who have died are discussed in the section below on challenges of measurement in end-of-life care.

Brown Atlas of Dying

The Brown Atlas (Teno, 2004) has extended the work of the Dartmouth group by using several additional data sources to examine regional variation in end-of-life care. The Atlas includes site of death information for

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

TABLE J-1 Selected Potential Performance Measures for Palliative/End-of-Life Care

Domain

Category Name of Measure

Description

Pain

Assessment

 

Pain measurement

UHC

Chart review

Numerator: Patients who had any pain measurement within 48 hours of admission

Denominator: Palliative care population hospital admissions

Use of numeric pain scale

UHC, Brown-QIO, VHA-QIO

Chart review

Numerator: Patients who had a numeric pain scale used

Denominator: Palliative care or other population admissions with a pain score within 48 hours

Pain as 5th vital sign

VHA-QIO

Across all settings

Chart review

Numerator: Patients who had pain assessed when other vital signs taken

Denominator: All patients (unless lesser frequency indicated and documented in chart)

Appropriate pain assessment

Brown-QIO

Assessment of pain intensity, 4 other elements

Numerator: Patients with appropriate pain assessment

Denominator: All NH residents with pain

Treatment

 

Pain medication prescribed

Brown-QIO

Any pain medication

Numerator: Any pain medication prescribed

Denominator: All NH residents with pain

Nonpharmacological treatment

Brown-QIO

Any nonpharmacological treatment in plan of care

Numerator: Nonpharmacological treatment

Denominator: All NH residents with pain

Change in pain medication

Brown-QIO

Change in pain medication for uncontrolled pain

Numerator: Change in pain medication

Denominator: NH residents with daily pain and documented moderate-severe pain

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

Psychometric Testing (Validity/Reliability)

Prior Use

References

N

Benchmarking

Multiple settings

 

N

Benchmarking

Baier et al., 2004; Cleeland et al., 2003

N

Improvement

Cleeland et al., 2003

Y—e.g., Brief Pain Inventory

Improvement

Baier et al., 2004; Lorenz et al., 2004

N

Improvement

Baier et al., 2004

N

Improvement

Baier et al., 2004

N

Improvement

Baier et al., 2004

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

Domain

Category Name of Measure

Description

Adherence to guidelines

Du Pen

Adherence to “best practice” pain guidelines, defined as score of 2.5 on score of 0–3

Numerator: Adherence

Denominator: Community oncology patients with pain of 3 or greater on 10-point scale

Outcome

 

Rate of pain

VHA-IHI

% of patients with moderate-severe pain; various settings

Patient perspective

Numerator: % of patients with moderate or severe pain

Denominator: All patients in setting

Rate of pain in nursing homes

Brown Atlas

% of patients with moderate-severe pain; Collected from Minimum Data Set (MDS)

Numerator: % of patients with moderate or severe pain over 7-day lookback period

Denominator: All nursing home patients

Persistent pain in nursing homes

Brown Atlas

% of nursing home patients with persistent pain

Numerator: patients who still have moderate or excruciating pain on 2nd assessment 60–180 days after admission

Denominator: Nursing home patients with pain on 1st assessment. Subgroups: persons with documented terminal illness; persons cognitively intact and able to report on their pain; patients with cancer

Comfortable dying

NDS

% of patients whose pain was brought to a comfortable level within 48 hours of admission to hospice

Numerator: patients answering that pain was brought to a comfortable level within 48 hours

Denominator: patients uncomfortable due to pain on admission, able to self-report, and ≥18 years of age

Pain relieved/reduced

UHC

Hospital

Chart review

Numerator: Pain relieved/reduced to <3/10 within 48 hours of admission

Denominator: Palliative care population reporting pain on hospital admission

Satisfaction

Du Pen

Satisfaction with current pain treatment; patients who would choose to have similar treatment again

Numerator: Patients satisified with current pain treatment

Denominator: Patients treated for pain

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

Psychometric Testing (Validity/Reliability)

Prior Use

References

N

Improvement.

Adherence was greater in intervention group and associated with reduced pain scores

Du Pen et al., 1999

N

Improvement

Cleeland et al., 2003

MDS pain reporting has substantial validity issues. Currently undergoing further development as a CMS demonstration project

Reporting, Improvement

Teno et al., 2004; Baier et al., 2004

N

Benchmarking

Teno et al., 2002; Teno, 2004

N

Benchmarking

Connor et al., 2004

N

 

Y

Improvement. Rates higher in intervention group

Du Pen et al., 1999

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

Domain

Category Name of Measure

Description

Dyspnea

Assessment

 

Dyspnea assessment

UHC

Dyspnea assessment within 24 hours of admission

Hospital

Chart review

Numerator: Patients assessed for dyspnea within 24 hours of admission

Denominator: Palliative care population admissions

Outcome

 

Dyspnea relieved/reduced

UHC

Dyspnea relieved/reduced within 48 hours of admission

Hospital

Chart review

Numerator: Patients with dyspnea reduced/relieved to ≤3 within 48 hours of admission

Denominator: Patients with documented dyspnea

Constipation

Treatment

 

Bowel regimen

UHC

Bowel regimen within 24 hours of opioid administration

Hospital

Chart review

Numerator: Patients with bowel regimen ordered within 24 hours or bowel regimen contraindicated

Denominator: Palliative care population admissions started on opioids

Emotional and cognitive symptoms

Assessment

 

Depression and comorbid disease

ACOVE Depression

Screening for depression with new onset of serious comorbid conditions

Community

Numerator: Patient asked about or treated for depression or referred to mental health professional within 2 months of diagnosis of condition

Denominator: Vulnerable elders who present with new onset of serious comorbid conditions, including malignancy

Treatment

 

Recognizing depression

ACOVE Depression

Evaluation/treatment for depression if presents with depressive symptoms

Community

Numerator: Patient asked about or treated for depression or referred to mental health professional within 2 weeks of presentation

Denominator: Vulnerable elders who present with new onset of symptoms of potential depression

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

Psychometric Testing (Validity/Reliability)

Prior Use

References

N

 

N

N

Tested in managed care organizations as part of ACOVE measurement set

Benchmarking

Nakajima and Wenger, 2003

 

Nakajima and Wenger, 2003

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

Domain

Category Name of Measure

Description

Care planning

Process

 

Documentation of patient status

UHC

Documentation of all 4 aspects of patient status within 48 hours of admission: prognosis, functional status, psychosocial symptoms, symptom distress

Numerator: Patients with all 4 aspects documented within 48 hours

Denominator: Palliative care admissions

Patient/family meeting

UHC

Patient/family meeting within 1 week of admission. Defined as documented discussion of patient preferences/plans for discharge disposition

Hospital

Chart review

Numerator: Patients with patient/family meeting documented within 1 week of admission

Denominator: Palliative care admissions

Discharge planning

UHC

Plan for discharge disposition documented within 4 days of admission

Hospital

Chart review

Numerator: Patients with discharge disposition documented within 4 days of admission

Denominator: Palliative care population admissions

Use of discharge planner

UHC

Discharge planner/social services arranged services required for discharge

Hospital

Chart review

Numerator: Patients where discharge planner/social services arranged services required for discharge

Denominator: Palliative care population admissions

Advance directives and surrogates—outpatient

ACOVE EOL

Surrogate decision-maker should be documented in outpatient charts

Chart review

Community

Numerator: Outpatient chart includes: (1) Advance directive indicating surrogate decision maker, (2) documentation of discussion of who would be surrogate or search for surrogate, or (3) indication that there is no identified surrogate

Denominator: Vulnerable elders

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

Psychometric Testing (Validity/Reliability)

Prior Use

References

 

Prognosis was least frequently documented, followed by functional status and psychosocial symptoms

 

N

Benchmarking

 

N

Benchmarking

 

Benchmarking

The ACOVE indicators have been tested in managed care settings; further research is addressing quality improvement

Research

Wenger et al., 2003

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

Domain

Category Name of Measure

Description

Advance directives and surrogates – hospital

ACOVE EOL

Advance directives in hospital chart for patients admitted with dementia, coma, or altered mental status

Chart review

Hospital

Numerator: Same as above, except documentation in hospital medical record within 48 hours of admission

Denominator: Vulnerable elders admitted to hospital with dementia, coma, or altered mental status, who survive 48 hours

Documentation of care preferences—dementia

ACOVE EOL

Documentation of preferences for patients hospitalized with severe dementia

Chart review

Hospital

Numerator: Within 48 hours of admission, medical record documents that patient’s prior preferences for care either have been considered or could not be elicited or are unknown

Denominator: Vulnerable elders with severe dementia admitted to the hospital and surviving 48 hours

Site of death

% of patients who died where death occurred in (1) home; (2) hospital; or (3) nursing home. Adjusted for age and gender. Subgroups include patients with cancer and the elderly (Dartmouth Atlas)

Numerator/Denominator: All persons 15 years of age or older who died of any non-traumatic or external cause in a state.a Patients listed as “other” are included in denominator (this would include inpatient hospice)

Outcome

 

Self-determined life closure

NDS

Rate of unwanted hospitalizations and resuscitations

(NHPCO)

Hospice

Numerator: Patients not hospitalized or not discharged concurrent with a hospital admission

Denominator: Discharged patients whose most recently recorded preference was to avoid hospitalization (may be via legal representative/advance directive). Excludes patients without recorded preference. CPR measure is equivalent

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

Psychometric Testing (Validity/Reliability)

Prior Use

References

 

Research

Wenger et al., 2003

Research

Wenger et al., 2003

Y

Benchmarking

Improvement

Teno 2004

N

Benchmarking

Connor et al., 2003

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

Domain

Category Name of Measure

Description

Satisfaction

After-death bereaved family interview

3 versions: hospice, hospital, and nursing home. Up to 8 domains and 133 items. Telephone survey with family member 3–6 months after death

Family perspective

Numerators: Family members who reported that: (1) overall assessment of quality was excellent; (2) sufficient desired physical comfort and emotional support provided to patient; (3) shared decision making supported; (4) patient treated with respect; (5) needs of family attended to; (6) care coordinated.

Denominator: Deaths

NHPCO FEHC NDS

Family Evaluation of Hospice Care: Core survey, 43 items; 17 optional items. Sent 2 months after death. Bereavement satisfaction survey sent 13 months after death

Family perspective

3 numerators: Family members who reported—(1) Safe dying (caregiver confidence in providing safe care) (2) Effective grieving (emotional support to loved ones before and after death) (3) Family evaluation of hospice care (willingness to recommend hospice care)

Denominator: Hospice deaths

Continuity

Identify source of care

ACOVE Continuity

All vulnerable elders should be able to identify a provider or clinic that they would call in need of medical care

Numerator: Patient who can identify provider/clinic to call if needs health care

Denominator: Vulnerable elders

aDeath certificates that listed death as a result of any of the following were excluded: pregnancy and childbirth-related causes, motor vehicle accidents, all other accidents, suicide, assault homicide, and all other external causes. Foreign residents and those with an unknown site of death were also excluded. Death certificates that listed a site of death as other than a nursing home, hospital, or home were included in the denominator for all calculations.

For UHC data, palliative care population admissions were defined as: Adult patients with 2 previous admissions (any DRG) within 12 months of the target admission; and target admission with >4 days length of stay for DRGS for heart failure (127), cancer DRG pool (82, 203, 172, 274, 346, 10), HIV (489), or respiratory DRG pool (483, 475).

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

Psychometric Testing (Validity/Reliability)

Prior Use

References

Y (Teno et al., 2001)

Home care/hospice, hospital, nursing home; National norms are available for comparisons in all 3 settings (Teno et al., 2004)

Teno et al., 2004

N

Ceiling effects

Benchmarking, although no evidence of substantial variation among hospices or across time

Connor et al., 2004

ACOVE testing in managed care plans

Benchmarking

Improvement

Wenger and Young, 2003

For ACOVE, “vulnerable elders” are defined as persons 65 years of age and older who are at increased risk for death or functional decline. A scoring tool, the Vulnerable Elders Survey (VES-13), is available to identify vulnerable elders in the community.

All measures are from the patient perspective and in the public domain unless otherwise noted.

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

decedents older than 15 years of age, as well as data on a number of measures in nursing homes, including 12 measures for pain, advance directive use, do not resuscitate orders, and feeding tubes. Several of these are summarized in Table J-1.

After-Death Bereaved Family Interview

This is a set of measures developed for an interview with a family member after a patient’s death (Teno et al., 2001; Teno, 2004). The measures arose from a review of professional guidelines and a series of focus groups of bereaved family members. Versions are available for different settings of care, and a national study has demonstrated feasibility and differences by the type of care provided. Growing evidence also provides a baseline for benchmarking. Unlike most other satisfaction measures, ceiling effects do not limit its utility. The instrument measures quality across various domains, reflecting the priorities of the patients’ family members. The response rate was acceptable (58 percent), the instruments are in the public domain, and various researchers are using them in a variety of settings. The developers require users to contribute to a database intended to aid organizations in benchmarking their data. Measures are summarized in Table J-1 under “satisfaction” and include: physical comfort and emotional support; shared decisionmaking; treating dying person with respect; attending to the emotional needs of the family; and coordinating care.

National Hospice and Palliative Care Organization National Hospice Data Set (NDS)

This industry wide, voluntary data collection includes five outcome categories: comfortable dying (comfort 48 hours after admission); self-determined life closure (unwanted hospitalizations and resuscitations); safe dying (caregiver confidence in providing safe care); effective grieving (emotional support); and family evaluation of hospice care (willingness to recommend hospice care). The last three categories are obtained from the NHPCO Family Satisfaction Survey (Connor et al., 2004). The NHPCO Web site includes a comprehensive summary of the numerators, denominators, and measures that were considered and pilot-tested in the development of these measures, as well as the protocols for the current measures (Ryndes et al., 2000). The final measures are in Table J-1.

Assessing Care of Vulnerable Elders (ACOVE) Quality of Care Assessment System

The ACOVE project developed quality indicators relevant to the comprehensive care of vulnerable elders, including outpatient, hospital, and

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

nursing home care. They also developed measurement tools to document performance on each of the indicators. Wenger et al. reported applying the indicators to measure quality in two managed care organizations, and ongoing research involves testing interventions to determine whether they improve performance. One of the domains in ACOVE is End-of-Life Care, which includes 14 quality indicators. The indicators overall have excellent reliability from repeated chart abstraction (97 percent agreement) (Wenger et al., 2003). Nine of the end-of-life indicators relate to advance care planning; the other four are management of ventilator withdrawal, treatment of pain, treatment of dyspnea, and attention to spiritual issues. These indicators are included in Table J-1.

Solomon et al. (2003) reported on an evaluation of all 203 ACOVE quality indicators by a committee of geriatric experts for appropriateness for use in patients with advanced dementia or poor prognosis. They concluded that 120 of the indicators were appropriate for use in patients with advanced dementia, and 130 were appropriate for patients with a prognosis of 6 months or less. We have included several of the ACOVE indicators that apply to the elderly generally in Table J-1 under “depression” and “continuity.” Minor but important modification of many of the ACOVE measures would improve their appropriateness for the population nearing death. For example, the indicator for continuity states that patients should know whom to call if they have a health care need. Due to the high needs and acuity in palliative care, a higher standard may be needed, such as 24-hour availability of a provider who can coordinate their care and respond to urgent situations without relying only upon emergency hospitalization. A recent review of the ACOVE indicators also found that experts in Britain approved 86 percent for use there (Steel et al., 2004).

University Health System Consortium—Palliative Care Benchmarking 2004

The purpose of this project was to identify institutions with better performance in order to provide benchmarks. This project involved 35 university hospitals and reviewed 1,597 charts. The palliative care performance measures, bundled together, were associated with reduced length of stay. The performance measures identified five better performing sites. The benchmarks are undergoing revisions; current versions are listed in Table J-1.

RAND Quality Assessment Tools: Quality of Care for Oncologic Conditions and HIV

Two chapters have indicators particularly relevant to the end of life: Chapter 7, Lung Cancer, and Chapter 11, Cancer Pain and Palliation. The lung cancer chapter includes indicators for the palliative treatment of brain

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

metastases in both small-cell and non-small-cell lung cancer, and for treatment of bone pain in small-cell lung cancer. For pain management, three indicators are included: (1) patients with metastatic cancer to bone should have the presence or absence of pain noted at least every 6 months; (2) cancer patients whose pain is uncontrolled should be offered a change in pain management within 24 hours of the pain complaint; and (3) patients with painful bony metastases, who are noted to be unresponsive to or intolerant of narcotic analgesia, should be offered one of the following within one week of the notation of pain: radiation therapy to the sites of pain, or radioactive strontium therapy (Asch et al., 2000). These measures have been used as part of the QA tools to evaluate quality in nationwide studies and in the Veterans Health Administration health system (Asch et al., 2004). As these measures are specific to particular issues in cancer, they have not been included in Table J-1.

QUALITY IMPROVEMENT

A number of palliative care measures have also been used in large quality improvement projects. The Veterans Health Administration—Institute for Healthcare Improvement (VHA-IHI) initiative used the IHI rapid change “Breakthrough Series Model” (Cleeland et al., 2003). Over 9 months, 73 teams improved pain management in several settings, including ambulatory care, inpatient rehabilitation, oncology, and long-term care. The assessment measure was screening documentation (use as the fifth vital sign), the treatment measures included documented care plans for patients with pain scores >3 and distribution of pain educational materials, and the outcome measure was a reduction in the percentage of patients with moderate-severe pain.

In Rhode Island, a collaborative between the state Quality Improvement Organization and Brown University was able to achieve improvements in a number of process and outcome measures in pain management in 21 nursing homes (Baier et al., 2004), although the project was limited by many structural factors, such as nursing turnover. The IHI and the RAND/Washington Home for Palliative Care Studies have also conducted end-of-life collaboratives with promising results (Lynn et al., 2000). Two collaboratives that are ongoing are the National Medicaring Quality Improvement Collaborative (www.medicaring.org) and the United Hospital Fund’s Palliative Care Quality Improvement Initative. The measures developed in quality improvement work generally have face validity and the test of usefulness inherent in that work, but they have not often had formal testing of reliability and validity.

We also describe measures in Table J-1 used in a randomized, clinical trial of implementing pain guidelines (Du Pen et al., 1999) in cancer patients

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

in clinical oncology practices that resulted in a statistically significant reduction in usual pain intensity, as well as improved satisfaction with pain.

Special Populations

Several ongoing projects are addressing the development of measures for pediatrics, intensive care, and cancer.

Pediatrics

A recent review of quality measures for children for the Institute of Medicine (Beal et al., 2004) found that 19 health care quality measure sets with 396 quality measures for children did not include any measures particularly relevant for the end of life. The Initiative for Pediatric Palliative Care (Dokken et al., 2001) has developed a set of quality domains, goals, and indicators for children living with life-threatening conditions, as well as an institutional assessment tool that is being field-tested, but measures are not yet ready for use as quality indicators.

Intensive Care

The Robert Wood Johnson Foundation Critical Care End-of-Life Peer Workgroup (Clarke et al., 2003) has developed a set of 7 proposed end-of-life quality domains and 53 quality indicators, as well as a set of clinician and organizational interventions and behaviors that might address these indicators in the intensive care unit. Performance measures that may be relevant for validation and adoption by organizations are under development.

Cancer

In addition to the QA tools, Earle et al. (2003) conducted a recent project to explore potential end-of-life cancer quality indicators that could be monitored using administrative data. They used a literature review to identify indicators that would be feasible with current Medicare data and then identified those that would be acceptable, using focus groups of patients and family members and an expert panel. The final list included 7 indicators, several of which are also part of the Dartmouth Atlas. Others include a short interval between last chemotherapy dose and death; frequent emergency room visits; and a short interval between starting a new chemotherapy regimen and death. Additional indicators that some care provider organizations may monitor include clinical trial participation, use of multidisciplinary care, and physician continuity. Indicators not currently amenable to administrative data included com-

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

munication, shared decision-making, advance directives, and pain and symptom management.

The National Quality Forum (NQF) also has started a cancer initiative relative to palliative care, described below under “ongoing initiatives.”

International Efforts

Many other countries are working on developing and implementing standards, indicators, and/or performance measures concerning palliative care, including Canada, Australia, and the United Kingdom, where palliative care is a regular part of care and evaluation.

Gold Standards Framework—United Kingdom

More than 1000 (Murray, 2004) primary care practices in the United Kingdom have adopted the Gold Standards Framework, a quality monitoring and improvement process that addresses care system performance in supporting people with serious and eventually fatal conditions. Current performance measures in the palliative care population include assessment of pain; assessment of the preferred place of death and congruence between the actual and preferred place of death; and number of crises or hospitalizations. Evaluation of validity, reliability, and effectiveness of these measures is ongoing. Time series data from the practices show responsiveness of these measures to improved care processes.

Ongoing Initiatives

Several current initiatives will provide further insight into measures that may be applicable to the end of life. The NQF, in partnership with other organizations, has launched several relevant initiatives on measuring quality of care for cancer: Symptom Management/End-of-Life, funded by CDC, National Care Institute (NCI), Agency for Healthcare Research and Quality (AHRQ), and CMS; Palliative Care, funded by the Robert Wood Johnson Foundation; and Long-Term Care. As part of the Symptom Management/End-of-Life Project, the Southern California Evidence-Based Practice Center will perform a systematic review of the literature on evidence for measures for depression, pain, dyspnea, and advance care planning. The NQF will also issue a broad appeal for measures of symptom management/end-of-life care. NQF will be weighing many of the measures identified in these ways for potential endorsement.

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×
Other Measurement Sets

Many other measurement sets, including Nursing Home Compare (Centers for Medicare and Medicaid Services, 2004), Home Health Compare, and measures for specific conditions, such as depression, contain measures that are relevant to palliative care and the end of life.

MEASUREMENT RECOMMENDATIONS

Areas with Measures That Are Ready for Implementation

Our criteria for choosing measures included evidence for reliability, validity, association with outcomes, ability to be improved in research studies or quality improvement, feasibility, and applicability across health care settings and across possible definitions of palliative care. We propose measures in the two domains that others have also often proposed as being nearly ready for implementation: care planning and pain management. While most indicators of quality have started with assessment of the patient’s situation, actual improvement requires assessment, appropriate initial response, and reassessment and repeated response as needed.

High-quality care planning involves many elements, including ensuring that patients have an accurate understanding of the meaning of their illness and of potential interventions; ensuring that care plans are consistently applied through transitions between providers and settings; and communicating about potential changes in care plans with changes in patients’ clinical situations. Depending on the situation, care planning may involve addressing various issues, including designation of a surrogate and future care preferences and addressing preferences for resuscitation and other aggressive treatments. As recent systematic reviews (Lorenz et al., 2004; Wenger and Rosenfeld, 2001) have described in detail, little high-quality evidence links higher rates of care planning to improved outcomes. Observational and prospective time-series studies provide some evidence of the linkage, qualitative studies support the claim that care planning is important to patients and families, and studies have shown that interventions can increase the rate of care planning. In many situations, care plans may need to be more detailed in order to be effective in shaping care, as in addressing whether a terminally ill nursing home patient should be hospitalized. Care plans often need to address particularly important and complicated situations, such as withdrawal of mechanical ventilation, rather than just stating broad approaches. Finally, care planning should not just address what should be avoided, but positive elements as well, such as designating and planning for the preferred place of death.

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

The measurement of care planning has mostly relied upon simple rates: completed plans, divided by eligible patients. Few studies have attempted to measure the appropriateness, completeness, utility, or actual use of the care plans, and those few have also relied upon straightforward, unadjusted rates. Controlled trials of interventions to improve care planning have sometimes shown small increases in the rates of advance directives, but the gains have been small and have not generally included testing of the effectiveness of the care plan in shaping the care. Some evidence indicates that care planning makes the task of the family surrogate somewhat easier. Observational reports from quality improvement projects demonstrate remarkable improvements in the rate of documented care planning and show care delivery being in accord with the plan (Hammes and Rooney, 1998; Lynn et al., 2000).

Measuring care planning requires specifying the content and process required to count as an advance care plan and specifying the denominator population carefully. The stability of the denominator population is especially problematic if it relates to a particular setting of care and part of the care planning creates biases in the future composition of the population of patients who use that setting. For example, if care planning in the hospital results in much lower use of the hospital among nursing home patients nearing death, the rate of care planning might stay stable among those continuing to use the hospital although the intervention was actually quite successful in removing patients from that environment.

The advance care planning indicators of quality would seem to be that patients facing serious complications and death have had the opportunity to plan in advance of emergency or incompetence for the likely scenarios, including designating a surrogate decision maker, forgoing undesired interventions, ensuring desired interventions (including setting of care), and having these plans reliably available and implemented in various settings and circumstances. Measurement of these aspects of care can be rolled up into a composite measure that sums over a number of steps, as the Gold Standards Framework in Britain does with its “dying in the preferred place of choice” measure. Most often, measurement of advance care planning simply reflects adding up advance directive documents and dividing by the number of eligible persons in a particular setting. The Veterans Administration initiative to increase advance care planning also specified that advance care plans had to include designation of a surrogate decision maker, a decision about resuscitation, and a decision about aggressive symptom management, in order to count as a completed advance care plan. The report from La Crosse, Wisconsin tallied regional experience with aggressive education and encouragement and not only tallied completed documents but also whether they were available at the time of death and whether they were followed (Hammes and Rooney, 1998). The options for measures thus include:

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×
  1. Rate of documented plans of care, perhaps requiring designation of a surrogate, decisions about resuscitation, and whatever specific issues are salient in the population (resuscitation in hospitalized persons, tube feeding in dementia, etc.);

  2. Rate at which documented plans of care are available when needed;

  3. Rate at which available plans of care are implemented;

  4. Rate of a composite measure of patients getting what they have designated as preferred, such as the preferred place of death.

Improving pain management also requires numerous steps. Again, a recent systematic review found little high-quality evidence that pain can be improved on a population level, although quality improvement collaboratives (Baier et al., 2004; Cleeland et al., 2003; Lynn et al., 2000) have shown promising results. As in advance care planning, qualitative studies have demonstrated that recognition and treatment of pain are important priorities for patients receiving palliative care. High-quality pain assessment needs to include a number of elements: providers need to be knowledgeable about and comfortable with the treatment of pain; systems of care must support quality pain management; and reassessment and adjustment of medications are often necessary to maintain pain control. Pain is a multifactorial experience, and assessment usually has to specify whether to address such differing concepts as worst pain, average pain, pain before or after treatment, meaning of pain in terms of activity or emotional impact, and character of the pain. Detailed pain improvement projects have measured a number of other process elements, including the use of opioids (correct dosing, rotation, conversion, escalation). Some measures have addressed outcomes, such as the NHPCO measure of “comfortable dying”; however, this measure is best adapted for internal quality improvement, due to validity issues related to risk adjustment and patient preference. The pain measures most nearly ready for implementation, with evidence of reliability and validity, are:

1. Assessment.

Numerator: Patients with a high-quality pain assessment with a validated instrument, including intensity, location, what makes it better, what makes it worse, and effects of medications.

Denominator: A defined population at risk, stable over the period of inquiry.

Settings: Admission to a nursing home, hospital, home care organization, hospice, or new outpatient provider. Every shift in a hospital, every day in hospice, every week in home care.

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

Further development should include evaluating which elements of assessment are most associated with outcomes; consensus on defining the denominator; and evaluating evidence of applicability across settings. In addition, since few information systems can currently provide this data, the number of medical records to be reviewed will need to be defined.

2. Response.

Numerator: Patients who have a change in their pain management program, or the number with a change that is within defined quality parameters.

Denominator: Palliative care patients, as described above under assessment, or patients with certain diagnoses or severity of illness associated with particular diagnoses, with uncontrolled pain (e.g., patients with pain score of 5 or greater on a 10-point scale).

Settings: as above.

Further development, in addition to those mentioned for assessment, should include refining the definition of uncontrolled pain and the definition of a change in pain management. Ideally, future research and development of data assessment tools and systems would allow longitudinal measurement of patients’ experience, especially with new pain syndromes or worsening of chronic pain. Leaders in palliative care claim that rates of moderate and severe physical pain should diminish to a very small fraction of at-risk patients in systems offering good care; however, demonstrations of that claim in any sizable populations are remarkably rare or absent.

Areas with Measures That Show Promise, but Require Further Development

A number of measures deserve mention for potential inclusion in the future, including the After-Death Bereaved Family Interview and many other elements of pain management and care planning, including the preferred place of death. The After-Death Interview has been carefully developed and rigorously tested in a national population, shows differences by the type of care provided, is not limited by ceiling effects, and includes measures in a number of different domains. Although the Interview addresses surrogates’ perceptions of care, which may have variable correlation with patients’ perceptions, surrogates’ perspectives are valued independently in palliative care and their experience may affect the future bereavement and health. The Interview would require further development for use as a measure, including adaptation to a paper survey, short-

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

ening, summarizing into a small number of key dimensions, demonstration of broad applicability (region, type of illness, approach to care services, ethnic background), and demonstration that scores improve when processes of care improve (Teno et al., 2001; Teno, 2004).

Many other potential measures of pain management and care planning are listed in Table J-1 and have some evidence to support their use.

Areas with Measures That Need to Be Developed

Many domains relevant to palliative care lack measures with sufficient supporting evidence for confidence even about whether further development of current approaches would yield useful measures. These include the treatment and prevention of most symptoms other than pain in patients who are very sick and nearing death. Measurement tools are available to address other physical and emotional symptoms, but insufficient work has yet been done to translate these into performance measures for this population. Measures for some symptoms have been developed for other populations, such as nausea in cancer treatment or depression in the elderly, but these do not have sufficient supporting evidence and have not been evaluated in the palliative care population. Many other areas, such as spirituality, life closure, and caregiver burden and bereavement, have measurement tools available, but generally research has not tested whether these vary with better care, whether they have ceiling effects, whether routine measurement is feasible, or most of the other attributes of useful measures of care system quality.

Caregiving and caregiver concerns are areas with particular needs for further development. Caregivers are vital to many elements of the end-of-life experience, including psychosocial distress, life closure, and site of death. The quality and quantity of caregiving can affect many other measurement domains, including symptom management and advance care planning. In addition, the impact of caregiving on the caregivers can have consequences for their physical and emotional health. We identified no performance measures specific to caregiving. Although the After-Death Bereaved Family Interview is an interview of caregivers, it is oriented towards the caregiver’s perception of the patient’s experience rather than towards caregiver issues. In our systematic review of the end-of-life literature (Lorenz et al., 2004), we found that, although many measurement instruments have been developed to examine caregivers’ experiences, interventions for caregivers have had little consistent effect on these outcomes. Outcome measures also differed widely across studies; although caregiver burden was frequently studied, other outcomes included stress, depression, anxiety, satisfaction, caregiver morbidity and mortality, unmet needs, and institutionalization.

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

The domain of grief and bereavement also has many available measurement instruments (Lorenz et al., 2004), but little is available to guide performance measurement. Bereavement may have significant impact on significant others’ health, including depression and suicidality, particularly for parents of children and widowed elders. However, recent systematic reviews have found that, despite a large number of interventions in the literature, there is no clear evidence that interventions are effective in improving the experience of a sizable population, except for the pharmacological treatment of depression (Forte et al., 2004). Much of the reason for the lack of demonstrated efficacy is the low quality and variability in measurement and interventions in the literature (Forte et al., 2004).

As documented in our recent evidence report (Lorenz et al., 2004), many domains do not even have well-developed measurement tools for use in palliative care; in particular, continuity of care, dignity, and autonomy require further work on every stage—concepts, factors influencing the domain, reliability and validity, generalizability, and evidence that care system improvement affects the measures. Finally, few measurement tools have records of use across diverse populations, including pediatrics, and further research in performance measures will need to address differences among fatal diagnoses, ethnic groups, and age groups.

Key Gaps in the Evidence Base

Our recent systematic review of the end-of-life literature (Lorenz et al., 2004) summarized the major gaps in the palliative care evidence base, and many of these deficiencies affect the development of measures. The lack of research on the implications of alternative definitions of the end-of-life population hinders convergence on a routine denominator in palliative care research or improvement activities. The lack of palliative care measures (such as symptom levels) in most research on specific diseases also limits our ability to define populations with unmet palliative care needs. Although research has developed many measurement tools for different domains in palliative care, these measures have rarely been tested in different settings or populations, which limits their applicability for use in performance measurement. Performance measures in symptom management await studies on symptom prevalence in noncancer populations; on associations between processes and outcomes; and on how interventions can improve symptoms across populations. Some sustained research has developed better pain management, but research for other symptoms is mostly nonexistent. In advance care planning, the key issue is to understand how various interventions actually have impacts on achieving patients’ goals, an outcome that has mostly evaded assessment. Finally, little research is available to inform performance measures in continuity, spirituality, or caregiver issues.

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×
Gaps in Understanding How Population Measures Need to Be Altered for the Palliative Care/End-of-Life Population

Existing measures may apply to an elderly population or one defined by a particular diagnosis, but these need testing and adaptation to be sure that they will apply well to the palliative care population. For example, in ACOVE, a panel of geriatric experts found that only 130/203 of the indicators intended for vulnerable elders were still appropriate for patients with a prognosis of 6 months of less, and many of the general measures could be more useful if specifically adapted to the palliative care population (Solomon et al., 2003). Walter et al. (2004) found that not accounting for the seriousness of underlying illness, patient preferences, or clinician judgment can seriously compromise the performance of a quality measure. In populations with high proportions of patients who are ill or do not want aggressive care, high rates of screening may reflect badgering and imprudent decisions rather than quality, and low rates may be perfectly appropriate.

Measure sets addressing populations with high proportions of palliative care patients need to include measures relevant to palliative care issues. For example, Mitchell et al. (2004) found that the 6-month mortality among newly admitted nursing home residents with advanced dementia was over 30 percent. However, measure sets in these settings often do not include appropriate elements of palliative care. For example, elements such as documentation of proxy decision makers, decisions to forgo resuscitation or hospitalization, or prognosis and symptoms might greatly improve the appropriateness of MDS for the high proportion of nursing home patients who need palliative care (American Academy of Hospice and Palliative Medicine, 2004).

CHALLENGES TO APPLYING THESE MEASURES FOR THE PURPOSES OF QUALITY IMPROVEMENT, PAY FOR PERFORMANCE, AND PUBLIC REPORTING

Challenges of Outcomes in Palliative Care

Two major challenges to using outcome measures in palliative and end-of-life care are validity and adjustment for patient characteristics and preferences. Although many potential measures are objective (such as site of death) or have undergone careful development and extensive psychometric testing (such as the After-Death Bereaved Family Interview), the validity of these measures as indicators of the overall quality of palliative care has not been well established.

Site of death is a good example of concerns about validity. Increasing the numbers of patients who die at home appears, at first glance, to be a

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

laudable objective. Site-of-death information can generally be reliably obtained from death certificate or Medicare data. However, measuring whether dying at home is an important outcome may depend on how the question is asked. One national survey found that more than 60 percent of the elderly and more than 80 percent of seriously ill patients would prefer to die at home. However, in another national survey of seriously ill patients, in a list of nine attributes of what was important at the end of life, dying at home was ranked last (Steinhauser et al., 2000). Only 35 percent of patients and 30 percent of bereaved family members agreed that dying at home was important (Steinhauser et al., 2000). Whether a patient dies at home may depend on patient and caregiver preferences, and the patient’s perceptions of caregiver burden. For example, Fried et al. (1999) found that the primary concern of patients who preferred to be at home was the desire to be with their family members, while those who chose other settings were more concerned about their families’ ability to care for them and burden on their families. One would expect that the element that would be more important than the location at the time of death would be the patient’s preference as to where to live when near to death, but that question has not yet been asked in a research context.

Dying at home may also be strongly dependent on whether supportive resources are available in that locality. Pritchard et al. (1998) found that in-hospital death increased with greater hospital bed availability and use and decreased with greater nursing home and hospice availability and use. Hospital bed availability was the most powerful predictor, far outstripping patient preference. However, Pritchard et al. also pointed out that the arrangements for care in a locality enmeshed a broad array of social patterns and expectations, including the behavior of the police and the neighbors, making it difficult to handle any one patient’s situation in a novel or customized way. Temkin-Greener and Mukamel (2002) found that the percentage of deaths that occurred at home among patients enrolled in the program of all-inclusive care for the elderly (PACE) varied from 25 to 76 percent, depending on the PACE site where patients received care. In a study in 8 counties, Tang and McCorkle (2003) found that patients who died in the county with the most resources available were most likely to die in their preferred location. Tang (2003) also found that many of these same factors, including family caregivers’ ability to provide care at home, might also predict the use of hospice care. These complex issues defy straightforward adjustment, since we have no tools that account for the effects of such factors as the availability of family caregivers or community resources.

Broad use of a measure such as site of death, hospital length of stay, hospice referral, or length of hospice use could have adverse consequences. Working to decrease the number of persons who die within a hospital setting without increasing resource availability at home or in the nursing home

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

may lead to discharges with uncontrolled symptoms, untrained and over-burdened caregivers, and increased readmissions, or misuse of hospice. In addition, neither palliative care interventions nor those specifically targeted towards improving the rate of home death have shown significant impact on increasing the rate of home death (Higginson et al., 2003). In one trial of hospital at home for the terminally ill, an intent-to-treat analysis showed no effects; but those who actually received the intervention had much higher rates of home death. Hospice in the United States also delivers very high rates of dying at home (50 percent at a private home), compared to the national rate of only 23 percent, but estimating the effect of selection bias would be difficult and has not been done.

Denominator Issues/Population Definition

A recent systematic review of the end-of-life literature (Lorenz et al., 2004) details the numerous challenges in defining the palliative care population. Most of the practical definition of “end of life” in the United States has relied upon the concept underlying the Medicare hospice benefit, which requires that eligible people would have a discernible phase of dying that reliably lasted less than 6 months. However, other concepts did arise in the literature review: e.g., “readiness” for death, “active dying,” and serious and eventually fatal illness. While many articles address the plausibility of prognosticating the timing of death, the summation of them is that no approach reliably distinguishes those who will die soon from those who will manage to survive for much longer. Most prognoses are ambiguous at a time that turns out to be within a week or two of dying. The inability to create categories by prognostic models affects all of the major causes of death except perhaps the most relentless of cancers. Yet, the other strategies for labeling a group as being at “the end of life” have almost no research base. Quality improvement work has tended to use either an arbitrary category that combines service utilization with diagnosis (e.g., all cancer patients seen in our clinic, or all heart failure patients admitted to the hospital) or the “surprise question,” which requires asking a clinician who knows the patient whether the patient is sick enough that it would be no surprise for the patient to die within 6 months or a year. The “surprise question” captures a much larger population that those thought appropriate for hospice referral, since it focuses upon a high risk of dying, rather than near certainty, and since it does not require also attending to the question of whether the patient will still be under life-prolonging treatment.

The measures selected in Table J-1 use a number of different denominator definitions, all of which suffer from lack of validity testing. These include “vulnerable elderly,” or those at high risk of death or reduced functional status; “poor prognosis,” or prognosis of 6 months or less; patients

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

considered to be “terminally ill” (MDS); patients currently receiving hospice care; and patients where a provider states that they would not be surprised if the patient died within the next year. Some measures also use denominators identifying all nontraumatic deaths retrospectively. This denominator is particularly problematic for use in performance measures, as many of these patients might not have been identified prospectively as being part of a palliative care population (Bach et al., 2004).

Settings

We identified two major issues related to the use of measures in different settings. First, due to the fractured nature of our health care system, measures have often been developed specifically for certain settings, often for nonpalliative care measure sets, and therefore cannot be compared across settings. For example, OASIS (home care), MDS (nursing homes), and NDS (hospice) all have very different pain performance measure methodology. Since important portions of palliative care occur in hospitals, providers’ offices, nursing homes, home care, and hospice, and patients will often make multiple transitions among settings, standardization of key measures would be critical to assessing performance and improving care across the continuum. If the hospital or its professionals are not performing well on the treatment of pain, for example, patients admitted to hospice will have a higher frequency and severity of pain on admission, which might affect the hospice’s performance measures adversely. Improving the overall care of these patients would require improvements by nonhospice providers. In working with a population that routinely changes settings often, and for whom improvements might well change the way that different settings are used, measures that are tied to particular settings are likely to be misleading.

Use of Surrogates/Missing Data

Issues related to the collection of data in palliative care have also been summarized in the recent systematic review (Lorenz et al., 2004) and need further research. Patients who are seriously ill or near the end of life are often unable to report on symptoms or other patient-centered elements of care. Measurement either resorts to proxy measures (such as after-death surveys of families), which often have only moderate congruence with patient reports, or carry high proportions of missing data and are therefore subject to bias. Further research will have to determine how and when to combine patient and proxy reporting and how to account for missing data through methods such as adjustment or repeat assessments.

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
×

The Effect of Altering Survival Time

Survival time has a troublesome interaction with most of the other elements that one might measure to estimate quality of care. With many outcome indicators of quality care, the patient is more at risk of adverse experience with longer survival, both from longer exposure and from more fragile health. Thus, for example, a care pattern that secured two months longer survival with emphysema would seem to have higher rates of dyspnea, more caregiver burnout, higher costs, and generally more adverse indicators. Since policymakers and researchers do not pay attention to this possibility and do not have metrics that would allow adjustment, this acts as an unmeasured confounder. This potential effect is one that is particularly difficult to discuss, since putting it into words risks allegations of having interest in foreshortening life (or, for that matter, of prolonging dying and inflicting suffering while increasing the bills).

CONCLUSION

While the costs of care at the end of life probably use about one-third of Americans’ lifetime health care, and while disapproval of the quality and reliability of that care is widespread, the indicators of quality, the measures to estimate quality, and the benchmarks and practical approaches to ensuring quality show longstanding inattention. Within a year, the NQF could probably field measures of physical pain and advance care planning that would be good enough for comparing health care delivery systems as to the quality of care. With more deliberate development over just a few years, life closure, caregiver experience, and some other symptoms (depression, dyspnea, chemotherapy-associated nausea and vomiting, for example) could be in the field. Some composite measures like knowing and delivering on the preferred place of death show promise precisely because high rates require a number of generally beneficial steps to have been taken. Having practical approaches to identifying the “end of life” population more usefully will require focused attention; finding clinical and administrative triggers that can concurrently identify the patients who face serious illness through to death is a task that will be essential for improvement activities. A recent State of the Science conference documented research priorities for end of life care (http://consensus.nih.gov/ta/024/EndofLifeStatementDRAFThtml.htm).

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Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
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Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
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Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
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Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
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LIST OF ABBREVIATIONS


ACOVE

Assessing Care of Vulnerable Elders


CMS

Center for Medicare and Medicaid Services


EOL

end of life


ICU

intensive care unit

IHI

Institute for Healthcare Improvement


LOS

length of stay


MDS

Minimum Data Set (CMS)


NDS

National Discharge Sample (NHPCO)

NHPCO

National Hospital and Palliative Care Organization


UHC

University Health Consortium


VHA

Veterans Health Administration

Suggested Citation:"Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Institute of Medicine. 2006. Performance Measurement: Accelerating Improvement. Washington, DC: The National Academies Press. doi: 10.17226/11517.
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Performance Measurement is the first in a new series of an ongoing effort by the Institute of Medicine (IOM) to improve health care quality. Performance Measurement offers a comprehensive review of available measures and introduces a new framework to examine these measures against the six aims of the health care system: health care should be safe, effective, patient-centered, timely, efficient, and equitable. This new book also addresses the gaps in performance measurement and introduces the need for measures that are longitudinal, comprehensive, population-based, and patient-centered. This book is directed toward all concerned with improving the quality and performance of the nation’s health care system in its multiple dimensions and in both the public and private sectors.

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