JOURNAL OF PALLIATIVE MEDICINEVolume 3, Number 2, 2000©Education Development Center, Inc.

Institutional Accountability in End-of-Life Care:Organizational Leadership, Measurement, and

Consumer Demand

MILDRED Z. SOLOMON, Ed.D.

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IN THE UNITED STATES , recent efforts in the na-tional movement to improve end-of-life care

have primarily been driven by individual pallia-tive care experts and their professional specialtysocieties. These efforts include, for example, a re-cent statement of principles adopted by a largenumber of specialty societies,1 identification ofclinical competencies that all physicians2,3 andnurses4 should be able to demonstrate, calls forreform in medical education5 and in medical text-books,6 and revision of licensing and professionalcertification.

These first steps have been essential, founda-tional ones. However, efforts targeted exclusivelyto the skills of individual clinicians cannot do thejob alone.7 The next wave of reform efforts mustfocus on institutional accountability and willneed to rely upon organizational leadership and,hopefully, consumer pressure. In the process,measurement will play a key role.

In its landmark report, Approaching Death, theInstitute of Medicine acknowledged the need forinstitutional accountability when it recommendedthat healthcare institutions apply methods of con-tinuous quality improvement to the care of thedying.2 Various other groups have also called onhealth-care institutions to hold themselves ac-countable for the quality of end-of-life care theyprovide patients and families.8–12 In all these in-stances, measuring outcomes of care is seen ascentral to institutional accountability.

Outcome measurement is also centrally relatedto consumers and in at least two distinct ways.First, quality data is most effective when it isshared publicly, so that consumers and pur-

chasers of health care can choose rationally on thebasis of quality. Second, outcome measures oughtto be designed on the basis of patient and familyneeds, as they understand them.

In this issue of the Innovations section of thisjournal, we spotlight two outcome measurementtools developed by Irene Higginson at St. Christo-pher’s Hospice in London.13 Both the SupportTeam Assessment Schedule (STAS) and her morerecent Palliative Care Outcome Scale (POS) are“audit” tools—data collection instruments thatallow palliative care services to audit how wellthey are performing on a range of issues consid-ered crucial to optimal end-of-life care. Both toolshave been designed principally for use with end-stage cancer patients and their families.14,15

The STAS has been used by 120 palliative careresearchers in a variety of different health caresettings, ranging from hospitals to home-basedhospices, residential hospices, day care settings,and nursing homes. Seventy-five percent of theseapplications have occurred in the United King-dom, but 25% are ongoing in a wide range ofcountries, including Canada, Australia, Poland,Spain, Singapore, Belgium, France, Ireland, Swe-den, Holland, and the United States. Followingthe interview with Dr. Higginson, we presentcomments from Dr. Franco Toscani, who de-scribes his experience using the STAS on his pal-liative care service in Cremona, Italy.16

Dr. Toscani’s remarks are particularly perti-nent in that the Italian government has just ear-marked 450 billion lira, or roughly $238 milliondollars, to the establishment of hospices. Morefunds are expected next year for the establish-

Center for Applied Ethics and Professional Practice, Education Development Center, Inc., Newton, Massachusetts

Editorial

ment of hospital-based palliative care services.According to Toscani, outcome measurement,such as he is gathering through the STAS, is es-sential not just for ensuring that the care systemis delivering high quality care, but also for influ-encing funding priorities. Such data can demon-strate that earmarked money has been well spentand can make the case for additional funds tomeet unmet needs.

Despite these hopes for outcome measure data,it is a field essentially in its infancy, with manyconceptual and methodological questions still tobe worked out. For example, it is not surprisingthat the STAS and POS were developed for end-stage cancer patients, as cancer has been the ma-jor disease model for palliative care. However,outcome measurement is likely to be very differ-ent for patients who cannot report their own painand discomfort, such as comatose patients in in-tensive care units, or persons with dementia liv-ing in nursing homes. We now must conceptual-ize outcome measures for other kinds of patientpopulations.

There are other methodological challenges aswell. As Higginson notes in her interview, theitems in the STAS and POS both derived from apriori assessments by the professional staff—inother words, they reflect what the experts thinkgood care should accomplish. In the UnitedStates, the Foundation for Accountability(FACCT) has developed an approach that man-aged care plans can use to undertake outcomemeasurement.17 FACCT explicitly drew upondata from a variety of consumer-based focusgroups and consumer research activities. They in-cluded these consumer perspectives to ensurethat their proposed measures would reflect con-sumer perceptions as well as expert opinion. Yet,this strategy too is fraught with methodologicalminefields. Given the research documenting dis-parities between family and patient views onmany fundamental questions in end-of-life care,18

to what extent and in what ways should outcomemeasurement rely upon proxy reports?

In short, there is a great deal of scientific workyet to be done on outcome measurement. Doesthat mean that healthcare institutions should waitto act? No, there is much that can and should bedone right now. End-of-life champions withinhospitals, healthcare plans, nursing homes, andintegrated health systems can:1. Establish a continuous quality improvement

(CQI) committee willing to take responsibility for im-

proving end-of-life care and measuring outcomes.Nearly all health-care institutions have person-nel and resources dedicated to CQI. Too often,however, these resources are applied only to ad-ministrative aspects of hospital management(getting meals to patients’ rooms while the foodis still hot; shortening wait times) and onlyrarely applied to clinical aspects of caring for dy-ing patients. Ideally, a multidisciplinary teamcomposed of people with the right mix of skillscould take on this charge: staff with CQI exper-tise, medical and nursing leadership, socialworkers, pastoral counselors, members of theethics committee, people with management in-formation skills, patient and family representa-tives, and experts from the local academic andresearch community.2. Use data to hold a mirror up to practice. One of

the key functions of outcome measurement is toserve as a catalyst for institutional change. Col-lecting data about one’s own patients and one’sown practice is one of the most effective strate-gies for encouraging changes in practice, partic-ularly if specific individuals know they are accountable for results. Although outcome mea-sures are often considered of greatest importance,process measures are also important, particularlyas they can help to explain outcomes and can inthemselves trigger behavior changes. Survey re-sults of clinical staff’s knowledge and attitudescan also be highly motivating when reported backto groups of practitioners.*3. Review existing outcome measurement tools and

experiment with new ones. As Franco Toscani statesin his interview, one of the benefits of using theSTAS was that it had to be adapted for his pal-liative care service and its patients. It was theprocess of revision that helped his staff clarifytheir own goals and arrive at revised measuresthat worked better in their context. There aremany places to find tools.19 Collecting them and

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*Approximately 50 health-care institutions involved inthe PainLink project and more than 100 institutions in-volved in Decisions Near the End of Life have used surveytools to identify staff knowledge and attitudes about keyissues in pain management and end-of-life care. Institu-tions have used these tools and the data they provide tomotivate system changes in practice. For informationabout PainLink, see http://www.edc. org/PainLink. For a de-scription of the Decisions Near the End of Life InstitutionalProfile tool, contact: Stacy Piszcz, Decisions National Co-ordinating Center, Education Development Center, Inc.,55 Chapel St., Newton, MA, 02458.

considering their use in one’s own setting is anexcellent early task for a CQI committee.4. Begin collecting data on a small scale. CQI, or

audits as Higginson describes them, are not thesame as evaluation research. The goal is not toevaluate whether something is effective; it is tomonitor that something already proven effective(like opioids for pain management) is in fact be-ing delivered as intended. Thus, one need not beconstrained by the need for large sample sizes. Itis better to develop a small, feasible plan with re-peated measurement than to wait for the rightmoment to launch a massive data collection effort.5. Consider alternatives to formal outcome mea-

surement. There are many other kinds of data col-lection activities that can build institutional ac-countability. One managed care organizationredesigned its benefit structure, ensuring com-prehensive end-of-life care benefits equivalent tothe Medicare Hospice Benefit for their commer-cial enrollees, after conducting a small, qualita-tive interview study with family members whohad experienced the death of a loved one in theirsystem.20 Focus groups can be an equally validsource of data, particularly if the organizationalleadership has committed to the process and iffindings are reported to people in a position toact on them. Right now, nearly all managed careorganizations and many hospitals conduct pa-tient satisfaction surveys. Hospitals tend to sam-ple discharged patients and those who have vis-ited the emergency room. Managed care surveysare often triggered by an ambulatory care visit,or are part of an annual member survey. Neitherof these kinds of data collection activities seek outinformation from family members whose rela-tives have died, thereby effectively excludinghighly pertinent data about the end-of-life period.Though administrative changes in sampling pro-cedures would have to be developed, membersurveys and other ongoing data collection activ-ities that are a routine part of quality assurancecould be an important source of data for build-ing institutional accountability.*

But why should health care institutions takethese kinds of steps? Both Drs. Toscani and Hig-

ginson are operating within national health sys-tems, where planners can redirect resources tomeet perceived needs. In such systems, as Toscaninotes, there is a basic incentive to supply outcomedata to funders: it can make or break one’s re-quest for funding. Of course, it is not clear thatEuropean palliative care movements are, in fact,using outcome data to discern specific program-matic needs and then request funding to matchthose needs. But the opportunity to do so existsin systems with central planning and allocationof resources.

Where, however, will the incentive for ac-countability in end-of-life care come in the U.S.healthcare system? Purchasers are one obviouspoint of leverage. For the majority of patients whodie each year (i.e., those over age 65), this meansthe Health Care Financing Administration(HCFA). HCFA has launched a quality improve-ment program, whereby healthcare plans offer-ing capitated risk contracts to Medicare enrolleesmust initiate two performance improvement pro-jects during the first contract year.21 So far, end-of-life improvement projects have not been an op-tion for plans to work on, but there is no reasonthat they could not become a focus in futureyears.

For terminally ill patients under the age of 65,employers who contract with managed care or-ganizations can bring pressure to bear on healthplans to produce outcome data on the quality ofend-of-life care the plans are providing to theirterminally ill members. However, there are farfewer deaths among younger, commercially in-sured managed care members, so employers maynot have strong incentives to exert this kind ofpressure. Nevertheless, given the toll that dyingtakes on family caregivers, many of whom are inthe workforce, employers would in fact stand tobenefit if health plans were to offer more com-prehensive benefits, including bereavement sup-port and respite care.

The Joint Commission for the Accreditation ofHealth Care Organizations has taken importantsteps by including standards for key aspects ofend-of-life care and for pain management. Un-fortunately, the National Committee for QualityAssurance has not yet introduced end-of-lifemeasures into the HEDIS system. Such measureswould undoubtedly put end-of-life issues onmanaged care’s radar screen.

Ideally, one should also see a groundswell ofconsumer demand for better end-of-life care. It is

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*I am grateful to Maria Schiff, Health Policy Manager,Massachusetts Division of Health Care Finance & Policy,for suggesting the inclusion of families of deceased pa-tients in managed care member surveys.

clear that the public is worried about the issue,as support for assisted suicide demonstrates. Ifpublic education efforts intensify, perhaps thepublic’s concerns can be redirected to demandbetter end-of-life care. If so, consumer demandcould become a powerful force for improvementsin the care delivery system. Indeed, most suc-cessful change efforts (from the routine integra-tion of Pap smears into annual exams to funda-mental changes in birthing practices) have comeabout through consumer pressure. In the future,consumer demand may become the single mostimportant force driving accountability into thesystem.

Even if and when consumer demand grows,there is no getting around the need for profes-sional champions within our healthcare institu-tions. We need leaders willing to build account-ability and measurement into the system, evenwhen there are no external carrots or sticks. Forthe time being anyway, it looks like that willmean doing it, just because it is the right thing todo.

REFERENCES

1. Cassel CK, Foley KM: Principles for Care of Patients atthe End of Life: An Emerging Consensus among the Spe-cialties of Medicine. New York: Milbank MemorialFund, 1999.

2. IOM (Institute of Medicine) Committee on Care at theEnd of Life. In: Field MJ, Cassel CK (eds): Approach-ing Death: Improving Care at the End of Life. Washing-ton, D.C., National Academy Press, 1997, p. 211.

3. See American Board of Internal Medicine. Educa-tional Resource Document: Caring for the Dying: Iden-tification and Promotion of Physician Competency, 1996,and the American Medical Association’s Educationfor Physicians on End-of-Life Care project(http://www.ama-assn.org/EPEC).

4. American Association of Colleges of Nursing: Edu-cational Standards and Special Projects AACN Web-site, http://www.aacn.nche.edu/deathfin.htm

5. Billings J, Block SD: Palliative care in undergraduatemedical education: Status report and future direc-tions. JAMA 1997;278:733– 738.

6. Rabow MW, Hardie GE, Fair JM, McPhee SJ: End-of-life care content in 50 textbooks from multiple spe-cialties. JAMA 2000;283:771– 778.

7. Solomon MZ, Jennings B, Guilfoy V, Jackson R, O’Donnell L, Wolf S, Nolan K, Koch-Weser D, Don-nelley S: Toward an expanded vision of clinical ethicseducation: From the individual to the institution.Kennedy Institute of Ethics Journal 1991:83:225– 245.

8. Solomon MZ, Romer AL, Sellers D, Jennings B, MilesS and The National Task Force on End-of-Life Carein Managed Care: Meeting the Challenge: Twelve Rec-ommendations for Improving End-of-Life Care in ManagedCare. Newton, MA: Education Development Center,Inc., 1999.

9. Decisions Near the End of Life at http://www.edc.org/CAE

10. Institute for Health Care Improvement BreakthroughSeries on End-of-Life Care, Boston, MA.

11. The United Hospital Fund Palliative Care Initiative athttp:/ /www.uhfnyc.org/archive/clgrant/grpci.html

12. Supportive Care of the Dying: A Coalition for Com-passionate Care at http://www.careofthedying. org/

13. Higginson IJ, Romer AL: Measuring quality of care in palliative care services. J Palliat Med, 2000;3:229–236.

14. Hearn J, Higginson IJ, on behalf of the Palliative CareCore Audit Project Advisory Group: Developmentand validation of a core outcome measure for pallia-tive care: The palliative care outcome scale. Qualityin Health Care 1999;8:219– 227.

15. Higginson I. (ed): Clinical Audit in Palliative Care. Ox-ford: Radcliffe Medical Press, Ltd., 1993.

16. Toscani F, Romer AL: Using the STAS in a PalliativeCare Unit in Cremona, Italy. J Palliat Med, 2000;3:237–242.

17. Yurk R, Lansky D, Bethell C: Quality of Care at the Endof Life: Assessing Palliative Care for Patients and Fami-lies. Unpublished final report. Portland, Oregon: TheFoundation for Accountability, 1999.

18. See for example: Pearlman RA, Uhlmann RF, JeckerNS: Spousal understanding of patient quality of life:Implications for surrogate decisions. J Clin Ethics1992;3:114– 123.

19. See, for example, The Toolkit of Instruments to MeasureEnd-of-Life Care. Joan Teno, Associate Professor atBrown University School of Medicine at http://www.chcr.brown.edu/pcoc/toolkit.htm and Dr. Marcello Tam-burini’s Quality of Life Assessment in Medicine web-site at http://www.glamm.com/ql/

20. Steinberg SM, Block SD: Caring for patients at the endof life in an HMO. J Palliat Med 1998;1:387– 399.

21. Health Care Financing Administration: Quality Im-provement System for Managed Care (QISMC): In-troduction. Available at http://www.hcfa.gov/quality/docs/qismc%2Din.htm

Address reprint requests to:Mildred Z. Solomon, Ed.D.

DirectorCenter for Applied Ethics and Professional Practice

Educational Development Center, Inc.55 Chapel St.

Newton, MA 02458

E-mail: intleoljournal@edc.org

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