ORIGINAL STUDIES

Nursing Home Experience with HospiceDebra Parker-Oliver, MSW, PhD, and Denise Bickel, MSW

Objective: Much has been written regarding the prob-lems of terminally ill people residing in nursing homes.Hospice care is one option these facilities have to assistin managing dying patients. The purpose of the studywas to explore the knowledge base, experience, andattitudes of nursing home management with and to-ward hospice care.

Design: A descriptive study that involved phone inter-views of a systematic random sample of managementpersonnel in nursing homes to explore their experi-ences with hospice care.

Setting: Nursing homes.

Participants: 60 administrators and directors of nurs-ing (DON) from 42 nursing homes in Missouri.

Measurements: Measurements included overall expe-rience with hospice, the benefit of hospice to resi-dents, specific experiences with hospice service,knowledge of hospice regulation and reimbursement,and perception of pain assessment skills.

Results: Results show that management personnel be-lieve that hospice was positive and valuable for resi-

dents. Concerns included the frequency and availabil-ity of hospice services for nursing home residents,especially in rural areas. Nursing home managementclaimed that hospice was knowledgeable in pain man-agement, yet when measured, pain managementskills ranked 2.1 on a scale of 1 to 5 (1 being the best).Community and physician understanding of hospicewas identified as a major barrier for residents.

Conclusions: While the results indicate a positive over-all experience, a number of shortcomings are identi-fied. The study points to opportunities for improve-ment in hospice/nursing home relationships. It alsoidentifies opportunities for hospices and nursinghomes to educate their medical directors in an effortto obtain active participation in the identification ofpatients for palliative care. In addition, the need formedical directors to assist in the education of nursinghome staff regarding hospice services and benefits isindicated. Specifically, medical directors can educatenursing home staff on care plan responsibilities withhospice patients and other regulatory issues. (J AmMed Dir Assoc 2002; 3: 46–50)

Keywords: Nursing home, hospice, palliative care

Nursing homes are becoming the place to die for an in-creasing number of Americans. Brown University recentlyreported that nearly 24 percent of Americans are dying inthese settings.1 It has also been found that approximatelyone-third of nursing home residents die within 12 months ofadmission.2 Some researchers estimate that by the year 2020,40 percent of deaths will occur in nursing homes.3 Despitethis, the philosophy, policies, and regulations in nursinghomes are targeted toward rehabilitative and restorative care,with a goal of improving or maintaining the functioning ofresidents. This philosophy is often in direct conflict with theneeds of dying people, and often results in poor end-of-life

care. Research has shown that deaths often occur with mis-managed pain and symptom control, and that spiritual andemotional supports are absent.4

Hospice provides medical care and support to terminally illpatients and is designed to help people who are dying remaincomfortable. Patients and family members are assisted intransition from a high-tech medical environment focused oncure, to a home-like environment focused on comfort.5 Un-like the United Kingdom, where hospice is a “place to die,”American hospice is a service brought to the person, whereverthey live, so they may die at “home.” Hospice programs bringexperience and expertise into nursing home settings, enhanc-ing the quality of care for residents. This is accomplished withinterdisciplinary teams composed of hospice physicians, fam-ily physicians, nurses, social workers, chaplains, aides, andvolunteers coordinating and monitoring the dyingtrajectories.

Rules for the Medicare hospice benefit were clarified in

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

Debra Parker-Oliver, MSW, PhD, University of Missouri, School of Social Work,719 Clark Hall, Columbia, MO 65211.

Copyright ©2002 American Medical Directors Association

46 Parker-Oliver and Bickel JAMDA – March/April 2002

1989 to include residents in long-term care institutions.6

Utilization of hospice services by nursing home residents,however, is low. In the spring of 1998, the National HospiceOrganization published a report showing that less than 5percent of those who die in nursing homes do so with the careof hospice, whereas 18 percent of the general population dieas hospice patients.2 Other research has shown as few as 1percent of nursing home residents are enrolled in hospice.6

Low utilization continues to be a concern for professionalsdedicated to improving end-of-life care.

A rich body of knowledge exists about end-of-life care innursing home settings. Studies have consistently found thatpain is not well managed, that symptoms are not treatedappropriately, and that emotional and spiritual problems areignored.7 Bereavement care is not part of standard nursinghome care, and the needs of surviving family members oftengo un-addressed.8 Current public policy creates a barrier tothe provision of adequate palliative medicine. Quality stan-dards and reimbursement rules promote restorative care ratherthan labor-intensive palliative medicine.6

In 1997, Bent Jones, Larry Nackerud, and David Boyleinvestigated variation in utilization patterns of hospice in thenursing home. Attempting to identify concerns for referraland utilization, they studied 23 nursing homes using a 10-question survey for administrators. Critical concerns included:(1) the perception of nursing home staff that they did a goodjob dealing with terminal patients and thus did not needhospice; (2) a lack of understanding about procedural prob-lems involved in hospice care; (3) uneasiness that hospice wassimilar to euthanasia; and (4) concerns regarding the financialimplications of enrolling a Medicare patient into hospice.9

The objective of the study was to understand issues regard-ing hospice from the perspective of nursing home providers.The goal was to assess knowledge and experience of nursinghomes with hospice, comparing some of the issues raised inprevious research and the current experience of Missourinursing home providers. The research questions for theproject were: (1) What do administrators and the directors ofnursing (DON) within nursing homes know about hospice?and (2) What are the experiences of nursing homes in Mis-souri with hospice?

METHODS

A systematic random sample of 60 nursing homes wasdrawn from the 1998 Nursing Home Profile published by theState of Missouri Division of Aging. A letter was mailed tothe nursing homes informing them of the study and requestingparticipation. Each was contacted by phone, with a goal ofinterviewing both the administrator and the DON. A semi-structured interview tool was developed. The phone inter-views were conducted by one trained research assistant, aformer hospice volunteer, in the fall of 2000. The interviewtool is provided in Figure 1.

RESULTS

Forty-two different nursing facilities participated, a 70-percent response rate. Both the administrator and the DONwere interviewed in 18 facilities. The resulting sample repre-

sented 28 administrators and 32 DONs. As defined by met-ropolitan statistical areas, the sample was nearly evenly splitbetween urban (45 percent) and rural (55 percent). Theaverage number of years administrators had been licensed was11.2, and they had been employed by their current facility anaverage of 6.9 years. DONs had been licensed nurses for anaverage of 11.4 years and employed in the current nursinghome for an average of 4.4 years (Table 1).

Of the 42 facilities contacted, 81 percent reported contractswith at least one hospice provider. Of the homes withoutcontracts, half responding could not give a reason why one didnot exist. Two individuals stated that patients should beallowed to choose the provider, and thus they contracted forhospice on a patient-by-patient basis. Both the DON and theadministrator of one home stated they did not feel there wasa need for hospice in their facility. One administrator statedthat his corporate management had told him no to hospicebecause of a fear that the facility would “get into trouble atsurvey time.”

Survey participants were asked to rate their overall expe-rience with hospice on a scale of 1 to 5, 1 representing thebest possible experience, and 5 being the worst. The averagerating by all respondents was 2.1. There were no significantdifferences between the experiences of administrators andDONs. When asked to rate (using the same scale) the benefitof hospice to their residents, the average score was 1.9. Again,there were no significant differences in perception betweenthe two groups. There was a statistically significant difference,however, in the perception of urban and rural providers.Urban nursing homes rated the overall benefit of hospicesignificantly higher than rural nursing homes. The averagerating of urban providers was 1.5, compared to 2.3 for ruralproviders.

When asked why they rated the benefit of hospice as theydid, 66 percent of the respondents identified a positive aspectof hospice service, including grief counseling, individual at-tention, or pain management skills. Concerns were expressedby 28 percent of the respondents. Comments included per-ceived differences in the quality of care among hospice pro-viders (10 percent), a perception that hospice does not pro-vide enough benefit for residents (10 percent), and a lack ofresponse by hospice when needed (5 percent).

Three questions were asked to determine satisfaction andfrequency of hospice visits. In each case, approximately onequarter of the respondents did not feel hospice was visiting asoften as necessary. DONs, as compared to administrators,reported less satisfaction with the regularity of visits, thefrequency of visits, and the availability of staff when called.

In assessing nursing home understanding of Medicare andsurvey regulations, questions were asked about care plan co-ordination and care plan authority. As required by regulation,86 percent of the respondents stated that care plans werebeing coordinated with hospice nurses. There were less con-sensus, however, when respondents were asked who was ulti-mately responsible for the care plan related to the terminalillness. Although Medicare designates hospice as responsi-ble,10 40 percent felt the nursing home was ultimately incharge of the hospice patient’s plan of care. Specifically, 36

ORIGINAL STUDIES Parker-Oliver and Bickel 47

percent cited both nursing home and hospice as responsible,18 percent identified hospice, and 6 percent stated they didnot know who held the ultimate responsibility.

Questions were asked regarding knowledge of hospice re-imbursement, survey agencies, and hospice utilization. Only38 percent said they understood how hospice was reimbursed.There was a statistically significant difference between admin-istrators and DONs, as 56 percent of administrators knew andonly 20 percent of DONs reported knowing how hospice wasreimbursed. The majority of respondents did not know thatthe department of health was the survey agency responsiblefor hospice; 84 percent responded that they did not know.There were no DONs who correctly identified the hospicesurvey agency.

When asked to subjectively evaluate the ability of nursinghome staff to assess pain, DONs and administrators indicatedconfidence in their abilities. Although not an objective eval-uation, on a scale of 1 to 5, 1 being the best, the average ratinggiven to staff ability to assess pain was 2.1. Only 3 percent ofthe respondents rated staff pain assessment skills below 3.Although rating themselves numerically high, many respon-dents acknowledged hospice expertise with regard to painmanagement and the need for additional education. Onerespondent stated, “Symptom management and pain controlexpertise is far and above what our staff can provide.”

Finally, respondents were asked two open-ended questions:(1) If they could change something about hospice what wouldit be?, and (2) What is the biggest barrier to hospice care forresidents? Fifteen percent identified shortcomings concerningstaffing issues and the need for more visits and service byhospice staff. Comments included, “perception of staff thathospice isn’t doing enough” and “increase personal care withpatients” and finally, “hospice needs to provide total care ifthey are going to be in the facility.” These statements dem-onstrate a lack of understanding that hospice services areintermittent, and that the level of service provided to patientsis dependent upon patient acuity. Improved communicationwas identified as a need by another 15 percent of the respon-dents. Comments related to this issue included “We needbetter communication” and, finally, “Facility staff is confusedabout hospice boundaries verses facility boundaries.”

When asked what the biggest barrier to hospice was for theresidents, respondents identified lack of information in thecommunity and physician support for hospice. One commentmade regarding the lack of information stated, “Hospice needsto educate the public, families, and physicians.”

CONCLUSION

The findings of this study suggest opportunities for im-provement and further research. Opportunities include the

Fig. 1. Survey instrument for telephone interviews.

48 Parker-Oliver and Bickel JAMDA – March/April 2002

evaluation of hospice services provided to nursing home pa-tients, the lack of knowledge of nursing home staff regardingregulatory and reimbursement issues, the need to improvecommunication between hospices and nursing homes, theneed for education and the role Medical Directors can play init, and the development of palliative care standards.

Results show a positive overall experience with hospice(2.1) and an acknowledgment that hospice has value (1.9). Itis interesting to note that rural homes rated overall experienceand value significantly lower than urban homes. Areas ofconcern were expressed by more than a quarter of the respon-dents. In both structured and open-ended questions, there wasa consistent number who described issues related to a lack ofresponsiveness by hospice, and the benefits of hospice forresidents. When asked how relationships could be improved,30 percent identified some form of staffing or communicationissue. This may reflect the lack of understanding by nursinghome staff regarding the intermittent nature of hospice staff-ing, resulting in inappropriate expectations by nursing homestaff, or perhaps it points out that hospices, especially servingrural homes, need to assess the frequency of service delivery tonursing home residents.

The study found that nursing home management does notunderstand hospice reimbursement and/or regulations. A gen-eral lack of understanding that hospice is ultimately respon-sible for the plan of care10 may help explain reasons forcommon misunderstandings and poor communication. TheMissouri Department of Health reports that nursing home andhospice plans of care are often independent documents, main-tained in separate parts of the chart, and are sometimescontradictory in treatment approaches. Because hospice hasultimate responsibility, it is important to ensure that thenursing home plan is coordinated with the hospice plan ofcare. A related problem is that only 8 percent of administra-tors correctly identified the survey agency for hospice, andnone of the DONs knew the correct answer. This creates a

dilemma if a home is unhappy with the quality of hospicecare, because they would not know whom to contact with acomplaint. DONs and administrators clearly need educationfrom the hospice agency and the medical director aboutreimbursement, regulations, and survey agency issues.

Another opportunity identified for future research involvescommunication. Illustrated by this comment, “Meds shouldcome through our pharmacy as hospice sometimes doesn’t getmeds on time and plan appropriately,” communication prob-lems abound. Communication problems, noted by 15 percentof the respondents, may also account for the perception thathospice “does not do enough.” With two separate providerscaring for the patient, communication is critical.

Barriers to hospice for residents are similar to those fordying patients not in a nursing home. Respondents com-mented on the need for additional education and informationof the public, as well as the physician community. Physicianscontinue to be unaware of what hospice is and what itprovides, and support for the service varies. Medical directorsof the hospice and the nursing home can assist with this issue.Medical directors need to become actively involved in work-ing with primary physicians to develop an understanding andappreciation for hospice, and in referring patients into hospicewhen the time is appropriate. It is the medical director’sresponsibility to identify when treatment goals have changedto palliative care, and thus work to facilitate the referral ofservices to meet those new goals. Hospices and nursing homeshave an opportunity to enhance the role of medical directorsin this way if they would focus on continuing education andchallenge the physicians to become involved.11

Finally, it appears that nursing homes overestimate the painassessment skills of staff. It is important to note that the ratingthat management gave to staff skills was subjective and notbased on any objective evaluation of staff skills. Just as Joneset al.9 reported that nursing homes thought they did anadequate job of caring for terminally ill patients, research has

Table 1. Summary of Results: Hospice Service Experience

Question Overall Administrators DONS

Overall hospice experience rating 1–5 (1 is best) 2.1 2.1 2.2Benefit of hospice to residents rating (1 is best) 1.9 1.9 2.0Why rated as they did: (open ended)

Some positive aspect identified 66%Differences in quality among hospices 10%Lack of availability when needed 10%Not enough benefit in hospice 5%

Does hospice visit regularly?Yes 90% 96% 88%No 10% 4% 12%Does hospice visit frequently enough?Yes 78% 84% 72%No 22% 16% 28%Is staff available when requested?Yes 76% 80% 72%No 22% 16% 28%Don’t know 2% 4% 0

Administrators N�28; Directors of Nursing N�32

ORIGINAL STUDIES Parker-Oliver and Bickel 49

shown that nursing homes do not manage pain well. Whilethe respondents indicate a high regard for hospice knowledgein this area and a need for additional expertise on the part ofthe nursing home, the numerical finding indicates a fairlyhigh level of perceived staff confidence (a score of 2.1). Thereappear to be mixed messages here. This is important sincehospice proclaims to have more pain management expertise,yet the nursing homes in this study evaluate their own end-of-life skills as adequate. If nursing home staff believe that thisis an existing core competence, then they may be less likely toinvest in continuing education to improve it. They seem tobelieve in themselves more than what the data suggests.Indeed, Zerzan et al. recommended that state surveyors betrained to identify quality of care deficiencies in nursing homedeaths.6 Until nursing homes are held accountable for thequality of palliative care in the same way they are heldaccountable for restorative care, it will be hard for providers torecognize the need for investigating and improving thesespecialized skills.

In summary, efforts to identify barriers and service deliveryissues need to continue if hospice utilization by nursing homeresidents is to increase and end-of-life care improve. Researchhas proven the benefits of hospice care and shown that anincreasing number of Americans will die in these facilities. Itis time to accept the fact that nursing homes have three typesof patients: (1) those requiring rehabilitation to improvefunction, (2) those requiring treatment to maintain function,and (3) those requiring palliative care to manage the dying

process. Care for each of these residents requires specializedskills and training, and this in the context of limited staff andhigh turnover rates. Just as therapists are utilized for rehabil-itation, hospice is available for palliation.

REFERENCES

1. Brown University School of Medicine, Brown Atlas Site of Death1989-1997, Brown University, 2000.

2. Nursing Home Task Force Report. Washington, DC: National HospiceOrganization, 1998, pp. 1–87.

3. Christopher M. Benchmarks to Improve End-of-Life Care. Kansas City,Missouri: Midwest Bioethics Center, 2000.

4. Keay TJ. Palliative care in the nursing home. Generations 1999;23:96–98.

5. Oliver DP. The social construction of a dying role: the hospice drama.Omega 2000;40:19–38.

6. Zerzan J, Stearns S, Hanson L. Access to palliative care and hospice inthe nursing home. JAMA 2000;284:2489–2494.

7. Bernabei R, Gambassi G, Lapane K, et al. Management of pain in elderlypatients with cancer. JAMA 1998;279:1877–1882.

8. Murphy K, Hanrahan P, Luchins D. A survey of grief and bereavementin nursing homes: The importance of hospice grief and bereavement forthe end stage Alzheimer’s disease patient and family. J Am Ger Soc1997;45:1104–1107.

9. Jones B, Nackerud L, Boyle D. Differential utilization of hospice servicesin nursing homes. Hosp J 1997;12:41–57.

10. Health Care Financing Administration, Medicare Program HospiceCare; Final Rule (A.M.P.H.C.F.R.) Federal Register. December 1983;16:1983.

11. Oliver DP. Practice patterns of hospice medical directors in a midwesternstate. Am J Hosp Palliative Care 1999;16:633–641.

50 Parker-Oliver and Bickel JAMDA – March/April 2002