Nursing Home Experience with Hospice

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<ul><li><p>ORIGINAL STUDIES</p><p>Nursing Home Experience with HospiceDebra Parker-Oliver, MSW, PhD, and Denise Bickel, MSW</p><p>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.</p><p>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.</p><p>Setting: Nursing homes.</p><p>Participants: 60 administrators and directors of nurs-ing (DON) from 42 nursing homes in Missouri.</p><p>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.</p><p>Results: Results show that management personnel be-lieve that hospice was positive and valuable for resi-</p><p>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.</p><p>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: 4650)</p><p>Keywords: Nursing home, hospice, palliative care</p><p>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</p><p>care. Research has shown that deaths often occur with mis-managed pain and symptom control, and that spiritual andemotional supports are absent.4</p><p>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.</p><p>Rules for the Medicare hospice benefit were clarified in</p><p>University of Missouri, School of Social Work, Columbia, Missouri.</p><p>Debra Parker-Oliver, MSW, PhD, University of Missouri, School of Social Work,719 Clark Hall, Columbia, MO 65211.</p><p>Copyright 2002 American Medical Directors Association</p><p>46 Parker-Oliver and Bickel JAMDA March/April 2002</p></li><li><p>1989 to include residents in long-term care institutions.6</p><p>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</p><p>Low utilization continues to be a concern for professionalsdedicated to improving end-of-life care.</p><p>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</p><p>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</p><p>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?</p><p>METHODS</p><p>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.</p><p>RESULTS</p><p>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-</p><p>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).</p><p>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.</p><p>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.</p><p>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).</p><p>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.</p><p>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 patients plan of care. Specifically, 36</p><p>ORIGINAL STUDIES Parker-Oliver and Bickel 47</p></li><li><p>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.</p><p>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.</p><p>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.</p><p>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 isnt 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.</p><p>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.</p><p>CONCLUSION</p><p>The findings of this study suggest opportunities for im-provement and further research. Opportunities include the</p><p>Fig. 1. Survey instrument for telephone interviews.</p><p>48 Parker-Oliver and Bickel JAMDA March/April 2002</p></li><li><p>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.</p><p>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.</p><p>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 ex...</p></li></ul>


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