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Page 1: Vohs Award Winner: Single-Region Category The … Award Winner: Single-Region Category The Palliative

7The Permanente Journal/ Spring 2003/ Volume 7 No. 2

Vohs Award Winner: Single-Region Category

The Palliative Care ProgramBy Richard D Brumley, MD

Susan Enguidanos, MPHKristine Hillary, RN, MSN

Background:Recognizing the Needfor Palliative Care

The need to improve health carefor Americans as they approach theend of their lives has gained in-creased attention during the past de-cade. The imminent influx of “babyboomers” into our elderly popula-tion has created an additional bur-den on our health care system: theneed to develop new models forproviding cost-effective, patient-centered palliative care at the endof life. Persons older than 65 years—a group that currently represents12.6% of the US population—willnearly double by 2030 to accountfor 20.2% of the US population.1

Each year, fewer than 5% of Medi-care recipients die. Yet the cost ofservices in the last year of life forthis small segment of enrollees rep-resents 25% of total annual Medi-care costs.2 The mean Medicare costof health care in the last year of lifeis approximately $26,000—about sixtimes the per capita health care costfor Medicare survivors.2

Unfortunately, current constraintsimposed by Medicare regulationsserve as enormous barriers to de-veloping models of palliative carefor terminally and chronically ill pa-tients. These barriers and numerousbarriers to providing hospice ser-vices (eg, patients refusing hospiceservices, physician uncertainty indetermining life expectancy, patientunwillingness to forego curativecare, negative connotations of hos-pice care) result in patients dying

either in acute care units or in inten-sive care units, sometimes after re-ceiving medically futile care. In 1996,in the Kaiser Permanente (KP) South-ern California TriCentral Service Area(KP TriCentral), 63% of patients whodied in the intensive care unit and54% of those who died in the medi-cal/surgical unit had a primary or sec-ondary diagnosis of one of threecommonly fatal, incurable condi-tions: cancer, congestive heart fail-ure (CHF), or chronic obstructivepulmonary disease (COPD).

The KP TriCentral leadership sub-sequently recognized the need todesign a program that changed thefocus from inpatient to home-basedcare for patients nearing the end oflife. In contrast to traditional mod-els of care—which emphasize cura-tive treatment until death and offerlittle, if any, palliative care—the pro-gram would integrate pallia-tive care into curative careearlier in the patient’s dis-ease process. Seriously illpatients needed services toenable them to better man-age their own care at homeand thus reduce their needfor inpatient and emergencyservices. With this improvedmodel of end-of-life care, wehypothesized that palliativecare patients would bemore satisfied with theirhealth care and would usefewer medical services thanwould their counterparts re-ceiving traditional end-of-lifemedical care.

Developing a PalliativeCare Program

The KP TriCentral Palliative Care(TCPC) Program began as a pilotstudy in 1997, and began receivingannual funding in 1998. The TCPCProgram is an interdisciplinary,home-based program for patients atthe end of life. The programoffers these patients enhancedpain control, symptom man-agement, and psychosocialsupport to improve quality oflife and care while reducingthe overall cost of care. Byblending palliative care andcurative measures, the TCPCProgram provides gradualtransition for patients with a12-month survival prognosisand thus allows them to re-tain their primary care physi-cian while receiving home vis-its from the palliative careteam and physician.

Abundantly patient-centered, theTCPC Program’s mission—consistent

Table 1. KP Southern California TriCentral Service AreaHospice and Palliative Care Program team membersContact persons:Richard D Brumley, MD, Medical Director, Hospice and Home HealthSusan Enguidanos, MPH, Research Analyst, Partners In Care

& TriCentral Service Area Continuing Care DepartmentKristine Hillary, RN, MSN, Department Administrator, Hospice and

Home HealthTeam members:Janet Allen, MSN, RN, Assistant Department Administrator, HospiceWilly Arban, RN, Triage Supervisor, Hospice and Palliative CareDavid Cherin, PhD, Senior Research Consultant, Partners In CareTim Clark, RN, Palliative CareSusan Mattera, RN, MN, Assistant Department Administrator,

Quality ManagementKaren Oman, LCSW, Palliative CareLuella Robison, RN, Clinical Nurse Supervisor, Palliative CareJune Simmons, LCSW, CEO, Partners In CareJill Volkman, RN, Intake Nurse, Palliative CareSandee Washington, RN, Clinical Nurse Supervisor, Palliative CareGretel Whisnant, RN, Clinical Nurse Supervisor, Palliative Care

clinical contributions

A preliminary report of these data was presented at “Promoting FinancialExcellence in End-of-Life Care: A Policy Directions Forum,” September 9, 2002,Washington, DC, sponsored by The Robert Wood Johnson Foundation.

… currentconstraintsimposed by

Medicareregulations serve

as enormousbarriers todevelopingmodels of

palliative care forterminally andchronically ill

patients.

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8 The Permanente Journal/ Spring 2003/ Volume 7 No. 2

clinical contributions

with that of the KP Southern Califor-nia Region—is to achieve the bestpossible quality of life for patientsby relieving suffering, controllingsymptoms, and restoring functionalcapacity while remaining sensitive topatients’ personal, cultural, and reli-gious values, beliefs, and practices.The program’s interdisciplinaryhealth care team (Table 1) encour-ages and empowers patients to ac-tively participate and collaborate indesigning, evaluating, and revisingthe patient’s plan of care.

Structure and Implementa-tion of the TCPC Program

Focusing on patients at the endof their lives, the TCPC program isdesigned to serve the approximately2300 TriCentral members each yearwho die from a chronic medicalcondition. Specific criteria for ad-mission into the TCPC Program gen-

erally include homeboundstatus, a diagnosis of life-threatening disease (primarilycancer, CHF, or COPD), anda prognosis of not more thanapproximately one year tolive. Referrals originate frommany sources, including phy-sicians, discharge planners,home health nurses, and so-cial workers.

Although modeled after KP’s hos-pice program (which operateswithin Medicare guidelines), theTCPC Program features three impor-tant modifications to overcome cur-rent barriers to palliative care:

• Because estimating life expect-ancy is often difficult, referralguidelines are more relaxed forthe TCPC Program than for hos-pice admission (which requiresa prognosis of less than sixmonths); patients are acceptedinto the TCPC Program if theyhave a prognosis of less than ayear to live. Physicians are

asked to refer any patient to theTCPC Program if the physician“would not be surprised if thispatient died in the next year.”

• Although the TCPC Programemphasizes improved paincontrol and symptom manage-ment, patients participating inthe program need not foregocurative care as they do in hos-pice programs.

• Patients participating in the pro-gram are assigned a palliativecare physician, who coordinatescare from a variety of healthcare practitioners (including thepatients’ primary care physi-cian), thus preventing the ser-vice fragmentation that oftenoccurs in health care systems.

In addition to these design im-provements, the program featuresfive core components, each ofwhich contributes to enhanced qual-ity of care and patient quality of life:

• An interdisciplinary team ap-proach that focuses on the pa-tient and family and in whichcare is provided by a core teamconsisting of a physician,nurse, and social worker withexpertise in pain control, othersymptom management, andpsychosocial intervention.

• Home visits by all team mem-bers (including physicians) toprovide medical care, support,and education as needed bypatients and their caregivers.

• Ongoing care management to fillgaps in care and to ensure thatthe patient’s medical, social, andspiritual needs are being met.

• Telephone support via a toll-free number as well as after-hours home visits available 24hours per day, seven days perweek, as needed by the patient.

• Advanced care planning thatempowers patients and theirfamilies to make informed

decisions and choices aboutend-of-life care.

Ongoing Program QualityMeasures

A patient survey was administeredto all patients participating in theTCPC Program to assess their satis-faction with the care they receive.The program’s performance goal isfor satisfaction levels among partici-pating patients to be as high orhigher than among other patientsreceiving home health care. Sinceinception of the TCPC Program,patients completing satisfaction sur-veys have consistently rated the pro-gram highly (4.5 to 4.7 on a scale of1 to 5, where 5 = most satisfied).

All visiting team members as-sessed pain level during each con-tact with the patient and ensuredthat the mean pain rating remainedat 3 or lower on a scale of 0 to 10,where 0 was lowest pain rating. Thisgoal has been consistently met for96% of patients participating in theTCPC Program.

The TCPC Program has continuedto monitor service use for all pa-tients. By analyzing utilization re-view reports, staff members rou-tinely count 911 calls and unplannedinpatient admissions, try to explainthese calls and admissions, and de-termine what, if anything, could havebeen done to prevent them. Theprogram’s performance benchmarkis to reduce the total number of 911calls and unplanned admissions tofewer than three per month per 100patients enrolled in the TCPC Pro-gram. The TCPC team has reducedthe number of these calls and un-planned admissions to a mean oftwo to four per month per 100 pa-tients enrolled in the program.

TCPC ProgramEvaluation Methods

The TCPC Program was evaluated

The Palliative Care Program

The program’sinterdisciplinaryhealth care teamencourages and

empowers patientsto actively

participate andcollaborate …

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9The Permanente Journal/ Spring 2003/ Volume 7 No. 2

clinical contributions

by Partners In Care Foundation, anexternal nonprofit health researchgroup, to determine whether theprogram met the complex physical,emotional, social, and spiritual needsof chronically ill patients at the endof their lives while improving thecost effectiveness of such care. Thisevaluation was conducted as botha quality assurance measure and asrigorous research investigation ofa breakthrough service model. TheKaiser Permanente Southern Cali-fornia Human Subject ProtectionCommittee approved the study.

Study Designand Participants

A nonequivalent comparisongroup design was used in which theintervention group was comparedwith a group receiving usual careservices. The intervention groupconsisted of patients enrolled in theTCPC Program; the comparisongroup consisted of KP home healthpatients who, like the interventiongroup, had a diagnosis of COPD,CHF, or cancer; two or more emer-gency department visits or hospitaladmissions in the past year; and lim-ited life expectancy.

A total of 558 participants wereenrolled in the study: 210 patients inthe intervention group and 348 in thecomparison group. The 73 eligiblepatients who declined to be inter-viewed were statistically equivalentin diagnosis, gender, age, ethnicity,and study group eligibility (ie, forintervention or comparison group)to study participants.

To ensure that the intervention andcomparison groups were comparable,data analyses were conducted amonga subgroup of patients: the 298 par-ticipants who died during the twoyears of the study (159 in the TCPCProgram, 139 in the comparisongroup). By selecting participants whomet this selection criterion, we could

compare similar groups of patients atthe end of life. The place of deathwas also recorded for each patient.

Data CollectionAll data were collected between

March 1999 and August 2000. Pa-tients were interviewed by tele-phone seven days after enrollmentin either the TCPC Program or thecomparison group and every 60days thereafter. These interviewswere conducted by undergraduateand graduate-level research assis-tants who were blinded to groupassignment. Data collected fromthe interviews included demo-graphic data as well as patients’rating of their illness severity, qual-ity of life, and satisfaction withservices. The Reid-Gundlach Sat-isfaction with Services3 instrumentwas used to measure patient sat-isfaction with services. The patientsatisfaction survey yielded overallratings for three categories: satis-faction with services, perceptionof service providers, and likeli-hood of recommending services toothers in the future.

Service utilization data were col-lected from KP administrative data-bases. These data included number ofemergency department visits, physi-cian office visits, hospital days, skillednursing facility days, home health andpalliative visits, and hospice visits.

The cost effectiveness of the TCPCmodel was evaluated using staffcosts only.

Data AnalysisAnalyses were conducted using

the SPSS 10.1 statistical softwarepackage (SPSS Inc, Chicago, Illi-nois). Statistically significant be-tween group differences in numberof days of service and illness se-verity were controlled as covariateswhen service use data were ana-lyzed. Multivariate analysis of co-

variance (MANCOVA) also con-trolled for Type I error associatedwith multiple tests. Post hoc Stu-dent t-tests were conducted oneach dependent variable to deter-mine group differences for eachvariable. Multiple regression wasconducted to determine the por-tion of costs explained by studygroup, controlling for days of ser-vice, severity of illness, and diag-nosis of CHF. Review of the datafrom the linear regression analysisshowed violation of the linearity as-sumption; therefore, semilog trans-formation was conducted on thedependent variable (costs) usingthe LIMDEP 7.0 data analysis soft-ware package (Econometric Soft-ware, Inc, Plainview, New York).Alpha (threshold of statistical sig-nificance) was set at .05.

Results of TCPCProgram EvaluationHigh Patient Satisfaction

No statistically significant differ-

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Figure 1. Graph shows change in mean satisfaction scores atenrollment and 60 days after enrollment among participants in theKP Southern California TriCentral Palliative Care (TCPC) Program(intervention group) and comparison group enrolled in a traditionalhome health program. Mean satisfaction score was significantlyhigher at 60 days after enrollment for the TCPC group only(p = .01). Maximum satisfaction score reported was 48.

The Palliative Care Program

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10 The Permanente Journal/ Spring 2003/ Volume 7 No. 2

clinical contributions

ence in mean satisfactionscores was seen between in-tervention and comparisongroups at baseline, althoughsatisfaction at baseline washigh for both groups (inter-vention group mean score =41, comparison group meanscore = 40). However, at 60days after enrollment, the sat-isfaction score for the interven-tion group increased signifi-

cantly from baseline (p = .01), whereasscores for the comparison group re-mained unchanged (Figure 1).

Our data analysis of patients whodied during the study enabled us tocompare place of death for inter-vention and comparison groups(Figure 2); significantly more pa-tients in the intervention group diedat home (87%) than in the compari-son group (57%) (p < .001).

Effective Cost ManagementThe intervention group had fewer

emergency department visits, inpa-tient days, skilled nursing days, andphysician office visits than did thecomparison group, although theintervention group had more homecare visits than did the comparison

group (Figures 3a,b).For the TCPC group, per-patient

cost reduction was seen across di-agnoses (range $3514 to $8293) butwas significant for patients who hadcancer (p = .001) or COPD (p = .02)(Figure 4). Per-patient costs for theintervention group averaged $6580less than for the comparison group,a significant reduction of 45%(p <. 001). Because our cost-effec-tiveness calculation did not includefixed costs (such as building main-tenance), which are higher for acutecare services compared with home-based services, the cost reductionresults are extremely conservative.

DiscussionThe results of this study indicate

that enrollment in the TCPC pallia-tive care model produced lower costsof care as well as higher patient satis-faction than did enrollment in usualhealth care services. These findingsremained highly significant even af-ter the data were controlled for daysof service, severity of illness, and hav-ing a CHF diagnosis.

The primary innovations of theTCPC Program were developmentand implementation of a new

model of health carein which services areprovided to chroni-cally and seriously illHealth Plan membersover an extended pe-riod of time. Insteadof patients experienc-ing an abrupt transi-tion from curativecare to pall iat ivecare—a situation thatexists under Medi-care guidelines inmost care settings—the TCPC Programensures continuitybetween traditionalmedical care and

hospice care through gradual tran-sition from a curative focus to in-creasing palliative measures. Inaddition, the KP fiscal structure—currently limited by traditionalMedicare financing—was reorga-nized to support development ofan outpatient palliative care model.Because cost savings were realizedin an inpatient setting, financial sup-port was transferred from inpatientbudgets to support the TCPC home-based program. These organiza-tional and fiscal difficulties are en-countered by most Health caresystems; therefore, few similarlycomprehensive models of care any-where in the United States can com-pare with the KP model.

This study offers tremendous im-plications for health care. As notedin this study, the palliative caremodel reduced by 45% the cost ofservices received by patients at theend of life. Given the high cost ofhealth care in the last year of life,this cost reduction represents tre-mendous savings.

In addition to being costly, acutecare at the end of life is not alwayspreferred by patients who are neardeath. The SUPPORT Investigators4

found that although most patientsstudied desired to die at home,about 60% of deaths occurred in thehospital, and 18% occurred in nurs-ing homes or hospice. In addition,many patients who receive acutecare treatment at the end of life re-ceive aggressive and futile forms oftreatment.5 Thus, the palliative careprogram provides an ethical alter-native to traditional end-of-life careby allowing patients an opportunityboth to die without pain and to re-main in the comfort of their ownhome. The lower use of emergencycare, hospital, skilled nursing facil-ity, and physician office visits amongmembers of the intervention groupcompared with the comparison

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Figure 2. Graph shows place of death among members of intervention andcomparison groups. More TCPC patients died at home (p <. 001) than thosereceiving usual care; no TCPC patients died in the emergency department.

The Palliative Care Program

An unexpectedbenefit of the

study washeightened

consciousness—and acquisition—of improved end-

of-life skills byphysicians and

other health careprofessionals …

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11The Permanente Journal/ Spring 2003/ Volume 7 No. 2

clinical contributions

group illustrates the TCPC Program’sability to effectively transfer end-of-life care from a high-cost, acute caresetting to a lower-cost, home-basedsetting that allows patients to die inthe comfort of their own home. Thesubstantially higher satisfaction re-ported by patients in the interven-tion group at baseline and at eachfollow-up—as long as 60 days afterstudy enrollment—supports a rec-ommendation that care be trans-ferred from a hospital setting to thehome environment.

The study provided the conclu-sive evidence needed to increase thestandard of care to seriously ill KPmembers by integrating the TCPCmodel into usual care within the KPSouthern California TriCentral ServiceArea. An unexpected benefit of thestudy was heightened conscious-ness—and acquisition—of improvedend-of-life skills by physicians andother health care professionals whodo not directly provide palliative careservices. In addition, the TCPC teammembers learned not only to worktogether as a group but also to de-velop the skills necessary to plan,implement, test, and improve thequality of end-of-life care. Teammembers continue to use these skillsas they seek further avenues for en-hancing the quality of care.

Our evaluation was limited by itsresearch design; to further test thismodel and to strengthen the validityof the findings, randomized con-trolled studies are needed. In addi-tion, the potential for generalizingthis model to other sites and popu-lations is limited because the studywas conducted within a closed-sys-tem managed care organization andbecause the sample was drawn fromthe Southern California area only.Multisite studies are needed to testthe ability to generalize this modelto other organizational systems,populations, and communities.

Future ofPalliative Care

Interest in replicating thismodel has been expressednationally. In June 2001,the KP Northwest Regionimplemented the TCPCmodel. Preliminary analysishas shown results consis-tent with the findings forthe KP Southern CaliforniaTriCentral Service Area(Andy Kyler, Louise HClark, MD, personal com-munication, June, 2002).a

In January 2002, the TCPCProgram was awarded two-year funding from theGarfield Memorial Fund totest replicability of theTCPC Program at two otherKP sites. Currently, theTCPC staff is working withhealth care teams at KPsites in Colorado and Ha-waii to initiate the TCPCProgram and to both refineand adapt it as needed forsuccessful implementationat each site.

In April 2001, the Projecton Death in America (con-ducted by the Open Soci-ety Institute, New York)named Dr Brumley and MsHillary to its Faculty Schol-ars Program. This programprovides national recognition tooutstanding faculty and clinicianswho are working to improve end-of-life care. Dr Brumley and MsHillary have developed a compre-hensive “toolkit” that includes allthe support materials needed toimplement the TCPC Program. Tobenefit the largest professional au-dience possible, the toolkit is avail-able on the Web for general publicaccess at: www.growthhouse.org/palliative.

Dr Brumley led development of

the TCPC Program and continuesto serve as its director. Throughout,he has been assisted by Ms Hillary,who serves as nurse manager forthe TCPC Program. The KP South-ern California TriCentral ServiceArea leadership team has providedadministrative and financial assis-tance to ensure ongoing operationand expansion of the TCPC Pro-gram. The TCPC team has been as-sisted throughout by the Partners InCare Foundation, an external non-profit agency providing research

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Figure 3a,b. Graphs show service utilization by patients in intervention andcomparison groups, categorized by a) mean number of visits and b) meannumber of days. Compared with the TCPC group, the comparison grouphad higher mean number of physician office visits (p = .001), emergencydepartment visits (p < .001), inpatient days (p < .001), and skilled nursingfacility days (p < .000) but lower mean number of home visits (p = .005).

The Palliative Care Program

3a.

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12 The Permanente Journal/ Spring 2003/ Volume 7 No. 2

clinical contributions

and evaluation expertise and con-sultation as well as leadershipstrongly influenced by social work.

Together, this multidisciplinaryteam contributed to success of theTCPC Program by integrating clini-cal, financial, service delivery, andresearch methods. These rigorousmethods ensured ongoing successof the TCPC model and facilitatedits replication within and beyond theKP system.

Presentations on the TCPC Pro-gram have been delivered at pro-fessional meetings and conferencesinternationally. Moreover, DrBrumley has served as faculty mem-ber—and TCPC staff participated—in an Institute for Health Improve-ment national collaborative on

improving end-of-life care. TheTCPC model has been shared withmore than 200 health care teams andagencies throughout the UnitedStates. In addition, two articles6,7

have been published in professionaljournals, and another8 is in press.

Dr Brumley has testified in Wash-ington, DC, before a congressionalsubcommittee examining end-of-lifehealth care issues. The purpose ofthis invitational forum was to as-semble key policymakers, govern-ment officials, and leaders in healthcare to discuss the national impli-cations of recent demonstrationprojects in end-of-life care and todetermine next steps toward im-proving access to services and qual-ity of care for dying Americans andtheir families. ❖To be published in a revised version as:Brumley RD, Enguidanos S, Cherin DA. Ef-fectiveness of a home-based palliative careprogram for end-of-life. J Palliat Med 2003Oct;6(5). Reproduced by permission of thepublishers, Mary Ann Liebert, Inc.

a Continuing Care Services, KaiserPermanente Montgomery Park,Portland, OR

AcknowledgmentsThe program was funded by the Garfield

Memorial Fund. Funding for supportmaterial was provided by the Project onDeath in America, Open Society Institute,New York. David Cherin, PhD, providedthe research design, overview of the study,and assistance with data analysis.

References1. Styring W 3rd, Jonas DK. Health care

2020: the coming collapse of employer-provided health care. Indianapolis(IN): Hudson Institute; 1999.

2. Hogan C, Lynn J, Gabel J, Lunney J,O’Mara A, Wilkinson A. Medicarebeneficiaries’ costs and use of carein the last year of life: final report.Washington (DC): Medicare PaymentAdvisory Commission; 2000.Available at: www.medicaring.org/educate/download/medpac.pdf(accessed January 20, 2003).

3. Reid PN, Gundlach JH. A scale forthe measurement of consumersatisfaction with social services. JSoc Serv Res 1983 Fall;7(1):37-54.

4. Pritchard RS, Fisher ES, Teno JM, et al.Influence of patient preferences andlocal health system characteristics onthe place of death. SUPPORTInvestigators. Study to UnderstandPrognoses and Preferences for Risksand Outcomes of Treatment. J AmGeriatr Soc 1998 Oct;46(10):1242-50.

5. Ahronheim JC, Morrison RS, BaskinSA, Morris J, Meier DE. Treatment ofthe dying in the acute care hospital.Advanced dementia and metastaticcancer. Arch Intern Med 1996 Oct14;156(18):2094-100.

6. Brumley RD. Future of end-of-lifecare: the managed care organizationperspective. J Palliat Med 2002Apr;5(2):263-70.

7. Cherin D, Enguidanos S, Brumley R.Reflection in action in caring for thedying: applying organizationallearning theory to improvecommunications in terminal care.Home Health Care Serv Q2001;19(4):65-78.

8. Brumley RD, Enguidanos S, CherinDA. Effectiveness of a home basedpalliative care program for end-of-life.J Palliat Med 2003 Oct;6(5). In press.

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Figure 4. Mean per-patient cost of care, categorized by diagnosis, for patients in intervention andcomparison groups. Compared with the TCPC group, the comparison group had higher costs ofcare for cancer (p = .001), for COPD (p = .02), and combined for cancer, COPD, and CHF (p < .001).

The Palliative Care Program

The TCPC modelhas been sharedwith more than200 health care

teams andagencies

throughout theUnited States.