The majority of Americans die in hospitals and nursing homes. There is substantial evidence in the medical literature, that care of the dying in such settings is often poor, and the obstacles to providing good end-of-life care remain numerous. Palliative care consultation has the potential to improve the care of patients dying in the institutional setting

Somogyi-Zalud, Emese

eVols at University of Hawaii at Manoa

Palliative Care-A Service to Improve theDying Experience in Hospitalsand Nursing HomesEmese SomogyiZaIud MDAbstract° 3 r 3 3is substantial evidbnce in the medical liter a tu.re, that came of thed a mm ‘te n r no nbta em n ‘ o oooo.od end-c f-Life ca.me.rmnan nurnercrcs.has the potential to improve The c;are ot pallenis ricing in thernst:turronai /03BackgroundAt least ts 0 out of three Americans die in institutions, mainlyhospitals and nursing homes.Indeed, hospitals are the most common place to die. It has beenreported that 57% of deaths are occurring in hospitals, with someregional variations across the country.’ At the present time, one outoftive Americans dies in nursing homes. representing haIfa milliondeaths each year. While hospital deaths are declining slightly, thenumber of deaths in nursing homes is rising rapidly. It has beenestimated that this number will rise from the current 20% to 40% in2020. Such changes reflect the recent shift from inpatient tooutpatient care. and perhaps a growing preterence for less aggressive end-of-life care, The increased number of nursing home deathshas bee 11 tied to greater as ailahilitv of nursing home beds and lowernumber of hospital beds as wellhEnd—ot—lite care has been round to be poor in both hospitals andnursing homes, despite the fact that those are stich common sites ofdeath. High rates of untreated pain and other symptoms have beendocurnemed mn both d I ng hospital patients. and nursing homeresidents,T It has been repeatedly demonstrated that 40% of hospitalited patients in a wide variet of disease categories die in severepainh Other common, although treatable symptoms are dyspneai50%). delirium (25(7 anxietr anddepression (25% ). There is alsoagrowing body of literaturcon the undertreaunentof pain in nursinghomes. One out of four nursing home patients in daily pain werefound to receis e no treatmnenid’ Certain groups, like the oldest-oldand minorities, are at particular risk.Enema Scnccm-Zm..%Unrvers,ty at Hand4. Ernrs School c ktebc%(mer:nsc cr-”e Poocran347k. Kuakin St. HPM-9•Honciuiu, Ff96817oarSimilarly, advance care planning has been found to he absent orinsufficient in these settings. A studo published in I 005 found thattwo thirds of nursing home residents have no documentation ofads ance care planning. arid in those who did. it was usuallyinsufficient, Other studies came to similar conclusions. Perhapseven more striking is the finding of marked regional variations in theutilization of advance directives br nursing home patments. .Z ()reanizational features rather than patient and family preferences caninfluence the unltzation of end-of-life care options. such as hospicem and advanced directives’’ in nursing homes. Similarir,hospital data indicate that less than half of inpatients discussedadvance dmrecnves with their phr sicians Others found this numberto he even less, only one out of four.’6Given that, it is not surprisingthat the care provided is often inneneruent with patient preferences.The above data illustrate the fact that providing high quality end—ut-life care in hospitals and nursing homes remains a challenge. Avariety of reasons including organizational, regulatory, reimburse—merit, educational, and cultural issues are involved.A successful model of good end-of-life care already exists in theform of hospice. Hospice services have been shown to improve end-of-life came b improving the management of pain and other symptoms. and by pi-os iding emotional and social support to the patientand time tamil\ , - Hospice services are best suited for patients dyingfrom diseases that have a predictable terminal course, like AiDS andcancer, amid for patients livmne at home, rind have a dedicatedcaregiver. Reimbursement is limited to those with less than sixmonths 01 life expectancy. Gmven that. ml becomes obvious that sucha model is not alms a s applicable to patients dying in institutionalsettings, and from a wider range of medical conditions.The current state of death in the hospital:In hospitals, the emuphasis is placed on curative care. Yet, hospitalsremain the site of death tbr many, including those wmth acute andchronic disease, trauma, those dying unexpectedly, and those withlimited social and t’inancial mesource5,The impact c;’f hospital deathon patients and families has been well documented in the SUPPORTstudy. Most notable are the findings of high level of untreatedsymptoms. poor communication, difficulties prognosticating.. defiemcnc ies in ads ance care plammning and decision making, and lamefanalr burden, This tudv has also demonstrated that our currentperception of the effective wars fur improvino care of the dYingbetter communication, ads ancr-d came planning and education) hasunderestimated the complexity of the problem.tm0With many suffering and dvirisz mn hospitals, mime task of incorporating good cynmptomn6control and other aspects of pa1liati e care becomes an essential partof good practice. Blending and balancing curative and supporti ecare is a diflicult. vet everyday challenge for those workine inhospitals. Barriers to good end-of—life care can he numerous in thehospital setting. including focus on curative care, uncertaintiesregarding prognosis, lack of knowledge. negative attitudes, financial, quality management and regulatory issues, fragmented careand decision making. legal concerns, ete.-’-’ There is an emernincunderstanding that s\ stematic chances are needed tot improvement,The current state of death in the nursing home:In nursing homes, the emphasis is placed on restorative and custodial care,23 while failing to measu.re and reward high quality end-of-life care,2While such emphasis is meaningful and appropriate forrnan . it does not acknowledge the needs of a substantial portion otthe nursing home population suffering from irres ersibie terminalcondito.ns. In fact. the maoritv of patients get admitted to nursinghomes with the expectation that the ar— going to die there, Theoldest and the most frail are the ones most likely to ‘.pend the end oftheir lives in nursing homes. and to die there. There s recognitionthat nursing homes should he reconceptualized as end-of-life careinstitutions,24The fact that the majority of those dying are alsoelderly is not unique to the nut’sing home, hut is rather a universalphenomenon. making a case for enhanced geriatrics s kills for allwho provide end-of-li te cai’e,7Interestingly, despite the growin pressure in recent ears toreduce hospitalization. financial incenttves are still in place for allins olved to transfer dying nursing home patients to the hospital.’Dissatisfaction with terminal care in nursing homes has been documented,23 Nursing home residents are typically of very advancedage. with multiple, chronic. incurablediseases likedenientia, chroniclung and heart disease. Onlr i rt- of dying nursing home residents usehospice services.- Hospice utilization has been low for such patientsfor a sanet of reasons. There are dit’ficuities in prognost icaung theterminal course ot such patients2’Most nursing homes do not haveregular access to hospice* Efforts to promote such services fornursing home residents and their families have been limited. Widespread interventions and high quality medical research on thecommon human experience of dying in nursing homes is quitelimited.In addition to being ion . there’ arc also n ide variation— in theutilization and acceSs to hopice care h\ nursing home i’esidents.Acce—s mm be trongiv influenced by faci liiy related factors, so ionutilization does imt necessarily reflect patient preferences. Currently. obstacles to high qualirt end-of-life care in long term care arealso num.erous and include lack of expert:ise and resources, negativepublic image, burden of ado in.istrative work, low staffing, regulatory environmert. and lack of soci.al support for some residents,f.uTent health olic\ . qualm standards and rein3hurscnient discourthe , ni ii,,g ir h ii r u 0., 091Incentivec are on the side of restoratis e and technologically intensetreatments. In fact. incentis Cs or qul ifi standai’ds specific to theneeds of thedvino are lacking. As aresult ..systematic changes in thenurs;ing home industry will he needed in. order to improve terminalcare..a hetterd inc experience forpatients andfamilies in the institutionalsettinc’. We need to start b ansn ering the question: what are thefeatui’es of a ‘‘good death”g In fact. there is a growing literature onthis stibject. Several key points include high quality medical care,ethical decision making, symptom control, emotional and spiritualsupport, family and caregiver involvement, continuity’ and planningof care, and attention to patient and family prelrences.29’3For alldying patients, the right to such high quality end—of-life care is well—establmshed, ‘ and all health care pros mder’. has e the ethical oblicanon of providing it. It has been inci’easinglv recognized on a nationalie’=:el that there is an urgent need to correct the existing shortcomingsin the care of the d ing. We need to make such care not onlyavailable, hut rather routinely oft’ercd to nursing home and hospitalpatients. The role ofhospice and palliative care needs to he expandedin the nursing home and hospital setting. as art of an effort toachieve such a goal.Palliative care consultationPallmatis e care consultation is a model that has been increasinlyused in an effort to improve end—of—life care in settings like hospitalsand nursing homes, Palliative care is “The study and management ofpatients with active, progressive, far-advanced disease for whom theprognosis is, limited and the focus ofcare is the quality of life”.35Thebenefit of such approach has been established.0 It includes enhanced quality of life by Impros ed s mptom control, emotional andpsychosocial support for the. patient and t’amly. and coordination ofcare, °‘ In addtmon to the c itnical role of’ such services, theireOucational role has been emphasized as nell,-Palliative care consultation in hospitalsOver the past decade. there have been several reports on hospitalbased palliative care consultation for terminally ill patients. 0,42They has e been mostly geared towards cancer and AIDS patients.Such sers i’ es were found to fat orablv impact care, It has beennci’easingiv recognized that the are also beneticial to patientsdvng t’rom other chronic progi’essts e diseases, such as heart andlung disease, and dementia. While such sers ices are becomingincreasingly available, they are still nonexistent in the majority ofhospitals. A high quality end-of life care experience is difficult toachieve in such settings due to barriers already discussed, Physicians and staff often lack awareness, and their education is typically’insufficient, Patietit needs are complex. and reimbursement forpaliiatve care is limited. \‘et there are numerou.s conceit ablebenefits Irom such set’s ices. including higher qtmality of’ care. betterpatient. family and ctaff satisfaction. avoidance of cxpensis e, ins asive procedures in patients who are unlikely to benefit, shortenedlength of stay, an..d coordinated, more appropriate discharg.e pla.nfling.Palliative care consultation in nursing homesForpatmcnts ding in a nursing homc. ot’tc’nadec ision ha’, been madeto limit acgt’essi\ e treatments: A palliative treatment plan is cs’entoil for. itch patients, Furthermore. due to the hi’i pies alencc ofuncomfortable symptoms such as pain, palliative care needs to heintegrated into the. treatment plan of nursing borne patients, reg,ardless of prognosis.Termim i deniento ‘hr. examgfi ne ould ike to uso I’ orderin summar. the question remains, How are we g,oi ng. to provideto make the case for a despread palliative •are in nursing liomes.’Dementia is amoni the leadinsz medical conditions in the nursinihomes, affecting 6O ot patients. Advanced dementia is incurableand fatal, Palliative treatments are central to the appropriate care forpatients at advanced st.ages of a de.menting ill.ness, in view of thecommon, highly distressing symptoms. which inc lode pain, agitmdon, delirium, delusions, hallucinations, depression. insomnia. d spnaeia. malnutrition, incontinence, constipation, pressure ulcers.itnmobilit\ and symptoms associated a ith infections lex er. pain.shortness of breathi. The comuiex p’ ehosocial nceds of the patientand famil\ . the sufferin of the patient. earegivers and family and thefrequent need for ethically challengina decision-making in thesepatients can also he addressed with.i.n the con..text of palliati.ve care.In reality, despite the overwhelming need, few hicilities have theexpertise and resources for providing palliative care to their residents.Z despite the proven value of such ser\ ices: Specializedhospice units tn nursing homes are rare Administrative structureN LI I g Ii_h 0L lit id t ic p nt ruhomes. Stall education is t picall nsttfticient. and educationalefforts are erratic, and not tied to more widespread structuralchan.ges.4Given the everyday need to deal wit.h death in nursirl.ghomes, education in end-of-life care should he considered mandatory. Medical care in nursing homes is typically provided bycommunity phsicans. most of a horn lack education and trainingin paiiiatise care. The lack of such expertise and sers ices is likely tocontribute to the frequent hospitaltiatton of nursing home atients.which has been a eH documented: Fral patients, who are the leastLikely to benefit from hospitalization. are the ones niore likely to behospitalizech25Few patients desire the hospital or the nursing home as: a site ofdeath. Most people want to die at home, in sharp contrast to whathappens in reality,52The advantages ol’ a home arrangement nclttdeenhanced privacy, patient autonom . presence and ittvolement ofthe familv.’ familiar environment, limited use of medical technoLcmv. and a ch established relationships wtth earegtvers. In yea ofthe increasing trend of nursing home deaths, efforts should be madeto bring the advantages of the home as a site of terminal care to thenursing home, In fact, the nursing home environment would allowfor these fairly easily.In addition to what has been already said, palliative care consultation can be used n situattons when Us nc hospee is diffteult. Thscould happen for a’. arietv of reasons. DiI’t’ic ult proinosticating theterminal course of rnan chronically ill patients makes pros idersreluctant ti reter to hospice. and hopiccs equally reluctant to takepatien.tsw’ ith exceedingly common cond.itions, such as chronic heart.snd lung disease, or demet..tia. Patient a.nd fam.i.lies are sometim.esreluctant to give up standard heath. insurance benefits in favor of thehospi.cehe.nef’itfueto persona.l. he.iiefs and value.s, or due to financialdisneents es ‘elated to the art’angernent, Lack ot access becomes anissue, particularly in ca’cs where there is no contract beta ecn thenursing home and a hosptee organ/anon. In all these situata us.pailtatise care ‘ervicec can help in till in the gap.The s aLe of palliatis c care goes herond serving the clinical needsof patients:. In the past few years, substantial effort ha.s he.en made t.oenhance medical edueatio.n and research in en.d-of-hfe care. Withmed.icai education has ing its tradition.ai emphasis on e.urative,n spitl i ed med n ghssc ,pc IL insu1f . omIt tra d tocompreuensivelx manage patients near the end—of-lit’e. If suchpatients restde in a setttni other than a hospital. the physician is les’.likely to have received training in this area.. This has been a elIrecognized, and reported by the Consensus Conference on MedicalEducation for Care Near the End of Life in l999, Educationalefforts are needed in targeting all levels of health professionals.including medical students, residents. faculty, practicing phvsiclans, and allied health professionals, There are unique educationaloppomtulities offered hr palliative care including symptom control.patient manas’enent in settings other that inpatient. nterdiscipli—na’s aork, ethics. dealing with family and caregiser issues, coinmunication, goal setting and clinical decision making., etc.’5The opportunities and the value of palliative care education has been recognized hoth :in the hospital,56 and long ter.m care settings.54Since the landmark SUPPORT study. the experience and thecame of those dviii in an institutiontal setting has been increasinglrecognized as an important area of medtcal research. \\ hile SUPPORT’ gave an tmportant instiht tO the state of dv inc in Amtiericanhost ital’c. mans Lluestons reman unansu. ered. Despite the tact thainursing home deaths are so common, there has been little researchdone on the topic. Further clinical studies and health servicesresearch are needed.in summary, thei’e is a great need for providing better palliativecare services to those dying in health care institutions like hospitaland nursing homes. Since the ma erwhelming majority of those thinate elderly, more cei’iatrics expertise is also essential for rovtdnbetter end-of-life carc,85 This perhaps applies to Hawaii em en morethan other areas of the eountrs. given the tact that life expectancy ishigh, ‘2 hospice utilization is low,5and there is a shortage of nursinghome beds.AcknowledgementsThe author ‘pkc to Dr Pd” a Baorete aro o Dr Karn MasaK: for re’ ewno“r’ mapucrrotReferences41 , I8‘SN 4 prOd -‘ tONa tA5 5vh U a N at A d Ti U U Nt1 I 1hr hL ss1 j1Ia O ndi \ itT at V Np a p N i r Na t JAm oN ‘Na ‘ /‘ a r at1Ni SLh n II ‘N Ots r9 M 8a DK V N t p a r Ia Ut‘it N r 1 ‘NS 8” Ls5. — - —I -- Ut N t I’ --r1 ar IT a a I a it a i r ‘N a + ‘SM I PL N r a Mc N a ‘S ‘Ut N I II I dl dOPaw U t p p t it r p it II 4 a pm Ut 01N 0m N NI’ r Ut ah a J 0 tO mN Mao a 4a 28 ad I I 04 N N— P a7, —f‘N N t a T mtn1 Si a’ N t a r rflIt P tO So N’ ai pta ajSl- u m’S B Na—arj a 1, a ar VU-N 151- -. Am. a r ,U ‘a+ I rJL 7 5 to r da U r rUt‘N’r nNa aM’ a rma ‘N 51 4 aNS 510 i/ J tia ‘+1 p 51 a NL t’ IN I Nat JA’a r N Ma’ ‘ ‘ N a a a1 4 aNi i Ia’If All 0 SIsJ 4 SI, 51+—NV, t Na arpstr ISIS541-S 55, r 1+ Sn’A-’OrUntil There’s a Cure,There’s thea aAmerican DiabetesAssociationThere is a timein life when we startto understandwhat reallymatters.peopleillness,withtheirfamilies and lovedones live every day at924-9255

Palliative care--a service to improve the dying experience in hospitals and nursing homes.

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Palliative care--a service to improve the dying experience in hospitals and nursing homes.

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