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Hospice Care in a Cohort of Elders with Dementia and Mild Cognitive Impairment

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Page 1: Hospice Care in a Cohort of Elders with Dementia and Mild Cognitive Impairment

208 Journal of Pain and Symptom Management Vol. 30 No. 3 September 2005

Original Article

Hospice Care in a Cohort of Elders withDementia and Mild Cognitive ImpairmentDavid B. Bekelman, MD, MPH, Betty S. Black, PhD, Andrew D. Shore, PhD,Judy D. Kasper, PhD, and Peter V. Rabins, MD, MPHDepartment of Medicine (D.B.B., P.V.R.), Division of General Internal Medicine, and Department of

Psychiatry and Behavioral Sciences (D.B.B., B.S.B., P.V.R.), Johns Hopkins University School of

Medicine, Baltimore; and Johns Hopkins Bloomberg School of Public Health (D.B.B., B.S.B., A.D.S.,

J.D.K., P.V.R.), Baltimore, Maryland, USA

AbstractThe objectives of this study were to identify the characteristics associated with hospiceenrollment, to determine whether enrollment in hospice was associated with less pain andpsychiatric symptoms, and to assess caregiver satisfaction with care near death in a sampleof patients with dementia and mild cognitive impairment (MCI). Participants includeddecedents with dementia or MCI and other medical illnesses whose deaths were expected(n5 81) during a 3-year prospective, longitudinal, community-based cohort study. A total of29.6% (n 5 24) of participants received hospice care prior to death. Participants in hospiceexperienced less pain compared to those not in hospice, but this did not reach statisticalsignificance (41.7% vs. 62.5%, P 5 0.085). They were 65% more likely to be free ofpsychiatric symptoms (including restlessness, sleep problems, agitation, nervousness, andaggression toward others) during their final illness prior to death (OR 5 0.35; 95% CI0.13--0.96). In this cohort of people with dementia and MCI who died, several markers ofquality of care suggest that hospice care can be beneficial for patients with dementia orMCI. J Pain Symptom Manage 2005;30:208--214. � 2005 U.S. Cancer Pain ReliefCommittee. Published by Elsevier Inc. All rights reserved.

Key WordsDementia, hospice, symptoms, pain, mild cognitive impairment

IntroductionThe predicted increase in both prevalence

and in absolute numbers of people withdementia over the next 50 years concerns

Address reprint requests to: David B. Bekelman, MD,MPH, Department of Medicine, Division of GeneralInternal Medicine, Johns Hopkins University Schoolof Medicine, 1830 East Monument Street, Room8011, Baltimore, MD 21287, USA.

Accepted for publication: April 5, 2005.

� 2005 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.

policymakers and providers who are nowcompelled to consider how people with de-mentia will be cared for at the ends of theirlives.1 Hospice care has been suggested asa means for quality end-of-life care for patientswith advanced dementia.2 It is proposed to beof specific benefit to patients with dementiabecause of its emphasis on supportive care(including support for family), quality of life,aggressive symptom control, attention to for-mulating goals of care that guide medicaldecision making, creation of a comfortable

0885-3924/05/$--see front matterdoi:10.1016/j.jpainsymman.2005.04.003

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Vol. 30 No. 3 September 2005 209Hospice Care and Dementia

end-of-life experience, and bereavement serv-ices.3 Palliative care for dementia is stronglyfavored by health care providers and familiesof patients with dementia.4

In spite of the many potential benefits, thepercent of patients in hospice who wereenrolled for advanced dementia was reportedin 1995 to be less than 1%.5 More recent datafrom the 2000 National Home and HospiceCare Survey show that patients with a primarydiagnosis of dementia comprise 6% of admis-sions.6 Multiple barriers limit the number ofpatients admitted to hospice for advanceddementia. Medicare guidelines require a 6-month prognosis for admission to hospice.Current prognostic tools for dementia arepoor, although recent prospective studiesmay offer new prognostic guidance.7 To ourknowledge, no studies have prospectivelyevaluated length of survival for patients admit-ted to hospice with dementia. In addition,little is known about the characteristics orquality of care received by patients withdementia who are in hospice.

The objectives of this study were to identifythe characteristics associated with hospiceenrollment, to determine whether enrollmentin hospice was associated with less pain andpsychiatric symptoms, and to assess caregiversatisfaction with care near death in a sample ofpatients with dementia and mild cognitiveimpairment (MCI) and other medical ill-nesses. We hypothesized that participants inthis sample with dementia or MCI who wereenrolled in hospice would be more likely tohave cancer and would have a lower psychiatricsymptom burden because of the hospiceemphasis on symptom control compared tothose who did not enroll in hospice.

MethodsStudy Design

This study used data from the Memory andMedical Care Study (MMCS) conducted at theJohns Hopkins Medical Institutions. TheMMCS is a community-based prospectiveobservational cohort study of elders at riskfor dementia conducted from 1998 to 2002.Detailed information on the study design andmethods are available elsewhere.8

Setting and ParticipantsParticipants were identified from three pre-

vious population-based studies, two of whichwere conducted in the Baltimore, Maryland,area and the third in rural Maryland.9--11 Thesestudies screened over 12,000 elders with theMini-Mental State Examination (MMSE). Ofthe 1,802 participants scoring less than 24 onthe MMSE or having a decline of 4 or morepoints over 2 administrations, 724 were aliveand not institutionalized at the start of theMMCS. Of these, 512 (71%) were enrolled inthe MMCS.

Participants were classified as having de-mentia (n 5 349), mild cognitive impairment(MCI, n 5 133), neither dementia nor MCI(n 5 16), or indeterminate (n 5 14) based ona neuropsychological battery of four tests.Three of the tests were from a battery usedby the Consortium to Establish a Registry forAlzheimer’s Disease (CERAD):12 the BostonNaming Test, the Verbal Fluency Test, and theWord List Memory Test. The fourth measurewas the Digit Symbol subscale of the WechslerAdult Intelligence Scale-Revised.13 Using pub-lished age and education norms for these fourtests, participants scoring at or below 2.0standard deviations (SD) from the mean fornormal subjects of matched age and educationwere classified as having dementia. Partici-pants were classified as having MCI if they didnot meet criteria for dementia and scoredeither: 1) at or below 1.5 SD from the mean onany one of the four tests, or 2) at or below 1.0SD from the mean on at least two of the fourtests. Details on why these criteria were usedcan be obtained elsewhere.8 During follow-up,degree of dementia was evaluated with theTelephone Interview for Cognitive Status(TICS), a validated telephone version of theMMSE that has good sensitivity and specificityfor cognitive impairment.14 The TICS is scoredfrom 0 to 41, is highly correlated with theMMSE (Pearson correlation 5 0.94), and hashigh test--retest reliability (r 5 0.97). A scorebelow 31 suggests poor cognitive function.14

Subjects with dementia or MCI were in-cluded in the study (n 5 482). A knowledge-able informant (KI) was identified for eachsubject. These KIs completed baseline andfollow-up interviews. The sample analyzedhere consists of a subset of the sample of

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210 Vol. 30 No. 3 September 2005Bekelman et al.

subjects who had died (n 5 143) during thestudy and whose death was considered pre-dictable or expected by KIs (n 5 89), that is,subjects for whom hospice care might havebeen appropriate. Of these 89 subjects, ade-quate follow-up data were available for 81 ofthem. When participants died, a special ques-tionnaire was administered to KIs. This ques-tionnaire included the following yes/noquestions: ‘‘During [the patient’s] final illness,was he/she in pain? Was he/she experiencingany of the following problems: Restlessness?Sleep problems? Agitation or nervousness?Being aggressive with others?’’ The phrase‘‘final illness’’ was used in order to ascertainpresence of these systems close to death. Two-thirds of KIs completed the questionnairewithin 6 months of patient deaths; all werecompleted within one year. Medical diagnoseswere obtained from medical records andMedicare claims data.

Satisfaction with care was assessed in severalways. KIs were asked whether the studyparticipant was seen by a doctor within themonth prior to death, and if so (n 5 74),whether more could have been done to keepthem comfortable during the final illness.They were also asked if treatment decisionswould have changed if more information hadbeen given to them and how they felt overalltreatment quality was during the final illness.

The protocol was approved by the JohnsHopkins Bloomberg School of Public HealthInstitutional Review Board. Informed consentwas obtained from each subject or from thesubject’s surrogate decision-maker if the sub-ject was unable to give informed consent. Allparticipants with surrogate decision-makers(all of whom were KIs) assented to participate.The KIs also gave informed consent toparticipate.

Statistical MethodsData were analyzed using the Stata (Stata 8,

2003) statistical package. The associationsbetween demographic characteristics, medicalillnesses, and symptoms with enrollment inhospice were analyzed. Chi-square (c2) analy-sis with Fisher exact test when appropriate wasused for categorical variables; independent-sample t tests were used to examine continu-ous variables. All comparisons were two-tailedand a was set at 0.05. Participants with any

psychiatric symptom of dementia (includingrestlessness, sleep problems, agitation, ner-vousness, or being aggressive with others) werecompared to those without any symptoms totest the hypothesis that hospice care wasassociated with fewer symptoms.

ResultsCharacteristics of Patients with Dementia orMCI Associated with Hospice EnrollmentOf the 81 expected deaths, 24 (29.6%)

received hospice care. Sociodemographiccharacteristics of this population are shownin Table 1. All of the participants were olderthan age 70. The mean age for hospicepatients (86.7 yrs) was similar to that of non-hospice patients (85.3 yrs, P 5 0.436). Overtwo-thirds of each group had less than a 12th-grade education. No significant differences

Table 1Characteristics of Participants

Characteristic

Hospicepatients(n 5 24)

Non-hospicepatients(n 5 57)

P-value

Age70---79 5 (20.8) 11 (19.3) 0.14980--89 8 (33.3) 31 (54.4)90--99 11 (45.8) 13 (22.8)O100 0 2 (3.5)

Female n (%) 20 (83.3) 41 (71.9) 0.277Non-white n (%) 7 (29.2) 24 (42.1) 0.274Education n (%) yrs!12 17 (70.8) 38 (66.7) 0.53312 5 (20.8) 9 (15.8)O12 2 (8.4) 10 (17.5)

Below povertylevela,b n (%)

6 (28.6) 8 (17.4) 0.296

Living aloneb n (%)Yes 8 (34.8) 9 (17.3) 0.096

Dementia n (%) 19 (79.2) 47 (82.5)Mild CognitiveImpairment (MCI)n (%)

5 (20.8) 10 (17.5) 0.728c

Cancer, n (%) 8 (33.3) 6 (10.5) 0.013Mean TICS Score(measure of cognitiveimpairment)

14.1 (SD 9.6)18.5 (SD 9.6)0.060

Heart failure, n (%) 6 (25.0) 13 (22.8) 0.832COPD, n (%) 4 (16.7) 8 (14.0) 0.743Ischemic heartdisease, n (%)

6 (25.0) 14 (24.6) 0.967

Cerebrovasculardisease, n (%)

7 (29.2) 13 (22.8) 0.544

Hip fracture, n (%) 1 (4.1) 1 (1.8) 0.507Depression, n (%) 4 (16.7) 2 (3.5) 0.060

aBased on household size.bData on some participants missing.cP-value is for the comparison of dementia to MCI in hospicepatients versus non-hospice patients.

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Vol. 30 No. 3 September 2005 211Hospice Care and Dementia

were observed between hospice and non-hospice patients in sex, race, education, andpercentage above/below poverty level. Morepatients inhospice livedalone(34.8%)comparedto non-hospice patients (17.3%), although thiswas not statistically significant (P 5 0.096).

Medical diagnoses of the participants within6 months of death were examined to de-termine if they were associated with enroll-ment in hospice. A diagnosis of dementiacompared to a diagnosis of MCI based onneuropsychological testing was not associatedwith placement in hospice. The mean TICSscore was lower in the group in hospice, butthis difference did not reach statistical signif-icance. Having a diagnosis of cancer wasassociated with hospice care with an odds ratioof 4.08 (95% CI 1.04--16.4). Other illnesses,including cardiopulmonary illness (heart fail-ure, COPD, ischemic heart disease), cerebro-vascular disease, and hip fracture were notassociated with hospice care.

Pain and Psychiatric Symptom ControlNear the End of Life

The data on pain and psychiatric symptomsduring patient’s final illness as reported by KIsare presented in Table 2. Participants inhospice had less pain compared to those notin hospice, but this did not reach statisticalsignificance (41.7% vs. 61.4%, P 5 0.085).When participants with any psychiatric symp-tom associated with dementia (includingrestlessness, sleep problems, agitation, ner-vousness, or being aggressive with others) werecompared to those who were symptom-free,participants in hospice were 65% more likelyto be symptom-free during their final illnessprior to death (OR 5 0.35; 95% CI 0.13--0.96).

Table 2Pain and Psychiatric Symptoms Near Death

According to Hospice Enrollmenta

Symptom

Hospicepatients(n 5 24)n (%)

Non-hospicepatients(n 5 57)n (%)

Pain 10 (41.7) 35 (61.4)Restlessness 10 (41.7) 28 (49.1)Sleep problems 8 (33.3) 23 (40.4)Agitation or nervousness 6 (25.0) 23 (40.4)Being aggressive with others 5 (20.8) 9 (15.8)

aDifferences in each symptom between hospice and non-hospicepatients were not significant.

Duration of Hospice CareData were available on hospice duration for

22 of the 24 participants who received hospicecare. Median hospice duration was 38.5 days,the mean was 89.0 days, and the range was 1--304 days; 18.2% of hospice patients wereenrolled in hospice for over 6 months. Medianduration of hospice was 36.2 days (mean 73.8days) for those with cancer receiving hospicecare (n 5 8) and 42.0 days (mean 97.8 days)for those receiving hospice care who did nothave cancer (n 5 14). Of hospice enrollees,35.7% without cancer were in hospice care for6 months or more compared to 12.5% withcancer (P 5 0.240).

Satisfaction with Care and DecisionMaking Near Death

KIs reported that no more could have beendone in 95.0% of the participants enrolled inhospice compared to 72.2% of those notenrolled in hospice (P 5 0.103) (Table 2).For participants in hospice, 85.0% of KIs ratedoverall treatment by physicians/nurses asexcellent or very good. Similar ratings weremade of overall treatment of family membersby physicians/nurses.

Regarding decision making in those en-rolled in hospice, 90.0% of KIs felt thattreatment decisions would not have changedif more information had been given to them,compared to 74% in the non-hospice popula-tion (P 5 0.456). Of KIs in the hospicepopulation, 15% wanted to be more involvedwith the participant’s care, compared to 31.5%of KIs in the non-hospice population (P 5

0.156). A majority of participants in bothgroups had advance directives (Table 3). Ofthose who had any type of advance directive,63.1% of KIs in the hospice group and 62.9%of KIs in the non-hospice group said it helped‘‘a great deal.’’ One KI in the total sample(who was in the non-hospice group) said itcaused some problems.

DiscussionIn this prospective community sample of

people with dementia or MCI and othercomorbid medical illnesses, almost one-third(29.6%) of subjects who died and whose deathwas anticipated were enrolled in hospice care.The median length of stay in this sample (39

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212 Vol. 30 No. 3 September 2005Bekelman et al.

days) was longer than the median length ofstay in hospice found in large databases (25--36days).15 Median length of stay was even longerfor patients in hospice without a diagnosis ofcancer (42 days), and a large percent ofhospice enrollees without cancer (35.7%) werein hospice for longer than 6 months. Ourfindings of longer lengths of stay for patientswith dementia or MCI who did not have cancerare consistent with those found in theChristakiset al. sample.15 They found that Medicarebeneficiaries enrolled in hospice programs fora diagnosis of dementia had a median survivalof 74 days and 34.7% lived longer than 180days. Of their total sample, 14.9% of hospiceenrollees lived longer than 180 days. Thesenumbers should be of concern to policymakers. The 6-month prognosis requirementfor admission to hospice may be inadequatefor people with dementia who do not havecancer. If hospice is chosen as a mode of carefor advanced dementia, modifications mayneed to be made in eligibility criteria. Severalrecent small studies have also suggestedthis.16,17 The cost of hospice care for thispopulation would also need to be considered.

A substantial percentage of patients hadpain and other psychiatric symptoms close todeath regardless of whether or not they wereenrolled in hospice. Although some patients inthis sample had cancer and other medicalillnesses, the results support the hypothesis

Table 3Care and Decision Making Near Death

Hospicepatients(n 5 20)n (%)

Non-hospicepatients(n 5 54)n (%) P-value

‘‘No more could havebeen done’’

19 (95.0) 39 (72.2) 0.103

Treatment byPhysicians/nurses:‘‘Excellent’’ 10 (50.0) 14 (25.9) 0.050a

‘‘Very good’’ 7 (35.0) 19 (35.2)‘‘Good’’ 0 10 (18.5)‘‘Fair’’ 0 8 (14.8)‘‘Poor’’ 2 (10.0) 1 (1.8)‘‘Don’t know’’ 1 (5.0) 1 (1.8)b

Advance directive 19 (79.2) 35 (64.8) 0.205Signed Living Will 13 (54.2) 28 (49.1) 0.510Signed Durable Power

of Attorney forHealth Care

18 (75.0) 31 (54.4) 0.169

aPearson chi-square of all ratings.bOne missing value.

that dementia is independently associated withdistress and psychiatric symptoms. In addition,the presence of dementia and cognitiveimpairment create challenges for pain andsymptom assessment and treatment. The find-ings also suggest that caregivers observe thesedisturbing symptoms near the end of life inpatients with dementia and MCI. This studyfound that hospice care was associated witha lower symptom burden, suggesting thatpatients in hospice had more effective symp-tom management near death.Many of the participants in this study who

had a diagnosis of dementia by neuropsycho-logical testing did not have a diagnosis ofdementia found in Medicare claims data ortheir medical record (Rabins et al., unpub-lished data). Thus, conclusions from this studypertain to persons with dementia determinedby neuropsychological testing, not dementiarecognized by a physician.Increased severity of dementia as measured

by cognitive status was not associated with anincreased likelihood of enrollment in hospice.This is consistent with previous findings thatdementia is not recognized as a ‘‘terminalillness’’ or an illness that would be appropriatefor hospice referral.18 However, a sensitive,validated scale in the study measured demen-tia severity, and participants’ physicians or KIsmay not have known about participants’cognitive status. Furthermore, the study onlyincluded patients with some degree of cogni-tive impairment. A different result may befound when the association between cognitivestatus and hospice enrollment is compared inpatients with and without dementia. Finally,the presence of cancer may be confoundingthis association in this study. The number ofpatients was too small to perform a stratifiedanalysis by cancer status.Several previous studies have addressed care

for dementia near the end of life. Mitchellet al. used data from the Minimum Data Set toidentify persons with advanced dementia andother medical illnesses (but not cancer) whodied within 1 year of admission to any NewYork State nursing home.19 They concludedthat residents with dementia were not per-ceived as having a terminal illness and did notreceive optimum palliative care. In anotherretrospective study, patients with and withoutdementia who died in a variety of settings had

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Vol. 30 No. 3 September 2005 213Hospice Care and Dementia

similar rates of antibiotic use and much lowerrates of opioid analgesic medications.20 Voliceret al. conducted a retrospective survey of familycaregivers of individuals with dementia andfound that dying in the home was associatedwith fewer symptoms and less discomfortcompared to dying in other settings.21 Medicalcomorbidities were not reported.

This study has several limitations. First,questions about hospice were only asked ofparticipants whose deaths were ‘‘expected.’’This resulted in a sample that was notrepresentative of participants with dementiain the community who died. However, thisapproach excluded persons for whom hospicewould not have been relevant. Second, thesmall sample size may have led to an inabilityto detect statistically significant differences.Third, questions about participants’ symptomsnear the end of life were asked of surrogatesrather than the patients themselves. However,surrogate reports have significant importancein evaluating the health status and quality oflife of people with cognitive impairment nearthe end of life.22--24

This study contributes to the literature ondementia and hospice by confirming thelonger duration of hospice use by patientswith dementia that has been observed insecondary data analyses of Medicare claimsdata in a prospective, longitudinal study. Inaddition, the findings of fewer symptomproblems and high rates of satisfaction withhospice care raise the possibility that hospicemay be beneficial for patients with dementia.Future work can address this issue in moredetail by collecting additional quality of careand health status information on patients withdementia at multiple time points while inhospice.

AcknowledgmentsThis study was supported by NIMH grant

R01-MH 56414 and NHLBI grant HL 01780.The authors are grateful to Dr. Sydney Dy forreviewing a prior version of this manuscript.

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