A Preliminary Study of the Utility of the Brief Hospice Inventory

© U.S. Cancer Pain Relief Committee, 2001 0885-3924/01/$–see front matterPublished by Elsevier, New York, New York PII S0885-3924(01)00296-2

Vol. 22 No. 2 August 2001 Journal of Pain and Symptom Management 637

Original Article

A Preliminary Study of the Utility of the Brief Hospice Inventory

Hong Guo, MD, MS, Perry G. Fine, MD, Tito R. Mendoza, PhD, and Charles S. Cleeland, PhD

Pain Research Group (H.G., T.R.M., C.S.C.), The University of Texas M. D. Anderson Cancer Center, Houston, Texas; and Pain Management Center (P.G.F.), Department of Anesthesiology, University of Utah, Salt Lake City, Utah, USA

Abstract

The increasing number of palliative care patients necessitates a simple, reliable instrument to routinely measure outcomes among hospice patients. We tested the utility of the Brief Hospice Inventory (BHI) to assess outcomes of hospice patients and estimations of patients’ outcomes by nurse caregivers. In a prospective study, 145 home-based hospice patients were enrolled in the study from VistaCare Hospice. During the first week of admission, patients and nurse caregivers completed the BHI, which assessed patients’ symptoms, satisfaction with care, and quality of life. Factor analysis supported a two-factor structure for the BHI for patients and caregivers, including a symptom subscale and quality of life subscale. Patients with severe symptoms showed improvement on the symptom subscale, but not the quality of life subscale, during the first 2 weeks after admission. The BHI shows utility in measuring hospice patients’ symptom severity and quality of life over time.

J Pain Symptom Manage 2001;22:637–648. ©

U.S. Cancer Pain Relief Committee, 2001.

Key Words

Hospice, palliative care, assessment, caregivers, symptoms, outcomes, quality of life

Attempts at curative therapies and the acutecare model of crisis-oriented treatment ap-proaches are not usually appropriate for pa-tients with advanced chronic disease. With therapidly growing number of patients withchronic and life-limiting conditions, it has be-come increasingly obvious that current systemsof care have not been designed to address thisreality. It is now widely held that there is ampleroom for improvement in caring for terminallyill patients.

1

A care plan focused on compre-

hensive palliative care is most likely to achievethe best quality of life for patients and theirfamilies. This plan must ensure good controlof pain and other distressing symptoms, in con-junction with support directed at psychologi-cal, social, and spiritual issues.

2–6

The finalphase of palliative care in the United States isoften provided by hospice programs, whichcare for patients with a life expectancy mea-sured in months. The critically important clini-cal challenges at this juncture are preventingand controlling severe physical symptoms, re-sponding to psychological or emotional needs,and paying attention to spiritual well-being.

Interdisciplinary hospice care teams coordi-nate total care, mostly at the patient’s place ofresidence, focusing on the many dimensions of

Address reprint requests to:

Charles S. Cleeland, PhD,Pain Research Group, 1100 Holcombe Blvd., Box221, Houston, TX 77030, USA.

Accepted for publication: October 31, 2000.

638 Guo et al. Vol. 22 No. 2 August 2001

the end-of-life experience to promote the bestquality of life as defined by the patient. Opinionpolls, including reports of the Oregon experi-ence with Physician Assisted Suicide policy,strongly suggest that it is inattention to funda-mental psychosocial–spiritual needs, fears of iso-lation, abandonment, loss of autonomy and dig-nity, and a sense of being a burden that causedistress about the dying process in the public’smind.

7,8

These reports strongly indicate theneed for health services to ensure greater atten-tion to comprehensive care for dying patients,and use uniform measures to compare the effi-cacy of different interventions and programs.Research has long been needed to explore vari-ables that are most influenced by hospice-typeservices.

9

A better understanding of thestrengths and limitations of hospice care in ad-dressing the needs of terminally ill patients maybe better achieved if measurements of symp-toms and other outcomes are compared overthe course of time after initiation of services.

For severely ill patients in hospice, frequentand accurate assessments are essential for suc-cessful management of physical and psycholog-ical symptoms. Several instruments have beenused to monitor symptoms of patients with ma-lignancies (e.g., Edmonton Symptom Assess-ment System, Rotterdam Symptom Checklist,Memorial Symptom Assessment Scale).

10–13

These tools focus only on the assessment ofphysical and psychological symptoms and donot address issues related to non-symptomcomponents of well-being.

In order to improve patients’ quality of life,some assessment tools include items to evalu-ate their outlook of life, satisfaction of care,and social functioning.

14,15

The items that as-sess the interference of cancer-related symp-toms, in the recently developed M.D. Ander-son Symptom Inventory,

16

may be used as anestimate of general quality of life.

17

There are very few validated and reliable out-come assessment tools designed specifically foruse with patients receiving hospice care. TheMissoula–Vitas tool is an important instrumentfor measuring multidimensional hospice out-comes from the patient’s perspective.

18

How-ever, this 25-item tool asks questions aboutsymptoms in general, instead of assessing anyparticular symptom in detail. Quantitative mea-surement of prevalent physical and psychologi-cal symptoms might be more helpful in imple-

menting different symptom interventions andimproving quality of hospice care.

McMillan et al.

9

developed The HospiceQuality of Life Index (HQLI) for patients withcancer in home-care hospice. The HQLI is a25-item questionnaire with each item rated ona 1–10 scale. However, it does not cover the fullrange of symptoms experienced by the majorityof hospice patients. For example, shortness ofbreath is ranked as the second most commonphysical problem for hospice patients close todeath and thought to be a clinical marker forthe terminal phase of their disease.

19,20

Cohen et al. validated the McGill Quality ofLife Questionnaire (MQOL) for patients withcancer receiving palliative care at home or asinpatients.

21

The MQOL is a 17-item question-naire with each item rated on a 0–10 scale. Itasks patients at all phases of illness, includingthose currently receiving treatment and thosewho have been treated, to list the physical symp-toms that are most problematic. The first threesymptom items are open-ended, which allowpatients to report only a few severe symptoms.

The McMaster Quality of Life Scale

22

assessesquality of life from the palliative patient’s per-spective and various aspects of the experiencethat patients include in their evaluation. How-ever, this 32-item tool might be too cumber-some for seriously ill hospice patients to com-plete, especially for repeated assessments.

The Brief Hospice Inventory was createdfrom the clinical experience of the VistaCareHospice physicians, staff, and collaborators.The primary objective of this study was to testthe utility of the BHI in assessing the percep-tions of patients and their caregivers on a widevariety of symptoms and general quality of lifeitems. O’Boyle et al.

23

emphasized that the pa-tient’s perspective on his or her own quality oflife should be incorporated into outcome as-sessment. The current study examines the util-ity of the BHI, which was concurrently adminis-tered to hospice patients and their nursecaregivers. It combines measures of what pa-tients identify as the most common physicaland psychological symptoms and items ontheir general quality of life, such as attitudesrelated to hospice care, satisfaction, and over-all quality of life into a single instrument.Though physical and psychological symptomsare different domains,

9

Portenoy et al. indi-cated that a large group of items on common

Vol. 22 No. 2 August 2001 A Preliminary Study of the Utility of the Brief Hospice Inventory 639

physical and psychological symptoms may bemore useful, particularly in tracking the clinicalchanges that result from therapeutic interven-tions.

13

Padilla et al. found that items on generalquality of life loaded on one factor among 126cancer patients in a validation study of Qualityof Life Index for Patients with Cancer.

15

A secondary objective of the study was to quan-titatively describe patients’ changes in symptompatterns across disease categories during thefirst two weeks following admission to hospice.This serves as a means of determining the effi-cacy of hospice interventions, measured as thereduction in perceived severity of distressingsymptoms. Additionally, the current study com-pares the responses of 20 hospice patients andtheir caregivers to an identical set of questionsabout the patients’ status at weekly intervalsduring the first three weeks of hospice care.

Methods

Patients

The Institutional Review Board of the Uni-versity of Utah Health Sciences Center grantedapproval for this study, which was conducted intwo home-based hospice settings located inPhoenix, Arizona and Orem, Utah, from May1997 to December 1998. Patient entry criteriaincluded conscious patients who could give in-formed consent and expressed a willingness toparticipate in the study. Patients were excludedif they were unable to participate because of fa-tigue, dementia, or unwillingness. All partici-pants (patients and nurse caregivers) providedverbal informed consent. Originally, 219 con-secutive patients were potentially eligible forthis study. Twenty patients were unwilling toparticipate, and 54 patients were excluded. Ofthose excluded, 48 were due to cognitive, func-tional, mood, sensory impairment, or languagebarrier, while 6 were actively dying. One hun-dred forty-five hospice patients were enrolledinto the study. Twenty-one nurses were en-rolled into the study and completed the BHI inorder to estimate their patients’ outcomes. Thepatients were rated a median number of 2times by the each of 21 the nurses.

Data Collection

Patients were assessed weekly during a regu-lar nursing visit. They completed the assess-ments either independently or with some de-

gree of assistance by professional hospice staff.Whenever possible, patients completed theirown symptom assessments alone or with assis-tance from the nursing staff. When clinical as-sessment revealed that a patient was too con-fused, somnolent, otherwise impaired, orunwilling to complete the assessment tool, thenursing staff would document the cause of in-completion. Nurses completed the BHI foreach patient by estimating the patient’s ratingon each of the outcome items without lookingat the BHI completed by the patient. When145 patients filled out the BHI for the first timeat admission, about 30% of patients completedthe BHI independently, 30% of patients com-pleted it with cues, and 40% of patients com-pleted it with full assistance. The average timefor completing the BHI was 9 minutes.

Sample

A total of 145 patients completed the BHIshortly after hospice admission (baseline data),and 63 completed follow-up surveys duringeach of the first two consecutive weeks after ad-mission. There were only 20 cases where pa-tients and their nurse caregivers completedsurveys during each of the first three consecu-tive weeks after admission. The severity of ill-ness of the patients admitted to hospice wasvery high, with median life expectancy of ap-proximately 17 days for patients admitted dur-ing the study period. Most patients became ei-ther too obtunded or had died beforeadditional assessments could be performed.Therefore, the comparison of patient and care-giver responses for 17 outcomes was based onthis sub-sample of 20 “matched pairs.”

Measures

The BHI (Figure 1) includes assessments ofphysical and psychological symptoms, patients’perceptions of hospice care, and patients’ rat-ings of their quality of life. Physical symptomsconsist of pain, tiredness, nausea, loss of appe-tite, and shortness of breath (i.e., dyspnea).Psychological symptoms include depression,anxiety, and distress related to changes in self-care ability. The assessments of patients’ per-ceptions of hospice care include overall symp-tom management, sense of being cared for,and the helpfulness of hospice care. Lastly,quality-of-life issues were assessed with itemspertaining to comfort, feelings of life as a gift


Fig. 1. The Brief Hospice Inventory.


versus a burden, sense of quality of life, satisfac-tion with relationships, meaning of life, andfulfillment of previously identified goals forthe preceding week. An identified nurse pri-mary caregiver was asked to complete the care-giver version of the BHI. This survey was identi-cal to the patient version, except that caregiverswere asked to rate their perceptions of whatthey thought the patient was experiencing.

Using 0–10 numeric rating scales allows forthe categorization of symptoms as severe ornon-severe. This method of classification isbased upon a model previously designed toidentify categories of pain intensity using theBrief Pain Inventory (BPI).

24

Insofar as the 0–10numeric rating scale for pain severity has beenextensively used and validated, it was chosen asthe template for all other symptoms being mea-sured. On the BPI, ratings of 1–4 correspond to“mild” pain, ratings of 5–6 correspond to “mod-erate” pain, and ratings of 7–10 correspond to“severe” pain.

24

Similarly, in a newly validated fa-tigue assessment tool, the Brief Fatigue Inven-tory, 7–10 on a 10-point scale defines the pres-ence of severe fatigue.

25

Therefore, for purposesof defining “severe” symptoms in this study, rat-ings of 7–10 were used. For comparison pur-pose, we tentatively dichotomized the 0–10 rat-ing for quality of life into 0–6 and 7–10.However, this is largely an untested assumption,and care must be taken in the interpretation.

Statistical Analysis

Principal axis factoring with oblimin rota-tion was used to test the construct validity ofthe BHI.

26

In assessing the reliability of theBHI, the coefficient alphas were calculated forsymptom outcomes and quality of life out-comes after testing how well-matched the datawas to the factor solution model. The appropri-ate factor solution was chosen based on the cri-teria of interpretability and fit.

27

In order to as-sess the test–retest reliability of the BHI, thecorrelation coefficients for each scale were cal-culated separately at two different time points.

Descriptive statistics were used to character-ize the sample and to calculate the percentagesof patients experiencing symptoms and qualityof life outcomes (scores from 7 to 10 are in thenegative direction) during the first two weeksafter admission to the hospice. Type I errorwas controlled using Bonferroni adjustments.

28

Paired samples

t

-tests were used to determine if

there were any significant differences betweenweek 1 and week 2 in the mean overall symp-tom scores and the mean overall quality-of-lifescores. Differences in means for individualsymptoms and quality of life items betweenweek 1 and week 2 were also tested by pairedsample

t

-tests. McNemar’s non-parametric testwas used to determine if the percentage of pa-tients, with at least one severe outcome, wassignificantly different between the first weekand the second week. All tests were two-tailed.A complete case analysis was used to addressthe problem of missing data. No data imputa-tion was used. Therefore, change in scoresmight be underestimated in the analysis.

To evaluate differences between patient andcaregiver ratings for each item, the differencebetween the patient’s score and the caregiver’sscore was computed by subtracting the care-giver’s score from the patient’s score. Possiblevalues range from

�

10 (caregiver rates theitem most negatively whereas the patient ratesthe item most positively) to

�

10 (caregiverrates the item most positively whereas the pa-tient rates the item most negatively). If the dif-ference is less than zero on a particular item,then the caregiver rated more negatively thanthe patient. If the difference is greater thanzero on a particular item, then the caregiverrated more positively than the patient. If thedifference is equal to zero, then there is con-gruence in the patient and caregiver ratings.

Results

The distribution of key patient characteris-tics is shown in Table 1. The mean age of patientswas 78 years (range

�

37–98 years) with 83% ofpatients 70 years or older. Approximately 48%of patients were male. Ninety-two percent ofthe patients were white. Forty-seven percent ofthe patients had cancer. Among these, the ma-jority (60%) had lung or gastrointestinal can-cer, accounting for 18% and 10% of patients,respectively. A total of 58 (46%) patients hadheart disease, chronic obstructive pulmonarydisease, or neurological disease. Although me-dian life expectancy was short, 20% of patientslived in the hospice longer than 6 months, ac-counting for an average length of stay in thehospice of about 40 days.

A principal axis factor solution with directoblimin rotation was used to examine the con-


struct validity of the BHI. In the patient survey,the eigenvalues were 9.29, 1.49, 1.07, and 0.88for 1, 2, 3, and 4 factors, respectively. In thecaregiver survey, the eigenvalues were 9.32,1.90, 1.11, and 0.79 for 1, 2, 3, and 4 factors, re-spectively. We started with the three-factor so-lution based on the rule of thumb that mean-ingful factors should be associated witheigenvalues greater than 1.0.

27,29

However, itwas difficult to interpret the resulting three fac-tors. In addition, Figure 2 indicates that thethird factor contributes very little relative tothe total eigenvalue, as shown in the scree plot.The same pattern can be observed for patientand caregiver responses. We then consideredthe two-factor solution model.

26,27,29

Table 2 presents the results of the two-factorsolution for the BHI when completed by pa-

tients and their nurse caregivers. Eight symp-toms (physical and psychological) showed highloading with a common factor. Nine quality-of-life outcomes, including both satisfactionand quality-of-life measures, were associatedwith another factor.

Once interpretability was established, we ex-amined model fit. We examined the adequacyof this two-factor solution for the BHI.Harman

29

set up the criterion for judging theadequacy of the solution: the standard devia-tion of the residuals should be less than orequal to the standard error of a correlation co-efficient defined as the reciprocal of thesquare root of the sample size. In the case ofthe two-factor solution for the patient survey,the standard deviation of the residuals at 0.06is less than the reciprocal of the square root of95, which is 0.10. And in the case of the two-factor solution for the caregiver survey, thestandard deviation of the residuals at 0.06 isless than the reciprocal of the square root of88, which is 0.11. Therefore, the two-factor so-lution is appropriate for the BHI based on thecriteria of interpretability and fit.

To assess the internal consistency reliabilityof the BHI, the Cronbach coefficient alpha wascomputed separately for the symptom subscale(8 items) and the quality of life subscale (9items) for the patient and caregiver survey. Ad-equate coefficient alpha results were found,both coefficients varied from 0.84 to 0.94, dem-onstrating that both of the subscales possessedgood internal consistency. For the BHI patientsurvey, the coefficient alpha was 0.88 (CI

�

0.84–0.91) for the symptom subscale and was0.94 (CI

�

0.92–0.96) for the quality of lifesubscale. For the BHI caregiver survey, the co-efficient alpha was 0.89 (CI

�

0.86–0.92) forthe symptom subscale and was 0.94 (CI

�

0.92–0.95) for the quality-of-life subscale. Toassess the test–retest reliability of the BHI, sub-scale scores were correlated between weeks 1and 2. The test–retest reliabilities ranged from0.58 to 0.63. These low reliabilities might bedue to the fact that most patients in this hos-pice have changing health status.

We assessed the correlation between overallsymptom scores (8 items) and overall quality oflife scores (9 items). The overall symptomscores were significantly correlated with qualityof life scores for patients (

r

�

0.71,

P

�

0.001)and caregivers (

r

�

0.83,

P

�

0.001). The cor-

Table 1

Characteristics of 145 Hospice Patients

Characteristic

n

%

Age

�

60 8 660–69 14 1170–79 43 3580–89 49 40

�

90 10 8Sex

Male 61 48Female 67 52

EthnicityWhite 117 92African-American 4 3Hispanic 6 5

Marital StatusMarried 61 48Widowed 42 33Single 18 14Divorced 7 5

Disease TypeCancer: Primary Organ System 60 47

Pulmonary 23 18Gastrointestinal 13 10Genitourinary 10 8Gynecological 10 8Brain/Hematopoetic 3 2Unknown 1 1

Cardiac disease 23 18Chronic obstructive pulmonary disease 20 16Neurodegenerative disease (e.g., ALS) 15 12Diabetes/AIDS 2 1Other (Disability) 7 6

Average length of stay

�

6 months 98 80

�

6 months 24 20Number of Symptoms

0 38 261–3 19 134–6 48 337–8 40 28


relation between symptom scores and qualityof life scores was significantly higher (

P

�

0.05) for caregivers than for patients.Figure 3 presents the prevalence of symp-

toms and quality of life outcomes (7 to 10) forthe 145 patients, during the first week after ad-mission. As shown in the figure, the five mostfrequently reported symptoms and quality-of-life items (7 to 10) were: tiredness (33%),

distress due to changes in self-care ability(29%), loss of appetite (21%), perception ofthe last few days as a burden (21%), and poorquality of life (19%).

Table 3 summarizes the means of symptomitems and quality of life items and the percent-ages of patients with severe outcomes for thefirst two weeks after admission to hospice (

n

�

63). Higher scores indicate that symptoms and

Fig. 2. Scree plots of patients and caregivers.

Table 2

Factor Loaadings of a Two-Factor Solution Using Principal Axis Factoring with Direct Oblimin Rotation Method

a

BHI Patient Survey BHI Caregiver Survey

Factor I Factor II Factor I Factor II

Symptom items Symptom itemsTiredness 0.88 0.04 Tiredness 0.81 0.18Distress due to changes in ability 0.76

�

0.08 Anxiety 0.73 0.06Anxiety 0.72

�

0.05 Depression 0.73 0.20Depression 0.70

�

0.07 Nausea 0.61

�

0.18Loss of appetite 0.66

�

0.03 Shortness of breath 0.57 0.13Shortness of breath 0.63 0.02 Loss of appetite 0.53 0.32Nausea 0.56 0.07 Distress due to changes in ability 0.51 0.43Pain 0.49

�

0.13 Pain 0.50 0.11Quality of life items Quality of life items

Feeling of not being cared for

�

0.16

�

0.89 Goal for the last week has not been met

�

0.08 0.81Dissatisfaction in his/her relationship

�

0.08

�

0.86 Dissatisfaction in his/her relationship 0.03 0.79Feeling of last few days as a burden 0.15

�

0.82 Hospice has been of no help

�

0.18 0.73Discomforts experienced 0.27

�

0.69 Feeling of not being cared for 0.14 0.73Goal for the last week has not been met 0.05

�

0.67 Feeling of last few days as a burden 0.23 0.71Hospice has been of no help 0.08

�

0.66 Quality of life is worst possible 0.31 0.65Quality of life is worst possible 0.33

�

0.57 Discomforts experienced 0.34 0.62Life has lost all its meaning 0.45

�

0.50 Life has lost all its meaning 0.31 0.61Symptoms out of control 0.36

�

0.49 Symptoms out of control 0.32 0.60

a

Factor 1 is the Symptom Factor; Factor II is the Quality-of-Life Factor.


quality-of-life outcomes are in the negative di-rection. During the first week after admission,approximately 67% of patients had at least onesevere symptom. However, during the secondweek after admission, only 49% of patients hadat least one severe symptom. This decrease inthe percentage of patients with at least one se-vere symptom from the first week to the sec-ond week was significant (

P

�

.01). However,the percentage of patients with at least onequality of life item that they rated as 7 orgreater remained stable from the first week tothe second week (38% vs. 38%).

It must be noted that there were no signifi-cant differences in the means of the overallsymptom score and the means of the overallquality of life score between the first two weeksafter admission to hospice. The only singleitem that was significantly different betweenthe first and second week after hospice admis-sion was the item “main goal for last week has

been met,” which was significantly higher atweek 2 (towards “has been not met at all”) thanthat at week 1 (3.0 vs. 1.7,

P

�

0.001), demon-strating a poorer outcome for this item.

Caregivers rated the item “feeling of beingcared for” during the first week after admissionmore negatively (

P

�

0.001) than the patientsdid. During the second week of admission, car-egivers also rated three other items, namely“tiredness”, “anxiety”, and “life has lost all itsmeaning”, more negatively (all

P

�

0.001)than the patients did.

Discussion

This study examines several key outcomevariables during discrete time intervals afteradmission to hospice using a 0–10 numericalscale tool, the BHI. As shown in this study, theBHI is a useful instrument for assessing a widerange of symptoms and quality of life outcomes

Fig. 3. Percentage of patients rating their symptoms and quality of life items 7 or greater during the first week afteradmission (n � 145).


among hospice patients. The coefficient alphasare high for patients and nurse caregivers,which indicates that the BHI is a reliable toolfor measuring patients’ symptoms, quality-of-life outcomes, and their caregivers’ percep-tions of the same. Although the BHI has beenshown to be reliable and have construct valid-ity, more work is needed to demonstrate itsconvergent and discriminant validity.

The BHI’s numerical ratings of symptom se-verity have a number of advantages.

30

This type ofrating system is easy for patients to understand.Also, the BHI can be used on a weekly basis andas a repeated measurement because most pa-tients can complete it in a few minutes. It guideshospice staff through a range of pertinent symp-toms and maintains their sensitivity to patient-centered care. Similarly, it helps to align the per-ceptions of caregivers with the patients whodepend on them for many of their needs. The BHIalso has the potential to be used in an interactivevoice response system for patients at home.

31

TheBHI is very similar to the McGill Quality of LifeQuestionnaire, which may produce similar re-sults and be equally effective for this purpose.

The results of this study indicate that, in thesecond week after hospice admission, fewer pa-tients had an overall symptom score in the severe

range (7–10). These decreases in the overallseverity of physical or psychological symptomsmay reflect several interventions by the inter-disciplinary care teams of the hospices. How-ever, approximately the same percentage of pa-tients have overall quality of life scores in thenegative direction (7–10 range) in the first andsecond week after hospice admission. This in-dicates that hospice care may lead to signifi-cant improvements in the overall severity ofpatients’ physical or psychological symptomsduring the first two weeks after admission,without associated improvements in patients’perceptions of their quality of life.

Not surprisingly, patients with a greaternumber of severe physical or psychologicalsymptoms tend to report worse quality of lifeand lower levels of satisfaction with hospicecare. Similarly, caregivers who perceive pa-tients as having more severe physical or psycho-logical symptoms rate these patients as havingworse quality of life and lower levels of satisfac-tion with hospice care. This association be-tween patients’ symptoms and their quality oflife and satisfaction with hospice care wasstronger for caregivers than for patients.

An important implication of the currentstudy is the necessity of helping patients, espe-

Table 3

Means of Outcomes and Percentages of Severe Outcomes During First Two Weeks After Admission

a

Mean (SD) % Severe Outcomes

1st Week 2nd Week 1st Week 2nd Week

SymptomsTiredness 4.9 (3.3) 4.7 (3.4) 37 37Loss of appetite 3.7 (3.5) 3.1 (3.0) 27 16Shortness of breath 3.4 (3.7) 3.2 (3.2) 25 20Pain 3.4 (3.2) 3.0 (3.0) 19 16Nausea 1.2 (2.3) 1.1 (1.9) 6 3Distress due to changes in ability 4.4 (3.4) 4.0 (3.6) 34 30Anxiety 2.9 (2.9) 2.2 (2.5) 12 5Depression 2.9 (2.9) 2.2 (2.5) 11 8Total 3.3 (2.1) 2.9 (2.1) 67

b

49

b

Quality of Life OutcomesSymptoms out of control 3.1 (3.1) 2.9 (2.8) 20 12Feelings of not being cared for 1.7 (2.7) 1.3 (2.3) 10 9Hospice has been of no help 1.4 (2.4) 0.8 (1.7) 3 2Quality of life is worst possible 3.9 (3.4) 3.2 (2.9) 27 17Feeling of last few days as a burden 3.4 (3.6) 2.8 (3.2) 30 20Life has lost all its meaning 3.4 (3.4) 2.4 (2.7) 20 9Discomforts experienced 3.2 (3.2) 3.4 (2.8) 18 15Dissatisfaction with relationships 1.8 (2.9) 1.3 (2.4) 10 7Goal for the last week has not been met 1.7 (2.5)

c

3.0 (3.7)

c

8 20Total 2.7 (2.4) 2.3 (2.0) 38 38

a

Each item is reated on a 0–10 scale. Higher scores reflect worse symptoms and poorer quality-of-life outcomes.

b

Percentage of patients with at least one severe physical symptom at week 2 is significantly lower than at week 1,

P

�

0.01.

c

Mean of this item is significantly higher for week 2 than at week 1,

P

� 0.001.


cially patients with severe symptoms, to realisti-cally identify, redefine, and meet short-termgoals in order to prevent disappointment atnot having their expectations met. Cohen etal.32 pointed out that quality of life may be im-proved by changing the individual’s percep-tion of his/her present experience and bychanging hopes and expectations. This may beone way to positively influence patients’ qualityof life in spite of advanced disease, without anydisease-modifying interventions. Controlledstudies are now needed to test this hypothesis.

The reporting of problems encountered bydying patients varies greatly by setting, defini-tion of what constitutes core problems, diseasetype, and disease stage.32–35 For the purposes ofrecognizing and managing problems in a givenpopulation, identification of severe symptomsis useful. For instance, fatigue is now known tobe a common problem, however the propor-tion of patients reporting fatigue as the mostprevalent severe outcome remained the sametwo weeks after admission in this hospice sur-vey. Approximately 69% of the 145 patients ex-perienced fatigue during the first week afteradmission, and 33% of them had severe fatigue(Figure 3). Therefore, fatigue is a prevalentsymptom and difficult to relieve comparedwith most others. This difficulty may be due tothe limited alternatives available to effectivelytreat fatigue. This type of finding helps to illu-minate areas for much-needed palliative careresearch.

There are some important limitations to thisstudy. First, the data gathered were highly de-pendent upon the convenience sample of pa-tients who agreed and were able to participate.It is possible that the patients who were incapa-ble, unwilling to participate in the survey, orwho dropped out of the survey were differentfrom those who agreed to participate or re-mained in the survey. It is likely that the pa-tients who were not included or withdrew fromthe study were more ill than the patients whocompleted the study. Consequently, the symp-tom severity and negative quality of life out-comes might be underestimated in this studydue to this selection bias. Also, this sample pri-marily consists of older Caucasians. These sam-ple characteristics limit generalizability of thisinstrument among younger populations, mi-nority populations, or HIV/AIDS populations.However, the fact that hospice admissions do

not reflect the actual demographics of mostcommunities makes validation studies acrossall hospice-eligible populations very difficult.36

Also, the discrepancy between ratings of care-givers and patients could be biased by the factthat some of the nurses may have seen morepatients than others. Another difficulty in theinterpretation of the results is due to the smallsample size, since the patient is paired with thecaregiver for the first three weeks after admis-sion. Finally, the classification of ratings of 7 orgreater as severe is preliminary, especially forthe quality-of-life items. This provisional classi-fication needs to be substantiated in future re-search. Conclusions should be considered withthese limitations in mind.

Notwithstanding these limitations, this studyintroduced a brief tool to measure symptom se-verity and quality of life outcomes in a hospicesetting. The BHI provides the diversity andbreadth of measures needed to evaluate the ef-fectiveness of hospice care in addressing thewhole range of issues encountered by patientswith life-limiting conditions. The prospectivedesign of this study gives accurate baseline infor-mation for benchmarking symptoms for healthprofessionals who care for terminally ill pa-tients. The value of a particular program or typeof care setting as compared to another cannotbe determined without these types of data.

This study demonstrates that simple ratingscales of symptom and quality of life issues,such as the BHI, represent useful methods forassessing the full range of pertinent outcomemeasures affecting hospice patients and theirprofessional caregivers. The elucidation ofprevalence and severity changes of these mea-sures over discrete time intervals after admis-sion provides the necessary information forquality assurance and improvement programs.Similarly, a valid and simple means to disclosedisparity and bring concordance to patients’and caregivers’ perceptions should improvepatient care.

AcknowledgmentsThis research was supported in part by grant

CA-26582 from the National Cancer Institute,Public Health Service, and SIG Grant #21 fromthe American Cancer Society. The authorsgratefully acknowledge the invaluable help ofthe VistaCare Hospice nurses who contributed


to the implementation of this study, especiallySarah Bird and Carma Mark. VistaCare dataanalysts, Sue Cotton and Mike Stargel, pro-vided unwavering persistence in their efforts tosee this project through to completion.

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A Preliminary Study of the Utility of the Brief Hospice Inventory

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