questions that arise in making decisions about services

Chapter 4

Questions That Arise in MakingDecisions About Services

CONTENTSPage

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .DETERMINING THE DECISIONMAKING CAPACITY OF

INDIVIDUALS WITH DEMENTIA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Criteria for Determining Decisionmaking Capacity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .The Concept of Decision-Specific Decisionmaking Capacity . . . . . . . . . . . . . . . . . . . . .Who Should Determine Decisionmaking Capacity? . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Methods of Enhancing Decisionmaking Capacity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Implications for an Effective System To Link People With Dementia to Services . .

MAKING SURROGATE DECISIONS ABOUT SERVICES FORINDIVIDUALS WITH DEMENTIA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Who Should Make Surrogate Decisions About Services? . . . . . . . . . . . . . . . . . . . . . . . . .What Criteria Should Guide Surrogate Decisions About Services? . . . . . . . . . . . . . . . .Implications for a System To Link People With Dementia to Services . . . . . . . . . . . .

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148148152155156CONCLUSION ....: . . . . . . . . . . . . . . . . .: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Chapter 4

Questions That Arise in Making Decisions About Services

INTRODUCTIONLinking people with dementia to services in-

volves many important decisions-what servicesare needed, who will provide them, who will pay forthem, and, perhaps most importantly, whether theperson will be cared for at home or in a nursing homeor other residential care facility. Because of theircognitive impairments, people with dementia gener-ally become less capable of making decisions forthemselves. Their diminished decisionmaking ca-pacity l raises difficult questions for individuals andagencies involved in linking them to services. Thischapter considers two of these questions:

●

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How should the decisionmaking capacity ofpeople with dementia-in this context, theircapacity to make decisions about services-bedetermined?How should decisions about services be madefor people with dementia who are not decision-ally capable? In other words, who should be thesurrogate decisionmaker and what criteriashould guide the decisions?

Questions about how to determine whether indi-viduals are capable of making decisions and abouthow to make decisions for those individuals who aredecisionally incapable have been analyzed anddebated at length in contexts involving other popula-tions, including mentally ill, unconscious, and

rminally ill people, and other decisions, particu-telarly decisions about the use of life-sustainingmedical treatments and about participation in re-search. So far, however, such questions have notreceived much attention in contexts involving peo-ple with dementia and everyday decisions abouthealth care, long-term care, social, and other servicesthat such people may need (93,327).

At the policy level, questions about how todetermine demented individuals’ decisionmaking

capacity and how to make decisions about serviceson behalf of those demented individuals who are notcapable of making such decisions themselves areoften obscured by overriding concerns about the lackof sufficient services and funding for services.2 Atthe level of individual case managers and others whoarrange services for people with dementia, thequestions are often obscured by the practical diffi-culties of locating and arranging services in acomplex service environment. They may also beobscured by pressures on case managers to completeservice arrangements quickly (e.g., because theclient is in an unsafe situation, the client’s informalsupport system is overwhelmed, the case managerhas many other clients, or the hospital wants theclient discharged ‘yesterday’ ‘).

It is important to recognize that although ques-tions about how to determine a demented person’sdecisionmaking capacity and how to make decisionson behalf of decisionally incapable demented clientsare often obscured, such questions are inherent in theprocess of linking people with dementia to services.Whenever the linking process goes beyond publiceducation and information and referral to include theactual arranging of services, these questions areunavoidable. 3 Every individual or agency that ar-ranges services for people with dementia necessarilyanswers the questions in one way or another-eitherby following explicit procedures for determiningdecisionmaking capacity and making decisions onbehalf of clients who are decisionally incapable orby making implicit judgments. If Congress man-dated a system to link people with dementia toservices, the agencies that constituted the systemwould confront the problems of determiningg deci-sionmaking capacity and designating surrogate deci-sionmakers whenever they helped to select orarrange services for people with dementia.— —

IA~ di~w~ la~r, ~ c~ptw distingllishes beW~ tie terms “decisiomnaking capacity,” “decisionally capable,” ~d “d=isio~~incapable” on the one hand and the terms “comw@cy,” “competent” ~d “incowtent>” on the o~er. The terms “COmWtenWS” “co~etm~and “incompetent” are used only to refer a person’s legal status. The terms “decisionmakm“ g capacity, “ “decisionally capable” and “deaslonallyincapable” are used to refer to a person’s capacity to make decisions in a more general sense. These terms are unfamiliar to many people and their usesometimes results in cumbersome sentence constructions, but OTA believes that these terms are more accurate than other available terms that might beused to represent the concepts being discussed. OTA apologizes to readers who find the terms unfamiliar or their use contorted.

TI’he lack of sufficient services and funding for services is a topic that was addressed in OTA’s 1987 report losing a MilZion Mnak: Confrontingthe Tragedy of Alzheimer’s and Other Dementias (831).

3~~ n~ for a _ systa t. g. ~yond public edu~tion ad info~tiorl ~d ref~ in order to s-e certain typt% of dementia patients ~dtheir caregivers is discussed inch. 3.

–139-

140 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Most agencies that link people with dementia toservices have no explicit policies or procedures fordetermining their clients’ decisionmaking capacityor for making decisions about services on behalf ofclients who are decisionally incapable. In theabsence of explicit policies and procedures, casemanagers and others who arrange services in theseagencies must act on their own judgments aboutwhether their clients are capable of making deci-sions about services and about how such decisionsshould be made for clients who are not decisionallycapable. Some of these case managers and othersmay not be aware of the implications of thesejudgments, and some of them may not even beconscious of making the judgments.

Judgments about a person’s decisionmaking ca-pacity and about how decisions should be made forpeople who are decisionally incapable involvefundamental legal rights and complex legal andethical issues, some of which are discussed in thischapter. If an agency, case manager, or otherindividual that arranges services for people withdementia is not aware of the legal rights and legaland ethical issues involved in decisionmaking, thereis little likelihood that those rights and issues will beadequately considered when decisions about serv-ices are made.

In the context of linking people with dementia toservices, one major objective in determiningg deci-sionmaking capacity is to ensure that people who aredecisionally capable will be given the opportunity tomake decisions about services themselves and thatpeople who are not decisionally capable will beprotected from decisions that may be harmful tothem. The ultimate objective in designating asurrogate decisionmaker and establishing criteria toguide surrogate decisions is to ensure that the bestpossible decisions are made for people who are notdecisionally capable. Establishing explicit agencypolicies and procedures for determining decision-making capacity and for making surrogate decisionswould not guarantee the achievement of theseobjectives. Nevertheless, establishing explicit poli-cies and procedures could help focus agencies’ andcase managers’ attention on the important legalrights and legal and ethical issues at stake in

decisionmaking and thereby increase the likelihoodthat those rights and issues would be consideredwhen decisions about services are made.

This chapter discusses certain concepts and dis-tinctions that are important in thinking about how todetermine people’s decisionmaking capacity andhow to make decisions on behalf of people who arenot capable of making decisions themselves. Thechapter also discusses some approaches that agen-cies and individuals that arrange services for peoplewith dementia might use to determine their clients’decisionmaking capacity and to make decisionsabout services for clients who are decisionallyincapable. Some of the concepts, distinctions, andapproaches discussed here are derived from analysisand debate about other types of decisions (e.g.,decisions about the use of life-sustaining medicaltreatments and participation in research) and aboutother client populations (e.g., mentally ill, uncon-scious, or terminally ill people), and they may ormay not be directly applicable to decisions aboutservices for people with dementia. Other concepts,distinctions, and approaches discussed here arederived from recently completed and ongoing re-search and demonstration projects that address theproblems of decisionmaking for people with demen-tia more directly.4

The chapter discusses many unresolved issues.For some of the issues, there is, as yet, no agreementabout the correct theoretical resolution. For otherissues, there is agreement about the correct theoreti-cal resolution but little understanding about how toapply it in the context of linking people withdementia to services.

If Congress mandated a national system to linkpeople with dementia to services, it could requirethat the agencies that constitute the system haveexplicit policies and procedures for determiningtheir clients’ decisionmaking capacity and for mak-ing decisions for people who are not capable makingdecisions themselves. The concepts, approaches,and issues discussed in this chapter are relevant tothe content of such policies and procedures and thequestions that would have to be answered indeveloping them.

d~ese projects ~CIUde: 1) studies m&r the “Personal Autonomy in Long-Term Care Initiative” funded by the Retirement Rese=h Foudation(327); 2) a study of hospital discharge planning for elderly people with diminished decisionmaking capacity, funded by the Florence V. BurdenFoundation and the Retirement Research Foundation (181,241); and 3) a project funded by the Ittleson Foun&tion and the Retirement ResearchFoundation to train ‘temporary treatment guardians” and to refine and disseminate a‘ ‘values history questionnaire” that allows individuals to documenttheir preferences and values so that if surrogate decisionmaking becomes necessary in the future, it will reflect the individual’s wishes (252,802).

Chapter 4-Questions That Arise in Making Decisions About Services ● 141

DETERMINING THEDECISIONMAKING CAPACITY OFINDIVIDUALS WITH DEMENTIA

The extent to which individuals with dementia arecapable of making decisions about services varies.Some people with dementia, especially in the earlystages of their disease, are quite capable of makingsome or all decisions about services for themselves.Others, in the opinion of everyone who knows them,are incapable of making even simple decisions.Many people with dementia fall somewhere betweenthese extremes.

Under U.S. law, adults are presumed to be com-petent unless and until factual evidence that refutesthe presumption of competency has been presentedto a court and the court has declared the personincompetent (945). Adults who have not beenadjudicated incompetent have a legal right to makedecisions about their medical care, where and howthey will live, and how they will manage their ownaffairs. The vast majority of people with dementiahave not been adjudicated incompetent. A 1986survey of nursing homes in New York State found,for example, that under 3 percent of the homes’residents had been declared legally incompetent(609), even though at least 40 percent of the State’snursing home residents have dementia (217).

Since individuals with dementia who have notbeen adjudicated incompetent are presumed underU.S. law to be competent, they have a legal right tomake their own decisions. Nevertheless, some peo-ple with dementia who have not been adjudicatedincompetent are, in the opinion of virtually everyonewho knows them, incapable of making importantdecisions about their lives. This chapter uses theterms ‘‘competent,” “incompetent,” and “compe-tency” only to refer to a person’s legal status. It usesthe terms “decisionally capable,” “decisionallyincapable,’ and ‘decisionmaking capacity’ to referto a person’s ability to make decision in a moregeneral sense.

People who make judgments about dementiapatients’ decisionmaking capacity-physicians, otherhealth care and social service professionals, hospitaldischarge planners, case managers, service provid-

Photo credit: Bill Adams

Some individuals with dementia are quite capable ofmaking decisions about services for themselves,

especially in the early stages of this disease. Surrogatedecisions should not be substituted for an individual’s owndecisions unless it is clear that the individual is incapable

of deciding for herself or himself.

ers, and others-often err by automatically assum-ing that any person with a diagnosis of a dementingdisease is incapable of making decisions and byturning immediately to the person’s family for asurrogate decisions Many commentators agree thatthis practice is wrong and that surrogate decisionsshould not be substituted for a person’s owndecisions unless it is clear that the person isdecisionally incapable (4,27,93,139,210,301,417,671,901,945). On the other hand, some peoplewho make judgments about dementia patients’decisionmaking capacity err in the opposite direc-tion by assuming that a person with dementia isdecisionally capable when he or she is not. Manycommentators also agree that this practice is wrongbecause it fails to protect the decisionally incapableperson from potentially harmful decisions(93,1 19,176,183,288,671).

Criteria for Determining DecisionmakingCapacity

Legal scholars and others have distinguishedthree general types of criteria for determiningindividuals’ decisionmaking capacity:

5L&e~~e, ~nY of me sate @k forces and cofi~=~ tit ~ve s~di~ tie problem of dementia beg~~~ a s~tement that people with dementiagradually lose their decisionmakm“ g capacity, butthenjump immediately to adiscussionofmethods for surrogate decisioout any discussion of methods for determining individuals’ decisionmakm

~g, (9%531,713) leaving“ g capacity or supporting their ability to make decisions for themselves.

142 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

● status criteria,. outcome criteria, and. fictional criteria (27,671).

If one uses status criteria to determine a person’sdecisionmaking capacity, the determination is basedon the person’s status in a specific category such asdiagnosis, consciousness, or age. If one uses out-come criteria to determine a person’s decisionmak-ing capacity, the determination usually is based onthe “correctness” or “reasonableness” of the per-son’s decision as judged by other people. If one usesfictional criteria, the determination is based onsome aspect of the individual’s functioning orpotential functioning in a decisionmaking situation(27,671).

Some of the physicians, case managers, and otherswho make judgments about the decisionmakingcapacity of people with dementia are probably noteven conscious of making the judgments, and it isvery unlikely that many of them consider whethertheir judgments are based on status, outcome, orfunctional criteria. Anecdotal evidence suggests,however, that many of these individuals rely moreon status and outcome criteria than on functionalcriteria.

Physicians, case managers, and others who auto-matically assume that any person with a diagnosis ofa dementing disease is unable to make decisions areusing a status criterion—a diagnosis of a dementingdisease. As noted earlier, the use of this criterion tojudge a person’s decisionmaking capacity is notappropriate, because people with dementing dis-eases vary greatly in their cognitive abilities, andmany of them retain sufficient cognitive abilities tomake decisions for themselves, especially in theearly stages of their disease.

Physicians, case managers, and others who use the“correctness” or “reasonableness” of an individ-ual’s decision to judge the individual’s decision-making capacity are using outcome criteria. If acognitively impaired person’s decision conflictswith a recommendation or decision of the individ-ual’s physician, case manager, hospital dischargeplanner, or some other caregiver, the person’sdecision may be called “unreasonable” and auto-matically regarded as evidence that the person isdecisionally incapable. If a cognitively impairedperson’s decision does not conflict with the recom-mendations or decisions of his or her caregivers, the

issue of the person’s decisionmaking capacity maynot even arise. (386,901,947).

Two different arguments are made about theappropriateness of using outcome criteria such as the“correctness” or ‘‘reasonableness” of a person’sdecision to judge the person’s decisionmakingcapacity. On the one hand, some argue, competentadults have a legal right to take risks and makefoolish decisions so long as their decisions do notencroach on the rights of others or violate the law(41,93,181,539); people with cognitive impairmentsshould not be deprived of that right. On the otherhand, some argue, physicians and other health careand social service professionals have a legal andethical obligation to protect vulnerable people fromdanger and neglect; if these professionals think thata cognitively impaired person’s decision threatensthe person’s safety, they are obligated to question it(41,93,181). A middle ground that reconciles thesetwo arguments, in theory at least, is the view that ifa cognitively impaired person makes a decision thatseems unreasonable to others, the decision shouldtrigger a careful evaluation of the person’s decision-making capacity but should not result in an auto-matic judgment that the person is decisionallyincapable (945).

Physicians, case managers, and others who usesome aspect or aspects of an individual’s function-ing in a decisionmaking situation to judge theindividual’s decisionmaking capacity are usingfunctional criteria. Two commentators discussingdischarge planning for elderly people with dimin-ished decisionmaking capacity have defined func-tional decisionmaking capacity in terms of a per-son’s ability to comprehend the possible conse-quences of a plan he or she proposes (181). Othercommentators have identified four fictional cri-teria for deterrnining a person’s decisionmakingcapacity. Those criteria are listed below in the orderof increasing strictness:

1. making a choice;2. evidencing an understanding of relevant infor-

mation and issues;3. rationally manipulating the relevant informa-

tion; and4. in addition to 2 and 3 above, appreciating the

nature of the situation (29).

The few courts that have considered criteria fordetermin.mg decisionmaking capacity have gener-ally adopted functional criteria rather than status or

Chapter 4--Questions That Arise in Making Decisions About Services . 143

Photo credit: Rush-Presbyterian/St. Luke’s Medical Center, Chicago, IL

A person with dementia maybe capable of making some decisions but not others.

outcome criteria (27). Most commentators also favorthe use of functional criteria to determine a person’sdecisionmaking capacity, primarily because suchcriteria pertain directly to the person’s actual orpotential functioning in a decisionmaking situation(27). Functional criteria for determining a person’sdecisionmaking capacity are more ambiguous thanstatus or outcome criteria, however. For that reason,a person who uses functional criteria has to exercisemore independent judgment than a person who usesstatus or outcome criteria and may therefore needmore training to make these determinations.

At least one observer has suggested that cognitiveassessment tests, such as the Mini-Mental StateExamination (218), could be used as an objectivemeasure of decisionmaking capacity (613). Thatidea has intuitive appeal, but OTA is not aware ofany research that compares people’s cognitive abil-ity as measured by their scores on a cognitive

assessment test and their decisionmaking capacity asmeasured by some other standard, and anecdotalevidence suggests that such scores and decisionmak-ing capacity may not be highly correlated. More-over, in some cases, people’s scores on cogntiveassessment tests are not even an accurate indicator oftheir cognitive abilities. Sometimes, the tests incor-rectly identify people as cognitively impaired whoare cognitively normal; this situation is particularlylikely to occur when the tests are used for ethnicminority people and people with very little formaleducation (831,865).

Although commentaries on criteria for determin-ing people’s decisionmaking capacity favor the useof functional criteria over status or outcome criteriaas a general principle, it is important to note thatmost of the discussion on this topic has occurred inthe context of decisions about life-sustaining medi-cal treatments and about participation in research.


Moreover, discussion has often focused on peopleother than those with dementia (e.g., mentally ill andterminally ill people). The implications of usingfunctional rather than status or outcome criteria todetermine dementia patients’ capacity to makeeveryday decisions about health care, long-termcare, social, and other services have received verylittle attention. Thus, it is unclear whether there areany special considerations in the use of functionalcriteria for this purpose and whether there may becertain functional criteria that are especially appro-priate for this population.

The Concept of Decision-SpecificDecisionmaking Capacity

A concept that has emerged in the legal andethical debate about determining g decisionmakingcapacity is the concept of decision-specific capacity.That concept is that a person’s capacity to make adecision may differ for each decision. A person maybe capable of making a simple decision carryinglittle risk but not capable of making a more complexdecision carrying significant risks (176,178,945).Furthermore, “a person maybe [capable of making]a particular decision at a particular time, undercertain circumstances, but [incapable of making]another decision, or even the same decision, underdifferent conditions” (93).

The concept of decision-specific decisionmakingcapacity is widely advocated and accepted (27,93,177,671,672), but discussion about the applicationof the concept has occurred in the context of singledecisions about the use of life-sustaining medicaltreatments or participation in research. So far, verylittle has been written about the application of thisconcept in the context of situations that call formaking multiple interrelated decisions about aperson’s living arrangements and the use of varioushealth care, long-term care, social, and other servicesover time.

Applying the concept of decision-specific capac-ity in situations involving multiple interrelateddecisions over time may be considerably moredifficult than applying the concept in situationswhere a single decision is needed. As an example,consider the dilemma raised in the following in-stance. A cognitively impaired man who requiressupervision and personal care decides that he wantsto remain at home with homemaker assistanceinstead of entering a nursing home. The man’s

physician, the case manager, and others agree thatthe man is capable of making that decision, and sothe case manager arranges for homemaker services.Subsequently, however, the man refuses to pay orrepeatedly fires the homemakers who are sent to helphim. What should be done in a case like this-whena cognitively impaired person refuses to implementhis or her own decision?

Several commentators have pointed out that somepeople who are capable of making a decision are notnecessarily capable of implementing it (i.e., theyhave decisional autonomy but not executional au-tonomy), and that such people need assistance inimplementing their decisions (139,179,384). Theapplication of that principle is clear with respect topeople who are physically unable to implement theirdecisions, but it is less clear in the case of acognitively impaired person who refuses to imple-ment his or her own decision. Does it make sense toconclude that such a person is decisionally capablewith respect to one decision and decisionally incapa-ble with respect to other decisions that are needed toimplement that decision? Raising this dilemma isnot intended to dispute the validity of the concept ofdecision-specific decisionmaking capacity. Rather,it is intended to illustrate the difficulty that a casemanager or other arranger of services might encoun-ter in seeking to apply the concept to decisions aboutservices for people with dementia.

Who Should Determine DecisionmakingCapacity?

Many commentators believe that a person’s deci-sionmaking capacity should be determined withoutcourt involvement whenever possible and that thecourts should be called on as a last resort only if anirreconcilable disagreement about a person’s deci-sionmaking capacity arises among those who arecaring for the person (177,253,539,945). Such deter-minations are better made without court involve-ment, they say, in part because court proceedingstend to be expensive, time-consuming, and emotion-ally stressful for everyone involved. In addition,many months may pass before a court hears a caseand issues a decision, and applying the concept ofdecision-specific decisionmaking capacity would bevirtually impossible if many decisions about aperson’s care had to be made over time, and a courthearing had to be held to determine the person’scapacity to make each decision.

Chapter 4-Questions That Arise in Making Decisions About Services ● 145

If, as a general practice, determinations of peo-ple’s decisionmaking capacity are to be madewithout court involvement, some person or bodyother than the courts has to make them. Somehospitals and nursing homes have established ex-plicit institutional policies that delineate proceduresto be followed in making decisions about the use oflife-sustaining medical treatments, and their policiesoften include procedures for determining patients’decisionmaking capacity (475,833). In addition,some hospitals and nursing homes have an ethicscomrnittee--a multidisciplinary group establishedto address ethical dilemmas that arise within thefacility and advise staff about difficult treatmentdecisions. Hospital and nursing home ethics com-mittees sometimes assist facility staff in determiningwhether patients are capable of making decisionsabout their medical care (833).

Agencies that arrange services for people withdementia could establish explicit policies, not unlikethe institutional policies just mentioned, that woulddelineate procedures to be followed when decisionsabout services are needed for clients of questionabledecisionmaking capacity. The agency policies couldspecify procedures for determiningg such individu-als’ decisionmaking capacity, including instructionsabout who should be involved in making thedeterminations.

Some agencies that arrange services for peoplewith dementia might be able to adapt the model ofa hospital or nursing home ethics committee fordetermining their clients’ decisionmaking capacity(179). OTA knows of one community mental healthcenter in Spokane, Washington, that has establisheda multidisciplinary team consisting of a psychiatrist,a nurse, and a social worker to determine its clients’decisionmaking capacity (689).6 Other agenciescould use a similar approach.

In judging individuals’ legal competency, courtsfrequently rely on the opinions of psychiatrists andpsychologists. Some of the agencies OTA studiedthat arrange services for people with dementia—e.g., community mental health centers—have psy-chiatrists and psychologists as employees or con-sultants. These agencies might assign a psychiatristor psychologist the primary responsibility for deter-mining their clients’ decisionmaking capacity.

Agencies that arrange services for people withdementia also might assign case managers theprimary responsibility for determiningg their clients’decisionmaking capacity. OTA has heard differentopinions about the wisdom of this approach, andsome people’s opinions depend on the educationalbackground, experience, and training of the casemanagers who would be performing the function.Citing the important legal rights and legal andethical issues involved in judgments about anindividual’s decisionmaking capacity, some peopleargue that only those case managers who havereceived special training in determining decision-making capacity--either in addition to or irrespec-tive of their having a certain educational backgroundand/or experience--are qualified to determine theirclients decisionmaking capacity. Other people arguethat case managers with certain types of educationalbackground and experience (e.g., those with amaster’s degree in nursing or social work and someamount of experience) are qualified to determinetheir clients’ decisionmaking capacity. Still otherpeople argue that case managers are not qualified todetermine individuals’ decisionmaking capacity re-gardless of the case managers’ educational back-ground, experience, and/or any special training theymay have received.

It is important to note in this context that in manyand perhaps most agencies that arrange services forpeople with dementia, case managers are the oneswho determine their clients’ decisionmaking capac-ity, even though there may be no explicit agencyrecognition that they are performing that functionand some of the case managers may not aware thatthey are doing so. Some people might argue that thecurrent situation is satisfactory, although OTA hasnot heard that opinion expressed (except withrespect to case managers with certain educationalbackground and/or experience).

The educational background and experience ofindividuals who function as case managers inagencies that arrange services for people withdementia varies greatly, but to OTA’s knowledge,the question of how education and experience affectcase managers’ ability to determine people’s deci-sionmaking capacity has not been systematicallyinvestigated. It is reasonable to believe, though, thatwhatever their background, case managers andothers who arrange services for people with demen-

~e Elderly Services Program of the Spokane Community Mental Health Center is deseribed in box 8-C in ch. 8.

146 . Confused Minds, Burdened Families: Finding Help for People With Alzheirner’s & Other Dementias

Photo credit: Eastern Area Agency on Aging, Brewer, ME

In many agencies that arrange services for people withdementia case managers are the ones who determine theirclients’ decisionmaking capacity, even though there may

be no explicit agency recognition that they areperforming that function.

tia would benefit from training in determiningdecisionmaking capacity. The form such trainingshould take and who should provide it are unclear,however.

A resource center established at the University ofMinnesota in 1988 might be able to develop trainingmaterials about determiningg decisionmaking capac-ity for case managers and others who arrangeservices for people with dementia. This center, theLong-Term Care Decisions Resource Center, wasestablished by the Federal Administration on Agingto conduct research and to provide State units onaging and area agencies on aging (AAAs) withtraining and technical assistance related to decision-making in long-term care. The Minnesota center isaddressing a variety of topics related to long-termcare decisionmaking, including client assessment,care planning, and other case management func-tions. In relation to its work on these topics, thecenter might be able to develop training materialsabout methods of determining decisionmaking ca-pacity and about legal and ethical issues involved injudgments about an individual’s decisionmakingcapacity. Such materials could be used to train casemanagers in AAAs and then be disseminated toother agencies.

Methods of Enhancing DecisionmakingCapacity

Several commentators believe that physicians,other health care and social service professionals,hospital discharge planners, case managers, and

others have an obligation to support and enhance thedecisionmaking capacity of people with dementia(93,177,945). They also have an obligation to makethe most of the variability in such individuals’decisionmaking capacity to allow individuals tomake decisions for themselves to the greatest extentpossible (93,177,945).

The decisionmaking capacity of a person withdementia is diminished first and foremost by cogni-tive deficits caused by the person’s dementingdisease. Since the cognitive abilities of a person witha dementing illness typically vary from day to dayand even in the course of the same day, the person’sdecisionmaking capacity may be greater at sometimes than others. To allow the person to make hisor her own decisions about services to the greatestextent possible, physicians and other health care andsocial service professionals must be available andwilling to make the most of periods of relativelucidity (93,181).

In addition to being affected by the person’sdementing disease, the decisionmaking capacity ofa person with a dementing disease may be dimin-ished by a variety of other factors that are more orless susceptible to interventions by physicians orothers who are caring for the person. Such factorsinclude medications, coexisting illnesses, stress, andunfamiliar environments that exacerbate the per-son’s cognitive deficits, as well as sensory impair-ments that interfere with the person’s ability toreceive information relevant to decisions (93,414,945).Other factors include language barriers that interferewith communication; the lack of information aboutpossible living arrangements and services, the formin which information about services is presented,and the ways in which questions about services andliving arrangements are framed (4,179,386,798).Eliminating or compensating for factors that ad-versely affect decisionmaking capacity is one way toenhance a person’s decisionmaking capacity andsupport the person’s autonomy.

Unfortunately, the decisionmaking capacity ofmost individuals with dementia deteriorates overtime. Another way to enhance the decisionmakingcapacity and support the autonomy of such individu-als, therefore, is by anticipating their mental deterio-ration and encouraging them to take advantage oflegal arrangements that allow them to documenttheir wishes or preferences with respect to certaintypes of decisions, so these wishes and preferences

Chapter G-Questions That Arise in Making Decisions About Services ● 147

can inform future decisions by surrogate decision-makers. Such legal arrangements include the follow-ing:

●

●

●

trust agreements, which allow individuals todocument their wishes for the management oftheir financial affairs in the event that theybecome decisionally incapable;living wills, which allow individuals to docu-ment their preferences about the use of life-sustaining medical treatments in the event thatthey become decisionally incapable; anddurable powers of attorney, which allow indi-viduals to designate someone to make healthcare and/or financial decisions for them (i.e., asurrogate decisionmaker) if the individual be-comes decisionally incapable.

Many commentators have noted the importance ofthese legal arrangements and have emphasized thatphysicians, other health care and social serviceprofessionals, service providers, hospital dischargeplanners, case managers, and others who work withpeople with dementia and their families have aresponsibility to encourage the patients and theirfamilies to have the necessary documents executedwhile the person is still decisionally capable(38,137,180,253,539,644,945).

If agencies that arrange services for people withdementia had explicit policies and procedures fordeterming their clients’ decisionmaking capacity,they could incorporate available methods for en-hancing decisionmaking capacity into their proce-dures. Implementing methods for enhancing deci-sionmaking capacity may be difficult, however,because the methods are often time-consuming; theydo not fit easily into the time constraints of thetypical hospital discharge planning process or situa-tions in which services must be arranged quicklybecause the patient and family are in crisis by thetime they come to the attention of the case manager(4,139,179,417,901).

The reason for enhancing individuals’ decision-making capacity is to allow people to make deci-sions for themselves to the greatest extent that theyare able. Efforts to preserve the autonomy ofindividuals with dementia have to be balanced,however, with a recognition that such individuals areoften decisionally incapable and therefore may need

protection from decisions that may be harmful tothem (119, 183,288). Designating someone to makedecisions about services for a person who is deci-sionally incapable is not depriving that person ofautonomy. In fact, allowing such a person to makedecisions for himself or herself may be morecorrectly construed as abandonment than as support-ing autonomy (41,417,547).

A full discussion of the difficult legal and ethicalconsiderations involved in supporting the autonomyof a person with questionable decisionmaking ca-pacity v. protecting the person from potentiallyharmful decisions is beyond the scope of this report.7

The main point here is that those seeking to supportautonomy must balance their efforts with the recog-nition of realistic limits on autonomy caused by theperson’s dementing disease (41,178,546). Striking abalance between supporting a decisionally capableindividual’s autonomy and protecting a decisionallyincapable person from potentially harmful decisionsoften requires subtle judgments on the part ofwhoever is determiningg the person’s decisionmak-ing capacity-an observation that again suggests theneed for training of the individuals who have tomake these judgments.

Implications for an Effective System To LinkPeople With Dementia to Services

As the preceding discussion points out, physi-cians, other health care and social service profes-sionals, hospital discharge planners, case managers,and others who are involved in arranging services forpeople with dementia sometimes simply assume thatanyone with a diagnosis of a dementing disease isdecisionally incapable, without carefully evaluatingthe person’s decisionmaking capacity. Furthermore,most agencies that arrange services for people withdementia do not have explicit policies and proce-dures for determining their clients’ decisionmakingcapacity. Judgments about clients’ decisionmakingcapacity in these agencies are frequently made bycase managers and others who may or may not beknowledgeable about methods for determiningg deci-sionmaking capacity or about the complex legal andethical issues involved in such judgments. (Some ofthese individuals may not even be aware that theyare making the determinations.)

Wor further discussion of these issues and considerations as they relate to decisions about serviees for people with dementi% the reader is mfemedto the summer 1987 issue of Generations, “Coercive Placement of the Elderly: Protection or Choice?” and the June 1988 supplement to TheGerontologist, “Autonomy in I.xmg-Term Care” (241,251).


If Congress mandated a national system to linkpeople with dementia to services, Congress couldrequire the agencies that were designated to consti-tute the system to have explicit policies and proce-dures for determiningg clients’ decisionmaking ca-pacity. The questions that would have to be ad-dressed by agencies in establishing such policies andprocedures include the following:

●

●

●

What criteria should be used to determinedecisionmaking capacity?Who should be involved in determining client’sdecisionmaking capacity?What procedures should be used to enhanceclients’ decisionmaking capacity while at thesame time protecting decisionally incapablepeople from potentially harmful decisions?

None of these questions is easily answered. Someof the possible answers discussed in the precedingsections were developed in discussion and debateabout determining decisionmaking capacity for otherclient populations and other types of decisions. Moreresearch and analysis is needed about procedures fordetermining decisionmaking capacity in people withdementia and in the context of decisions about thehealth care, long-term care, social, and other servicesthat may be needed for them. Trainin g aboutdetermining decisionmaking capacity could benefitcase managers and others who arrange services forpeople with dementia. Such training is especiallyneeded for case managers or other individuals whohave primary responsibility for determining theirclients’ decisionmaking capacity.

MAKING SURROGATEDECISIONS ABOUT SERVICES FORINDIVIDUALS WITH DEMENTIA

If an individual with dementia is decisionallyincapable, decisions about services must be made forthe individual. It is important to reemphasize,however, that making decisions for such a person isthe second step. The process of making decisionsabout services should begin with a presumption thatthe individual is decisionally capable. Only after thatpresumption is refuted should other people makedecisions for the person (946).

When decisions are made on behalf of an individ-ual who is decisionally incapable, someone or somegroup of people is chosen as the surrogate decision-maker, whether that choice is made explicitly or

implicitly. Furthermore, the surrogate decisions arebased on some criteria, whether those criteria areexplicit or implicit. When decisions about servicesare made for an individual with dementia, the choiceof a surrogate decisionmaker and the criteria forsurrogate decisions are probably more often implicitthan explicit. Nevertheless, who is chosen as thesurrogate decisionmaker and what criteria are usedfor surrogate decisions can have a profound impacton the life of the individual with dementia.

Who Should Make Surrogate DecisionsAbout Services?

As mentioned earlier, people who are decisionallycapable can designate someone to make decisions ontheir behalf through the legal mechanism of adurable power of attorney. In some States, peoplewho are decisionally capable also can designatesomeone to make decisions for them through anotherlegal mechanism-a living will. Very few peoplehave executed either a durable power of attorney ora living will. Moreover, the types of decisions thatcan be made with a durable power of attorney varyfrom State to State, and it is often unclear whether orto what extent a durable power of attorney authorizesthe designated surrogate to make decisions about thekinds of health care, long-term care, social, and otherservices that may be needed for a person withdementia. State living will laws that allow thedesignation of a surrogate decisionmaker generallyonly authorize surrogate decisions about the use oflife-sustainin g medical treatments and, in someStates, only for terminally ill individuals.

If a decision about services is needed for adecisionally incapable person with dementia and theperson has not formally designated a surrogatedecisionmaker, physicians, other health care andsocial service professionals, service providers, hos-pital discharge planners, case managers, and othersusually turn to the person’s family (if the person hasone). Available evidence, including a 1982 Harrispoll and a more recent study, indicates that mostpeople want a family member to make decisions forthem if they are not able to make the decisionsthemselves. The 1982 Harris poll found that 57percent of the 1,251 people interviewed nationwidesaid they wanted a family member to make impor-

tant medical decisions for them if they were notcapable of doing so themselves; about one-thirdwanted their doctor to make such decisions (476). Inanother, more recent study, 90 percent of the 40


elderly persons interviewed said they wanted afamily member or family members to make healthcare decisions for them if they were not capable ofdoing so themselves; the remaining 10 percentwanted their doctor, a lawyer, or a close friend tomake the decisions (322).

The 1982 Harris poll and the more recent studyboth focused on health care decisions, and althoughthe majority of respondents in both studies said theywanted family members to make surrogate decisionsfor them, the next largest number of respondents saidthey wanted their physician to make the decisions(322,476). Physicians are probably perceived bymost people as more qualified to make decisionsabout health care than about some of the other kindsof services that may be needed for individuals withdementia. No data are available, but it is likely thatif the studies had focused on decisions about socialand other nonmedical services, the preference forfamily members as surrogate decisionmakers wouldhave been even stronger.

Despite the fact that most people prefer to havefamily members make decisions for them if theybecome decisionally incapable, many States provideno legal authority for family members to make thedecisions unless the family member is designated asa surrogate decisionmaker by a durable power ofattorney or a living will, as just described (36,531,945).

As of April 1987, only 15 States had “familyconsent laws” (i.e., statutes that authorize familymembers to make decisions for relatives who aredecisionally incapable), although courts in 5 addi-tional States had ruled that family members couldmake such decisions (539,540). These family con-sent laws and court rulings generally only apply tocertain types of patients and certain types ofdecisions. The laws and court rulings in some Statesauthorize families to make decisions for a decision-ally incapable relative only if a physician hascertified that the person is terminally ill (540). Manyexisting family consent laws and court rulings onlyaddress decisions about life-sustaining medical treat-ments, and it is not clear whether they apply todecisions about the other kinds of health care,long-term care, social, and other services that maybeneeded for people with dementia.

In States that do not have family consent laws, thelegal rights and responsibilities of family membersand others in making decisions for decisionally

Photo credit:Maria P. Cordero-Aranda

Most people want family members to make decisions forthem if they are not capable of making the decisions

themselves.

incapable people are unclear. In these States and inmany of the States that already have family consentlaws, legislation is needed to clearly delineate theextent of, and limitations on, the decisionmakingauthority that is granted to family members andothers, including any limitations on the types ofdecisions that the law authorizes them to make. Thedesignation of surrogate decisionmakers, includingfamily members, for decisionally incapable peoplewith dementia will continue even in the absence ofsuch legislation, but State statutes that clearly definethe rights and responsibilities of family membersand others in making decisions for decisionallyincapable people and also delineate the types ofdecisions that a designated surrogate is and is notauthorized to make would create a firm legal basisfor determining who should make decisions aboutservices for decisionally incapable people withdementia.

Several problems complicate the practice of usingfamily members as surrogate decisionmakers. One isthat a person’s relatives may disagree about whichone(s) should make the necessary decisions. Suchdisagreements may arise between the dementedperson’s adult children, between adult children andthe spouse, or between siblings and other relativeswho have been involved in caring for the person(85,137,186,514,670,936). Some States’ family con-sent laws address this problem by specifying theorder in which certain family members (e.g., thespouse and the adult children) are authorized tomake surrogate decisions (539). OTA has notanalyzed the pros and cons of this approach.


Some of the other problems that complicate thepractice of using family members as surrogatedecisionmakers probably would persist even if allStates had clear, comprehensive statutes on desig-nating surrogate decisionmakers. One such problem,as discussed in chapter 3, is that some familymembers are not comfortable making decisions fora relative with dementia (307,487,533,669,936).Despite their concern about their relative’s welfareand knowledge about his or her wishes, some familymembers are reluctant to take control. Such reluc-tance is evident in following statement of a 74-year-old woman whose husband had dementia:

My husband refuses to believe that there isanything wrong with him. Sometimes he does seemto be better than others, so how do I tell him that heneeds help? (669)

A study of 15 spouses of people with dementia foundthat wives were much more likely than husbands tohave difficulty making decisions for their dementedspouses (533). The researcher concluded:

The males’ assumption of authority over theirwives was. . . a natural extension of their authorita-tive role in the family. For the wives, assuming anauthority position over another adult, especially aman who had probably been the authority figure inthe marriage, was one of the hardest aspects of thecaregiving role (533).

Another problem that complicates the practice ofusing family members as surrogate decisionmakersis that some families are not appropriate surrogatedecisionmakers. The practice of turning to a per-son’s family for surrogate decisions assumes thatfamily members are more likely than other people toknow the patient’s values and preferences and to beconcerned about his or her interests. That assump-tion is valid in many cases, and perhaps most, butcertainly not in all (93,945). Furthermore, evenfamily members who know a patient’s values andpreferences and are concerned about the patient’sinterests, do not always make decisions on the basisof those values, preferences, and interests.

It is sometimes assumed that the only thing a casemanager has to do with respect to designating asurrogate decisionmaker for a person with dementiawho has a family is to note the name and telephonenumber of one or more family members in theperson’s medical record or care plan. Sometimes,

however, problems arise-e.g., the person’s rela-tives disagree about who should be the surrogatedecisionmaker, or the obvious surrogate is eitherreluctant to make decisions for the person orunconcerned about the person’s well-being-thatmake designating a surrogate a more difficult task.Such problems suggest a need for agency policiesand procedures for designating surrogate decision-makers (written to comply with existing State lawsif there are relevant laws) and training for casemanagers and others who are involved in selectingsurrogate decisionmakers.

Designating a surrogate decisionmaker for aperson with dementia who has no family is likely tobe even more difficult than doing so for a person whohas a family. One unresolved issue is the appropriaterole of nonfamily caregivers in making decisionsabout services for decisionally incapable peoplewith dementia. That issue was brought to OTA’sattention by the findings of an exploratory studyconducted for OTA in Los Angeles and San DiegoCounties, California in 1988 and 1989 (866). Onecomponent of the study was interviews with 88ethnic minority caregivers of ethnic minority peoplewith dementia. The 88 caregivers included 35 black,25 Hispanic, 18 Japanese, and 10 American Indiancaregivers. 8 The study found that 17 percent of thecaregivers were friends or neighbors of the personthey were caring for, i.e., not family members, and34 percent of the black caregivers were not familymembers.

OTA’S contractors, the individuals who inter-viewed the black caregivers, and others have pointedout that in many black communities, long-timefriends and neighbors are frequently regarded andspoken about as if they were family members(247,866). When it comes to making decisions aboutservices for a decisionally incapable person, how-ever, these “fictive kin” are in the same or perhapsan even more uncertain position legally than familycaregivers in States that do not have family consentlaws. Although a nonfamily caregiver may knowmore than anyone else about the wishes and valuesof the person he or she is caring for—and thereforebe the best surrogate decisionmaker for that person—there is no legal authority for the nonfamily care-giver to make the necessary decisions.

8AII of tie components of tie study conducted for O’Ill in California are described in app. A. A complete report on the study is avfible from tieNational Technical Information Service in Springfield, VA.


The study conducted for OTA in Los Angeles andSan Diego Counties found that the percentage ofnonfamily caregivers was higher among the blackcaregivers than among the Hispanic, Japanese, andAmerican Indian caregivers (866). These findingscannot be generalized with any certainty because ofthe small size of the samples and the way thesamples were recruited. OTA’s contractors believe,however, that there is probably a higher percentageof nonfamily caregivers of people with dementia inthe black population than in the Hispanic, Japanese,or American Indian populations in the areas studied(865). On the other hand, anecdotal evidence sug-gests and OTA’s contractors believe that the phe-nomenon of nonfamily caregivers of people withdementia exists in all population groups, includingthe majority white population. It is likely, therefore,that agencies, case managers, and others that arrangeservices for people with dementia routinely encoun-ter dementia patients who have nonfamily care-givers. Although the appropriate role of thesecaregivers in decisions about services for the pa-tients is unclear, it is clear that unless the caregiversare involved in the decisionmaking process in someway, decisions about services for the patients theyare caring for will be made without the benefit oftheir knowledge of the patients’ wishes and values.

For individuals with dementia who have nofamily member or other person to make decisionsabout services for them and for individuals whosefamily or nonfamily caregiver is not an appropriatesurrogate for any reason, one option would seem tobe guardianship--in which a court appoints some-one to manage money and make decisions for anindividual who has been declared legally incompe-tent (the ward).9 Many commentators regard guardi-anship as a last resort, however, because it usuallyentails the drastic deprivation of rights for the ward;because, as discussed earlier, court proceedings areoften expensive, time-consuming, and emotionallystressful for everyone involved (177,253,361,945);and because guardianship does not necessarily resultin the designation of a reliable surrogate decision-maker.

A fulll discussion of the many problems withguardianship in this country is beyond the scope ofthis report. It is sufficient to note some of the

findings of a study conducted by the AssociatedPress in all 50 States in 1986 and 1987, in whichjudges, guardians, and others were interviewed andthe court files of more than 2,200 individuals whohad been declared legally incompetent and assigneda guardian were reviewed (1 1). That study found thatin one-fourth of the cases, no hearing was held todetermine whether the person was incompetent. Inmany cases, once guardianship was established, thecourt lost track of the paperwork, the guardian, andthe ward. Although there are reporting and account-ing requirements for court-appointed guardians in all50 States, the required annual or periodic account-ings of the ward’s money were missing or incom-plete in half the files. Only 16 percent of the files hadany kind of report on the status of the ward, and 13percent of the files were empty except for theoriginal decision that the individual was incompe-tent and the granting of guardianship powers. Onejudge interviewed by the Associated Press said:

I don’t know where the wards are, who’s caringfor them, or what they’re doing. I have no supportstaff; I have no welfare workers; I have no aides; Ihave no assistants; and I have no money (11).

In 1983, Montefiore Hospital in New York addeda lawyer to its multidisciplinary geriatric team toresolve legal problems that prevented effectivehospital discharge planning for or appropriate place-ment of elderly patients with diminished cognitiveabilities (181). For some patients, the lawyer initi-ated legal proceedings in order to have a guardianappointed to manage the patient’s money so thatneeded services could be purchased. After severalprotracted and generally unsatisfactory experienceswith the guardianship process, the lawyer concludedthat guardianship was an inadequate method ofdesignating a surrogate decisionmaker for the pur-pose of hospital discharge planning (179). Anotherlawyer connected to the project described theguardianship process as ‘‘a nonexistent alternative’with respect to hospital discharge planning (946).The guardians appointed by the court generally wereuntrained and unsupervised. Moreover, in at leasttwo cases in which a guardian was appointed after alengthy court process, the person appointed did noteven contact the patient or patient’s caregivers formonths after the court decision (181).

gsome Stites we tie tem ‘~~n” and “guardianship,” other States use the terms “conservator” and “conservatorShip,” and some states useboth terms to refer to thecourt-appointedperson and the mechanism(s) by which thatpersonis appointed to manage the assets and/ormake other decisionson behalf of people who are determined to be decisionally incapable (539). In the following discussio~ the terms “guardian” and “guardianship” areintended to include both sets of terms.

152 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

The American Bar Association has recommendedreforms in the guardianship process, and the Centerfor Social Gerontology in Ann Arbor, Michigan, hasdeveloped standards for individuals and agenciesthat function as guardians for decisionally incapableadults (738). Various other organizations havedeveloped alternatives to guardianship for decision-ally incapable people who have no family memberor other surrogate decisionmaker.

The University of New Mexico’s Institute ofPublic Law, for example, recently trained 20 volun-teers (social workers, lawyers, nurses, and others) toact as “temporary treatment guardians” to makedecisions about medical treatment for hospitalizedelderly people who are decisionally incapable andhave no other surrogate decisionmaker (802). Thevolunteers underwent a 16-hour training programthat involved didactic presentations, case discus-sions, and role playing. In the course of the l-yearproject, the volunteers assisted a total of 50 elderlypeople. As it turned out, the temporary treatmentguardians discovered that some of the elderly peoplethey were called in to assist were decisionallycapable after all and that other clients had familymembers or close friends who could be located witha little ‘‘sleuthing” and were able to make decisionsfor the person.

Since 1985, New York State has had a programwhereby volunteer surrogate decisionmaking com-mittees make decisions about medical treatments formentally ill and mentally retarded people who haveno other surrogate decisionmaker (777). The com-mittees are composed of at least 12 members whomeet in 4-member panels to consider treatmentdecisions. Each 4-member panel must include ahealth care professional, a former patient or relativeof a patient, a lawyer, and an advocate for thementally disabled. For each mentally ill or retardedindividual, the 4-member panel determines, frost,whether the person is decisionally capable and,second, whether there is a family member or alegally appointed guardian who can make thenecessary treatment decision. If the answers to bothquestions are no, the panel makes the treatmentdecision. In the first year of the program, surrogatedecisions about treatment were made in 192 cases.The decisions were made in an average of 14 daysfrom the time the committees received the applica-tion-much less time than is required for the typicalguardianship proceeding. Some observers fearedthat it would be difficult to recruit professionals to

serve on the committees, but recruiting volunteershas not been a problem except in some rural areas ofthe State.

Both the University of New Mexico program andthe New York State program provide only a one-time or temporary surrogate decisionmaker andaddress only decisions about medical treatment.Other guardianship diversion programs providemoney management and counseling services fordecisionally incapable people, sometimes on along-term basis (900). All of these programs exem-plify methods other than guardianship by whichsurrogate decisionmakers can be provided for peoplewho are decisionally incapable and have no familymember or other surrogate to made decisions forthem. To make surrogate decisions for these people,agencies that arrange services for people withdementia could create their own surrogate decision-making committee, recruit and train volunteer surro-gate decisionmakers, or affiliate themselves with aprogram that provides surrogate decisionmakers (ifsuch a program is available in the agency’s area).

What Criteria Should Guide SurrogateDecisions About Services?

Court rulings and legal analysis of decisions aboutthe use of life-sustaining medical treatments madeon behalf of people who are decisionally incapablehave identified two standards to guide surrogatedecisionmaking:

● the best interest standard, and. the substituted judgment standard.

The best interest standard requires the surrogate tomake decisions from the perspective of a hypotheti-cal reasonable person, using objective, societallyshared criteria (945). The substituted judgmentstandard requires the surrogate to make decisionsfrom the perspective of the patient, using thepatient’s personal values and preferences (945).

The best interest and substituted judgment stan-dards, respectively, represent two fundamental val-ues in surrogate decisionmaking-patient autonomyand patient well-being (671). The tension betweenthose two values is as central to surrogate decisionsabout services for people with dementia as it is tosurrogate decisions about the use of life-sustainingmedical treatments for people who are permanentlyunconscious or terminally ill. In the context ofsurrogate decisions about services for people with


dementia, patient well-being as a value is manifestedin decisions by physicians, service providers, casemanagers, or an individual’s friends or family thatthe individual should receive certain services or livein a certain place “for his or her own good,”regardless of the individual’s wishes. Patient auton-omy as a value is manifested in surrogate decisionsthat an individual with dementia should be allowedto refuse services and live as he or she chooses, evenif there is risk associated with those choices. Thelatter perspective also is reflected in efforts toenhance an individual’s decisionmaking capacity, asdiscussed earlier, and to support the “residualautonomy” of the individual (177).

Some people generally favor surrogate decisionsbased on patient well-being, whereas others gener-ally favor surrogate decisions based on patientautonomy. Clearly, however, neither value by itselfis sufficient for every decision or for every patient.The process of making surrogate decisions aboutservices for people with dementia probably shouldretain a tension between the two values, but retainingthat tension means that in many cases the “right”decision will not be obvious.

When case managers, hospital discharge planners,and others who arrange services for people withdementia make or influence decisions about serv-ices, those decisions are likely to reflect theirpreference for one value or the other, either ingeneral or in the particular situation. Yet some ofthose individuals may not be aware of the valuesinvolved in such decisions or the implications for thepatient of decisions that favor one value over theother.

The relationship between patient well-being andautonomy has been discussed and debated exten-sively with respect to decisions for all kinds ofpeople who are decisionally incapable, and theresulting ideas and principles seem both relevant toand adequate for thinking about criteria for surrogatedecisions pertaining to the use of services for peoplewith dementia. In contrast, another issue-how theneeds, preferences, and best interests of the patientand of the family should be weighed—has receivedless attention in discussion and debate about deci-sions for all kinds of people who are decisionallyincapable, and the resulting ideas and principles areless helpful in thinking about decisions aboutservices for people with dementia.

Photo credit: Bill Adams

Agencies that arrange services for people with dementiacould create a surrogate decisionmaking committee to

make decisions about services for people with dementiawho are not capable of making the decisions themselves

and have no one else to make the decisions for them.

The members of the advisory panel for this OTAstudy talked at some length about the question of therelative weight that should be given to the needs,preferences, and best interests of the family v. thepatient in decisions about services for persons withdementia. No consensus was reached, but severalimportant points emerged from the discussion. First,it is clear that when family members are necessaryparticipants in a plan of care because the person withdementia lives with them or for any other reason,their needs and preferences must be considered indecisions about services because their interests are atstake in the decisions and because they may notcooperate with the plan of care otherwise. Second, itis sometimes very difficult in practice to separate theneeds, preferences, and best interests of the personwith dementia and of the family.

Beyond those two points, the OTA advisory paneldivided into two groups. Some panelists tended toregard the person with dementia and family as a unitand to consider that unit the appropriate client of thecase manager. Those panelists generally were notespecially concerned about the difficulty of separat-ing the needs, preferences, and best interests of thepatient and those of the family; and they seemed toregard positively the idea of using the needs,preferences, and best interests of the family ascriteria for decisions about services. Other paneliststended to regard the person with dementia andfamily as separate; and they were worried about thepotential for conflicts of interest if the needs,preferences, and best interests of the family, ratherthan those of the patient, were used as criteria fordecisions about services.


Both groups of OTA advisory panel memberswere critical of case managers who represent them-selves as advocates for a person with dementia butin fact have their primary allegiance to a relative ofthe person, a trust officer, or someone else who ispaying for their services. This is one of the situationsthat commentators refer to with the phrase, “Who’sthe client?” The allegiance of the case manager tothe impaired person v. a family member, trustofficer, or someone else is in part a question ofprofessional ethics that should be addressed in casemanagement standards and is addressed, to somedegree, in the case management standards of theNational Association of Social Workers (572) andthe National Council on the Aging (581).

A more complex issue is the relationship betweenthe long-term needs, preferences, and best interestsof a person with dementia and the needs, prefer-ences, and best interests of his or her primarycaregiver, who is usually a family member. Argua-bly, the long-term best interests of many people withdementia is to remain with a family caregiver evenif the care they receive from that person is much lessthan ideal. It maybe in the demented person’s bestinterest to remain with the family caregiver becausethe alternative to being cared for by the familycaregiver is objectively worse, is worse in the viewof the patient, or both; because the person knows thefamily caregiver; or because families often providewhat one commentator has called ‘‘substitutedmemory of shared happenings ’’-i.e., a knowledgeof the patient past (which a formal service providergenerally does not have) that is reassuring to thepatient and may to some degree compensate for hisor her memory loss (177).

On the other hand, there is clearly some point atwhich the long-term best interests of a patient withdementia are not served by remaining with thefamily caregiver. Different observers undoubtedlywould disagree about when that point has beenreached for an individual patient.

If by basing decisions about services on the needsand preferences of the caregiver, one can support thecaregiver and prolong the time he or she is willingand able to continue caring for the patient, doing sowould seem to be in the patient’s long-term bestinterest, even if it required disregarding the patient’s‘‘spoken choice’ or short-term best interest. “spo-ken choice” here refers to a clearly articulatedpreference of the person which, because of the

person’s cognitive impairment, may or may notreflect his or her real needs, preferences, or bestinterests (18 1).

Consider, for example, a situation in which aperson with dementia is placed in a nursing home for2 weeks against his or her wishes, so that the primarycaregiver will be temporarily relieved of caregivingtasks. Even if the placement results in short-termworsening of the impaired person’s cognitive andemotional status, some people would say that it is inthat person’s best interest because it serves theperson’s presumed long-term interests. Additionalsituations also might be imagined in which disre-garding the spoken choice and short-term bestinterest of a decisionally incapable person could beregarded as being in that person’s best interest.

The point of this discussion is not to resolve thequestion of the relative weight that should be givento the needs, preferences, and best interests of theperson with dementia v. the family in decisionsabout services but simply to emphasize the complex-ity of the issue. Three additional considerationsfurther complicate the matter. First, some peoplewith dementia live with and are cared for by a personwho is almost as impaired as they are and who mightbe legitimately regarded as a client. When there are,in effect, two clients in the home, how should theirneeds, preferences, and best interests be weighed indecisions about services? Second, some, and per-haps many caregivers can be pressured into doingmore than they should do for their own good. Arethere limits that could or should be applied to whata caregiver is expected, asked, or even allowed todo? IAN@, as a patient’s condition deteriorates, is

there a point at which the interests and well-being ofthe caregiver should take precedence over theinterests of the patient?

There are no simple answers to any of thesequestions. Case managers and others who arrangeservices for people with dementia regularly cofrontsituations in which decisions must be made thatcould favor the needs, preferences, and best interestsof the family over those of the patient, or vice versa.They may be more or less aware of the issuesinvolved in those decisions and the implications forthe patient and family of decisions that favor theneeds, preferences, or best interests of one over theother.

The question of the relative weight that should begiven to patients’ v. families’ needs, preferences,

Chapter 4--Questions That Arise in Making Decisions About Services ● 155

and best interests in decisions about services re-quires further analysis. In the meantime, it is unclearwhat guidelines might be given to case managersand others who arrange services for people withdementia and thus regularly confront situations inwhich a decision must be made. One approachwould be to create within agencies various forums(e.g., multidisciplinary team meetings, formal caseconferences, and supervisory conferences) in whichthose situations could be discussed and deliberated.

Implications for a System To Link People WithDementia to Services

The preceding discussion points out that choosingsurrogate decisionmakers for decisionally incapablepeople with dementia and determiningg what criteriashould guide surrogate decisions about services forthem involve complex legal and ethical issues andraise many unanswered questions. State legislationthat clearly defined the rights and responsibilities offamily members and others in making decisions fordecisionally incapable people and delineated thetypes of decisions that designated surrogates are andare not authorized to make would eliminate many ofthe existing problems in designating surrogatedecisionmakers. Even without such legislation, how-ever, agencies, case managers, and others thatarrange services for people with dementia have toturn to someone for surrogate decisions for decision-ally incapable clients. Furthermore, it is likely thatregardless of the specificity of State legislation, thedesignation of appropriate surrogate decisionmakersfor people with dementia will entail difficult judg-ments in some and perhaps many cases because ofthe idiosyncrasies of each patient’s situation.

Likewise, although it is generally agreed thatpatient autonomy and patient well-being are thevalues that should guide surrogate decisions, the twovalues often imply different decisions in the samesituation, and neither value is appropriate for everysituation. Applying the two values in decisionsabout the use of services for an individual clienttherefore entails difficult judgments in many cases.Balancing the needs, preferences, and interests of anindividual with dementia and the needs, preferences,and interests of the individual’s family also requiresdifficult judgments.

The need for these difficult judgments suggeststhat agencies that arrange services for people with

dementia should have explicit policies and proce-dures for designating surrogate decisionmakers andmaking decisions about services for people withdementia who have no surrogate decisionmaker. It isreasonable to believe that case managers and otherswho are involved in arranging services for peoplewith dementia would benefit from training about theissues involved in surrogate decisionmaking. To theextent that case managers and others who arrangeservices for people with dementia actually designatesurrogate decisionmakers and/or make decisionsabout services for their decisionally incapable cli-ents, their need for such training is increased.

If Congress mandated a national system to linkpeople with dementia to services, Congress couldrequire the agencies that were designated to consti-tute the system to have explicit policies and proce-dures for designating surrogate decisionmakers (writ-ten to comply with existing State laws if there arerelevant laws) and for making surrogate decisions ininstances where the agency had to make surrogatedecisions for any reason. To formulate such policiesand procedures, the agencies that constitute thelinking system would have to address many of theunresolved questions discussed in this chapter,including questions about what to do when adecisionally incapable client’s relatives disagreeabout which one of them should make the necessarydecisions, how nonfamily caregivers should beinvolved in decisions about services, and whenformal guardianship is needed for a client.

To support agencies’ efforts to develop policiesand procedures for designating surrogate decision-makers and for making decisions for decisionallyincapable clients who have no surrogate, moreresearch and analysis pertaining to many of thequestions discussed in the preceding sections isneeded. Especially problematic is the question ofhow to balance the needs, preferences, and interestsof an individual with dementia and the needs,preferences, and interests of the individual’s familyor other informal caregiver. Perhaps it would beuseful for government, private agencies that arrangeservices for people with dementia, and professionalassociations that represent social workers, nurses,and other professionals who function as case manag-ers to jointly sponsor forums for further discussionof this and related issues.

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CONCLUSIONQuestions about how to determine the decision-

making capacity of people with dementia and how tomake surrogate decisions about services for peoplewho lack the capacity to make such decisionsthemselves are inherent in the process of arrangingservices for people with dementia. The way suchquestions are answered involves fundamental legalrights of the patient and raises complex legal andethical issues. Those rights and issues are at stakeregardless of whether the individuals who make orparticipate in the decisions are aware of them.

In many agencies that arrange services for peoplewith dementia, questions about the methods used toevaluate clients’ decisionmaking capacity and tomake surrogate decisions about services for clientswho cannot make such decisions themselves areobscured by other problems and concerns and by thesevere constraints on the time within which deci-sions about services must be made. In such agencies,concerns about clients’ legal rights, and about thelegal and ethical issues involved in the way deci-sions about services are made for people withdiminished decisionmaking capacity seem to besecond-level concerns to be considered when otherproblems have been solved.

This chapter has suggested that if Congressmandated a national system to link people withdementia to services, Congress could require thatany agency that is part of the system have explicit

policies that delineate the procedures to be followedwhen decisions about services are needed for clientswith diminished decisionmaking capacity. Policiesthat specify procedures for determiningg a client’sdecisionmaking capacity and/or assign responsibil-ity for determiningg a client’s decisionmaking capac-ity to a person or group of people could help increasethe likelihood that clients’ rights and the legal andethical issues involved in decisionmaking are ade-quately considered.

The chapter has discussed some concepts, distinc-tions, and approaches that may be useful in develop-ing such agency policies and procedures and intraining case managers and others who are involvedin arranging services for people with dementia. Asnoted repeatedly, many of the concepts, distinctions,and approaches that have been discussed werederived from analysis and debate about the use oflife-sustaining medical treatments or participation inresearch, not the kinds of decisions that are the topicof this OTA report. Furthermore, some of theconcepts, distinctions, and approaches discussed inthe chapter apply more to decisionmaking by and formentally ill and terminally ill people than todecisionmaking by and for people with dementia. Toaddress the difficult questions and issues that arelikely to arise in situations involving decisions aboutthe many kinds of services to which an effectivelinking system could link people with dementia,further research, discussion, analysis, and debate isneeded.

questions that arise in making decisions about services

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