JOURNAL OF PALLIATIVE MEDICINEVolume 5, Number 5, 2002© Mary Ann Liebert, Inc.

Hospice Experience and Perceptions in Nursing Homes

DEBRA PARKER-OLIVER, M.S.W., Ph.D.

ABSTRACT

The purpose of this study was to describe the experiences and perceptions of hospice nursescaring for residents in long-term care facilities. The study used a fax-back survey to gatherdata from 69 hospice nursing and nurse managers in 24 hospices across one Midwestern state.Respondents reported negative experiences with pain management and care coordination inthe nursing home setting. Although hospice is thought to be a benefit to residents, hospicestaff report frustration in caring for nursing home patients, especially in trying to controlpain. The study identifies opportunities for improvement in hospice and nursing home staffrelationships.

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INTRODUCTION

AMERICANS WANT TO DIE AT HOME, surroundedby family and friends, pain-free, comfort-

able, and in control of their dying experience.1

The reality of the situation is, however, quite con-trary. After World War II, with the advancementof medicine as a science, death became institu-tionalized, and hospitals became the most com-mon place to die. While the number of individu-als dying in hospitals is decreasing, there hasbeen an increase in the number of patients dyingin nursing homes. Brown University reports thatin 1997, 25% of Americans died at home, and 24%died in nursing homes, 28% died in nursinghomes in this Midwestern state. Brown Univer-sity estimates that by the year 2020, 40% of deathswill occur in the nursing home setting.2

In spite of serving as the setting for so manydeaths, nursing homes are not prepared to carefor the dying.3 Policy and regulation have em-phasized rehabilitative and restorative carewith the goal of improving or maintaining thefunctioning of residents. Because of public con-cerns regarding quality of care as well as con-

cerns about neglect, nursing homes have beenforced to follow regulations, reinforcing the no-tion that residents can be restored to their pre-existing condition.3 For many, however, thistype of care is inappropriate. The philosophyand goals of rehabilitation are often in directconflict with the needs of dying people, result-ing in poor end-of-life care. Research has shownthat the dying suffer with mismanaged pain,poor symptom control, and limited spiritualand emotional support.4–6 As in other healthcare institutions, bereavement counseling israre and the continuing needs of families are ig-nored.7

Hospice provides medical care and support toterminally ill patients and is designed to help peo-ple die comfortably. Patients and families are as-sisted in a transition from high-tech medical care,focused on cure, to a home-like environment fo-cused on comfort.8 Hospice programs bring ex-perience and expertise with dying into nursinghome settings, thus enhancing the quality of care.This is accomplished with interdisciplinary teamscomprising physicians, nurses, social workers,chaplains, aides, and volunteers by delivering

University of Missouri, School of Social Work, Columbia, Missouri.

medical services, coordinating, and monitoringdying trajectories.9

Rules for the Medicare hospice benefit wereclarified in 1989 to include residents in long-termcare institutions.10 Utilization of hospice servicesby nursing home residents, however, is low. Inthe spring of 1998, the National Hospice Organi-zation published a report showing that less than5% of those who die in nursing homes do so withthe care of hospices.9 Despite national statisticsshowing 1 in 3 people admitted to a nursing homedies within a year, nursing homes are neitheridentifying or responding to the special needs ofthose who are dying.11 This project was initiatedto describe the experiences and perceptions ofhospice nurses caring for dying patients in long-term care facilities. They are in a unique positionto describe the nursing home setting as a place todie.

METHODS

The study involved collaboration between aUniversity School of Social Work and a state Hos-pice and Palliative Care Association (HPCA). TheUniversity Institutional Review Board approvedthe project. Based on hospice experience and pre-vious research in this area, the author developeda survey tool that was evaluated with minor re-visions by two hospice nurses and the executivedirector of the HPCA. During the summer of

2001, the association faxed, on three occasions,the survey to its members. Completed surveyswere returned to the state association and iden-tifying information was eliminated and formscoded to protect confidentiality. Surveys werefaxed to all licensed hospices in the state. All par-ticipating hospice providers were entered in adrawing for a $100 training certificate.

The Statistical Package for the Social Sciences(SPSS) was utilized in the analysis of the struc-tured questions. Missing data elements were re-coded using the series mean.12 Ordinal variableswere analyzed for normality using histograms,skewness and kurtosis statistics.12 Data were an-alyzed by the reported position of the respondent(registered nurse, supervisor, or manager) and byurban and rural location of the hospice program.

Open-ended questions were coded, catego-rized, and tabulated for comparison with thestructured questions and clarification of the sta-tistical findings. Open-ended questions asked re-spondents to identify the benefits of hospice fornursing home residents and the top three chal-lenges in working with nursing homes.

RESULTS

Surveys were returned by 69 individuals rep-resenting 24 different hospice programs, 33% ofthose licensed in the state. The locations of thehospices varied with 18.8% reporting their pri-

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TABLE 1. DESCRIPTIVE STATISTICS FOR AGENCY AND STAFF RESPONDING TO SURVEY (n 5 69)

Variable Mean Range Standard deviation %

Location of hospicePrimarily urban hospice 18.8Primarily rural hospice 34.8Both urban and rural hospice 46.4

Position within hospiceRegistered nurse 65.2Patient care supervisor 15.9Program manager 17.4Unknown 1.5

Number of nursing homes with 14.2 1–100 14.4hospice patients today

Number of agency nursing home 32.9 1–203 30.3contracts

Number of nursing home patients in 6.2 1–320 6.9personal caseload

Number of nursing home patients in 20.0 1–600 16.2the agency

Years of experience as a hospice 5.4 0–200 4.7nurse

mary service area as urban; 34.8% as rural; and46.4% as serving both urban and rural popula-tions. Hospice staff nurses represented 65% of thesample; patient care supervisors, 16%; and pro-gram managers, 17%. Results were not statisti-cally different between groups so they are re-ported collectively. Respondents had an averageof 5.4 years of hospice experience. Caseloads av-eraged 6 nursing home residents per respondent.The descriptive statistics for the sample are illus-trated in Table 1.

Hospice staff were asked to rank their experi-ence with nursing home providers on a five-pointLikert scale, with 1 designating the best possibleexperience and 5 the worst possible experience.Rankings were summarized, showing medians,

means and percentages for each variable (Table2). As shown in Table 2, the medians reveal aslightly more negative perception than does themean, however as reported in the methods sec-tion, skewness and kurtosis analysis reveals thatdata were normally distributed within appropri-ate limits.12

Questions dealing with pain management re-ceived the most negative ranking. The medianscore for nursing home staff assessment of pain,use of as-needed medication for pain, and knowl-edge of pain management was 4. On each painvariable half or more of the respondents rankedthe item at 4 or 5, with no respondent ranking theitems as 1, the best possible experience.

More than one third of hospice staff reported

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TABLE 2. MEANS AND PERCENTAGES ON QUESTIONS REGARDING PERSONAL EXPERIENCE

WITH NURSING HOME PROVIDERS BY HOSPICE NURSES (n 5 69)

StandardVariable Median Mean deviation 1 2 3 4 5

Nursing home practice of the hospice philosophy 3.0 3.1 0.70 0 15.9 59.4 21.7 2.9

Nursing home staff assessment of pain in patients 4 3.6 0.76 0 5.8 34.8 47.8 11.6

Nursing home staff adherence to hospice care plan 3 3.1 0.77 0 17.4 52.2 36.1 4.3

Nursing home staff use of as-needed medication 4 3.7 0.92 0 11.6 20.3 46.4 21.7for pain

Nursing home staff knowledge of pain 4 3.4 0.88 0 14.5 33.3 40.6 11.6management

Nursing home stafff adherence to hospice 3 3.0 0.85 2.9 20.3 44.9 29.0 2.9medication ordering policies

Nursing home staff adherence to hospice care 3 2.8 0.97 1.4 21.7 56.5 18.8 1.4plan as it pertains to feeding, dietary and intake

Nursing home staff contact of hospice with 3 3.0 0.72 4.3 26.1 46.4 18.8 4.3changes in condition or problems with patients

Nursing home staff understanding of hospice 4 3.4 0.98 1.4 18.8 27.5 40.6 11.6regulations

Nursing home staff appropriate use of OT, ST, 3 3.1 1.1 5.8 23.2 37.7 21.7 1.4PT with hospice patients

Coordination efforts by nursing home staff on 3 2.9 0.84 4.3 24.6 47.8 21.7 1.4hospice patients

Benefit of hospice to a nursing home resident 1 2.0 1.4 56.5 20.3 5.8 2.9 14.5

Nursing homes ability to identify hospice patients 3 3.2 0.87 5.8 10.1 47.8 33.3 2.9

Nursing home quality of care for your patients 3 2.9 0.59 0 21.7 65.2 13.0 0

OT, occupational therapy; ST, speech therapy; PT, physical therapy.

% best to worst possible experience

negative experiences with care planning. Re-spondents reported a reluctance by nursing homestaff to adhere to hospice care plans as more than40% ranked the item a 4 or 5 and once again therewere no rankings of 1. Communication and co-ordination questions had a more balanced rank-ing between positive and negative experiences.

Hospice staff reported negative experienceswith nursing homes identifying residents to re-ceive hospice care. Thirty-six percent rated theirexperience a 4 or 5 and only 15.9% a 1 or 2. Theyalso rated nursing home staff understanding ofhospice regulations as negative with more thanhalf rating the item as a 4 or 5. The most positiveresponse came when asked if hospice was of ben-efit to nursing home residents: 76.8% recorded a1 or 2 and 17.4% a 4 or 5.

Hospice staff were then asked to evaluate nurs-ing home staff perceptions about hospice. Resultswere summarized using the percentage of re-spondents indicating that the statement was true(Table 3). Hospice staff felt that nursing homestaff valued their pain management skills (60%),the benefits of hospice payment for medications(58%), and hospice assistance (47.8%). Negativeperceptions included the belief that nursing homestaff felt hospice told them what to do (69.6%),put everyone on morphine (53.6%), and just letresidents die (52.2%).

Respondents were asked to rate the level ofwork required with nursing home patients incomparison to traditional home-based hospicepatients. Forty-two percent of those respondingsaid that the nursing home patient required morework, 47.8% said about the same amount of work,and 8.7% reported that the nursing home patientwas less work than the traditional patient.

Results of the two narrative questions sup-ported the structured questions. Categories andfrequency of the responses are summarized(Table 4). Pain management issues, communica-tion, care coordination, and a lack of knowledgeabout hospice were the most frequent responsetypes. Benefits of hospice for residents includedpain management, patient and family supportand education, psychosocial support, and com-passion. Some quotations and examples are pre-sented in the discussion as clarification for thefindings.

DISCUSSION

The findings indicate negative experiences byhospice nurses, supervisors, and managers re-garding pain management, coordination, careplanning and differences in perception of philos-ophy of care between hospice and the nursinghome setting. These negative experiences werefound in the structured questions and supportedin the narrative responses. Hospice staff believethat hospice is of benefit to residents and theyperceived that the nursing home staff valuedtheir assistance with residents and were consid-ered experts in pain management.

Pain

Studies have consistently found that pain is notwell managed in nursing facilities.5 It was re-cently reported that 41.2% of nursing home resi-dents with pain cited on their first assessment,were still reporting moderate daily or excruciat-ing pain on their second assessment 60 to 180

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TABLE 3. PERCENTAGES OF ITEMS BELIEVED BY HOSPICE NURSES TO BE COMMON PERCEPTIONS OF NURSING HOME STAFF

% of hospice nursesPerception of nursing home staff experiencing

The hospice staff comes and tell us what to do, yet we are here 24 hours a day. 69.6Hospice staff are experts regarding pain and symptom management. 60.9Hospice is good for residents because they pay for so many medications. 58.0Hospice puts everyone on morphine. 53.6Hospice just let residents die. 52.2We are glad to have hospice staff in our facility assisting us with dying residents. 47.8Hospice should provide residents with more things than they do. 42.0Hospice visits residents appropriately. 37.7Hospice should provide more personal care for residents. 33.3Hospice encourages families to stop tube feedings. 33.3Hospice takes residents off all scheduled medications. 23.2Hospice staff do not visit residents as much as they need to. 15.9

days later.13 As with hospice services provided inthe home, pain management is a primary hospicefunction in a nursing facility. Hospice care makesa difference in the quality of pain management innursing home residents as indicated in a recentstudy that found hospice patients in a nursing fa-cility with daily pain, had a 93% greater likeli-hood of having attempts made to manage theirpain, and were twice as likely to receive strongpain relievers than other nursing home resi-dents.14

Respondents indicated that they believed nurs-ing home staff had inadequate pain assessmentand management skills. The use of as-neededmedication for breakthrough pain had the mostnegative mean rating of 3.7. More than two thirdsof the respondents (68%) reported a negative ex-perience, giving it a 4 or 5 rating. Mean ratingsgiven for pain assessment skills (3.6) and generalpain management knowledge (3.4) also indicatednegative experiences. Pain assessment skill wasrated as a 4 or 5 (low) by 59% of respondents, and52% reported negative experiences regardinggeneral pain management knowledge. No re-spondent gave that category the highest rating.In line with the trend, 53% of hospice staff notedthat they felt nursing home staff’s perception wasthat hospices simply put everyone on morphine(Table 3).

Problems with pain management also surfacedin response to open-ended questions. Many com-

ments reflected frustration with nursing homestaff resistant to consider pain as important.When asked to identify their frustrations, nearlyall of the respondents mentioned pain manage-ment and the use of as-needed medication asproblems (52 responses). One nurse respondedthat her biggest frustration with nursing homestaff was their unwillingness to work with hos-pice staff, “afraid of giving pain medication andnot willing to give PRN [as-needed] pain meds ifpatient is not able to verbalize needs.”

Coordination and care planning

The Nursing Home Task Force of the NationalHospice Organization developed a set of guide-lines for hospice care in nursing homes in 1998.These guidelines identified the importance ofcommunication and coordinated care planningbetween the two providers. The study indicatesthat some hospice programs are struggling withthese issues.9 More than 40% of hospice staff re-ported negative experiences in nursing home ad-herence to hospice plans of care, and more specif-ically, one third had negative experiences withnursing homes after hospice medication orderingpolicies. The high turnover in nursing home staffwas a frustration cited by several respondents asa reason that coordination and communicationwas difficult. One respondent wrote, “The nurs-ing home staff frequently turns over. In many fa-

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TABLE 4. CATEGORIES OF RESPONSES TO OPEN-ENDED QUESTIONS FROM SIXTY-NINE SURVEYS

Question and response Number of times response was made

What are the benefits of hospice to a nursing home resident?

Pain management, assessment 52Patient and family support and education 45Psychosocial support 27Compassionate care 27Improved communication with family or physician 8Companionship 7Medications, DME, or volunteers 7

What are the three biggest problems working with hospicepatients in the nursing home?

Proper use of as-needed medication 32Getting effective pain management ordered 7Communication and miscommunication 27Nursing home staff turnover 13Lack of knowledge by nursing home about hospice 9Staff shifting from rehab to palliative care 4

DME, durable medical equipment.

cilities you do not see the same nurse (LPN orRN) twice.” Coordination of care and communi-cation regarding patient change in condition hadmore balanced rankings as nearly one third re-ported positive and nearly one quarter negativeexperiences.

Hospice and nursing home philosophy

One of the challenges faced by hospices innursing homes involves cultural and philosoph-ical differences between the two organizations.Hospice staff care for fewer numbers of patients,all of whom face the same eventual outcome:death. Nursing home staff care for greater num-bers of patients at a time, some of whom are dy-ing, some of whom will improve and returnhome, and some for whom they will providecare for many years. Each provider must com-ply with different regulations, different reim-burse-ment systems, and in many ways differ-ent “languages.”9 Keay and Schonwetter3 notesthat the hospice movement evolved from aproactive attempt by communities to improvecare leading to more autonomy in practice ascompared to long- term care, which has a highlyregulated practice. These differences are notice-able in the survey results. Nearly one quarter ofthe respondents replied they had a negative ex-perience with the nursing home practice of “thehospice philosophy,” rating it 4 or 5, while 16%rated it as a 2, and no respondents rating it thebest possible experience. One respondent re-ported frustration with nursing home staff whorefused to allow patients to stay in bed duringmeals, to receive morphine, to refuse to eat, orto accept the fact they were dying. Differencesin philosophy was illustrated as “ . . . a fear toaccept, allow and support decline, dying, like itis bad as opposed to an inevitable time of lifewe must all meet.”

More than half of the hospice respondents in-dicated that the nursing home staff did not havean understanding of hospice regulations. Thisfinding is consistent with a recent study by thisauthor of nursing home directors of nursing(DONs) that found that 62% did not understandhospice regulations and did not know how tocontact the survey agency in case they had a prob-lem with a hospice.15 Hospice nurses (15.9%) per-ceived that nursing homes did not feel they vis-ited enough, this also is consistent with theauthors’ previous study that found that nearly

one fourth of the DONs stated that hospice didnot visit as frequently as they should.15

Benefits of hospice

As expected, more than two thirds of the hos-pice respondents (76.8%) noted that they felt hos-pice was a benefit to nursing home residents.Nearly every survey (92%) contained narrativecomments regarding pain management andsymptom control as a benefit to residents. Thiswas also supported when 47.8% of the respon-dents believed that nursing home staff were gladto have hospice assist in the care of residents. Inaddition to pain management, psychosocial sup-port and spiritual counseling were cited as bene-fits. This is consistent with the writings of Keay,16

who notes that spiritual and emotional supportsare absent for nursing home residents outside ofhospice, and hospice is the only provider to bereimbursed for spiritual care.11

IMPLICATIONS

These findings support the need for increasedresearch and improvement in the provision ofhospice care in nursing home settings. MoreAmericans are dying in nursing homes, yet thefocus remains on restorative and rehabilitativecare. Policymakers must recognize that while im-proving or maintaining function is important,equal attention should be given to palliate thesymptoms of those who will not improve.11 Therecent acknowledgment by the Centers ofMedicare and Medicaid Services (CMS) of a needfor palliative care data in the minimum data sets(MDS) and a new resident assessment protocol(RAP) on pain may signal a beginning.

This study is consistent with others in pointingto the need to address pain management in thenursing home setting.4,5,11 It also presents a chal-lenge to hospice programs to continue to educatenursing home staff in an effort to improve end-of-life care for all residents. This effort is gainingmomentum in Colorado and California as bothhave taken on initiatives to develop palliativecare training in the long term care setting.17

Another important implication of this study isthat hospices and nursing homes must collabo-rate. Other studies have also shown that nursinghome staff lack information about and an under-standing of hospice.15 This study identifies op-

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portunities for hospices and nursing homes to im-prove communication as well as improve painmanagement practices. Opportunities and chal-lenges exist for both providers, and collaborationwould significantly improve end-of-life care inthe nursing home setting. Team building activi-ties and enhanced training for both providers isindicated.

While hospice and nursing home staff believehospice is a benefit for residents,15 there is a sig-nificant reluctance to label patients as dying andrefer them to hospice. Nursing home staff needassistance in identifying dying residents in theirfacilities and help in developing standards forand knowledge of palliative care. Regulators canoffer support by holding homes accountable forterminal care just as they do for restorative care.Nursing homes are expected to refer patients tophysical therapists after rehabilitative surgery, sowhy not refer them to hospice for terminal care?Patients and families deserve a choice for pallia-tion in the same way that they have a choice forrehabilitation. Should CMS and survey agenciesrequire palliative care as an option, homes wouldno longer hesitate to provide it.

The demographic data from this study point toan interesting access issue. Why did hospiceshave an average of nearly 33 different nursinghome contracts and only 14.2 nursing home pa-tients? This information, combined with the Na-tional Hospice Organization statistics that only5% of the nations nursing home residents receivehospice and one third of nursing home residentsdie within 1 year of admission9 imply that thereare many dying persons in nursing homes not re-ceiving hospice care. Studies have identified thebeneficial outcomes of hospice for nursing homeresidents,14 nursing home directors of nursinghave stated that hospice is beneficial for resi-dents,15 and this study found that hospices feel itis a benefit. The question remaining is why is itnot accessed more frequently? What are the bar-riers to access to hospice for nursing home resi-dents? While some obstacles are identified in theliterature,3 this continues to be an issue for fur-ther research as the question is yet to be an-swered.

This study is limited to the experience of hos-pice nurses in one state. It does not represent theexperiences of hospice staff in all types of nurs-ing home environments. Data reflect the percep-tions of hospice providers about nursing homestaff and does not reflect the experiences from the

perspective of nursing home staff themselves.Further research is required before these resultscan be generalized.

These data support the some of the challengesidentified by the National Hospice OrganizationTask Force Report.9 These include the challengeto clarify the role and value of hospice in nurs-ing homes, to continue to research the issues ofaccess and utilization of hospice by nursing homeresidents, continued education of both providersregarding the regulations and standards of carefor one another, and the need for regulatory sup-port for palliative medicine.

Until nursing homes, and the regulators con-nected with them, admit that resident popula-tions have conflicting needs, and begin to iden-tify residents who are dying and faced with thisconflict, change will be slow. Individuals and or-ganizations involved in long-term care mustcome to understand that nursing home residentsplay not only a “sick role,” but also a “dyingrole.” The rights and obligations for them arevery different and confusing, and hospice pro-vides an important service to assist those in the“dying role.”8 Hospice specializes in this care inthe same way a physiatrist specializes in rehabil-itation. This study points to the numerous op-portunities and challenges that hospices andnursing homes have in improving their relation-ship and collaborative practice to provide asmooth transition from “sick” to “dying” and amore humane end to lifelong dramas.

ACKNOWLEDGMENTS

This study was made possible through fund-ing from the University of Missouri Alumni As-sociation Faculty Incentive Grant program.

REFERENCES

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4. Ferrell B: Pain evaluation and management in thenursing home. Ann Intern Med 1995;123:681–687.

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5. Bernabei R, Gambassi G, Lapane K, Landi F, Gatso-nis C, Dunlop R, Lipsitz L, Steel K, Mor V: Manage-ment of pain in elderly patients with cancer. JAMA1998;279:1877–1882.

6. Steinmetz D, Walsh M, Gabel LL, Williams PT: Fam-ily physicians’ involvement with dying patients andtheir families. Attitudes, difficulties, and strategies.Arch Family Med 1993;2:753–760.

7. Murphy K, Hanrahan P, Luchins D: A survey of griefand bereavement in nursing homes:the importance ofhospice grief and bereavement for the end stageAlzheimer’s disease patient and family. J Am GeriatrSoc 1997;45:1104–1107.

8. Oliver DP: The social construction of a dying role: Thehospice drama. Omega 2000;40:19–38.

9. National Hospice Organization: Nursing Home TaskForce Report. Report No.: 714638, 1998.

10. Zerzan J, Stearns S, Hanson L: Access to palliative careand hospice in the nursing home. JAMA 2000;284:2489–2494.

11. Lewis L: Toward a good death in the nursing home:Pain management and hospice are key. Caring for theAges July 2001; (www.amda.com/caring/july2001/gooddeath.htm)

12. Tabachnick BG, Fidell LS: Using Multivariate Statistics.New York: Harper Collins College Publishers, 1996.

13. Teno JM, Weitzen S, Wetle T, Mor V: Persistent painin nursing home residents. JAMA 2001;285:2081.

14. Miller S, Gozalo P, Mor V: Outcomes for Hospice andNon-Hospice Nursing Facility Residents. Center forGerontology and Health Care Research, Brown Uni-versity. 2000. (aspe.hha.gov/daltep/reports/oututil.htm)

15. Oliver DP, Bickel D: Nursing home experience withhospice. JAMDA 2002;3:46–51.

16. Keay TJ: Palliative care in the nursing home. Gener-ations 1999;23:96–98.

17. Colorado Department of Public Health and Environ-ment: Hospice in the nursing home work group, theLong Term Care Advisory Committee. Hospice in aSkilled Nursing Facility—A Model for Success. 1999.(http://cmda.gen.co.us/Articles/NHhospice.htm)

Address reprint requests to:Debra Parker-Oliver, M.S.W., Ph.D.

University of MissouriSchool of Social Work

719 Clark HallColumbia, MO 65211

E-mail: oliverdr@missouri.edu

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