Patient Education and Counseling 94 (2014) 334–341

Medical Decision Making

Decision-making styles of seriously ill male Veterans for end-of-lifecare: Autonomists, Altruists, Authorizers, Absolute Trusters, andAvoiders§

Ursula K. Braun a,b,*, Rebecca J. Beyth c, Marvella E. Ford d, Donna Espadas a,Laurence B. McCullough e

a Health Services Research & Development Center of Excellence, Michael E. DeBakey VA Medical Center, Houston, USAb Baylor College of Medicine, Department of Medicine, Section of Geriatrics, Houston, USAc Geriatric Research Education Clinical Center, NF/SGVHS, Department of Medicine, University of Florida College of Medicine, Gainesville, USAd Department of Biostatistics, Bioinformatics, and Epidemiology and Cancer Disparities, Hollings Cancer Center, Medical University of South Carolina,

Charleston, USAe Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, USA

A R T I C L E I N F O

Article history:

Received 26 February 2013

Received in revised form 5 October 2013

Accepted 26 October 2013

Keywords:

Decision-making

Qualitative research

Race/ethnicity

End-of-life care

Veterans

A B S T R A C T

Objective: To describe self-reported decision-making styles and associated pathways through end-of-life

(EOL) decision-making for African-American, Caucasian, and Hispanic seriously ill male Veterans, and to

examine potential relationships of race/ethnicity on these styles.

Methods: Forty-four African American, White, and Hispanic male Veterans with advanced serious

illnesses participated in 8 racially/ethnically homogenous focus groups. Transcripts were qualitatively

analyzed to identify major themes, with particular attention to themes that might be unique to each of

the racial/ethnic groups.

Results: Patients described two main decision-making styles, deciding for oneself and letting others

decide, leading to five variants that we labeled Autonomists, Altruists, Authorizers, Absolute Trusters,

and Avoiders. These variants, with exception of avoiders (not found among White patients), were found

across all racial/ethnic groups. The variants suggested different ‘implementation strategies’, i.e., how

clear patients made decisions and whether or not they then effectively communicated them.

Conclusion: These identified decision-making styles and variants generate strategies for clinicians to

better address individualized advance care planning.

Practice implications: Physicians should elicit seriously ill patients’ decision-making styles and consider

potential implementation strategies these styles may generate, thus tailoring individualized

recommendations to assist patients in their advance care planning. Patient-centered EOL decision-

making can ensure that patient preferences are upheld.

Published by Elsevier Ireland Ltd.

Contents lists available at ScienceDirect

Patient Education and Counseling

jo ur n al h o mep ag e: w ww .e lsev ier . co m / loc ate /p ated u co u

1. Introduction

End-of-life (EOL) decision-making should be based uponpatients’ values, beliefs, and preferences [1]. This standardemerged from 20th-century medical ethics and health lawstrongly emphasizing respect for patient autonomy [2]. However,focusing exclusively on preferences or their implementation

§ This is an open-access article distributed under the terms of the Creative

Commons Attribution-NonCommercial-ShareAlike License, which permits non-

commercial use, distribution, and reproduction in any medium, provided the

original author and source are credited.

* Corresponding author at: Huffington Center on Aging, 2002 Holcombe

Boulevard, VAMC 152, Houston, TX 77030, USA. Tel.: +1 713 794 8636;

fax: +1 713 748 7359.

E-mail address: ubraun@bcm.edu (U.K. Braun).

0738-3991/$ – see front matter . Published by Elsevier Ireland Ltd.

http://dx.doi.org/10.1016/j.pec.2013.10.013

overlooks a more fundamental aspect of patient autonomy,respect for the patient’s preferred decision-making style [3]. Theimportance of decision-making styles is reflected in the literatureon cultural competency, which emphasizes that patients’preferred EOL decision-making styles can vary [4–7]. Race andethnicity can also affect patients’ decision-making style, values,beliefs, and preferences, and thus impact end-of-life decision-making [8–12].

Few studies of racially/ethnically diverse patients that examineEOL decision-making describe patients’ experiences beginningwith their decision-making style and focusing on how patientsthen progress in this process, and how EOL decision-making mightvary by race/ethnicity. Physicians need to understand howpatients’ preferred decision-making styles shape their EOLdecision-making, in order to assist them in this difficult taskand to do so in culturally appropriate ways [13,14].

Table 1Eligible diagnoses for patients.

Non-cancer diagnoses:� Congestive heart failure with an ejection fraction of <25%, and at least one

hospitalization in prior year as a marker of disease severity

� Chronic obstructive pulmonary disease/emphysema with at least one

previous hospitalization, and on home oxygen therapy

� Chronic liver disease with cirrhosis and ascites

Cancer diagnoses:� Non-small cell cancer of the lung, Stage III or IV

� Any metastatic solid-tumor cancer

Fig. 1. Flowchart for participant identification.

U.K. Braun et al. / Patient Education and Counseling 94 (2014) 334–341 335

The goals of this qualitative study were to describe the self-reported decision-making styles experienced by seriously illpatients, how these affected their EOL decision-making, and togenerate hypotheses about the relationship of race and ethnicity tothat experience. This approach was open to the discovery of bothcommonalities and differences.

2. Methods

2.1. Study sample

After obtaining IRB approval through Baylor College ofMedicine, participants were recruited through the Michael E.DeBakey VA Medical Center (MEDVAMC) in Houston, Texas. Weidentified and recruited seriously ill patients, using criteria similarto the SUPPORT (Study to Understand Prognoses and Preferencesfor Outcomes and Risks of Treatments) criteria [15], see Table 1.We screened the electronic medical records of patients who hadICD-9-codes for one of the target diagnoses and recruited themthrough the primary care, geriatrics, and subspecialty clinics(cardiology, pulmonary, gastrointestinal, and oncology) at MED-VAMC with permission of their respective physicians. Patients’physicians were not involved in the recruitment or consentingprocess at all other than allowing the research team access toscreen their patients’ electronic charts for eligibility. Patients witha diagnosis of dementia (per chart review) were excluded.Potentially eligible patients received a postcard asking forparticipation in a group interview session on decision-making

for advance care planning that included a phone number to opt out.If they did not opt out, patients were called by trained researchassistants to explain the study, and to obtain preliminary consentto participate.

Screen-eligible patients were separated in 3 lists: patients likelyto be White, African-American, and Hispanic (per chart review);race/ethnicity was ultimately determined by self-identification.We aimed to achieve equal participation of all major racial/ethnicgroups represented at our VA through purposive sampling andoversampling of minority patients. Approximately 30% of patientslisted as White, 50% of patients listed as African-American, and 80%of patients listed as Hispanic who had been screened as study-eligible were randomly called and asked to participate.

Fig. 1 shows how the focus groups, each homogenous by race/ethnicity, were organized. Female, trained, race/ethnicity-concor-dant moderators with experience in qualitative research con-ducted the groups. Two of the non-clinician investigators (DE

Table 2Guiding questions for the patient focus groups.

1. Some people think that it is important for patients to know how likely different types of medical treatment are to bring back their health or even save their life. For

example, for older patients the chance of getting well and leaving the hospital after their heart stops and they have CPR (chest compressions/pumping on the chest) is very,

very small. How important do you think it would be to know about the chances of getting well with different treatments?

Prompts:

For those who say it is important: What are some of the reasons you feel this way?

For those who say it is not important: What are some of the reasons you feel this way?

Is there something else that you think is important?

2. Some people think that it is important for patients to make real detailed, specific decisions in advance about specific medical treatments. For example, treatments like

cardiopulmonary resuscitation (chest compressions/pumping on the chest), being put on a breathing machine, or getting food through a tube.

How important do you think it is to make such detailed decisions in advance? [Clarify:] By ‘in advance’ we mean before patients are so sick that they can’t speak for

themselves anymore. This is why some people write down what they want so that there are no doubts about what they want when they can’t speak for themselves

anymore. If you write down what you want this is called a ‘living will’ or ‘advance directive’; if you name someone you would want to make decisions for you when you

can’t decide for yourself, it is called a ‘power of attorney for healthcare’.

Prompts:

For those who say it is important: What are some of the reasons you feel this way?

For those who say it is not important: What are some of the reasons you feel this way?

Is there something else that you think is important?

3. We don’t know very much about what patients themselves think is important about making decisions at the end-of-life.

� What is important to you in making such treatment decisions?

� What things matter most to you when you are very sick?

� What does quality of life regarding your health status mean to you?

� You have had experience with medical procedures, doctors, nurses, and hospitals. How does this influence your thoughts about the types of treatments you would like to

get at the end-of-life?

� How do you decide for or against certain medical treatments or procedures when a true cure is no longer possible?

[say for illustration purposes:]

For example, when someone has emphysema, there is nothing that will make this lung disease go away, it‘s not like an appendix that can be taken out when it is sick. There

are medications like inhalers that can treat the lung disease, but they don‘t ‘cure’ it. OR: some be operated on or destroyed, not all cancer cells will be killed, and the cancer

can‘t be ‘cured’. [repeat question:] How do you decide for or against certain medical treatments or procedures when a true cure is no longer possible?

� What are your goals for care at the end-of-life?

� How important are religious beliefs or your faith to you when making decisions about medical care?

� Some people want ‘‘everything’’ done and may get a lot more tests and procedures than others.

* What do you think ‘‘everything’’ means?

* Would you want ‘‘everything’’ done even if it caused pain and suffering?

� If you name someone else to make decisions for you when you can‘t do it yourself anymore, how do you know/make sure that that person knows what you would

want?

� Do you think that doctors of your own race/ethnicity explain end-of-life treatments better than other doctors?

* If so, What do you think makes it better and how?

* If not, what do you think makes it worse/the same and how/why?

U.K. Braun et al. / Patient Education and Counseling 94 (2014) 334–341336

(project coordinator) and MEF) moderated the groups for theHispanic and African American participants, respectively.

2.2. Focus group procedures

The investigators developed guiding questions after extensiveliterature review and pilot-testing of the script through twopatient interviews (Table 2). Moderators made clear at thebeginning of the group session that no one was obliged to answerany of the questions if they felt uncomfortable. The moderatorsmade it clear to the participants that they were interested in theresponses of the group, rather than in individual members’responses. Patients knew they were primarily chosen to participatein the focus groups because of their individual experiences as a

community of patients. Moderators prompted participants toelaborate on responses. Comments of other group members alsoserved as prompts for obtaining additional information aboutparticipants’ experiences [16]. After obtaining informed consent,focus groups, lasting 65–90 min, were conducted and audio-tapedat MEDVAMC and then transcribed for qualitative analysis. Toensure confidentiality only codes (no names) were used in thetranscripts and the transcribers were blinded to participants’ race/ethnicity.

3. Analysis

We conducted inductive qualitative content analysis to identifyideas and concerns [17,18]. Investigators were racially/ethnicallydiverse and had different areas of expertise. Each investigatorindependently read transcripts, identified passages describing

values or concerns, and assigned codes to subjects’ natural-languagestatements, to indicate emerging conceptual categories. We thencompared initial findings to identify and reconcile differences.Natural-language statements by patients about their experiencesand decision-making were coded and grouped into conceptualcategories or themes using a consensus-building process among theinvestigators. Themes were re-examined for clarity and conciseness.We used an iterative process of re-reading and recoding passages,refining coding simultaneously, until final consensus was reached.We selected representative quotes from the transcripts illustratingfinal categories and themes using ATLAS.ti 5.0.66 (ScientificSoftware Development GmbH, Berlin) to create a coded electronicdata set. We are giving reference to focus group and patient numberafter each quote in order to demonstrate that our quotes wererepresentative of a variety of participants, not just from a select fewwho could have potentially been domineering a group.

4. Results

We screened 367 patients and identified 172 (46.9%) potentiallyeligible patients of whom we presumed (per chart review) 94 to beWhite, 48 to be African-American, and 30 to be Hispanic. Werandomly called patients from each of these groups (83 total; 35White, 24 African-American, 24 Hispanic). Of these, 56 (21 White,16 African American, 19 Hispanic) agreed to participate, and 44actually participated in one of eight focus groups (see Fig. 1). Themean age of participants was 57.8 years (Table 3). About 40% ofpatients had either a diagnosis of advanced chronic obstructivepulmonary disease or congestive heart failure, and 11% each hadliver cirrhosis or advanced cancer. All patients except one were

Autonomist: Takes responsibility for o ne’s

deci sions

Altru ist: Does not want to burden ot hers with

deci sion making

Authorizer: Transfers authori ty by explicit

authori za�on

Absolute Truste r: Transfers a uthori ty by implicit a uthoriza� on

Avoider: Accepts Surr ogat es’ decision

making by def ault

‘Autonomist’• It’s my rig ht to deci de

for myself• I want to make my o wn

deci sions• It’s my o wn bu siness

‘Altru ist’• It’s my responsibili ty• I want to make decisions

for t hem so it won’t be difficult for t hem

‘Authorizer’• I t rust t hem to make t he

right choices and I have given t hem guidance o n what I want

• It may be hard, bu t I to ld them what to do

‘Absolute Truste r’• I t rust t hem to do t he

right t hing• If it happ ens, t hey will

know what to do (I t rust them so don’t have to tell t hem what to do

‘Av oider’• I let t hem do what ever

the hell t hey want, because I reall y don’t know

• Only t he master has a say

“I dec ide”“Let others

dec ide"

- Encourage comple�ng effec�ve wri �en docume nts, i. e. living will not o pen to interpreta� on

- Encourage informing legal surr ogate a bout wishes o r

- Encourage app oin�ng a medic al POA

- Encourage more effec�ve arr angem ents either wri �en, i. e. living will, o r verbal, i. e.

- Encourage discussing wishes in detail with legal surr ogate or app ointed POA

- Encourage making effec�ve arr angem ents, i.e. discussing wishes and general values in detail with surr ogat e,

- If pref err ed surr ogate is NOT t he legal surr ogat e:encourage app oin�ng a POA

- Respec�ull y point o ut risk for o ver/und er-treatme nt du e to surr ogat es’ lack o f knowledge a bout wishes

- Gently try to elicit general preferences

- Point o ut t he hig h burden o f DM for surr ogat es and encourage bri ngi ng surr ogat es to clinic visits

- Help iden�fy legal surr ogat e

- Respec�ull y point o ut risk for o ver/und er-treatme nt du e to surr ogat es’ lack o f knowledge about wishes

- Point o ut t he hig h burden o f DM for surr ogat es

Pref err ed DM Role:

Reasons fo r Pref err ed DM Role:

Sugg ested strategies for physi cians in response to pa�ents’ DM styles to improve EOL DM

Fig. 2. A typology of how patients approach decisions about end of life (EOL) care. DM, decision-making; EOL, end-of-life; POA, power of attorney.

U.K. Braun et al. / Patient Education and Counseling 94 (2014) 334–341 337

male. Given the ethnic make-up of our region, all Hispanic patientswere White and of Mexican origin.

4.1. Preferred decision-making role

Two fundamental decision-making styles emerged: decidingfor oneself or allowing others to decide, with five importantvariants in how patients expressed and justified these styles(Fig. 2). These variants, except one, were represented across allraces/ethnicity.

4.2. Deciding for oneself: ‘‘Autonomists’’ and ‘‘Altruists’’

Some participants were adamant about deciding for themselves(‘‘Autonomists’’): ‘‘That’s my feeling that I think I ought to be ableto dictate how I want it to end, you know’’ (African Americanparticipant #1-1). Among whites, another reason for deciding foroneself and formalizing this in writing was motivated by

Table 3Characteristics of patients who participated in focus groups.

Characteristics African American (N = 14)

Mean age (years) 59

(Range: 55–83 years)

Sex—female 1

Died within six months of interview 3

Patient had:

Living will 3

Durable power of attorney for healthcare 6

Diagnosis of patient:

Cirrhosis 1

Chronic obstructive pulmonary disease 7

Congestive heart failure 4

Non-small cell lung cancer 2

Metastatic colon cancer/cholangiocarcinoma 0

discussions about the widely popularized Schiavo case [19].Autonomists wanted to assure that their wishes would be carriedout: ‘‘I have heard so much about other people being kept onmachines and kept alive and – but they’re not able to speak out andtell the doctor that they don’t want to be on that machine, but theirloved ones are there and they already told them earlier that theydidn’t want to be, but yet the doctors will keep them on there andthey’ll have to go to court and all this and they’ll go against theman’s wishes who’s laying there on that machine. And I don’t – Idon’t believe in that at all, you know. That’s the reason I made out a– me and my wife both had a living will made up and she knowswhat I want, and I know what she wants’’ (White participant #3-1).This belief in a written living will was also echoed in a Hispanicgroup ‘‘Put it in writing’’ (#H1-1), ‘‘It has to be written down’’(#H1-2), and ‘‘You have to write it down as back-up. You know, youtell them all you want to, but you know at that last minute, becausemy daughter’s close to me. I don’t think she’d ever want to let mego, see’’ (#H1-3). An African American participant (#A2-1) stated:

Hispanic (N = 17) Caucasian (N = 13) Total (%) (N = 44)

58.1 56.1 57.8

0 0 1 (2.3%)

1 2 6 (13.6%)

4 5 12 (27.3%)

1 4 11 (25%)

2 2 5 (11.4%)

4 5 16 (36%)

10 4 18 (40.9%)

1 0 3 (6.8%)

0 2 2 (4.5%)

U.K. Braun et al. / Patient Education and Counseling 94 (2014) 334–341338

‘‘It has a way of separating the love that you thought you had and,whether it be greedy or just some of ‘em trying to take control, itgets hum-drum. Things aren’t really what you want unless it’slegally done with a will or you have a set power of attorney that hasyour wishes recorded and written down.’’ Another patientexplained that a written document was necessary becausesurrogates might become incapacitated as well: ‘‘anything canhappen like, uh, wife’s supposed to be taking care of me, butsomething could happen to her.’’ . . .‘‘That’s why we have it writtendown and designates her as primary – my two kids secondary. So —somebody there within the family will know what’s going on andall the instructions be written down. And not open to interpreta-tion. Verbal communication’s open to a lot of different interpreta-tions’’ (#W3-2).

A few white patients felt that someone other than family mightdo a better job in carrying out a patient’s wishes and thus haddesignated medical power of attorneys: ‘‘Well, I think that, naminga friend as the executor of whatever you want to call this, yourliving will or whatever, it creates less friction from certain familymembers’’ (#W2-2).

Other participants wanted to avoid burdening others withdecision-making and strove to prevent family discord (‘‘Altruist’’).Altruists stated: ‘‘And if the time comes when that’s it, just read itoff and take care of it. It shouldn’t be her burden or mine on hercase (#W2-3), ‘‘I don’t want to put no burden on nobody else’’(#H1-4), and ‘‘I think it’s very important – I don’t want to have mykids or whatever under that pressure’’ (#A1-2) and: ‘‘it would takethe pressure off the children and the rest of your family becausesome of them would be at odds, some of them would want to pullthe plug on you and some of them wouldn’t. [. . .] They wouldn’thave to go through that if they already know what you want. [. . .]Ifeel it’s important for my children to know and not have to, as hesaid, be under the pressure to make it.’’ (#A1-2). The patients alsounderstood discussing EOL care and completing a written livingwill as tools for preventing family fights: ‘‘the will, what my wishesare, they’ve heard me say it and we have discussed it – not everyone of my children and that’s why I feel like it’s important to writeit out and give each one of them a copy of it (#A1-3), ‘‘I’m afraid I’dhave one of my boys, my daughter or my wife, you know, if I didn’ttell them anything about my decision, or what it amounts to whenit gets down bad there’s going to be a big family conflict over thisone wanting you to live and the other one [. . .] doesn’t want you togo through this.’’ . . .’’ And I’ve seen it done too many times, wherethe families actually, everybody gets separated over one old boydying’’ (#W2-1) and: ‘‘They going to start fighting, don’t put themthrough it, cut ‘em off. Nope. That’s the reason you prepare yourfamily. You make your wishes before, a will or something’’ (#H1-3).

4.3. Letting others decide: ‘‘Authorizers,’’ ‘‘Absolute Trusters,’’ and

‘‘Avoiders’’

Participants who favored letting others decide expressed threedifferent reasons: trusting others to decide while giving themguidance (‘‘Authorizers’’); having complete faith in others thatthey would know what to do (‘‘Absolute Trusters’’); and lettingothers decide as a way of avoiding decision-making, i.e., lettingothers decide by default and without giving them guidance(‘‘Avoiders’’), see Fig. 2.

Authorizers trusted other family members to decide for themwhile providing them with general-value guidance or discussing afew hypothetical scenarios: ‘‘I think it’s very important thatwhoever this person is well acquainted with your particularsituation. And you’ve already talked with them and explained ordiscussed some of the issues involved to the extent that they know.They’re not just guessing, they know what’s going to be best for

you.’’ (#A2-2), and ‘‘I prepared them for it and I told them alreadyand at least, I haven’t written it down, but I got a will andeverything else. But, tell them, I don’t want to, I don’t want nomachines. When I can’t go to the bathroom, you might as well justpull the plug’’ (#H1-4). If they did not anticipate any familyconflict, they felt less need for writing decisions down, e.g., in theform of a living will: ‘‘first my wife and secondly would be mydaughter. Oh, they know. We’ve discussed it. We have discussed it.Many, many times and they both are together on that. They are notone of them pulling one way, the other one the other way. Theyboth agree on everything I want,’’ (#H2-1), or: ‘‘Uh, I don’t haveanything in writing, because when I ask my sisters that’s just likeprinting it in gold, stacking it in gold. They’re going to do it (#A2-1).

Absolute Trusters, because of a close relationship, completelybelieved in their surrogates’ ability to make the ‘right’ decisions forthem and were agreeable to and accepting of any such decisionsthey might make for them. ‘‘I tell my daughter to take care of this.. . . because I know her very good. Because I just know, that’s it, theonly answer,’’ (#H1-4). ‘‘I tell my wife to speak. My wife, she got thesame power I got. [..] What I, if she thinks is right, she can do it,’’(#H2-2). Absolute Trusters may not have had prior discussionswith family about EOL care; however, they were at peace withleaving matters for their family to decide. ‘‘I’ve been married to mywife for 37 years now and she pretty well knows what I wantdone.’’ [Moderator:‘‘How does she know?’’] ‘‘Well, I just know shedoes,’’ (#H1-1).

Only two patients represented Avoiders: ‘‘Well, uh, I let them dowhatever the hell they want, because, uh, I really don’t know. Idon’t know what. . . I don’t even know if I want to stay alive attimes, but my wife said that the last time that I was in here, when Ihad that heart attack, she asked me afterwards what are we goingto do about your, what do you call that, where you sign, wheresomebody make decisions for you?,’’ (#H3-1). Subsequently, thispatient had a discussion with his wife and was able to clarify somebasic values with her, but at the time when he was critically ill, hehad provided no guidance whatsoever to his wife regarding hiswishes and thus he received all potentially life-sustainingtreatments by default. He differed from Absolute Trusters becausehe did not say that he felt whatever his wife wanted would be fine;he just didn’t know what he wanted, and had not thought muchabout things. After his wife initiated a conversation with him wewould have considered him an Authorizer.

The other (African American) Avoider did not make anydecisions because he felt it was unnecessary. To him, his orothers’ decisions were irrelevant anyway because all decisions liein God’s hands: ‘‘You don’t have no say. The doctors have no say.Only the master has a say. So, you just wait on it. Just wait,’’ (#A1-5).

4.4. Race/ethnicity and selected decision-making styles

There was no apparent relation to race/ethnicity in terms of thetwo basic decision-making styles or the five variants. Theexception was the group of Avoiders where we found no whitepatient. Among Hispanics, we found a slight dominance of Altruistsand Authorizers. There also seemed to be a slight dominance ofAfrican Americans among Authorizers; many preferred verbalcommunication. Whites appeared less skeptical about completingforms and seemed to have fewer misunderstandings about whatthese documents were.

5. Discussion

Our data suggest that patients confronted by EOL decisions willfall into five ethically and clinically distinct groups, two based ondeciding for oneself and three based on letting others decide.

U.K. Braun et al. / Patient Education and Counseling 94 (2014) 334–341 339

Similarly, patients will elect certain implementation strategiesreflective of these five groups (Fig. 2). We examined therelationship of race/ethnicity to the experience of patients’decision-making using a purposive sampling strategy to includeequal numbers of African American, white, and Hispanic seriouslyill patients in separate focus groups led by race-concordantmoderators. No previous studies used such a strategy. Additionally,other studies examining the relationship of race/ethnicity in EOLdecision-making focused mostly on treatment preferences [8,20–22], and some did not obtain information from patients but usedcommunity samples of older adults who may not have had to faceany EOL decisions [22–24]. We found, except for Avoiders, patientsacross all racial/ethnic groups representing the different preferreddecision-making variants. Physicians should not stereotype apatient into a specific decision-making variant based on their race/ethnicity. Moorman et al. examined older adults’ preferences forautonomy in EOL decision-making and found that the majoritypreferred deciding independently, which was associated withbeing less avoidant of thoughts of death, not wishing to burden acaregiver, and being more likely to make a living will and appoint amedical power of attorney [25].

A fundamental ethical requirement of the principle of respectfor patient autonomy is to identify and empower patients’ self-selected decision-making styles [3]. Patients who want to decidefor themselves are likely to implement their wishes differentlyfrom patients who let others decide. This is reflected in thetypology portrayed in Fig. 2. Because we observed some fluidityand overlap among the different variants we emphasize that theyshould not be seen as ‘‘silos.’’ Identifying how patients want tomake EOL decisions is necessary, but insufficient. One also needs toaddress which implementation strategies may best serve thepatient’s decision-making style, especially with respect to effective

decision-making. For example, our findings suggest that effortstoward increasing completing advance directives [26–28] arelikely to best serve patients who already made or are ready to makedecisions and are comfortable with formally expressing them, i.e.,Autonomists, Altruists, and some Authorizers. However, askingpatients to complete advance directives will not be effective forsome Authorizers nor for Absolute Trusters, Avoiders, or even someAltruists if they prefer verbal communication only. In clinicalpractice, completing advance directives is an important accom-plishment – for patients for whom this is a suitable way to expresstheir preferred decision-making-style. However, future focus onimproving EOL decision-making for Authorizers, Absolute Trusters,and Avoiders should shift from trying to increase completion ratesfor advance directives toward, as other have suggested [29,30],preparing patients for EOL decision-making, encouraging clearguidance through effective verbal communication with surrogates,identifying legal surrogates, and appointing a preferred agent asappropriate.

Even though only two patients represented the Avoiders, wedecided to include ‘‘Avoiders’’ as a distinct variant in our model aswe believe that such patients were underrepresented in our focusgroups; by definition Avoiders would be highly unlikely toparticipate in a study discussing EOL decision-making (notavoiding it), and many practicing physicians are familiar withsuch patients. Indeed, among patients who declined to participate,ten (12%) stated they were not comfortable with the topic.

5.1. Follow-through: execution of decisions

Patients’ selection of their preferred decision-making style isonly the first step in EOL decision-making. Implementing decisionsis the crucial next step. Implementation strategies should bedistinguished by whether participants (1) made and clearlycommunicated their decisions to those who needed to know

them, (2) made but did not clearly communicate their decisions toothers, or (3) did not make decisions or even minimally prepareothers to make decisions for them and were thus at risk forreceiving any treatment by default [31].

Autonomists followed through either by completing a livingwill that included directions about life-sustaining treatments or bynaming someone as their medical power of attorney anddiscussing their wishes with that person, or both. There was asomewhat fluid transition to the Authorizers, as some would notspecifically name someone as their power of attorney. If they feltthat the potential for conflict was low due to only one or twopotential legal decision makers, they were inclined to only verballydiscuss their wishes and not formally appoint a power of attorney.Absolute Trusters commonly expressed complete trust in theperson who would be their legal surrogate. They either felt theperson would make ‘‘right’’ decisions because they knew theperson well and trusted her/him; or because the person knew thepatient well and thus would know to do the ‘‘right’’ thing. Theirfollow-through consisted only of identifying a power of attorney incases where the legal surrogate might not be their preferred one.

Despite consisting of only two patients, the Avoiders were aheterogenous group. One (Hispanic) Avoider let others decidequasi-by-default, because he had not thought about things and wasnot sure about what he wanted. It was not because he put completetrust in someone to make the ‘‘right’’ decisions. He had not beenchallenged to think about EOL care or he had avoided discussing it,thus his wife had to decide for him without any guidance. The other(African American) Avoider similarly let others decide by default,but he did not appreciate this as letting others decide. Because heput complete faith in God to make all decisions, any decision-making on his part – or any other persons’ part – was superfluous.This patient considered deciding anything as unnecessary as alldecisions lie in God’s hands.

5.2. Limitations

Limitations of this qualitative study relate to the number andcomposition of the focus groups, an academic setting, and themostly male population of a VA Medical Center. Strengths of ourstudy are that we directly obtained information from patients whowere living with serious life-threatening illnesses, who were wellfamiliar with EOL decision-making, and that we purposivelyincluded patients with diverse racial/ethnic background. We didnot triangulate our findings (though many of the same themeswere echoed in two individual interviews testing our guidingquestions) or use key-informants. However, investigators wereracially diverse and from different disciplines (medicine, socialsciences, ethics), and each read transcripts independently beforereaching consensus.

5.3. Conclusion

Our data emphasize that seriously ill patients fell into fiveethically and clinically distinct variants across race/ethnicity.Respect for patient autonomy requires recognition of and respectfor these variants and the appropriate implementation strategiesthey ensue. Patients’ autonomy can be enhanced by encouragingpatients to make and effectively communicate their decisions,subject to the limitations on doing so posed by ‘‘Avoiders’’ whosepreferred decision-making style may not allow clinicians topromote and assist in advance care planning. The physician’s goalshould be to promote effective EOL decision-making withAutonomists, Altruists, Authorizers, Absolute Trusters, and Avoi-ders. No one size will fit all patients, whose implementationstrategies may range from completing formal documents toincreasing oral communication with surrogates. Physicians should

U.K. Braun et al. / Patient Education and Counseling 94 (2014) 334–341340

judiciously allocate their time in a persistent, respectful, andsupportive effort to engage patients in EOL care planning. Patient-centered, culturally competent EOL decision-making is a powerfultool to ensure that patient preferences are truly upheld.

5.4. Practice implications

Physicians have limited time to spend, requiring priorities to beset. Assisting Autonomists and Altruists to implement EOLdecisions generally will be relatively simple: they have madedecisions and only need to effectively communicate them.Physicians can assist by providing appropriate paperwork or, forpatients uncomfortable with written documents, strongly encour-aging patients to discuss their wishes in detail with their legalsurrogate decision maker(s). Surrogates will then be able to reportthe already-made decision of the patient, a role that is perceived asless burdensome [32,33]. Physicians could also facilitate discus-sions with potential surrogates and clarify to patients who theirlegal surrogates are [34].

Assisting some Authorizers may be relatively straightforwardbut can sometimes, along with assisting Absolute Trusters, beconsidered complex. This is because Authorizers first need to makeclearer general value statements before they can effectivelycommunicate them. Absolute Trusters by definition let othersdecide about their care. They can be strongly encouraged to givemore guidance to their surrogates, moving them to Authorizers or,if they want to reduce the decision-making burden on surrogates,Altruists. Often this can be accomplished simply by pointing outhow hard it is to make such important decisions for someone elsewithout any guidance by that person [31–33,35]. If the patientallows, physicians might ask the surrogate if he or she would feelcomfortable in making EOL decisions for the patient, and if not,physicians would need to invest some time to discuss with thepatient and surrogate what might help the surrogate achievecomfort levels. Any general preferences should be elicited andrecorded. Clinicians would need to encourage increased directcommunication between patient and surrogate and support thepatient by offering to facilitate such conversations. The annualMedicare wellness visit as recently proposed would have createdan opportunity to accomplish at least a starter conversation withpatients while being reimbursed for doing so [36]. It may be helpfulfor patients to know that surrogates may feel burdened by decidingfor others. Some patients view allowing others to make decisionsfor them as an act of love or sign of trust and might be quitesurprised to know that not every surrogate welcomes this role.

EOL care planning with Avoiders is difficult as they may beresistant to interventions to encourage EOL planning, and respectfor autonomy includes allowing patients to not make decisions. Itmay suffice to remind such patients of the importance of decision-making and the major risk of not doing so, receiving life-sustainingtreatment by default, which the patient may or may not want. Thephysician can also inform such patients that not making EOLdecisions can result in preventable stress for surrogate decisionmakers [32–35]. Avoiders may not welcome such discussions andthey may even be unfruitful and risk harm to the patient–physicianrelationship. Clinicians should make every effort to accuratelydiscern in which variant their patient belongs, and at regularintervals briefly re-evaluate whether the patient may now be moreopen to engage in a conversation about EOL care planning.

Conflict of interest

The principal investigator and all co-authors have no conflicts ofinterest, including specific financial interests and relationships andaffiliations relevant to the subject matter or materials discussed inthe manuscript.

Acknowledgments

The authors thank all patients who participated in our focusgroups, and JoLynn Mikow, Ph.D., for moderating some of the focusgroups.

This project was supported by the Department of VeteransAffairs, Veterans Health Administration, Health Services Researchand Development Service, IIR – 02-224. Dr. Braun was alsosupported by a Geriatric Academic Career Award, KO1HP20480through the Health Resources and Services Administration (HRSA).This manuscript was written in the course of employment by theUnited States Government and it is not subject to copyright in theUnited States. The views expressed in this article are those of theauthors and do not necessarily represent the views of theDepartment of Veterans Affairs or HRSA.

Preliminary results of this study were presented in part at theAnnual Scientific Meeting of the American Geriatric Society inOrlando, FL.

References

[1] Snyder L, Leffler C, for the Ethics and Human Rights Committee, AmericanCollege of Physicians. Ethics manual, fifth edition. Ann Intern Med2005;142:560–82.

[2] Beauchamp TL, Childress JF. Principles of biomedical ethics. 6th ed. New York:Oxford University Press; 2009.

[3] Brody BA. Death and dying decision making. New York: Oxford UniversityPress; 1988.

[4] Heyland DK, Tranmer J, O’Callaghan CJ, Gafni A. The seriously ill hospitalizedpatient: preferred role in end-of-life decision making? J Crit Care 2003;18:3–10.

[5] Benbassat J, Pilpel D, Tidhar M. Patients’ preferences for participation inclinical decision making: a review of published surveys. Behav Med1998;24:81–8.

[6] Winzelberg GS, Hanson LC, Tulsky JA. Beyond autonomy: diversifying end-of-life decision-making approaches to serve patients and families. J Am GeriatrSoc 2005;53:1046–50.

[7] Kiesler DJ, Auerbach SM. Optimal matches of patient preferences for informa-tion, decision-making and interpersonal behavior: evidence, models andinterventions. Patient Educ Couns 2006;61:319–41.

[8] McKinley ED, Garrett JM, Evans AT, Danis M. Differences in end-of-life decisionmaking among black and white ambulatory cancer patients. J Gen Intern Med1996;11:651–6.

[9] Winter L, Parker B. Current health and preferences for life-prolonging treat-ments: an application of prospect theory to end-of-life decision making. SocSci Med 2007;65:1695–707.

[10] Allen RS, Allen JY, Hilgeman MM, DeCoster J. End-of-life decision-making,decisional conflict, and enhanced information: race effects. J Am Geriatr Soc2008;56:1904–9.

[11] Kwak J, Haley WE. Current research findings on end-of-life decision makingamong racially or ethnically diverse groups. Gerontologist 2005;45:634–41.

[12] Frost DW, Cook DJ, Heyland DK, Fowler RA. Patient and healthcare professionalfactors influencing end-of-life decision-making during critical illness: a sys-tematic review. Crit Care Med 2011;39:1174–89.

[13] Unequal treatment: understanding racial and ethnic disparities in health care.National Academy Press; 2002, http://www.nap.edu/catalog/10260.html.

[14] American Board of Internal Medicine. Cultural Competence: Addressing aMulticultural Society: The ABIM Report 1997–1998. Philadelphia: AmericanBoard of Internal Medicine; 1998.

[15] Murphy DJ, Knaus WA, Lynn J. Study population in SUPPORT: patients (asdefined by disease categories and mortality projections), surrogates, andphysicians. J Clin Epidemiol 1990;43:11S–28S.

[16] Morgan DL. Focus groups in qualitative research Qualitative research methodsseries, vol. 16. Newbury Park, CA: Sage Publications; 1988.

[17] Krueger RA. Analyzing & reporting focus group results. In: Morgan DL, KruegerRA, editors. The focus group kit. Thousand Oaks, CA: Sage Publications; 1998.

[18] Lofland J, Lofland L. Analyzing social settings: a guide to qualitative observa-tion and analysis. 3rd ed. Albany, New York: Wadsworth Publishing; 1995.

[19] Perry JE, Churchill LR, Kirshner HS. The Terri Schiavo Case: legal, ethical, andmedical perspectives. Ann Intern Med 2005;143:744–8.

[20] Phipps E, True G, Harris D, Chong U, Tester W, Chavin SI, et al. Approaching theend of life: attitudes, preferences, and behaviors of African-American andwhite patients and their family caregivers. J Clin Oncol 2003;21:549–54.

[21] Garrett JM, Harris RP, Norburn JK, Patrick DL, Danis M. Life-sustaining treat-ments during terminal illness: who wants what. J Gen Intern Med1993;8:361–8.

[22] Blackhall LJ, Frank G, Murphy ST, Michel V, Palmer JM, Azen SP. Ethnicity andattitudes towards life sustaining technology. Soc Sci Med 1999;48:1779–89.

U.K. Braun et al. / Patient Education and Counseling 94 (2014) 334–341 341

[23] Born W, Greiner KA, Sylvia E, Butler J, Ahluwalia JS. Knowledge, attitudes, andbeliefs about end-of-life care among inner-city African Americans and Latinos.J Palliat Med 2004;7:247–56.

[24] Duffy SA, Jackson FC, Schim SM, Ronis DL, Fowler KE. Racial/ethnic preferences,sex preferences, and perceived discrimination related to end-of-life care. J AmGeriatr Soc 2006;54:150–7.

[25] Moorman SM. Older adults’ preferences for independent or delegated end-of-life medical decision making. J Aging Health 2011;23:135–57.

[26] Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance careplanning on end of life care in elderly patients: randomised controlled trial. BrMed J 2010;340:c1345.

[27] Song J, Ratner ER, Wall MM, Bartels DM, Ulvestad N, Petroskas D, et al. Effect ofan end-of-life planning intervention on the completion of advance directivesin homeless persons: a randomized trial. Ann Intern Med 2010;153:76–84.

[28] Tamayo-Velazquez MI, Simon-Lorda P, Villegas-Portero R, Higueras-CallejonC, Garcıa-Gutierrez JF, Martınez-Pecino F, et al. Interventions to promote theuse of advance directives: an overview of systematic reviews. Patient EducCouns 2010;80:10–20.

[29] Sudore RL, Fried TR. Redefining the planning in advance care planning:preparing for end-of-life decision making. Ann Intern Med 2010;153:256–61.

[30] Perkins HS. Controlling death: the false promise of advance directives. AnnIntern Med 2007;147:51–7.

[31] Braun UK, McCullough LB. Preventing life-sustaining treatment by default.Ann Fam Med 2011;9:250–6.

[32] Schenker Y, Crowley-Matoka M, Dohan D, Tiver GA, Arnold RM, White DB. Idon’t want to be the one saying ‘we should just let him die’: intrapersonaltensions experienced by surrogate decision makers in the ICU. J Gen InternMed 2012;27:1657–65.

[33] Braun UK, Beyth RJ, Ford ME, McCullough LB. Voices of African American,Caucasian, and Hispanic surrogates on the burdens of end-of-life decisionmaking. J Gen Intern Med 2008;23:267–74.

[34] Braun UK, Ford ME, Beyth RJ, McCullough LB. The physician’s professional rolein end-of-life decision-making: voices of racially and ethnically diverse phy-sicians. Patient Educ Couns 2010;80:3–9.

[35] Azoulay E, Pochard F, Kentish-Barnes N, Chevret S, Aboab J, Adrie C, et al. Riskof post-traumatic stress symptoms in family members of intensive care unitpatients. Am J Respir Crit Care Med 2005;171:987–94.

[36] http://www.nytimes.com/2011/01/05/health/policy/05health.html [lastaccessed 02.23.13].