Life Support Preferences Research Articles

Advance care planning behavioral intentions predict older adults’ cardiopulmonary resuscitation preferences

Whether to perform cardiopulmonary resuscitation (CPR) in emergencies is a critical discussion in advance care planning (ACP). Few studies have investigated the relationship between older adults’ ACP behavioral intention and CPR preferences. The study aimed to understand whether ACP behavioral intention predicts CPR preferences in older adults. Cross-sectional secondary data was applied. Two hundred twenty participants from two studies completed an ACP behavioral intention assessment and a cartoon version of the life support preferences questionnaire. Among the participants, 78 preferred CPR and 142 did not. Responses differed significantly by sex (X2 = 3.870, p = 0.049), age (X2 = 6.105, p = 0.013), and ACP behavioral intention (t = 2.933, p = 0.004). The logistic regression results indicated that older adults who tended to undertake ACP did not like to receive CPR (OR = 0.534, p = 0.035). ACP intervention methods should differ depending on CPR preference. Future research should develop ACP interventions for individuals with different CPR preferences.

Measuring patients’ medical treatment preferences in advance care planning: development and validation of the Treat-Me-ACP instrument – a secondary analysis of a cluster-randomized controlled trial

BackgroundAdvance Care Planning interventions should be evaluated as broadly as possible to gain a holistic understanding of the Advance Care Planning process. However, validated early stage outcome instruments are lacking. Therefore, the Treatment-Preference-Measure-Advance Care Planning (Treat-Me-ACP) instrument was developed and validated as part of the cluster-randomized controlled trial STADPLAN (Study on Advance Care Planning in care-dependent community-dwelling older persons) to assess the effects of Advance Care Planning interventions on patients’ medical treatment preferences.MethodsThe design of Treat-Me-ACP is based on the Emanuel Medical Directive and the Life Support Preferences Questionnaires. Using a multi-stage team approach a preliminary version of the Treat-Me-ACP was developed and pre-tested. The pre-tested instrument consists of one global medical care goal-item, five hypothetical scenarios with five hypothetical treatments, and one how would you feel-item within each scenario. A total of five scenario preference scores and five treatment preference scores can be formed. This version was subsequently applied to a subsample of the STADPLAN project (n = 80) to assess patient’s preferences at baseline (T0) and at 12-month follow-up (T2). The further validation steps were based on this subsample and included: (1) acceptance by using completion rate and frequencies of missing data, (2) internal consistency by using Cronbach’s α to test whether it was possible to create preference scores by scenario and treatment, (3) concurrent validation examining the association between the global medical care goal-item and the preference scores and the association between the how would you feel-items and the scenario preference scores, and (4) responsiveness of the instrument to changes in preferences for life-sustaining treatments by comparing preference scores from T0 to T2 between study groups.ResultsAcceptance of the instrument was high. Results of concurrent validation indicate that the five scenarios represent the global medical care goal well. The preference scores showed an average tendency for decreasing preferences for life-sustaining treatments across all scales for the intervention group during study follow-up.ConclusionsThe Treat-Me-ACP can be used to evaluate the dynamics of patients’ medical treatment preferences in Advance Care Planning. It has been validated for care-dependent community-dwelling older persons and can be used as an additional outcome measure in evaluating the effectiveness of ACP interventions.Trial registrationGerman Clinical Trials Register: DRKS00016886 on 04/06/2019.

Taiwanese Older Adults Prefer to Use Antibiotics and Intravenous Infusion at the End of Life based on a Cartoon Version of the Life Support Preferences Questionnaire.

Asians believe discussing death-related topics is inauspicious and may bring bad luck. It is critical to explore the end-of-life care preferences of the Asian elderly with less-threatening tools. The study examined older adults' preferences regarding end-of-life treatments by applying a cartoon version of the Life Support Preferences Questionnaire (LSPQ). A cross-sectional survey was conducted to understand older adults' preferences for end-of-life treatments. A total of 342 older adults participated in the study, comprising 268 elderly patients from a veterans hospital located in northern Taiwan and 74 elderly family members of the patients. Regardless of scenario, cardiopulmonary resuscitation (CPR) had the lowest score, indicating that older adults considered it a less desirable medical treatment. By contrast, antibiotics and intravenous infusions had the highest scores, indicating that older adults tended to prefer them. End-of-life care preferences were significantly different in genders. CPR and surgical preferences of older adults differed significantly with education level. Different demographic characteristics had different end-of-life treatment preferences, and future research may develop advance care planning programs for different attributes. This cartoon version of the LSPQ can help healthcare professionals to understand older adults' preferences for end-of-life care and warrants further empirical research.

The Differences and Perspectives Between Elderly Individuals and Their Surrogates Regarding End-of-Life Care: A Mixed Methods Study

Background: Family members often take the place of decision-making for elderly individuals. Previous studies showed that family members could not predict elderly individuals' thoughts about end-of-life care. Objectives: The aims are to understand the differences and perspectives between elderly individuals and surrogates regarding end-of-life care. Design: A mixed methods study comprising a cross-sectional survey and field notes analysis. Setting: Two geriatric wards in a veterans hospital located in northern Taiwan. Subjects: Fifty-five pairs of elderly individuals and their surrogates. Measurements: Life support preferences questionnaire and field notes. Results: The quantitative data showed that the elderly individuals and their surrogates had proper consistency in cardiopulmonary resuscitation and surgery. However, their consistency was poor in antibiotics and nasogastric tube feeding. Four themes were identified in qualitative data: recognizing old age, struggling with hope and peace, worries and concerns, and control of life. Recognizing old age for both elderly individuals and their surrogates was critical. Elderly individuals and their surrogates may seek a ray of hope among aggressive treatments and struggle with hope and peace. A lot of worries and concerns were mentioned, including contextual concerns. Elderly individuals need to depend on their ability to control their life. Conclusions: The study highlights elderly individuals' and their surrogates' considerations for antibiotics and nasogastric tube feeding. Furthermore, elderly individuals expressed that it is different for making decisions for themselves or others; thus, future studies can further explore whether elderly individuals allow their surrogates leeway from their wishes.

Life Support Preferences in the Context of COVID-19: Results from a National US Survey.

Life Support Preferences in the Context of COVID-19: Results from a National US Survey.

A quasi-experimental evaluation of advance care planning improves consistency between elderly individuals and their surrogates regarding end-of-life care preferences: Development and application of a decision aid with cartoon pictures

ObjectiveThis study sought to develop a decision aid with cartoon pictures and evaluate its effectiveness in increasing consistency between elderly individuals and their surrogates regarding end-of-life care. MethodsA pre-post quasi-experimental design was adopted using the Life Support Preferences Questionnaire. The intervention had two components: (1) increasing participants’ knowledge of medical treatments related to end-of-life care, and (2) sharing their end-of-life wishes. The experimental group received an intervention, whereas the control group received usual care. ResultsA total of 110 participants in 55 pairs of elderly individuals with average aged 86.4 and their surrogates (27 in the experimental group, 28 in the control group) were recruited from a veterans hospital in northern Taiwan. Nearly 90 % of elderly individuals were male. The multiple linear regression showed that the inconsistent gap between elderly individuals and their surrogates in the experimental group decreased 12 points than the control group after controlling the covariances (B = −12.116, p = 0.032). ConclusionThe intervention improved the consistency between elderly individuals and their surrogates regarding end-of-life care. Practice implicationsA decision aid with cartoon pictures may support the discussion of end-of-life care in older Asian populations.

Advance Care Planning to Improve End-of-Life Decision-Making Consistency between Older People and Their Surrogates in Taiwan.

Background: Surrogates often do not accurately predict older people's preferences about end-of-life (EOL) care. Few studies have examined the impact of advance care planning (ACP) on EOL decision-making consistency between older people and their surrogates, and these studies have yielded conflicting results. Objectives: To evaluate the effectiveness of ACP in improving EOL decision-making consistency between older people and their surrogates. Design: The intervention in this pre-post quasi-experimental design included an informative video, a brochure about ACP, and a guided discussion about EOL wishes. Setting: Two geriatric wards in a medical center in northern Taiwan. Subjects: One hundred eight participants, as 54 pairs of older people and their surrogates, were randomly assigned to either the experimental or control group. The experimental group received an intervention, while the control group received usual care. Measurements: Life-Support Preferences Questionnaire. Results: The intervention did not improve decision-making consistency between older people and their surrogates. This was the first time that most pairs discussed specific EOL decisions, so additional preparation may improve comfort with this topic. This study also found that some older people had difficulty concentrating on the educational brochure or understanding the related terms. Conclusions: Preparation for ACP discussion is needed for older people and their surrogates. Longer-term effects of ACP should be monitored because ACP interventions may have enhanced empathy between older people and their surrogates. Additionally, a culturally sensitive illustrated questionnaire that explains life-support preferences and ACP topics may improve communication between older people and their surrogates.

Memory of Medical Scenarios for End-of-Life Support Preferences.

We studied memory of health scenarios for end-of-life support decisions and stability of life support preferences. Psychology students (n = 36, age M = 27.25, SD = 6.21, 64% females) were administered the Life Support Preferences Questionnaire to assess their memory of six medical scenarios with different prognoses, care treatment, and end-of-life support choices. Recall, recognition, confidence and decision stability were assessed immediately and one month later. Correct recall decreased and incorrect recall increased from immediate to long-term recall, F(2, 68) = 74.38, p < .001, η2p = .69. In recall, participants spontaneously gave false information consistent with prior knowledge of illnesses and medical scenarios. Participants who had suffered a disease or serious accident did worse on correct recall, F(1, 34) = 6.59, p = .015, η2p = .16, and had more errors, F(1, 34) = 4.68, p = .038, η2p = .12, than participants who had not. In the recognition test there were no differences between hits and false alarms, showing the difficulty in discriminating between true and false contents. Confidence was greater for hits than for false alarms, F(1, 34) = 10.86, p = .002, η2p = .24, but this subjective measure did not seem to be a good predictor of accuracy because confidence was greater than the mean value for hits (p = .001, d = 1.74) and for false alarms (p = .001, d = 0.96). Long-term memory was quite poor and biased, but life support preferences did not change much.

Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia?

Background and AimsWhen a person with dementia (PWD) has lost the ability to make treatment decisions, clinicians often rely on family carers to know and articulate these preferences with assumed accuracy. This study used the Life Support Preferences Questionnaire (LSPQ) to explore whether family carers’ choices show agreement with the end of life care preferences of the person with dementia for whom they care and what factors influence this.MethodsA cross-sectional study interviewing 60 dyads (a person with early dementia and preserved capacity and their family carer) each completing a modified LSPQ. We assessed how closely carers’ choices resembled the PWD’s preferences for treatment in three proposed health states: the here and now; severe stroke with coma; terminal cancer. Agreement between the PWD and their family carer responses was assessed using Kappa and Prevalence-Adjusted Bias-Adjusted Kappa (PABAK) statistics. We examined whether carer burden and distress, and relationship quality, influenced agreement.ResultsIn interviews PWD were able to indicate their treatment preferences across all three scenarios. In the here-and-now most wanted antibiotics (98%), fewer cardio-pulmonary resuscitation (CPR) (50%) and tube feeding (47%). In severe stroke and coma antibiotics remained the more preferred treatment (88%), followed by CPR (57%) and tube feeding (30%). In advanced cancer PWD expressed lower preferences for all treatments (antibiotics 68%; CPR 50%; tube feeding 37%). Carers’ choices were similar to the PWDs’ preferences in the here-and-now (71% (k = 0.03; PABAK = 0.4) with less agreement for future hypothetical health states. In severe stroke and coma carers tended wrongly to suggest that the PWD preferred more intervention (antibiotic, 67%; k = -0.022; PABAK = -0.60; CPR, 73%; k = 0.20; PABAK = -0.20, tube feeding, 66%; k = 0.25; PABAK = -0.12). In advanced cancer the agreement between PWD and carers was low (antibiotics; k = -0.03; PABAK = -0.52; CPR, k = -0.07; PABAK = -0.45; tube feeding; k = 0.20; PABAK = -0.22). However, both PWD and carers showed marked uncertainty about their preferences for end of life treatment choices. Relationship quality, carer distress and burden had no influence on agreement.ConclusionsThis study is the first to have used the LSPQ with PWD in the UK to consider treatment options in hypothetical illness scenarios. Key finding are that family carers had a low to moderate agreement with PWD on preferences for end of life treatment. This underscores how planning for care at the end of life is beset with uncertainty, even when the carer and PWD perceive the care-giving/receiving relationship is good. Families affected by dementia may benefit from early and ongoing practical and emotional support to prepare for potential changes and aid decision making in the context of the realities of care towards the end of life.

Decisions in complex clinical situations: Prevalence and factors associated in general public

Many studies have focused on advanced directives. However, the type of treatment that citizens would choose in critical health situations and whether their decision varies with their sociodemographic characteristics and their experiences of life both within and outside the family context, are unknown. This study analyzes the factors associated with choosing or refusing life support treatment in hypothetical situations of differing clinical complexity. This transversal descriptive study was carried out by questionnaires given to 1051 participants from primary care centres. The Life Support Preferences Questionnaire (LSPQ) used to assess preferences of life-sustaining treatment, describes six scenarios with different prognoses. Analysis of the sociodemographic characteristics and life experiences of the subjects led to the following findings. In situations of very severe prognosis, treatment is mostly rejected. When there is chance of recovery, treatment is mostly accepted, especially in the least aggressive cases and when deciding for another person. A greater propensity to reject treatment was observed among subjects over 55 years, those in poor health and those who had observed a terminal illness in a family member. Practising Catholics are more likely to accept treatment in all medical situations described. Preferences for life support treatment are linked to sociodemographic characteristics and life experiences of patients. Physicians should bear in mind these characteristics when confronted with critical clinical situations, involving difficult decisions.

Life-Sustaining Treatment

Written advance directives are not common practice in Taiwan; thus, when older adults are critically ill, family members are usually the ones to make decisions regarding life-sustaining treatment. This study determined how well the preferences of the family members for the older adults match the preferences of the older adults themselves with regard to life-sustaining treatment. A cross-sectional comparative descriptive research design was used in this study. Ninety-five pairs of older adults and their families were included in the final analysis. The Life Support Preferences Questionnaire was used to measure life-sustaining preferences. Paired- sample t tests were performed to compare the mean differences between the older adults' preferences and the family members' preferences for these older adults. Family members scored higher on life-sustaining treatment preferences than the older adults for all 32 examined items, with 23 (72%) of these items showing statistical significance. Communication between older adults and their family members regarding life-sustaining treatment may help prevent older adults from receiving unwanted treatments.

Patients rate physician communication about lung cancer

High-quality lung cancer care includes physician-patient communication about the disease and treatment, patient needs/preferences, and care goals. In this study, the authors evaluated communication with patients at all stages across multiple topics. A standardized questionnaire asked patients with lung cancer to rate (on 5-point, verbal descriptor scale) the extent of communication with physicians on symptoms, spiritual concerns, practical needs, proxy appointment, living will preparation, prognosis, care goals, potential complications of therapy, life support preferences, and hospice. Communication was defined as inadequate if the patient reported discussing ≥5 of 11 questionnaire topics "not at all" or "a little bit." Multivariate logistic regression was used to evaluate the factors associated with inadequate communication. In total, 276 of 348 (79%) eligible patients were enrolled (mean age [±standard deviation], 65 ± 10 years; 55% white, 21% black, and 19% Hispanic; all disease stages). For most topics, the majority of respondents reported that physicians communicated "not at all" or "a little bit." Low ratings were frequent for discussion of emotional symptoms (56%; 95% confidence interval [CI], 49%-62%), practical needs (71%; 95% CI, 65%-76%), spiritual concerns (80%; 95% CI, 75%-85%), proxy appointment (63%; 95% CI, 57%-69%), living will preparation (90%; 95% CI, 85%-93%), life support preferences (80%; 95% CI, 75%-84%), and hospice (88%; 95% CI, 86%-94%). Communication was inadequate for patients of different ages, stages, and races, although Hispanics were less likely than non-Hispanic whites and blacks to report inadequate communication (odds ratio, 0.31; 95% CI, 0.15-0.65). Across all stages, patients with lung cancer reported low rates of physician-patient communication on key topics, which may increase patient distress, impair decision-making, and compromise clinical outcomes and use patterns.

Family factors in end-of-life decision-making: family conflict and proxy relationship.

Few studies have examined proxy decision-making regarding end-of-life treatment decisions. Proxy accuracy is defined as whether proxy treatment choices are consistent with the expressed wishes of their index elder. The purpose of this study was to examine proxy accuracy in relation to two family factors that may influence proxy accuracy: perceived family conflict and type of elder-proxy relationship. Telephone interviews with 202 community-dwelling elders and their proxy decision makers were conducted including the Life-Support Preferences Questionnaire (LSPQ), and a measure of family conflict, and sociodemographic characteristics, including type of relationship. Elder-proxy accuracy was associated with the type of elder-proxy relationship. Adult children demonstrated the lowest elder-proxy accuracy and spousal proxies the highest elder-proxy accuracy. Elder-proxy accuracy was associated with family conflict. Proxies reporting higher family conflict had lower elder-proxy accuracy. No interaction between family conflict and relationship type was revealed. Spousal proxies were more accurate in their substituted judgment than adult children, and proxies who perceive higher degree of family conflict tended to be less accurate than those with lower family conflict. Health care providers should be aware of these family factors when discussing advance care planning.

Preferencias de tratamiento de soporte vital en condiciones críticas de salud

ObjectiveTo explore citizens' treatment preferences in critical health situations. MethodWe performed a cross-sectional study through a questionnaire administered to 306 participants, randomly selected from nursing consultations, cultural centers, nursing homes and the university. Treatment preferences in critical health situations were measured through the Life Support Preferences Questionnaire (LSPQ). A descriptive bivariate and multivariate analysis was performed. ResultsThe mean age of participants was 39.28 years (SD: 24.52), 37% had primary school or no education, and 29.1% were male. Age was inversely correlated with accepting treatments; thus acceptance of life support measures was lower among participants older than 55 years than among the youngest participants and was also lower among those with a lower educational level than those with a higher educational level. No differences were found between men and women. In serious diseases with no possibility of recovery, all age groups rejected treatment. When there was the potential for recovery or for non-invasive treatments, participants aged 21 years old or older would prefer to be treated. ConclusionThere is wide variability among the population when accepting or rejecting life support treatment. The view that treatment should be accepted at all costs is inappropriate. Disseminating knowledge of advance directives and the use of these documents is recommended as the most effective way to respect patients' wishes when they are unable to express themselves.

Validación del Cuestionario de Preferencias de Soporte Vital (LSPQ) para su uso en la población española

To validate the Life-Support Preferences Questionnaire (LSPQ) for its use in Spain. Three-stage study: a) translation and linguistic adaptation; b) evaluation of its validity; and c) validation of its psychometric properties. Nine primary care nursing clinics and 2 university classes in Granada, Spain. Patients who were of age and were first- or second-year university students, without any cognitive deterioration. The equivalence of the translation and the original was checked by bilingual people; its linguistic and grammatical standard was appraised by experts in Spanish. The validity of the questionnaire was evaluated by 15 judges-experts and 20 patients; linguistic complexity (Szigriszt index); stability in time (McNemar test); internal consistency (Cronbach's alpha). a) 2 bilingual people did a translation that was reviewed by 6 experts in Spanish. After alterations suggested by the experts, the bilingual people ratified its equivalence with the original; b) 15 experts affirmed that each item was a good indicator of care preferences at the end of life; c) 20 users confirmed the acceptability and comprehensibility of the questionnaire; d) reliability: 299 participants out of the 369 initially selected filled in the questionnaire; and e) its stability was 0.92; and its internal consistency, 0.85. The LSPQ questionnaire in Spanish (LSPQ-e) is a reliable tool, designed to help patients to clarify their care and treatment preferences at the end of their lives.

Randomized study of stability and change in patients' advance directives

Little is known about ethnic differences in understanding or using advance directives (ADs). Although health practitioners may presume AD intentions are durable over time, there is no supporting evidence. This randomized study intended to (a) examine differences between hospitalized Hispanic and non-Hispanic patients' AD preferences, (b) assess AD stability, and (c) discover if the Life Support Preferences Questionnaire (LSPQ) influences AD preferences. Hispanics and non-Hispanics showed no difference in AD preferences. However, non-Hispanics were more likely to change AD preferences. The LSPQ itself prompted change in AD preferences, delivering an educational effect with no specific educational intent. Change seen in patients' ADs, even over a brief interval, suggests revisiting AD preferences with patients and their families after hospitalization.

Documenting life-support preferences in hospitalized patients

Purpose : The purpose of this article was to determine the extent to which patients at high risk of hospital death who undergo cardiopulmonary resuscitation (CPR) have previously had their life support preferences addressed and documented. Materials and Methods : We conducted a retrospective chart review of all patients older than 18 years of age hospitalized for more than 24 hours who sustained a cardiac arrest with attempted CPR at our tertiary care university teaching hospital during 1994 (n = 71). We searched all hospital charts specifying ICD-9 codes: Cardiac arrest, ventricular fibrillation, ventricular tachycardia, asystole, electromechanical dissociation, defibrillation, or CPR. Patients were selected if (1) they had a true cardiac arrest (abrupt cessation of spontaneous circulation) and (2) had attempted CPR or defibrillation. Patients were classified as “high risk” if they satisfied at least one of the following: modified prearrest morbidity index ≥7, moderate/severe dementia, day 1 APACHE II score >24 or ≥4 dysfunctional organ systems. Results : We searched 147 charts; of 71 patients meeting inclusion criteria, 53 were high risk. Of patients at high risk of sustaining a cardiopulmonary arrest during the index hospital admission, 3 (6%) had preferences addressed within the first 24 hours of hospitalization, 7 (13%) had delayed discussion of preferences before arrest, 23 (43%) had preferences addressed post arrest, and 20 (38%) had no documented discussions. Of the 23 high-risk patients initially surviving cardiac arrest, all were subsequently given “do not resuscitate” orders. Univariate analysis of factors associated with life-support discussion before cardiac arrest were previous cardiac arrest (OR, 5.9) and APACHE II score >24 (OR, 1.1), although neither reached statistical significance. None of the 32 patients with a modified PAM index ≥7 (32 of 71) survived hospitalization. Only 3 patients survived to hospital discharge. Conclusions : Early communication regarding life-support preferences is important in high-risk patients so that inappropriate or unwanted treatment is not implemented. Given that optimal care includes addressing and documenting life-support preferences in high-risk patients early in their hospitalization, this standard was infrequently met.

Preliminary validation of a measure of life support preferences.

A rapid, easy to use instrument that provides illustrations of life support choices can enhance discussion of life support measures with patients. The goal of this preliminary study was to develop and validate an instrument, the Life Support Preferences Questionnaire (LSPQ). In a convenience sample of 116 healthy adults, the LSPQ showed a sturdy degree of internal consistency for a short measure. The 2-week stability evidence was supportive of respondents' consistent attitudes over time at both the item and scale level. Principal factor analyses give evidence there is one dominant theme underlying the items. Use of the LSPQ with hospitalized patients is being explored as a response to policy changes resulting from the 1991 Patient Self-Determination Act.