stability over time in the preferences of older persons for life-sustaining treatment

ORIGINAL RESEARCH

Stability Over Time in the Preferences of Older Personsfor Life-Sustaining Treatment

Ines M. Barrio-Cantalejo & Pablo Simón-Lorda &

Adoración Molina-Ruiz & Fátima Herrera-Ramos &

Encarnación Martínez-Cruz &

Rosa Maria Bailon-Gómez & Antonio López-Rico &

Patricia Peinado Gorlat

Received: 13 February 2012 /Accepted: 24 June 2012 /Published online: 4 January 2013# Springer Science+Business Media Dordrecht 2012

Abstract Objective: To measure the stability of life-sustaining treatment preferences amongst older peopleand analyse the factors that influence stability. Design:Longitudinal cohort study. Setting: Primary care centres,Granada (Spain). Eighty-five persons age 65 years orolder. Participants filled out a questionnaire with sixcontexts of illness (LSPQ-e). They had to decide wheth-er or not to receive treatment. Participants completed the

questionnaire at baseline and 18 months later.Results: 86 percent of the patients did not changepreferences. Sex, age, marital status, hospitalisa-tion, and self-perception of health and pain didnot affect preferences. Morbidity and the death ofa relative did. Conclusion: Stability of preferencesof older persons in relation to end-of-life decisionsseems to be more probable than instability. Some

Bioethical Inquiry (2013) 10:103–114DOI 10.1007/s11673-012-9417-4

This article is based on the research project “Stability of Life-Sustaining Preferences in Older People” (PI2008/362), fundedby the Andalusia Health Ministry.

I. M. Barrio-Cantalejo (*) : P. P. GorlatPrimary Care Centre Almanjayar,Granada, Spaine-mail: [email protected]

P. P. Gorlate-mail: [email protected]

P. Simón-LordaAndalusian Public Health School,Granada, Spaine-mail: [email protected]

A. Molina-RuizVirgen de las Nieves Hospital,Granada, Spaine-mail: [email protected]

F. Herrera-Ramos :A. López-RicoPrimary Care Centre Salvador Caballero,Granada, Spain

F. Herrera-Ramose-mail: [email protected]

A. López-Ricoe-mail: [email protected]

E. Martínez-CruzPrimary Care Centre Zaidin( Granada, Spaine-mail: [email protected]

R. M. Bailon-GómezPrimary Care Centre Cartuja( Granada, Spaine-mail: [email protected]

factors, such as the death of a relative or the increase inmorbidity, can change preferences. These findings haveimplications for advance directives (ADs) and advancecare planning.

Keywords End of life . Decision-making . Advancedirectives . Advance care planning

Advance directives (ADs) are legal documents that ex-press patients’ preferences with regard to health treat-ment at the end of life in the event that they proveincapable of making their own decisions at any giventime. One of the objectives of these documents is toentail the proxy to identify the health care interventionsthat should or should not be carried out, in accordancewith the values and preferences previously manifestedby the patient. However, ADs also have been contro-versial, especially in relation to their usefulness or ef-fectiveness in increasing the quality of death of thepatients. These documents have detractors (Fagerlinand Schneider 2004; Perkins 2007; Winter, Parks, andDiamond 2010) and defenders (Silveira et al. 2010;Hickman et al. 2005; Hersch, Langa, and Iwashyna2011). One argument raised by detractors points at thefutility of discussing such questions and recording themin writing, given that patients change their preferencesand decisions over time. But the evidence supportingthis argument is not clear and can even be contradictory.A number of studies show that treatment preferencescan remain stable, often over long periods of time(Everhat and Pearlman 1990). Thus, age, gender, race,educational level, or changes in health do not necessar-ily produce changes in preferences, and ADs appear tobe a factor that promotes stability (Pruchno et al. 2008).Certain studies have found that the greatest degree ofstability is found in settings involving the most seriousillnesses and amongst patients who reject treatment(Ditto et al. 2003). Stability may even affect, both in-creasing and decreasing, the desire to participate inclinical research studies (Lingler, Rubin, and Saxton2010). However, other authors suggest that we shouldbe prudent before affirming the stability of the decisionswritten in an AD document (McParland et al. 2003). Forexample, a number of contributors find that changes inphysical or mental health or the illness or death of aloved one precede preference changes. These authorsadvocate a review of patient preferences in the event of

such occurrences (Fried et al. 2007). Other studiesfocusing on elderly patients have found that thepatients tend to change their preferences over time,particularly where the patient is in poor health (Friedet al. 2006). Nevertheless, in all of these studies themost interesting point is the analysis of the sense inwhich the aforementioned preferences change; attimes the factors influencing change increase thedesire to receive treatment, whilst on other occasionsthe reverse is true.

Spain possesses one of the most comprehensivelegislations on ADs and proxy decision-making withinthe European Union (Simón-Lorda et al. 2008). Nev-ertheless, awareness of this tool remains low, bothamongst professionals and the general public. There-fore, the introduction of advance directives is extreme-ly sparse. Around three in every 1,000 inhabitantshave completed an AD document. Therefore, it is notsurprising that there are very few studies that provide adetailed analysis of the preferences of citizens withregard to health decisions at the end of life and, natu-rally, no studies that focus on the stability of thesepreferences (Nebot et al. 2010). This study was envis-aged as a first step along the road toward furtheranalysis of this area amongst Spanish patients, pro-viding results that may be compared with otherpapers. Our study was designed to measure thestability of life-sustaining treatment preferencesamongst people age 65 and over and analyse thefactors that influence stability.

Methodology

This is a longitudinal cohort study of a group ofindividuals who are 65 years of age and older andinscribed in the User Database of five Primary HealthCare Centres (CS) of the Primary Health Care Districtin Granada, Spain (BDUG). The Primary Health CareDistrict is organised into 17 CS and attends a popula-tion of 41,728 individuals age 65 and over.

Inclusion and Exclusion Criteria

Individuals 65 years of age and older, inscribed inthe BDUG as patients of the five participating CSand being seen at the offices of the nurses involvedin the study, were included. Those individuals inca-pable of completing the questionnaires, suffering

104 Bioethical Inquiry (2013) 10:103–114

from a terminal illness, or unwilling to participate in allphases of the study were excluded.

Questionnaires

Two questionnaires were employed: the FamilyAPGAR questionnaire and the Life Support Preferen-ces Questionnaire (LSPQ). The Family APGAR ques-tionnaire (Smilkstein, Ashworth, and Montano 1982)is a standardised questionnaire to measure familyfunction. It has been validated for use in the Spanishpopulation (Bellón-Saameño et al. 1996). It consists offive items that evaluate an individual’s perception inrelation to the support offered by their family. This ismeasured on a scale of zero to 10, ranging fromserious dysfunction to functioning normally.

Treatment preferences, the main dependent variableof the study, were gathered via Beland and Froman’s(1995) Life Support Preferences Questionnaire, vali-dated for use in the Spanish population (LSPQ-e,Barrio-Cantalejo et al. 2008). The LSPQ describessix contexts of illness with varying degrees of severity.The interviewee must decide whether or not he or shewishes to receive life-sustaining treatment in eachcontext. Choosing treatment is registered as a “1,”whilst refusing treatment is registered as a “0.” Thus,the questionnaire is scored between +6 (treatment inall contexts) and 0 (refusal of treatment in all con-texts). Therefore, “change of preferences,” understoodas the difference in initial and subsequent LSPQscores, has a range of −6 to +6. A patient refusing toreceive treatment in all contexts in the first interviewwill register a score of 0, whilst requesting treatment inall contexts in the second interview will register ascore of 6, providing a change of preferences of +6.Where these scores are reversed, the change of prefer-ences would be registered as −6.

Data Gathering

In the first phase, subjects were contacted during nurs-ing consultations to determine their eligibility. Informedconsent was obtained. Information was gathered in re-lation to age, gender, educational level, morbidity(chronic diseases), the Family APGAR questionnaire,and the completion of advance directives. Subsequently,the LSPQ-e questionnaire was completed. The secondphase of the study was implemented 18 months after thefirst phase. Once again, information on all variables and

questionnaires was gathered. On this occasion, inter-viewees also were asked whether they had been admit-ted to hospital or experienced the loss of a loved oneover the course of the last year. Finally, they were askedto evaluate their health and their experiences of pain inthe last month.

Ethical Aspects

The study was approved by the Ethical ResearchCommittee of the Virgen de las Nieves Hospital inGranada.

Statistical Analysis

With the objective of analysing “change of preferen-ces,” understood as the differences between globalLSPQ scores at the end and beginning of the study,the resulting scores were divided into three categories.Scores of −1, 0, or +1 were considered as indicating “nochange in preferences”; scores of between −6 and −2were considered to reflect “less treatment”; and scoresof between +2 and +6 were classified as “moretreatment.”

A descriptive analysis of the variables was carriedout, calculating frequencies and percentages for qual-itative and mean variables, deviations, and numericmaximums and minimums. Variable changes, in thefirst instance and after 18 months, were analysed viaMcNemar’s test in categorical variables and via pairedStudent’s t-test in quantitative variables. The chi-square test was applied, linking the “change of prefer-ences” variable to the remaining independent qualita-tive variables. Odds ratio values were calculated, withconfidence intervals in the case of dichotomous vari-ables. The Student’s t-test was applied to the numeri-cal variables. Multivariate logistic regression wasemployed to control possible factors of confusion inpreference change, taking as variables those thatwould have proved significant in bivariate analysisor that had particular relevance in the relationshipbetween variables.

Results

We contacted 286 patients inscribed in the BDUG(Fig. 1). Of these, 136 were excluded for a numberof different reasons for the initial study. Of the 150

Bioethical Inquiry (2013) 10:103–114 105

who completed the questionnaire in the initial phase,65 failed to complete it 18 months later and weretherefore excluded from the study. In the end, 85individuals age 65 years or older participated in thestudy, of which 60 percent were women, 85 percentpossessed no more than primary education, and 66percent were married. The average age of participantswas 68.9, with an average number of diseases of 2.8and a family support of 8.7 (APGAR). No differenceswere found between the 85 participants who complet-ed both questionnaires and the 65 participants whocompleted just the first questionnaire and were exclud-ed from the study (Table 1). The changing character-istics of the 85 participants at baseline and after18 months are provided in Table 2. In the individu-alised “before and after” comparison of the generalvariables differences were only found in the case ofdiabetes (p<0.05): 9.2 percent of the individuals haddeveloped it in the second phase of the study. How-ever, the global average number of diseases signifi-cantly increased, with 2.8±1.4 health problems in theinitial intervention and 3.1±1.5 in the second (p<

0.01), whereby we can affirm that the objective stateof health of the group deteriorated over the time of thestudy. Furthermore, treatment rejection was not asprevalent in the second intervention, with results thatwere almost significant (p=0.085, 3.3±2.4 vs. 2.9±2.4). None of the patients interviewed filled in an ADdocument, which applies to both the period before thestudy and during monitoring.

Meaning and Stability of Preferences

The majority of patients responded that they would notwish to receive treatment in five of the six LSPQ con-texts and their opinions remained unchanged 18 monthslater (Table 3). In one of the scenarios—the only scenariowhere individuals were obliged to express their opinionson treatment for another person rather than themselves—the majority accepted treatment, both at the beginningand at the end of the study period. Therefore, the stabilityof the preferences is striking: There are no statisticallysignificant differences between each intervention in anyof the six LSPQ contexts. Patients who initially

Patients contacted286

Randomised(Completed the first

questionnaire)150

Not found 51

Physical disability 13

Refused 32

Dead 7

Terminally ill 12

Cognitive impairment 21

Not randomised136

Did not complete the second questionnaire

65

Not found 25

Refused 25

Physical disability 6

Terminally ill 2

Dead 7

Completed the second questionnaire

85

Fig. 1 Selection and ran-domization of patients


Table 1 Comparison betweenparticipants and non-participantsin the second questionnaire infrequency and percentage

Participants in the firstquestionnaire 150 (100)

Participants in the secondquestionnaire 85 (56.7)

Dropouts65 (43.3)

P value

Age 68.9 68.4 0.899

Sex

Male 34 (40) 27 (42.3) 0.720Female 51 (60) 38 (57.7)

Education

Without studies 29 (34.1) 26 (40) 0.296Primary school 43 (50.6) 24,7 (38)

High school 7 (8.2) 7.2 (11)

University 6 (7.1) 7.2 (11)

Marital status

Single 6 (7.1) 5 (7.7) 0.950Married 56 (65.9) 42 (64.5)

Partner 4 (4.7) 3 (4.6)

Divorced 1 (1.2) 1 (1.5)

Widower 18 (21.2) 14 (21.5)

Hypertension 58 (68.2) 46 (70.1) 0.748

Osteoarthritis 51 (60) 38 (59.2) 0.900

Hypercholesterolemia 33 (38.8) 18 (27.4) 0.55

Heart disease 19 (22.4) 15 (22.9) 0.922

Depression 18 (21.2) 9 (14.4) 0.159

Diabetes mellitus 20 (23.5) 18 (27.9) 0.449

Chronic bronchitis 17 (20) 8 (12.4) 0.99

Asthma 13 (15.3) 7 (11.4) 0.370

Brain stroke disease 2 (2.4) 4 (5.5) 0.247

COPD 2 (2.4) 1 (1) 0.371

Other chronic diseases 7 (7.2) 7 (11.4) 0.418

Caregiver 9 (10.6) 10 (14.9) 0.329

Hospitalisation last year 12 (14.1) 10 (15.4) 0.778

Death of a relative last year 21 (24.7) 18 (28.4) 0.526

Serious illness of a relative last year 7 (8.6) 4 (5.5) 0.788

Self-perceived health

Excellent 2 (2.4) 2 (2.8) 0.112Good 37 (43.5) 30 (45.5)

Medium 29 (34.1) 26 (40.3)

Poor 17 (20) 7 (11.4)

Pain in the last month

None 37(43.5) 27 (42.3) 0.765A little 14 (16.5) 10 (15.4)

Regular 10 (11.8) 10 (15.9)

Quite 16 (18.8) 9 (14.4)

Much 8 (9.4) 8 (11.9)

Family support (APGAR scale of 1 to 10) 8.68 (8.2–9.2) 9.05 (8.6–9.9) 0.902

Refusal of life-support treatment(scale of 1 to 6)

3.28 (2.8–3.8) 3.29 (3.1–3.9) 0.952


answered affirmatively to any question (76.7 percent)continued to answer affirmatively to the same question(88.2 percent). Patients who initially responded negative-ly (75 percent) were equally consistent: 90 percent con-tinued to answer “no” 18 months later. A globalcomparison of patients’ decisions shows that 86 percentof the patients did not change their preferences andremained stable.

Bivariate Analysis of Stability

Bivariate analysis (Table 4) showed that age and gen-der were not significantly linked to preference stabil-ity. Men and women exhibited preference stability;however, women appear to be more prone to

preference change than men, tending to desire “moretreatment” after 18 months (13.7 percent compared to5.9 percent), although without statistical significance.Hospitalisation, perception of health, and sufferingpain do not appear to affect treatment preferences.Only the number of diseases suffered and the deathof a relative were statistically associated with an in-crease in the desire to receive treatments.

Multivariate Logistic Regression

The following variables were included in the multi-variate model as predictors of preference change: thedeath of a relative over the course of the last year, thenumber of diseases in the second intervention, and

Table 2 Characteristics of par-ticipants at baseline and at18 months

Health issues Baseline 18 months P value

Hypertension 58 (68.2) 61. (71.8) 0.375

Osteoarthritis 51 (60) 56 (65.9) 0.125

Hypercholesterolemia 33 (38.8) 36 (42.4) 0.250

Heart disease 19 (22.4) 21 (24.7) 0.625

Depression 18 (21.2) 17 (20) 1

Diabetes mellitus 20 (23.5) 26 (30.6) 0.031

Chronic bronchitis 17 (20) 16 (18.8) 1

Asthma 13 (15.3) 13 (15.3) 1

Brain stroke disease 2 (2.4) 4 (4.7) 0.500

COPD 2 (2.4) 3 (3.5) 1

Other chronic diseases 7 (7.2) 11 (12.9) 0.125

Caregiver 9 (10.6) 10 (11.8) 1

Hospitalisation in last year 12 (14.1) 13 (15.3) 1

Death of a relative last year 21 (24.7) 25 (29.4) 0.618

Serious illness of a relative last year 7 (8.6) 7 (8.2) 1

Self-perceived health

Excellent 2 (2.4) 2 (2.4)

Good 37 (43.52) 36 (42.4) 1

Medium 29 (34.11) 33 (38.8)

Poor 17 (20) 14 (16.5)

Pain in last month 0.113None 37(43.52) 22 (25.9)

A little 14 (16.47) 21 (32.9)

Regular 10 (11.76) 7 (8.2)

Quite 16 (18.82) 22 (25.9)

Much 8 (9.41) 13 (15.3)

Mean family support (APGAR scale of 0 to 10) 8.68 (8.18–9.18) 8.58 (7.99–9.17) 0.905

Average number of scenarios with refusal oflife-sustaining treatment (score “0”) in the6 scenarios of LSPQ

3.28 (2.77–3.79) 2.94 (2.44–3.44) 0.838


Table 3 Stability of preferences at baseline and at 18 months

Preference Baseline(n=85)

18 months (n=85) P value

Yes No

Health state: COMA Yes 29 (34.1) 22 (75.9) 7 (24.1) 1Intervention: CPR

You recently suffered a major stroke leaving you in a coma and unable to breathewithout a machine. After a few months, the doctor determines it is unlikely youwill come out of the coma. If your doctor had asked you whether to try to reviveyou if your heart stopped beating in this situation, what would you have told thedoctor to do?

No 56 (65.9) 6 (10.7) 50 (89.3)

Health state: PVS Yes 30 (35.3) 23 (76.7) 7 (23.3) 1Intervention: ANTIBIOTICS

You are an elderly single person in a persistent vegetative state with no hope forfunctional recovery. You are able to open your eyes and occasionally focus buthave no recognition of friends and family. You are able to breathe on your ownthrough a tube in your neck and are artificially fed through a tube in your stomach.You recently developed pneumonia. The doctor tells your family that if the pneumoniais not treated with antibiotics you will die. What would you want your family to tell thedoctor to do?

No 55 (64.7) 7 (12.7) 48 (87.3)

Health state: CANCER Yes 36 (42.4) 30 (83.3) 6 (16.7) 0.791Intervention: CHEMOTHERAPY

You have been diagnosed as having a type of cancer that probably cannot be cured.Your doctor indicates that chemotherapy may help you live longer. The doctor alsotells you that the side effects of chemotherapy can make you very ill. They can includesevere nausea and vomiting, diarrhoea, and hair loss. What would you decide to do?

No 49 (57.6) 8 (16.3) 41(83.7)

Health state: DEMENTIA Yes 34 (40) 30 (88.2) 4 (11.8) 0.180Intervention: AMPUTATION

You are unable to make medical decisions for yourself because you have been declaredmentally incompetent due to advanced Alzheimer’s disease. You are a diabetic andhave developed an untreatable infection in your leg. The doctor recommends to yourfamily that unless you have the leg removed you will die in a very short time. Whatwould you have your family tell the doctor to do?

No 51 (60) 10 (19.6) 41 (80.4)

Health state: PAIN Yes 35 (41.2) 29 (82.9) 6 (17.1) 1Intervention: ANH

You broke your hip and are recuperating from an operation to repair it. Since theoperation you have had constant, untreatable hip pain that may never change.You have become severely withdrawn due to your pain and will not speak toanyone. You refuse to eat and after several days the doctor wants to feed you usinga feeding tube placed in your stomach. What would you have the doctor do?

No 50 (58.8) 5 (10) 45 (90)

Health state: COMA Yes 61 (71.8) 52 (85.2) 9 (14.8) 0.607Intervention: CPR

You have an adolescent relative who has suffered trauma at birth and has had a poorquality of life since birth. Recently your relative developed kidney failure. Thedoctors tell your family they may be able to keep your relative alive with theuse of daily dialysis. Dialysis would require three hours of daily blood cleansingby machine. If you were asked to make this decision, what would you want thedoctors to do?

No 24 (28.2) 6 (25) 18 (75)

CPR Cardiopulmonary Resuscitation, PVS Persistent Vegetative State, ANH Artificial Nutrition and Hydration


Table 4 Characteristics associated with changes in preferences

n More treatment No change Less treatment P value

Mean Age 85 68 (66.13–69.87) 68.5(65.84–1.16) 73.5(71.95–75.05) 0.507

Sex (%) Male 34 5.9 85.3 8.8 0.495Female 51 13.7 76.5 9.8

Education (%) Without studies 29 3.4 82.8 13.8 0.495Primary school 43 16.3 76.7 7

High school 7 0 85.7 14.3

University 6 16.7 83.3 0

Marital status (%) Single 6 50 50 0 0.495Married 56 8.9 83.9 7.1

Partner 4 0 100 0

Divorced 1 0 0 100

Widower 18 5.6 77.8 16.7

Morbidity (%) New problems 6 33.3 16.7 50 <0.001No change or better 79 8.9 84.8 6.3

Care giver (%) No 75 9.3 81.3 9.3 0.579Yes 10 20 70 10

Family APGAR (%) Better 9 22.2 66.7 11.1 0.177No change 10 7.1 84.3 8.6

Worse 6 33.3 50 16.7

Hospital admissions (%) No 72 12.5 77.8 9.7 0.375Yes 13 0 92.3 7.7

Illness of a relative (%) No 60 8.3 81.7 10 0.570Yes 25 16 76.0 8.0

Death of a relative (%) No 78 7.7 83.3 9 0.011Yes 7 42.9 42.9 14.3

Self-perceived health (%) Excellent 2 50 0 50 0.106Good 36 5.6 88.9 5.6

Regular 33 12.1 75.8 12.1

Poor 14 14.3 78.6 7.1

Pain last month (%) No pain 22 4.5 90.9 4.5 0.388A little 21 19 71.4 9.5

Regular 7 0 100 0

Quite 22 9.1 81.8 9.1

Much 13 15.4 61.5 23.1

Table 5 Characteristics associ-ated with change in preferences:bivariate and multivariateanalysis

Bivariate analysis Multivariate analysis

Variable OR IC 95 % OR IC 95 %

Death of a relative last year

No 1

Yes 2.148 (0.807, 5.721) 3.405 (1.203, 9.634)

Increase in the number of diseases 1.333 (0.980, 1.814) 1.423 (1.037, 1.952)

Education

Without studies or primary school 3.828 (0.949, 15.431) 3.579 (0.831, 15.417)High school or university 1


education level, as shown in Table 5. Logistic regres-sion to predict the probability of choosing more, less,or the same treatment indicated that the death of arelative over the course of the last year entails apreference change risk of 3.4 after 18 months, adjust-ing for the remaining variables of the model. Further-more, each additional patient disease after 18 monthsincreases the risk of preference change by 42 percent,adjusting for the remaining variables. Finally, educa-tion under the primary level increases the risk ofpreference change by a factor of 3.57, although with-out significant results.

Discussion

Our study aimed to measure the stability of life-sustaining treatment preferences amongst people age65 and older and analyse the factors that influencestability. The most striking result is the marked stabil-ity of treatment or non-treatment preferences shownby the participants: 86 percent of the patients did notchange their first preferences 18 months later. Nosignificant changes were produced in any of the sixLSPQ contexts, either globally or individually. In gen-eral, preference content entailed a rejection of treat-ment. The majority expressed a preference fortreatment in only one scenario: the only context whereparticipants had to decide on behalf of another personrather than themselves. Moreover, the other person inthis case was a minor—an adolescent. This resultsuggests something that has been confirmed in otherstudies in Spain: There is a contradiction betweenwhat people desire for others and what they desirefor themselves (Simón-Lorda et al. 1994). When peo-ple decide in relation to themselves, they may decideto withdraw from treatment in clinical contexts with apoor prognosis; however, when deciding on behalf ofothers, their opinions appear more conservative andthey are more inclined to try everything up until theend. Furthermore, the marked age difference amongstthe participants of this study and the hypotheticalprotagonist in this scenario (an adolescent) may havehad a significant emotional influence; for example, theparticipants may have approached this scenario withthe idea of having to decide for “one of their grand-children.” In any event, the general stability of thepreferences of elderly people in our study directly ques-tions the argument suggesting that filling out an advance

directives document or asking people their preferencesin Advanced Care Planning processes is pointless aspreferences are volatile and prone to change.

The results of the study also show that, where itoccurs, preference change takes place at a global level,with a slight tendency toward treatment rejection,although of no statistical significance. However, age,gender, marital status, the degree of family support,and the presence or lack of a carer are not significantlylinked to preference change. Surprisingly, neither par-ticipant hospitalisation nor the illness of a close familymember appears to have any influence. It is also strikingthat changes in self-perception of health and sufferingpain do not generate differences in the LSPQ responsesin the two interventions of the study. Amongst all of thefactors analysed, only three appeared to be linked topreference change: educational level, experiencing theloss of a loved one, and an increase in morbidity. In twoof these three factors—an increase in morbidity andeducational level—preference change entailed desiringless treatment, although in the case of the latter, thechange was not statistically significant. Experiencingthe loss of a close familymember in the interval betweenthe two measurements had a considerable impact in thesense of generating a greater desire for treatment. Themotives that explain this phenomenon should be studiedin greater depth, perhaps employing qualitative researchmethodologies. It may be the case that, amongst theelderly, direct awareness of the death of anotherperson—particularly where this is a loved one—increases the fear of one’s own death, which appearscloser and more imminent. The rejection of death itselfand strengthening the desire for “immortality”—a char-acteristic of industrialised modern societies in the West(Elías 1987)—is reinforced on this occasion, leading toa desire to receive treatment at any cost.

Another striking result is the participants’ failure tocomplete an advance directives document, both beforeand after the research process. However, this result iscoherent given the aforementioned difficulty of Spanishcitizens when attempting to transfer their preferences toan advance directives document. In 2010, the Centre forSociological Research (CIS), Spain’s official centre ofreference for opinion studies, published an importantstudy concerning caring for patients with illnesses in theterminal phase (Centro de Investigaciones Sociológicas2010). When asked whether or not they had thoughtabout the possibility of producing an advance directive,87.3 percent of those surveyed stated that they had not.


Moreover, 23.4 percent stated that they would neverproduce such a document. Thus, the results of both ourstudy and the CIS survey open the path to the planning ofnew information and awareness strategies in this areaaimed at Spanish citizens, perhaps via the reinforcementof advance care planning strategies.

These results are similar in certain aspects to otherstudies published in the international literature, althoughthe similarity does not apply to all results. For example,Danis et al. (1994), when studying preference changeamongst 2,073 North American patients over the age of64 (employing a methodology very similar to our own),found that the most frequent result was a lack of prefer-ence change. Two years after the initial interview, 85percent of the patients maintained the same decisions:fundamentally, the rejection of treatment, a result verysimilar to ours. Also, as in our study, age, gender, andmarital status were not associated with these changes.Having filled in an advance directives document provedto be an important factor for stability: 41 percent ofpatients with no AD changed their preferences, whilstonly 14 percent of those who had completed such adocument altered their views. However, in contrast toour study, hospitalisation and the deterioration of socialsupport were found to be linked to treatment changes,significantly in the sense of desiring “more treatment.”Amongst the factors linked to a change in favour of“more treatment,” they found a greater degree of immo-bility, depression, or suffering an accident. Unfortunate-ly, they failed to study the experience of the death of aloved one, a factor that has proven relevant in our study.The stability of preferences is also the main result of thework byWittink et al. (2008). In this longitudinal cohortstudy, 721 medical students in the graduating classesfrom 1948 to 1964 at Johns Hopkins University com-pleted a mailed checklist questionnaire in 1999 and2002 (mean age 69 years at baseline). They were askedto consider their preferences of treatment in relation to10 interventions if they suffered irreversible and severebrain damage. The main result was that 73 percent of therespondents did not change their preferences over time.The authors did not find evidence that changing mentalor physical health were associated with changing pref-erences of care. The most important factor associatedwith the changing of preferences was not having anadvance directive at baseline. In another study, Martinand Roberto (2006) followed 21 older adults for a periodof 7 years to examine the stability of health care deci-sions. Again, no significant change in values or

preferences was found for life-sustaining treatments be-tween the starting and ending point of the study. Even inthe above-mentioned study by Fried et al. (2007) fre-quently cited to underline the instability of preferences,the majority of the older persons of the cohort (65percent) had consistent preference trajectories, althoughthe proportion decreased to 52 percent and 51 percentwhen asked about their willingness to risk physical orcognitive disability in order to avoid death. So, in thelight of all these studies we could say that, as a generalapproach, stability and consistency of preferences ofolder persons in relation to end-of-life decisions seemto be more frequent than instability and inconsistency,although some factors can change this trend. Our ownstudy also points in that direction.

Our study presents a number of evident short-comings. The size of the sample is small and non-representative, both of which are modest in com-parison to other studies. Moreover, it is limited to aspecific geographical area, so the generalisation ofresults must be carried out with prudence. Whilstthe LSPQ has shown a sufficient degree of validitywhen dealing with hypothetical situations, it is pre-carious to assume that the final decisions thatwould be taken by those surveyed, under real cir-cumstances, would necessarily be the same. More-over, the settings are described in an oversimplifiedmanner, whereby we cannot be certain that thesubjects proved capable of being aware of the entirescene in relation to which they were questioned. Inaddition, the responses that are provided are closed,leaving no room for subtleties. Another restrictionrelates to the length of time that was allowed topass between the two data-gathering processes. Itmay be the case that, had a longer or shorterinterval been employed, the results would bedifferent.

In any event, the findings of this study mayhave important implications for the developmentof advance directives or advance care planning inSpain. The first implication is the urgent need toimprove the information provided to citizens inrelation to these documents and to facilitate accessto the process of filling them in. Secondly, weshould be more confident that the majority ofpeople who complete an advance directives docu-ment or participate in an advance care planningprocess will maintain stable preferences over time.However, as a third implication, health care


professionals must be aware of the existence offactors that may change treatment preferences.Thus, over time, individuals with higher culturallevels and a greater overall deterioration of healthmay change their preferences, veering toward adesire for less treatment. In contrast, those individ-uals who experience the death of a close familymember may vary in the opposite sense. Therefore,it must be stressed that advance care planning is adynamic process that must be continually revisedwith professionals, particularly where patients aresubject to any of the occurrences outlined above(Sudore and Fried 2010). Signing an advancedirectives document at any stage of life, whilstindicating preferences over time in a stable fash-ion, does not preclude the possibility of such pref-erences changing at a given point due to factorssuch as those we have indicated. Drawing attentionto this is important in the Spanish context, wherelegal regulation of advance directives does notcontemplate the automatic expiry of these docu-ments: People can change their preferences andforget to change the document. Therefore, healthcare professionals must be on their guard to drawthis question to the attention of elderly patients.Finally, given the contradictory responses providedin the LSPQ in relation to what one wishes “foroneself” and what one wishes “for others,” in boththe advance care planning of decisions and thefilling in of an advance directives document, therole of the proxy in the decision-making processmust be thoroughly revised. For example, a clini-cal trial carried out using the same populationgroup employed in this study showed that concor-dance between the desires of patients and theirproxies improved where nurses actively intervenedto facilitate debate between them, enabling the proxyto have a clearer idea of the values and preferences ofthe patient (Barrio-Cantalejo et al. 2009). This resultsuggests again that the role of nurses in advance careplanning can be essential to increase the quality of end-of-life care.

Acknowledgments This article is based on the research project506 “Stability of Life-Sustaining Preferences in Older People” 507(PI2008/362), funded by the Andalusia Health Ministry. We alsowant to thank Maria del Mar Rodriguez del Águila and SabinaPérez Vicente for their support in the statistical analysis.

Statement of Competing Interests No potential conflicts ofinterest are reported by the authors.

References

Barrio-Cantalejo, I.M., R.M. Bailón-Gómez, M.C. Cámara-Medina, M.A. Carmona Cabezas, M.E. Martinez Cruz,and P. Quesada Lupiáñez. 2008. Validation of the Life-Support Preferences Questionnaire (LSPQ) for its use inSpain. Atencion Primaria 40(7): 345–349.

Barrio-Cantalejo, I.M., A. Molina-Ruiz, P. Simón-Lorda, et al.2009. Advance directives and proxies’ predictions aboutpatients’ treatment preferences. Nursing Ethics 16(1): 93–109.

Beland, D.K., and R.D. Froman. 1995. Preliminary validation ofa measurement of life support preferences. Journal ofNursing Scholarship 27(4): 307–310.

Bellón-Saameño, J.A., A. Delgado-Sánchez, J.D. Luna delCastillo, and P. Lardelli Claret. 1996. Validity and reli-ability of the Family APGAR family function test. Aten-cion Primaria 18(6): 289–296.

Centro de Investigaciones Sociológicas [Centre for SociologicalResearch] (CIS). 2010. Atención a pacientes con enferme-dades en fase terminal [Care for patients with terminalillness], study 2803, May–June 2009. Madrid: CIS.

Danis, M., J. Garrett, R. Harris, and D.L. Patrick. 1994. Stabilityof choices about life-sustaining treatment. Annals of InternalMedicine 120(7): 567–573.

Ditto, P.H., W.D. Smucker, J.H. Danks, et al. 2003. The Stabilityof older adults’ preferences for life-sustaining medicaltreatment. Health Psychology 22(6): 605–615.

Elías, Norbert. 1987. La soledad de los moribundos [The lone-liness of the dying]. Trans. C. Martín. Madrid: Fondo deCultura Económica de España. Originally published asÜber die Einsamkeit der Sterbenden in unseren Tagen(Frankfurt am Main: Suhrkamp, 1982).

Everhat, M.A., and R.A. Pearlman. 1990. Stability of patientpreferences regarding life-sustaining treatments. Chest97(1): 159–164.

Fagerlin, A., and C.E. Schneider. 2004. Enough: The failure ofthe living will. The Hastings Center Report 34(2): 30–42.

Fried, T.R., A.L. Byers, W.T. Gallo, et al. 2006. Prospective studyof health status preferences and changes in preferences overtime in older adults. Archives of Internal Medicine 166(8):890–895.

Fried, T.R., J. O’Leary, P. Van Ness, and L. Fraenkel. 2007.Inconsistency over time in the preferences of older personswith advanced illness for life-sustaining treatment. Journalof the American Geriatrics Society 55(7): 1007–1014.

Hersch, N.L., K.M. Langa, and T.J. Iwashyna. 2011. Regionalvariation in the association between advance directives andend-of-life Medicare expenditures. The Journal of the Amer-ican Medical Association 306(13): 1447–1453.

Hickman, S.E., B.J. Hammes, A.H. Moss, and S.W. Tolle. 2005.Hope for the future: Achieving the original intent of ad-vance directives. In Improving end of life care: Why has itbeen so difficult?, ed. B. Jennings, G.E. Kaebnick, and


T.H. Murray, S26–S30. Garrison, NY: The HastingsCenter. http://www.thehastingscenter.org/uploadedFiles/Publications/Special_Reports/improving_eol_care_why_has_it_been_so_difficult.pdf.

Lingler, J.H., D. Rubin, and J.A. Saxton. 2010. Temporalstability of receptiveness to clinical research on Alz-heimer disease. Alzheimer Disease and Associated Dis-orders 24(suppl 1): S30–S34.

Martin, V.C., and K.A. Roberto. 2006. Assessing the sta-bility of values and health care preferences of olderadults: A long-term comparison. Journal of Geronto-logical Nursing 32(11): 23–31.

McParland, E., A. Likourezos, E. Chichin, T. Castor, and B.E.Paris. 2003. Stability of preferences regarding life-sustaining treatment: A two-year prospective study of nurs-ing home residents. The Mount Sinai Journal of Medicine70(2): 85–92.

Nebot, C., B. Ortega, J.J. Mira, and L. Ortiz. 2010. Dying withdignity: A study of living wills. Gaceta Sanitaria 24(6):437–445.

Perkins, H.S. 2007. Controlling death: The false promise ofadvance directives. Annals of Internal Medicine 147(1):51–57.

Pruchno, R.A., M.J. Rovine, F. Cartwright, and M. Wilson-Genderson. 2008. Stability and change in patient preferen-ces and spouse substituted judgments regarding dialysiscontinuation. The Journals of Gerontology Series B: Psy-chological Sciences and Social Sciences 63(2): S81–S91.

Silveira, M.J., S.Y. Kim, and K.M. Langa. 2010. Advancedirectives and outcomes of surrogate decision-making be-fore death. The New England Journal of Medicine 362(13):1211–1218.

Simón-Lorda, P., P. Domenech-Senra, L. Sánchez-Beiza, et al.1994. Querría usted saber que tiene cáncer? MediFam:Revista de Medicina Familiar y Comunitaria 4(3): 127–136.

Simón-Lorda, P., M.I. Tamayo-Velázquez, and I.M. Barrio-Cantalejo. 2008. Advance directives in Spain: Perspectivesfrom a medical bioethicist approach. Bioethics 22(6): 346–354.

Smilkstein, G., C. Ashworth, and D. Montano. 1982. Va-lidity and reliability of the family APGAR as a test offamily function. The Journal of Family Practice 15(2):303–311.

Sudore, R.L., and T.R. Fried. 2010. Redefining the “planning”in advance care planning: Preparing for end-of-life deci-sion making. Annals of Internal Medicine 153(4): 256–261.

Winter, L., S.M. Parks, and J.J. Diamond. 2010. Ask a differentquestion, get a different answer: Why living wills are poorguides to care preferences at the end of life. Journal ofPalliative Medicine 13(5): 567–572.

Wittink, M.N., K.H. Morales, L.A. Meoni, et al. 2008. Stabilityof preferences for end-of-life treatment after 3 years offollow-up: The Johns Hopkins Precursors Study. Archivesof Internal Medicine 168(19): 2125–2130.


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