The voluntary status of nursing facility admissions

Scripps Gerontology Center

Scripps Gerontology Center Publications

Miami University Year

The voluntary status of nursing facility

admissions : legal, practice, and public

policy implications

Marshall KappMiami University, [email protected]

This paper is posted at Scholarly Commons at Miami University.

http://sc.lib.muohio.edu/scripps reports/19

THE “VOLUNTARY”STATUS OF NURSINGFACILITY ADMISSIONS:LEGAL, PRACTICE, ANDPUBLIC POLICYIMPLICATIONS

Marshall B. Kapp

April 1997

Marshall B. Kapp was educated at Johns Hopkins (B.A.), GeorgeWashington University (J.D. With Honors), and Harvard School of PublicHealth (M.P.H.). He is Professor of Community Health and Psychiatry andDirector of the Office of Geriatric Medicine & Gerontology at Wright StateUniversity School of Medicine. He is a member of the adjunct faculty at theUniversity of Dayton School of Law and is a Fellow of the GerontologicalSociety of America.

This research was funded as part of a grant from the Ohio General Assembly, through the OhioBoard of Regents, to the Ohio Long-Term Care Research Project. Reprints available from theScripps Gerontology Center, Miami University, Oxford, OH 45056; (513) 529-2914;FAX (513) 529-1476; e-mail: [email protected].

The “Voluntary” Status of Nursing Facility Admissions:Legal, Practice, and Public Policy Implications

Marshall B. Kapp

Scripps Gerontology CenterMiami University

Oxford, OH 45056

April 1997

Executive Summary

Many nursing facilities in Ohio and nationally are increasingly reluctant, and sometimesunwilling, to admit as residents individuals whose legal status is unclear. This status may beunclear because the individual is mentally incapable of consenting to admission and (as an"unbefriended" person) lacks any legally authorized surrogate decision maker who can giveconsent. This report, based on a literature review and on individual interviews with hospitaldischarge planners, nursing facility admissions officials, advocates for older persons, and others,examines this problem and its practical ramifications.

Major findings:

• Many nursing facility admission directors are reluctant to accept new residents unless theresident or a surrogate has clear legal authority to voluntarily consent to admission. Thisreluctance is due to fear about potential legal (including regulatory) liability, althoughfacilities with low bed censuses often are more flexible about accepting applicants who arein legal "limbo."

• Nursing facilities' reluctance to take certain applicants may cause excessively long hospitalstays while the legal details concerning decision-making authority are being resolved.Delays in placement may expose prospective nursing facility residents to unnecessarymedical risks in the hospital and may financially penalize hospitals, which are reimbursedaccording to a prospective payment system.

• Hospital discharge planners deal with the problem in a variety of ways, such as payingattorneys to initiate and carry out guardianships and working with public and volunteerguardianship programs.

This report outlines several possible policy interventions, both governmental and private,for addressing jeopardized nursing facility care for decisionally incapacitated, unbefriended olderpersons who require that level of care. These interventions include the following:

• Facilitation of appropriate guardianships by (among other things) enhancing legislativefunding of county indigent guardianship funds, streamlining and economizing theguardianship process, empowering adult protective services agencies to initiateguardianships for individuals who are in a hospital or a nursing facility, instilling greateruniformity among probate courts in dealing with these issues, encouraging greater use oflimited or partial guardianship, and studying the feasibility and desirability of establishinga public guardianship system that would cover the population addressed here and/orenhancing the ability of volunteer guardianship programs to meet the need;

• Recognition of a limited "good faith" exception to the usual informed consent requirementsin the case of "obviously" incapacitated unbefriended nursing facility applicants andresidents;

• Consideration of developing and implementing an administrative system for addressingconsent issues as a less intrusive alternative to formal guardianship;

• Encouraging the application of advance directives to this area;

• Sponsoring and/or supporting continuing education for professionals on these issues;

• Using institutional ethics committees to help resolve difficult dilemmas regarding nursingfacility admission;

• Supporting rigorous research in this sphere; and

• Facilitating ongoing communication and collaboration among the key participants in thenursing facility admissions process.

The proper public policy response to the challenge identified here will depend on (1) howwe define the essential character of the modern nursing facility and (2) whether we are guided bya medical/therapeutic model, which emphasizes protection of the vulnerable and dependent fromphysical harm, or by a legal/rights model, which emphasizes due process safeguards againstexploitation.

Acknowledgements

The author expresses appreciation to the numerous individuals who agreed to beinterviewed for this research project; for reasons of confidentiality they cannot be named here.Thanks also to the following individuals for their thoughtful comments on an earlier draft of thisreport: Robert Atchley, Jane Straker, Marisa Scala, Ronald Kozlowski, and Julia Nack. LarryWeiss, PhD, of the Scripps Gerontology Center of Miami University, provided helpful guidanceas the project officer. All opinions and/or shortcomings are solely those of the author unless notedotherwise.

Table of Contents

Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1The Problem . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1Potential Constitutional Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2The Admissions Issue in Larger Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3Information Sources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3Research Questions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4Legal Anxieties and Implications for Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4Financial Influences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6Impact on the Parties . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8Current Strategies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10Issues of Decision-Making Capacity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12Adult Protective Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Policy Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13Themes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13Alternatives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14Nongovernmental Initiatives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

The “Voluntary” Status of Nursing Facility Admissions: Legal, Practice, and Public Policy Implications

Scripps Gerontology Center Page 1

Background

The Problem

In every jurisdiction in the UnitedStates, statutes permit the state toinvoluntarily hospitalize in a public mentalhealth institution--or in a private institutionthat has been licensed by the state for thispurpose--persons who are considereddangerous to themselves or to others becauseof mental illness.1 By contrast, everyadmission of a new resident to a nursingfacility (whether public, proprietary, orprivate not-for-profit) is voluntary, in theory.Legal authority to involuntarily commit anindividual to a nursing facility does not exist.That is, the law presumes that everyadmission to a nursing facility (like everyother health care decision) is based not onlyon a physician's order but also on theinformed, competent, and voluntaryagreement of either the new resident or alegally authorized surrogate decision maker.

For instance, many nursing facilityadmissions result directly from hospitaldischarge planning processes. FederalMedicare regulations pertaining to theseprocesses require that the hospital "mustdiscuss the results of the [patient's dischargeplanning] evaluation with the patient orindividual acting on his or her behalf."2

Other routes to a nursing facility include thehospital emergency department and theindividual's home, particularly when theindividual and/or family find, shortly afterhospital discharge, that they cannot copeadequately with the demands of home care.In each of these situations, voluntary

informed consent to nursing facilityadmission is presumed as a matter of law.

In reality, however, many individualshave been "voluntarily" admitted to nursingfacilities even though (1) the resident lackssufficient mental capacity to engage in arational decision-making process3 but has notbeen formally judged incompetent by theappropriate local court, and either (2) nointerested family members are available atthe time of admission or (3) interested familymembers are available but have not beenformally authorized to act as surrogatedecision makers through a guardianship/conservatorship order or durable power ofattorney. In these situations, nursing facilitiesordinarily have accepted decisionallyincapacitated new residents despite the legalambiguity surrounding their admission. Theyhave suffered no negative legal consequencesfor proceeding in this manner.

Widespread anecdotal reports,however, primarily from hospital dischargeplanners and geriatric care managers, suggestthat many nursing facility admission directorsare increasingly reluctant and sometimesunwilling to engage routinely in these kindsof admissions. Current federal laws (mainlythe Nursing Home Quality Reform Actincluded in the Omnibus BudgetReconciliation Act [OBRA] of 19874 andimplementing regulations,5 and the PatientSelf-Determination Act [PSDA] of 1990)6

and state laws, and the government surveyorswho enforce them, emphasize residents'decision-making autonomy in nursingfacilities, exercised either directly or througha surrogate.7 This emphasis createsuneasiness, in facilities, about possibleregulatory sanctions and/or civil liability forviolating residents' autonomy. Many nursingfacility admission directors seem increasingly

Page 2 Miami University

to balk at accepting new residents as"voluntary" admissions unless either theresident's present decisional capacity or theputative surrogate's legal authority is clearlyestablished and documented.

The greatest difficulty in nursingfacility or other long-term care placementoccurs in the case of mentally ill individualswith significant behavioral problems and novisible surrogates, because facilities areconcerned about their legal authority (ifnecessary) to physically restrain and/or treatsuch individuals with psychotropic drugs thatcarry substantial risks. Nursing facilities areprohibited by Title III of the Americans WithDisabilities Act (ADA)8 and theRehabilitation Act of 19739 fromdiscriminating in admissions on the basis ofan applicant's handicap. A facility, however,can deny admission to persons exhibitingdangerously aggressive behavior that thefacility is not equipped to handle and care forproperly.10

In addition, payment source stillfrequently affects the likelihood of admissionto the nursing facility of one's choice,because some discrimination againstMedicaid-eligible individuals persists despiteits illegality in most states. Nursing facilitiesare subject to great pressure not to err inadmitting individuals who will posesignificant management problems, becauselegally it is extremely difficult to transfer ordischarge a resident over objection after heor she has been admitted.11

In light of nursing facilities'reluctance to admit certain types ofindividuals, some discharge planners and

care managers complain that transfers aredelayed or disrupted for numerous personswho should be transferred to nursingfacilities from hospitals (which are notallowed to abandon these persons) or fromunsafe home environments, until clarificationof the legal question: Who may voluntarilyconsent to the nursing facility admission?Such delays often cause physical andemotional harm to the eventual resident andfinancial harm to the hospital; the resulting"solution" is frequently to initiate and imposea guardianship12 on the individual.

The legal and ethical literature isfilled with discussions about individuals'autonomy in regard to decisions abouttreatment and daily living, once they haveentered a nursing facility. Thus far, however,legal practitioners, lawmakers, and scholarshave virtually ignored the informed consentstatus of the admissions themselves. Forexample, the extensive federal regulationsand state statutes on residents' rights aretotally silent on admission status. The currentliterature contains only a very few incidentalallusions to the issue and deals mainly withethical rather than legal considerations.

Potential Constitutional Considerations

The status of nursing facilityadmissions is complicated by the potentialimpact of the U.S. Supreme Court's decisionin Zinermon v. Burch.13 In that case, theCourt ruled that the State of Florida could besued civilly for permitting an adult person(who was later held to be mentallyincompetent) to "voluntarily" admit himselfto a public mental institution without firstascertaining and documenting that the patient



Methods

had enough cognitive and emotional capacityto decide autonomously about his admission.

Although the reasoning in Zinermonhas not yet been applied to nursing facilitieseither in any litigated cases or in the legalliterature, we must consider the potential forsuch an application and its probableconsequences. Admission practices of publicfacilities clearly implicate the "state action"that is needed to trigger constitutionalprotections for the resident. The extensiveregulatory and financing relationships (i.e.,Medicare and Medicaid) between privatelyowned nursing facilities and government alsomay be sufficient to satisfy the "state action"criterion.

The Admissions Issue in Larger Perspective

The legal status of nursing facilityadmissions in the absence of a resident ableto make decisions or a legally authorizedsurrogate is only one part of a largersituation concerning medical and otherdecision making for incapable persons wholack families or close friends. The problemalso arises, for instance, when a nursingfacility resident who is or becomes severelycognitively and/or emotionally impaired (andmost nursing facility residents belong to thiscategory) needs specific interventions (suchas restraints or particularly risky andinvasive medications and medicalprocedures) and there is no clearlyauthorized surrogate willing and available toact.

Similarly, nursing facility residentsoften need to be transferred to acute carehospitals for treatment of specific problems.

The hospital (that is, the hospital'sphysicians, who issue all admitting andtreatment orders) may refuse to accept aperson from the nursing facility and/or maytreat him or her in the absence of explicitlegal authority. In extreme cases cited bynursing facility social service workers,hospitals may refuse to dispose of a deceasedpatient's body until the administrator of thetransferring nursing facility requests(although without any legal authority to doso) that the body be taken to a funeral home.

In addition, hospital dischargeplanners may not easily find health agenciesthat will accept an unbefriended patient withquestionable decisional capacity, particularlywhen the patient requests discharge to aphysically risky home setting. These types ofsituations are difficult and need promptpublic policy attention. Their resolution,however, is beyond the scope of this report,which concentrates on nursing facilityadmissions for incapacitated, unbefriendedpersons.

Information Sources

To explore the legal, practice, andpublic policy issues raised in the precedingsection, I conducted qualitative research fromlate 1996 through early 1997. In addition toan extensive (but not highly productive)review of the relevant literature, primarylegal sources, and selected secondary


Findings

materials, I held 30 structured interviews,either in person or by telephone, withhospital discharge planners, nursing facilityadmissions personnel, long-term careombudsmen, regulatory officials, nursingfacility trade association leaders in Ohio, andrepresentatives of national nursing facilitytrade associations and consumer advocacyorganizations. In this report I present myobservations and reflections, based on thesesources of data and on less formalconversations with numerous otherindividuals. The statements presented inquotation marks are direct quotes frominterviewees.

Research Questions

I asked the following questions duringthe structured interviews:

Are nursing facility admissiondirectors reluctant to accept new residentsunless the resident or a surrogate has clearlegal authority to voluntarily consent toadmission? If so, to what extent and howdoes this reluctance influence actual nursingfacility practices?

To the extent that a problem exists,how do hospital discharge planners deal withit? If there are delays in the transfer ofindividuals from the hospital to a suitablenursing facility, how do these delays affectthe various actors medically, financially, andlegally?

In practice, how are evaluations madeconcerning the decision-making capacity ofindividuals seeking admission to nursingfacilities? What process is followed and who

makes these decisions? What substantivestandards are used for this evaluation?

To the extent that legal uncertaintyabout the voluntariness issue exacerbates riskapprehension among nursing facilities andhospitals, and this apprehension is reflectedin changed practice, has there been asignificant impact on the number ofguardianships initiated and awarded solely orprimarily to authorize someone specific whocan legally voluntarily consent to nursingfacility admission for decisionallyincapacitated persons? If so, who actuallyinitiates and pays for these extraguardianship proceedings, and who becomesthe guardian? Is the result unnecessaryand/or premature guardianships, thuscounteracting the autonomy-enhancing intentof current residents' rights laws?

To the extent that nursing facilities'legal apprehensions bring about sociallyundesirable outcomes regarding the care andplacement of vulnerable individuals, whateducational, public policy, and other types ofinterventions might be appropriate to addressthis problem?

Legal Anxieties and Implications for Practice

Most of the participants from nursingfacilities expressed anxiety about the legalityof admitting individuals whose legaldecision-making status is not clearly



delineated: that is, persons who are seriouslycognitively and/or emotionally impaired butwho have not been judged incompetent andwho have no willing, available familymembers or friends to act as surrogatedecision maker ("unbefriended" persons).When any willing and available familymember (of any degree of relationship) orfriend can be located, facilities almostinvariably accept that person automatically assurrogate decision maker for the resident.They do not inquire into the source of thatperson's formal authority, if any (and usuallythere is none). This practice is not enshrinedin written protocols but is followed almostuniversally by long-term care professionals.

Lacking such a "warm body" with atleast sufficient decision-making capacity(defined by one admissions officer as theability "to put an X on a piece of paper"),contemporary nursing facilities are uneasy.Their anxieties stem from uncertainty notonly about the legal validity of the admissionitself, but also about potential legaldifficulties in obtaining payment (includingthe filing of Medicaid eligibility applicationscorrectly and on time), handling otherfinancial matters, and obtaining consent forthe initiation or discontinuation of specificmedical interventions for the resident in legallimbo. Such interventions include, forexample, transfers to acute facilities foremergency treatment or removal of aventilator or artificial feeding tubes. Today'ssurrogates may disappear from the picturetomorrow as they die, become incapacitatedthemselves, or decide that the needs of anincreasingly aging, demented resident exceedtheir own abilities and tolerance for stress.Some nursing facilities still use blanket

written consent-to-treatment forms at thetime of admission, but such a practice makesit even more necessary to accuratelydetermine the resident's decisional capacityand/or the surrogate's authority at that earlypoint.

Respondents reported that nursingfacilities formerly were willing to actinformally in the best interests ofincapacitated unbefriended individuals, butnow tend to be considerably more sensitiveto perceived liability considerations. Manynursing facility administrators describedthemselves as "paranoid" about decisionalcapacity and informed consent for a varietyof reasons: federal OBRA provisionsrequiring that the resident's chart indicate thedesignated person to contact regarding theexercise of that person's rights; publicityabout the PSDA and advance directives ingeneral; anxieties that regulatory agencysurveyors will act inconsistently andunpredictably; and the omnipresentexaggerated but sincere fear of the "daughterfrom California" who will suddenly show upand complain that "Dad shouldn't have beenallowed to wander." This feeling isespecially intense when the potentialresident, even if not mentally capable ofmaking such decisions, actively objects toinstitutional placement.

Most administrators and their staffsunderstand intellectually that regulatoryand/or civil liability repercussions in thisarea are rare. When they materialize,however, these repercussions (or, equallyimportant, their threat) are disruptive andconsume time and resources. Severalinterviewees at nursing facilities were


initially cited by state surveyors for failing toidentify a specific surrogate in a resident'schart, and were instructed "simplistically" to"just find somebody for this guy." Thenursing facilities are made even moreuneasy, according to one ombudsmaninterviewee, by the reaction of numerousprobate judges; they are not happy to bebothered in the middle of the night with arequest for emergency authorization to dosomething to, or for, a resident who lacksboth decisional capacity and relatives.

Nursing facilities are mostapprehensive about admitting seriouslymentally ill or developmentally disabledpersons with violent, aggressive behavioralproblems--for example, those with apsychosis such as schizophrenia or a majormental disorder other than dementia. First,they are concerned about their ability to careproperly for such individuals in light ofavailable staffing and physical plantlimitations. Also, they are worried about thefuture possibility that they will need someoneto validly consent (over the resident'sobjection, if necessary) to the use of physicalrestraints, psychotropic medications, and/ortransfer to a more secure facility. Finally,they are concerned about the handling ofpayment and other financial matters.

Nursing facilities that cater largely orexclusively to dementia populations (those inwhich control of behavior to limit danger ismost challenging) usually insist most stronglyon clear identification of a surrogate decisionmaker before admitting a new resident.According to several nursing facilityadmissions officers interviewed for thisproject, this position is based at least in part

on experiences with hospital psychiatric unitsthat "refuse to accept" resident transfersunless a surrogate has been named in adurable power of attorney instrument orthrough a guardianship order. In this area theadmissions policies of many nursing facilitiesand hospitals may be legally questionable;the PSDA prohibits requiring an advancedirective as a precondition to a patient/resident's admission.14

Persons interviewed for this projectalso stated that it was usually more difficultto transfer incapacitated unbefriendedindividuals from their own homes to anursing facility than from a hospital to anursing facility. Reasons include nursingfacilities' concerns about preadmissionscreening and annual resident review(PASARR) and about completing Medicaideligibility applications in timely fashion. Insome communities, physicians on the medicalstaff of the local hospital sometimes ask thehospital's social service personnel for help inattending to those details on behalf ofcommunity-dwelling patients who needadmittance to a nursing facility.

Financial Influences

The general legal skittishness amongnursing facilities seems to be translated intoadmissions practice to varying degrees,depending on how fully occupied a facilityhappens to be on a given day--that is, howcompetitive a facility needs to be in order tofill its revenue-producing beds. Legal fearsoften may be expressed as a pretext forfinancial considerations. "Adaptability," saidone hospital social service director, "is afunction of present census." Adaptability also



depends on the availability of someone whois willing and able to sign an admissionscontract and/or Medicaid application thatguarantees payment (and who can grantaccess to the applicant's financial records sothat financial eligibility for this means-testedprogram can be verified). In the finalanalysis, said the social service director,"admissions are a business decision," and"we are not mom-and-pops anymore."

In Ohio in 1996, total nursing facilityoccupancy stood at 91.8 percent; the exactproportion varied widely across facilities.Today, largely because of the success offederal requirements for screening potentialresidents for mental health and retardationproblems,15 state home- and community-based Medicaid waiver initiatives such asOhio's PASSPORT program,16 andprospective utilization review requirementsof private long-term care insurance policies,more older people with difficulties inperforming activities of daily living (such asbathing and dressing) can live outsidenursing facilities.17 Few are admittedunnecessarily or prematurely, at least directlyfrom the community. (Below, under"Implications," I discuss the problem ofphysicians and managed care case managerswho recommend an older person's placementin a nursing facility too readily afterhospitalization.)

In recent years, in addition to thesefactors, certificate of need requirements havebeen loosened and venture capital hasbecome more easily accessible, leading tomore building of nursing facilities, assistedliving units, and subacute entities. As aresult, additional beds have been created and

the nursing facility industry has becomeincreasingly competitive. One of the primarycustomers to be cultivated in such acompetitive environment is the hospitaldischarge planner, who strongly influencesthe flow of post-hospital consumers and ofthe dollars that follow them. Dischargeplanners, in turn, have a symbioticrelationship with nursing facility admissionsofficers; these professionals need to workconstructively with each other and thus havea strong incentive to do so.

Facilities with a significant number ofbeds to fill often manage to overcome theirmisgivings about applicants' legal statusmuch more readily than those which enjoythe luxury of waiting lists. Facilities in theformer category tend to employ a much morelenient working definition of decisionalcapacity. They rely more readily on theapplicant's own signature during a "lucid"moment than do their fully occupiedcounterparts. (They claim, however, thatthey continue to worry and ask questionsabout the legal ramifications of the residentsthey have admitted in this condition.)

Thus, according to several of myinterviewees, the most dependent and mostvulnerable individuals sometimes are placedas a last resort in nursing facilities of themost dubious quality, because such providersare the most likely to temper their concernsabout an unbefriended individual's legalstatus--and their own capacity to properlycare for that individual--in order to fill (andpay for) their beds. These facilities are "mostwilling not to stand on technicalities,"according to one ombudsman, when theindividual has already been certified eligible


for Medicaid or has another definite sourceof financial coverage for services. The"hungriest" nursing facilities may eveninitiate the Medicaid application process fora new resident; other facilities insist thathospital social service departments orcommunity case managers shoulder thisresponsibility.

These "hungry" facilities are wellknown to hospital discharge planners.Although planners are frequentlyuncomfortable with such placements, theycan take solace in the fact that ultimately"every applicant gets in somewhere." Forespecially undesirable unbefriended persons,such as older individuals with alcohol-relateddementia and associated behavioralproblems, specialized facilities in distantlocations may be needed for placement.

Conversely, many of the best localfacilities can afford to be more selectiveabout admissions. Therefore they act mostconservatively in restricting access to personswith clearer legal status; that is, they do notaccept applicants who lack an availablefamily member or friend to act as present orfuture surrogate. The most conservativefacilities, usually those with the longestwaiting lists, even may (illegally) require athird party to sign the admissions contracteven if the applicant is not mentallyimpaired, in a move to avoid futuremanagement problems.

Several consumer advocatesinterviewed for this project observedcynically that when nursing facilities resistadmitting an individual without a specificsurrogate decision maker, they publicly

justify their conduct on grounds of residents'rights and "company policy." They do notclaim to act from concern about their ownliability risk or because they simply prefernot to admit particular categories of personswho are likely to demand an inordinateamount of work and attention. As onenursing facility admissions director admitted,it is "just easier" for the facility to deal withsituations when an identified surrogate is inplace: "That way, we know the paperworkwill be done."

This picture varies slightly in the caseof some comprehensive continuing careretirement communities that offer multiplelevels of care. In such settings, when aperson living in a community's independentor assisted living section develops an acutemedical problem requiring hospital admissionfollowed by transfer to nursing facility-levelcare, that community's nursing facility maybe willing to accept the person (who isalready known to the staff) despite a legallyuncertain status and a healthy institutionalcensus. Even in this situation, however, thenursing facility ordinarily attemptsimmediately to formally clarify legaldecision-making authority for that resident.(See the discussion of guardianship below.)

Impact on the Parties

The practices described above exert atangible, direct effect on the various partiesinvolved. For the older individual who needstimely placement in a nursing facility, delaysof days or weeks--and, in a few extremecases, months--have been reported, not as aregular occurrence but frequently enough tobe notable. During these delays, the



individual fails to receive appropriate nursingfacility care and is unnecessarily exposed topotential infections and the other risksattending a stay in a hospital. These undulyextended hospitalizations ordinarily arecompensated very inadequately underMedicare's prospective payment system ofdiagnosis related groups (DRGs);18 thereforethe financial repercussions for hospitals(which vary widely in this regard) may beserious.

Understandably, the hospital alwayshas strong financial, ethical, and clinicalincentives to expedite appropriate placementof individuals. One hospital social servicedirector told me about the patient whoseunnecessarily extended stay in 1995 cost herhospital over $100,000. No one had legalauthority to sell the property that made thepatient ineligible for Medicaid and thereforeunable to be placed in a nursing facility.Numerous versions of this story wererepeated in hospitals across Ohio. Mosthospitals today have a computer system thattracks medically "avoidable patient days" aswell as the department (such as socialservices) that is responsible for those money-losing days. In this way they can preciselydirect the pressure to move the patient out.

Financial considerations aside, otherfactors also motivate hospitals (as well asnursing facilities) to seek legally definitiveresolutions to dilemmas involving mentallyimpaired, unbefriended persons. When theindividual's decisional capacity and/or thesafety of the treatment plan are in doubt,hospital staff members are often tempted tocircumvent the moral dilemmas by "lettingthe judge decide." Defensive medicine also

may play a role. If a hospital fears potentialcivil liability for injuries suffered by anincapacitated but unadjudicated person whomit improperly sends home to an unsafeenvironment, it has a reason to seekguardianship so that the individual can beplaced in what is believed to be a moresecure, more protective nursing facility.

Nursing facilities must deal chieflywith their apprehensiveness about potentialregulatory liability. If state surveyors findthat the provision of proper care for amentally incapacitated resident has beenhampered by the absence of a guardian orother legally authorized decision maker, theregulatory agency probably will require thefacility to move to establish guardianship. Inthis way the facility can obtain informedconsent to the care that it has withheld untilthis time. Some consumer advocates gavetheir own accounts (or those of volunteerguardians or long-term care ombudsmen) ofresidents who had been denied electivemedical treatments that would have enhancedtheir quality of life (such as correctivecataract surgery or hernia repair) becausethere was no legally authorized surrogatedecision maker to consent to theseinterventions. Surveyors are not consideredlikely to exert pressure toward guardianshipas long as the quality of care rendered to anincapacitated resident seems acceptable. Thisexpectation, however, gives only smallcomfort to most nursing facilities, especiallyin the absence of official, practical guidancefrom government agencies.


Current Strategies

In response to the financial, legal, andother incentives cited above, most hospitalshave (often reluctantly) devised systems forinitiating guardianships for mentallyimpaired, unbefriended patients who lack alegally authorized surrogate decision maker,and whose placement in a nursing facility isdelayed as a result. Operating such a systemmay be expensive for the hospital, butgenerally it is extremely cost-effective. Itreduces the losses that the hospital otherwisewould incur as a result of such patients'unnecessarily extended, prospectively pricedhospital stays.

Various surrogate delineation systemsare currently used for incapacitatedunbefriended persons who need placement ina nursing facility. These systems vary inseveral important details, which address thefollowing questions:

• W h o a c t u a l l y i n i t i a t e s t h eguardianship? Who acts as theguardian?

• Who pays for the processing of theguardianship petition? Who pays forthe conduct of the guardianship itself?

• What is the extent of the guardian'sauthority?

In one common model, the hospitalfiles the guardianship petition (often initiallyon an emergency basis19 and later as anindefinite order); provides and pays aprofessional team consisting of a psychiatrist,a psychologist, and a social worker toevaluate the individual's decisional capacity,

submit its report to the court, and testify ifnecessary; and hires a private attorney toserve as guardian. Usually the retainedattorney accepts authority over financialmatters while procuring and paying (on thehospital's behalf) for appointment of anonprofit or proprietary social service agencyby the court as the person's guardian. Inreturn for the efficiency achieved intransferring the individual to a nursingfacility, the hospital bears the associatedexpenses (unless the individual involved hassufficient assets from which the guardianmay be paid by court order). In addition, thehospital is exposed to possible charges of atleast the appearance of conflict of interest.

In another model, hospitals--as wellas home health agencies, area agencies onaging, case managers, and others concernedwith the proper placement of theunbefriended individual--work with volunteerguardianship programs to initiate and conducta judicially appointed surrogate decision-making arrangement. Volunteer guardianshipprograms have been established by a varietyof charitable organizations (often withreligious or civic affiliations); theseprograms supply someone who is willing andable to be appointed as an incapacitatedperson's surrogate decision maker when noother suitable candidate is available.

In Ohio, volunteer guardianshipprograms presently operate in (among otherplaces) Montgomery,20 Franklin,21 Richland,and Cuyahoga Counties. These programs arefunded from a variety of sources such aslocal hospital associations (although thisarrangement may create an apparent conflictof interest), area agencies on aging, county



indigent guardianship funds,22 fundsgenerated by litigation filing fees or intereston attorneys' trust accounts, United Wayallocations, contributions by religiouscongregations and civic groups, privatedonations, and grants.

Several states have created publicguardianship systems through legislation. Inthese systems, government agencies, orprivate agencies under contract or otherarrangement with the government at the stateor local level, are available for courtappointment as the decision-making agent oflast resort for the unbefriended in need offormal surrogacy. In Maryland, for example,the director of the state or local office onaging may be appointed guardian in suchsituations.

Many of these systems are limited andspecialized. In Ohio, for example, publicguardianship is available only for childrenand for decisionally incapacitateddevelopmentally disabled adults, but not foradults who are severely cognitively and/oremotionally impaired because of dementia,depression, psychosis, or any reason otherthan developmental disability.

In the absence of one of thearrangements outlined above, it may beexceedingly difficult to obtain a guardianshipfor a mentally impaired, unbefriended elderin need of nursing facility placement.Attorneys are reluctant to agree to providetheir services without assurance that they willbe compensated reasonably. Private,proprietary guardianship corporations makethemselves unavailable for appointment whenan individual's estate lacks sufficient assets

to pay their fees. Private individuals, such aspersonal friends, clergy members, and fellowcongregants, may be intimidated--and thusunwilling to accept guardianship--by theperceived heavy responsibilities of makingdifficult personal and financial decisions foran increasingly demented, oftenimpoverished individual over what could bea long period. In addition, infrequent butinvariably well-publicized scandals about aguardian's misuse of funds or abuse of award always discourage recruitment ofguardians in the locality of the scandal.

Accurate national figures on theextent and nature of contemporaryguardianship are difficult to obtain. Many(though not all) of the professionalsinterviewed for this project agreed thattoday, only a relatively small number ofinappropriate or premature guardianships areimposed involuntarily on older persons. Inother words, the great majority of myinterviewees maintained that guardianship formentally incapacitated unbefriendedindividuals is sought only as a last resort.

Hospitals initiate a significant numberof guardianships, as a preliminary to nursingfacility placement, directly from emergencydepartments. (Some of the larger hospitalsnow assign full-time social workers for thispurpose.) In many of these cases the familyneeds the individual's Social Securityretirement23 check and therefore keeps caringfor the person inadequately at home,bringing her to the emergency department forspecific problems, taking her home again,and repeating the cycle until the hospital isethically compelled to intervene. Suchintervention is most likely when the


emergency squad has brought the individualinto the hospital emergency department andhas given the social service department a"social concerns" report on the individual'spoor living conditions.

A guardianship petition is usuallypursued because of a specific, immediateneed for a third party (such as a health careprovider and/or financial institution) tolegally clarify legitimate decision-makingauthority. For example, a resident of adementia unit may attempt to sign himselfout of a nursing facility; as a result, thefacility may be concerned about its ownpossible legal exposure.

Otherwise, especially for indigentpersons who have no resources to supportsurrogate decision-making services, decisionmaking for the incapacitated unbefriendedtends to be a haphazard affair. Suchmuddling through may be marked by relianceon the emergency exception to informedconsent to eventually justify medicalintervention. Important decisions may bepostponed dangerously, foregone altogether,or (at the other extreme) made by default inthe form of maximum medical intervention.In another scenario, health care and humanservice providers often act eitherindependently or in combination assurrogates, but often covertly and hesitantly.

Issues of Decision-Making Capacity

All of these approaches to surrogatedecision making are based on the premisethat a particular individual needs a surrogatebecause of personal incapacity. Nursingfacility admissions personnel, hospital

discharge planners, case managers, and evenconsumer advocates make this determinationin various ways before initiating aguardianship petition or other surrogatearrangement for an unbefriended nursingfacility candidate. The procedure appears tobe totally unstructured and unstandardized; itvaries greatly across nursing facilities andeven among staff members in the samefacility, and from one candidate foradmission to another.

This picture of capacity assessmentfor voluntary admission, which emergedfrom my interviews, is consistent with thesituation described in a recent study. Thefollowing passage is quoted from that study,which examined the assessment of residents'capacity to discuss advance medicaldirectives:

[W]hen nursing home staff wereprobed about how they determinewhether residents have the decision-making capacity to discuss advancedirectives and make end-of-lifetreatment choices, no clear process orprocedure was described; rather avariety of techniques were used todetermine residents' capacity todiscuss advance directives...[T]herewas no ...explicit standard, and thejudgment is left to the admissionsstaff...In no case was there a formalpolicy and process of assessingcognitive ability or decisionalcapacity. Instead, the process ofassessing residents' capacity...is non-standard and often left to staff whohave little procedural guidance from



PolicyImplications

either institutional policy or the legalsystem.24

Adult Protective Services

Persons interviewed for this projectwere ambivalent about the role of adultprotective services (APS)25 in nursing facilityadmissions for the incapacitatedunbefriended. Many believe that the APSagencies' potential helpfulness is severelylimited by a number of factors. First,insufficient resources create an excessiveburden on caseworkers. Second, persons whoare already residents of nursing facilities arebeyond the jurisdiction of APS on the theorythat they are in a protective environment. (Insome counties, however, APS will continueto pursue a guardianship for a hospitalizedunbefriended individual when the petitionwas filed while the person was living in thecommunity.) Third, many APS agencies havea widely shared reputation for not followingthrough on the submission and processing ofMedicaid eligibility applications forunbefriended individuals whom they havesigned into nursing facilities.

Some interviewees also accusedcertain APS agencies of seeking guardianshipand institutional placement too readily,without adequately exploring less restrictivealternatives; yet it is difficult to generalizewhen each county's APS system functionsindependently. In fact, many intervieweescited as a major weakness the APS agencies'lack of communication and of coordinatedpolicies and procedures.

In the next section I discuss publicpolicy implications of guardianship and its

several permutations and alternatives, as wellas the process of evaluating decisionalcapacity. I also outline private initiatives forprotecting the incapacitated unbefriendedwho are nursing facility candidates, withoutsacrificing their autonomy-based rights.

Themes

The key public policy challenge inthis arena is the need to achieve a balancebetween bureaucratic meddling, which iswell-meaning but paternalistic andcounterproductive, and excessive andunrealistic insistence on the hypotheticalautonomy rights of an extremely vulnerablepopulation. Incapacitated unbefriendedindividuals have neither true autonomy toempower them nor true beneficence toprotect them; they live in constant danger offalling between the cracks of our modernsocial, ethical, and legal systems. At greatestrisk are those who are so seriously impairedphysically and/or mentally as to require carein a nursing facility.

How the policy challenge will beaddressed and how a balance will be soughtwill depend largely on how we resolve twophilosophical questions with very practicalconsequences: (1) What is the essentialcharacter of the modern nursing facility--health provider, mental health provider,and/or homelike residence? (2) Should we be


guided mainly by a medical/therapeuticmodel, which emphasizes protection of thevulnerable, dependent individual againstharm and the maximization of that person'sphysical and mental well-being, or by alegal/rights model, which emphasizessubstantive and procedural due processsafeguards against exploitation and abuse?

Alternatives

With these overarching themes inmind, we may outline the principalalternatives. Most prominently, governmentmight encourage and facilitate theappointment of guardians to act as official,legally authorized decision-making surrogatesfor incapacitated unbefriended candidates fornursing facility admission. This approachcould resolve clearly, in a timely (and evenpossibly proactive) fashion, the legal statusof those admissions, as well as the legalstatus of the decisions made on the residents'behalf at that time and later.

Approximately 25,000 adultguardianship cases are adjudicated in Ohioeach year.26 Ohio law,27 in keeping with theleast restrictive alternative (LRA) principleand the statutes of all other states,28 permitscourts to appoint guardians with limited orpartial powers tailored to the ward's actualcognitive and/or emotional deficits. Even so,courts create virtually all guardianships ascomplete transfers of legal authority from theward to the guardian. In the same vein,probate courts are empowered to appointtemporary guardians in situations where theward may be expected to regain decisionalcapacity. They tend, however, not to favorthis option and to appoint permanent

guardians instead. The ward then mustsubsequently seek termination ofguardianship.

Most of the professionals interviewedfor this project suggested that theoverwhelming majority of currentguardianships are necessary both for thewelfare and protection of the nursing facilityapplicant/resident and to safeguard the riskmanagement interests of the facility and otherservice providers. (They made this pointwithout detracting from the desirability ofmore independent, more holistic geriatricassessments of potential wards to inform theprobate courts.) Their key concern is the fateof unbefriended nursing facility candidateswho ought to have guardians but are likely tosuffer discrimination and mistreatmentbecause of the difficulties in obtaining thisneeded source of protection. A typicalcomment was made by one long-term careombudsman; her office will not acceptappointment as guardian for a nursing facilityresident because of conflicts of interest. Inthe past few years, however, when a residenttruly has needed a surrogate and no betteralternatives exist, her office has moved fromautomatic opposition to all guardianshippet i t ions toward faci l i ta t ing theaccomplishment of guardianship orders(including identification of personsappropriate to be appointed).

A l t h o u g h t h e f o l l o w i n grecommendations were not endorsed by all ofthe interviewees, and although someexpressed considerable misgivings, thesubstantial majority advocated governmentactions that would encourage and facilitatemore guardianships in the following ways:



• By legislatively increasing countyindigent guardianship funds.29 Themain purpose would be to inducemore private attorneys and others toserve as conscientious (not merelyformal) guardians for incapacitatedunbefriended persons--includingpotential and actual nursing facilityresidents--who lack substantialincome and assets. The setting ofspecific fees for paying appointedattorneys from indigent guardianshipfunds, rather than relying onindividual payment decisions by eachprobate court, may be helpful in thisregard.

• By streamlining and economizing theguardianship process ("forgetting thered tape"). The current expensive andcumbersome process, in addition toits other shortcomings, frightensaway many low-income families ofpersons eligible for Medicaid, thusmaking those persons unbefriended.A more "user- friendly" guardianshipprocess might encourage more, andmore sustained, family involvement.In addition, many nursing facilitiescomplain that although they willaccept an applicant once aguardianship petition has been filed(on the almost always fulfilledassumption that the petitioneventually will be granted), "theprocess takes much too long."

• By empowering APS agencies toinitiate selectively (that is, not inorder to "dump" a troublesomeindividual) guardianships for persons

who are in a hospital or nursingfacility.

• By instilling more uniformity amongprobate courts in dealing with theseissues in place of the current"independent, inconsistent fiefdoms"prevailing in county probate courts.(Examples include differences inhandling indigent guardianship fundsand court investigators' varyingdegrees of receptivity to health careproviders' requests for assistance.)This uniformity would include moreof a case management and oversightrole for the probate courts. (In late1996, however, the Summit Countyprobate court called a meetingexpressly to advise health and humanservices providers not to continuecalling the court investigator for helpin managing the daily problems of theunbefriended.)

• By encouraging the courts' greater useof limited or partial guardianship.(Currently a significant percentage ofall limited guardianships created inOhio are awarded to Advocacy andProtective Services, Inc. [APSI] fordevelopmentally disabled wards.)Interviewees also recommendincreasing the courts' use ofguardianship ad litem30 when, forexample, formal surrogacy is neededonly for a specific decision or forseveral decisions grouped togetherwithin a short period, such as acutehospitalization during nursing facilityresidency.


• By recognizing a limited "good faith"exception to the usual informedconsent requirements in the case of"obv ious ly" incapac i t a tedunbefriended nursing facilityapplicants and residents.

In Ohio, public guardianship systemshave been legislatively created only forchildren31 and developmentally disabledadults.32 In 1971 the Ohio legislatureestablished procedures for nonprofitcorporate guardianship of citizens of any agewith developmental disabilities severeenough to impair decision-making capacity,as well as for unique trusteeship/protectorship programs.33 The Associationfor Retarded Citizens was the driving forcebehind this enabling legislation: Parents ofdevelopmentally disabled children wereworried about what would happen to thosechildren after their own deaths. Presently thestate contracts to APSI34 the surrogacyfunction created by this legislation.

Public policy makers, including theDepartment of Aging, should study thedevelopmental disabilities model, as well aspublic guardianship systems in other states,to determine what elements (if any) might beapplicable to the situation of incapacitatedunbefriended elders in need of nursingfacility admission. Special attention might begiven to the trusteeship/protectorship statusas an intermediate step between totalguardianship and complete neglect. Theinvestigators in such a study, however, mustkeep in mind that the actual extent andeffectiveness of public guardianshipprograms probably depend more heavily onthe resources that a jurisdiction appropriates

for its operation (which generally are grosslyinsufficient) than on the terms of the enablinglegislation. In addition, any new systemestablishing a contractual relationship with aprivate agency to perform publicguardianship functions should avoid APSI-like conflicts of interest. It can do so bystrictly separating the guardianship agencyfrom direct supervision by its state funder,thereby maintaining a more appropriatearms-length relationship.

If actions to encourage and facilitateprivate, volunteer, and/or publicguardianships are successful, guardianshippetitions and orders will proliferate.Consequently nursing facilities will be evenmore reluctant to admit incapacitatedunbefriended applicants without an explicitlyauthorized legal surrogacy arrangement. Issuch a state of affairs desirable, as opposedto alternatives that might better promote thewelfare of the unbefriended without undulycompromising their autonomy? To answerthis policy question, sponsored researchwould be useful; the data could tell uswhether the risk of abuse, neglect, orexploitation of nursing facility residents istied in any way to the absence of formalguardians (and, if so, how), or whetherresidents with families and friends areequally likely to be mistreated or ignored.

At least two states (New York andCalifornia) have created an official butnonjudicial alternative to guardianship forunbefriended persons with mentaldisabilities. The California statute35 createsan administrative mechanism for approvinginterventions in nursing facilities fordecisionally incapacitated residents with no



legally authorized surrogate; this statute hasbeen upheld against constitutional attack.36

Harvard University geriatricianMuriel R. Gillick has proposed thedevelopment and dissemination of a new in-house surrogate system, which would userelevant nursing facility staff members tomake decisions for incapacitatedunbefriended residents.37 There is nocompelling reason why some version of thissystem could not be employed in makinginitial decisions about admitting particularapplicants. In a similar situation, attorneyBruce Winick has urged use of informaladministrative methods, rather thanadversarial judicial proceedings, to determinea person's capacity to voluntarily consent topsychiatric hospitalization.38 Gillick'sproposal is guided by the medical/therapeuticmodel mentioned above, which givesprimacy to the ethical principle ofbeneficence.

Gillick's proposal, however, has beencriticized by a leading national nursingfacility consumer advocate whose thinking isbased on the legal/rights model. Thisadvocate believes that this proposal is ladenwith real and apparent conflicts of interest,and prefers a high degree of roledifferentiation for nursing facility staffmembers.39 This criticism was not shared byall of the long-term care ombudsmen Iinterviewed: Those who serve rural areasespecially, where "everybody has knowneverybody forever," thought it "made naturalsense" for staff members to act as surrogatedecision makers of last resort.

Many existing volunteer guardianshipprograms are commendable; even so, it isprobably unrealistic to expect this sector tobe developed and funded well enough to fillthe burgeoning need. By definition, theseprograms have only minimal paid staff anddepend heavily on individual volunteers'time, generosity, and reliability. Theseelements are finite and largely unpredictablein a population of persons who tend to beolder themselves. Individual volunteers comeand go for numerous reasons. Whileparticipating in the program, they must becontinually educated, reeducated, andsupervised--no small task. The volunteerguardians' willingness and ability to "pushthe system where necessary" has beenquestioned as well.

In Ohio, to exacerbate this instabilityof volunteer guardianship programs (otherthan for children or developmentally disabledadults), probate judges may appoint asguardian only a real person, as opposed to anagency.40 Thus, when an individual in avolunteer guardianship program ceasesparticipating for any reason, the agencysponsoring the program may need to returnto court to seek appointment of a newindividual volunteer as guardian. Many(though not all) volunteer guardianshipprograms have recommended empoweringthe probate courts to appoint an agency asguardian; in this way the comings and goingsof particular volunteers may be treated as aninternal, administrative agency matter ratherthan necessitating additional time in court.

Some of the interviewees criticizedcurrent public guardianship programs forpolicies rejecting involvement in the cases of


unbefriended individuals with any financialassets. In many cases, these disqualifyingassets are too modest to attract willingprivate guardians; as a result, the personwith some but not many assets remains inlegal limbo.

In another possible public policyapproach, the concept of advance medicalplanning would be aligned more closely withthe needs of incapacitated, unbefriendedprospective nursing facility residents. Muchattention has been given to the use of proxydirectives, especially durable powers ofattorney, as a less restrictive alternative toguardianship. Under these directives, anadult who is currently capable of makingdecisions can name in advance a proxy orsubstitute to act as decision maker if he orshe becomes incapacitated.

The chief problem for the populationdiscussed here is that its members have nowilling, able persons to name as their futuredecision-making agents in a durable power ofattorney document, or else that the personswhom they named as agents while they werestill capable are now unavailable orunwilling. According to one legalcommentator, this difficulty could beovercome if the state legislature authorizedcurrently capable adults to appoint nonprofit(i.e., charitable) organizations as theirsurrogate decision makers to assumeauthority in case of the principal's futuredecisional incapacity. These organizationseither could be social service providers orcould be set up specifically to act as asurrogate decision maker of last resort. Thisapproach would prevent the time, expense,administrative hassle, and emotional turmoil

of a formal guardianship proceeding; itwould permit the affected individual tomaintain some personal autonomy; and itwould promote beneficent treatment of theindividual--for example, by providing aprotective but efficient means of securingappropriate admissions to nursing facilities,and treatment in those facilities, for thosewho cannot speak on their own behalf.

Assessments of individuals' decisionalcapacity before initiation of formalguardianship proceedings are improvised,unguided, and inconsistent. For this reasonsome of the interviewees called for a greaterdegree of legal and professional guidance forcapacity evaluators. Standardization ofcapacity evaluations promises moreobjective, more reliable results, althoughquantitative measurements cannot completelytake the place of clinical judgment.

Much of the nursing facilities'hyperdefensive activity stems from anxietyabout possible regulatory liability andsanctions; therefore many intervieweessuggested more concerted training andinformation dissemination for state nursingfacility surveyors and other relevantregulators. Training would includeinformation about OBRA, the PSDA, stateresidents' rights laws, surrogate decisionmaking, and the informed consent doctrine ingeneral. Such government-sponsoredcontinuing education would produce greaterconsistency and predictability in enforcinglegal requirements; more honest and morerealistic proactive communication on thesepoints between regulators and nursingfacilities; and ultimately a climate of legalcomfort in which nursing facilities would feel



freer to develop and implement more creativeapproaches to the clinical and ethical needsof incapacitated, unbefriended applicants andresidents.

Nongovernmental Initiatives

Among nongovernmental initiatives,none of my interviewees mentioned thepotential role of institutional ethicscommittees (IECs) in helping nursingfacilities to handle difficult admissionsquestions. This may be because involvedprofessionals conceptualize this subject as amatter of pragmatic risk management ratherthan as an area of serious ethical and policydilemmas. Such a view is too narrow;nursing facilities should be encouraged toexplore the possible contributions of IECsregarding help with formulating institutionalpolicy, consultation on individual cases(concurrent or retrospective), and educationof the nursing facility staff and others,including families.

Many interviewees called for morecommunication and education amonghospitals, nursing facilities, and home careagencies about their respective environmentsand constraints. In 1996, to address what iswidely perceived as a lack of mutualappreciation and understanding, at least oneOhio long-term care ombudsman establisheda working group to deal with behavioralproblems in hospitals and nursing facilities,including those pertaining to admission,transfer, and discharge of residents. Thisproject was received enthusiastically.Ombudsmen's offices also can provide aninvaluable service by conducting in-service

training on numerous topics related tonursing facility admission.

Almost all of the intervieweesproposed actions to educate physicians aboutpost-hospital care of the chronically disabled,including incapacitated unbefriended patients.As discussed earlier, most dischargeplanners, nursing facility admissions staffmembers, and consumer advocates believethat programs to divert people fromunnecessary institutionalization have beenlargely effective. Yet these persons alsocharge that many physicians are poorlyinformed about these less restrictive long-term care alternatives and about level-of-careissues in general. Consequently, theycomplain, physicians on the whole are notvery helpful in handling the problemsassociated with nursing facility admissionsfor incapacitated unbefriended individuals;more formal training in this area isimperative.

Similarly, many intervieweesobserved that managed-care case managersoften have limited backgrounds in long-termcare; thus they tend to equate the entire areawith nursing facilities. This increasinglypowerful profession needs more educationabout the range of long-term care settingsand opportunities.

Interviewees also endorsed moreeducation for other service providers,particularly nursing facility administratorsand staffs. Long-term care ombudsmen andother resident advocates said that providersdo not know enough of the relevant law.Often, as a result, residents' wishesregarding treatment are ignored ("We're in


Conclusion

doubt, so we'd better provide the full-courtpress"), advance directives areoverinterpreted, or other apparent refusals oftreatment serve as an excuse to abandontroublesome residents rather thanpersonalizing their care.

All of the interviewees deplored thelack of consistency and predictability inpractice and policy. They recommended thecreation of a process through which thepersons most concerned with the problemsraised by nursing facility care for thispopulation could discuss from their multipleperspectives the issues outlined in this report.The goal would be to formulate andultimately disseminate a set of broadlyacceptable policies and procedures. In thisway, a solid core of common expectationsand uniform national approaches relating tothe welfare and rights of this especiallyvulnerable and expanding group could begenerated and promoted to service providers,regulators, and consumer advocates. Thiscollaborative, consensus-building processcould be supported by both public andprivate sources (such as foundations).

The population of unbefriended,severely and chronically mentallyincapacitated older individuals in need ofnursing facility-level care will continue togrow. As a result of increased lifeexpectancy and other demographic trends,the elderly will constitute an increasing share

of the American population. By 2030, aboutone-fifth of our population will be at least 65years old, compared with barely 13 percenttoday and less than 10 percent in 1970. Theproportion of the population age 85 and olderis expected to rise from 1.4 percent in 1996to 2 percent in 2010 and to almost 5 percentby 2050.

Some members of this group willnever marry or have children, will havechildren who themselves are geriatric whennursing facility admission becomes pertinentfor the parent, will have children who livefar from them, or will outlive spouses andchildren and will fail to execute advancedirectives while still capable of makingdecisions. In addition, many persons withsevere mental disorders, especially whenaccompanied by serious behavioral problems,begin their long-term care with familysupport but eventually "wear out" thepatience--and hence the involvement--ofrelatives and friends, who abandon them. Infact, the absence of a satisfactory informalsupport system in the home is one of themost important risk factors in the need fornursing facility admission.

Timely advance instruction and/orproxy directives may alleviate some of thecurrent decision-making problems. Yet nomatter how much public and professionalattention is given to this topic, only a smallproportion of persons will take advantage ofthis opportunity.

A significant percentage of futurenursing facility residents will be admitted forshort-term rehabilitative or subacute stays(for example, following surgery). Many of



these persons will be capable of making allor most of their own decisions about medicaland financial issues: if not at the time ofadmission, then shortly thereafter. Manyother residents, however, probably will beseverely cognitively and/or emotionallyimpaired; as we increase our ability to keeppeople from permanent institutionalplacement as long as possible, those whoeventually are admitted for the remainder oftheir lives will have much more severe acuitythan did nursing facility residents in the past.As residents live longer and suffer morechronic illnesses, more decisions requiringappropriate decision makers will benecessary over extended periods.

Initial decisions about nursing facilityplacement will need to be made andimplemented within increasingly shortenedperiods, as cost containment pressurescontinue to contract the process of dischargeplanning into a "whirlwind." We cannotignore the imperative for public andinstitutional policies, procedures, andeducational strategies that are both definitiveand creative and that take into account thepertinent clinical, legal, ethical, and financialconsiderations.


References

1. See, e.g., Ohio Rev. Code chapter 5122.

2. 42 Code of Federal Regulations§482.43(b)(6).

3. Under Ohio’s guardianship statute, OhioRev. Code §2111.01(D), “‘Incompetent’means any person who is so mentallyimpaired as a result of a mental or physicalillness or disability, or mental retardation, oras a result of chronic substance abuse, thathe is incapable of taking proper care ofhimself or his property...” Under Ohio’sAdult Protective Services statute, Ohio Rev.Code §5101.60(I), “incapacitated personmeans a person who is impaired for anyreason to the extent that he lacks sufficientunderstanding or capacity to make and carryout reasonable decisions concerning hisperson or resources, with or without theassistance of a caretaker... Reasonabledecisions are decisions made in daily livingwhich facilitate the provision of food,shelter, clothing, and health care necessaryfor life support.”

4. 42 United States Code §§1395r-i(3)(a)-(h)(Medicare); 1396r(a)-(h) (Medicaid).

5. 42 Code of Federal Regulations §483.10.

6. Pub. L. No. 101-508, §§4206, 4751, 104Stat. 1388, codified at 42 United States Code§§1395cc, 1396a (1990).

7. See, e.g., Ohio Rev. Code §3721.13(B)(“A sponsor may act on a resident’s behalf toassure that the home does not deny theresident’s rights...”). 42 Code of FederalRegulations §483.10(B)(3) provides that, “Inthe case of a resident adjudged incompetentunder the laws of a State by a court ofcompetent jurisdiction, the rights of theresident are exercised by the personappointed under State law to act on theresident’s behalf.” Federal law continues, at§483.10(B)(4), “In the case of a resident whohas not been adjedged incompetent by theState court, any legal-surrogate designated inaccordance with State law may exercise theresident’s rights to the extent provided byState law.”

8. 42 United States Code §§12181-12189(1990).

9. 29 United States Code §794.

10. See Wagner v. Fair Acres GeriatricCenter, No. 94-1275 (3d Cir. March 15,1995).

11. 42 Code of Federal Regulations§483.12(a)(2); Ohio Rev. Code §3721.16.

12. Ohio Rev. Code §2111.01(A).

13. 494 U.S. 113 (1990). See also Estate ofCassara v. State of Illinois, 853 F.Supp. 273,279 (N.D.Ill. 1994) (“[A] voluntaryinstitutionalization may involve a restraint ofpersonal liberty sufficient to trigger the dueprocess clause”).

14. §§4206(f)(1)(C) and 4751(A)(2)(C), Pub.L. No. 101-508.



15. 42 Code of Federal Regulations Part 483,Subpart C (implementing §1919(e) of the1987 Omnibus Budget Reconciliation Act,requiring the states to implementpreadmission screening and annual residentreview--PASARR--of the need for admittingor retaining individuals with mental illness ormental retardation in nursing facilities thatare certified by Medicaid). The requirementfor annual review was subsequently repealedby Pub. L. No. 104-315 (1996). PassID isthe Ohio evaluation procedure, resulting in aone-page summary, that is done as part of thePASARR process.

16. Ohio Rev. Code §5101.75 et.seq..

17. Nearly 13 percent of the elderly who livein the community have functional limitations.An estimated 9.2 percent of communityelderly are limited in one or more ADLs. Anadditional 3.6 percent of community elderlyhave no ADL limitations, but are unable toperform one or more instrumental activitiesof daily living (IADLs) (i.e., using thetelephone, doing light housework, preparingown meals, shopping, and managing money)becasue of a health problem. The prevalenceof functional limitations increasesdramatically with age. Among communityresidents age 85 and older, 36 percent haveat least one ADL or IADL limitation. Nearly12 percent of community residents age 85 orolder have limitations in 3 or more ADLs,compared with less than 2 percent of thosewho are age 65-74. Harriet L. Komisar,Jeanne M. Lambrew, and Judith Feder,LONG-TERM CARE FOR THEELDERLY: A CHART BOOK 20. NewYork: Commonwealth Fund (Dec. 1996).See also Shahla A. Mehdizadeh, Suzanne R.

Kunkel, and Robert A. Applebaum,PROJECTIONS OF OHIO’S OLDERDISABLED POPULATION. Oxford, OH:Scripps Gerontology Center, MiamiUniversity (Ohio Long-Term Care ResearchProject) (Dec. 1996).

18. 42 Code of Federal Regulations Part 412.

19. Ohio Rev. Code §2111.02.

20. CHUMS, Inc., 2611 Wayne Avenue,Dayton, OH 45420.

21. Franklin County Volunteer GuardianshipProgram, Central Ohio Area Agency onAging, 174 East Long Street, Columbus, OH43215.

22. Ohio Rev. Code §2111.51.

23. Social Security Act, title 2 (Old Age andSurvivors Insurance).

24. Elizabeth Bradley, Leslie Walker,Barbara Blechner, and Terrie Wetle,“Assessing Capacity to Participate inDiscussions of Advance Directives inNursing Homes: Findings from a Study ofthe Patient Self Determination Act,” 45JOURNAL OF THE AMERICANGERIATRICS SOCIETY 79, 82 (1997).

25. Ohio Rev. Code §5101.60. UnderSection (B), “Adult means any person sixtyyears of age or older with [Ohio] who ishandicapped by the infirmities of aging orwho has a physical or mental impairmentwhich prevents him from providing for hisown care or protection, and who resides inan independent living arrangement.” Under


Section (N), “Protective services meansservices provided by the county departmentof human services or its designated agency toan adult who has been determined byevaluation to require such services for theprevention, correction, or discontinuance ofan act of as well as conditions resulting fromabuse, neglect, or exploitation. Protectiveservices may include...guardianship services,and placement services...”

26. Judith Y. Brachman, Ohio Department ofAging, “Mediation in Adult Guardianship:State Application--Ohio,” submitted to TheCenter for Social Gerontology, Ann Arbor,MI (Dec. 13, 1996), at 4 (based oninformation supplied by Julia Nack, CentralOhio Area Agency on Aging).

27. Ohio Rev. Code §2111.02.

28. See generally Marshall B. Kapp, “EthicalAspects of Guardianship,” 10 CLINICS INGERIATRIC MEDICINE 501, 502, 508(1994).

29. Ohio Rev. Code §2111.51.

30. Ohio Rev. Code §2111.23.

31. Ohio Rev. Code §2151.353, .413, .414.

32. House Bill 290 (1971), codified at OhioRev. Code §5123.55-59.

33. Id. See also John M. Seelig and SandraR. Chestnut, “Corporate LegalGuardianship: An Innovative Concept inAdvocacy and Protective Services,” 31SOCIAL WORK 221 (1986).

34. 3200 Riverside Drive, Columbus, OH43221

35. Calif. Health and Safety Code §1418.8.

36. Rains v. Belshe, 32 Cal.App.4th 157, 38Cal. Rptr. 185 (Cal.App. 1 Dist. 1995).

37. Muriel R. Gillick, “Medical Decision-Making for the Unbefriended Nursing HomeResident,” 1 JOURNAL OF ETHICS,LAW, AND AGING 87 (1995).

38. See Bruce J. Winick, “How to HandleVoluntary Hospitalization After Zinermon v.Burch,” 21 ADMINISTRATION ANDPOLICY IN MENTAL HEALTH 395(1994).

39. Iris C. Freeman, “One More FaultySolution is Novelty Without Progress: AReply to ‘Medical Decision-Making for theUnbefriended Nursing Home Resident’,” 1JOURNAL OF ETHICS, LAW, ANDAGING 93 (1995).

40. See Ohio Rev. Code §2111.10.

Documents

The voluntary status of nursing facility admissions