Advance directives: cancer patients' preferences and family-based decision making.
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ABSTRACT:
SUBMITTER: Xing YF
PROVIDER: S-EPMC5542195 | biostudies-other | 2017 Jul
REPOSITORIES: biostudies-other
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Project description:BackgroundRecent discussions about health care reform have raised questions regarding the value of advance directives.MethodsWe used data from survey proxies in the Health and Retirement Study involving adults 60 years of age or older who had died between 2000 and 2006 to determine the prevalence of the need for decision making and lost decision-making capacity and to test the association between preferences documented in advance directives and outcomes of surrogate decision making.ResultsOf 3746 subjects, 42.5% required decision making, of whom 70.3% lacked decision-making capacity and 67.6% of those subjects, in turn, had advance directives. Subjects who had living wills were more likely to want limited care (92.7%) or comfort care (96.2%) than all care possible (1.9%); 83.2% of subjects who requested limited care and 97.1% of subjects who requested comfort care received care consistent with their preferences. Among the 10 subjects who requested all care possible, only 5 received it; however, subjects who requested all care possible were far more likely to receive aggressive care as compared with those who did not request it (adjusted odds ratio, 22.62; 95% confidence interval [CI], 4.45 to 115.00). Subjects with living wills were less likely to receive all care possible (adjusted odds ratio, 0.33; 95% CI, 0.19 to 0.56) than were subjects without living wills. Subjects who had assigned a durable power of attorney for health care were less likely to die in a hospital (adjusted odds ratio, 0.72; 95% CI, 0.55 to 0.93) or receive all care possible (adjusted odds ratio, 0.54; 95% CI, 0.34 to 0.86) than were subjects who had not assigned a durable power of attorney for health care.ConclusionsBetween 2000 and 2006, many elderly Americans needed decision making near the end of life at a time when most lacked the capacity to make decisions. Patients who had prepared advance directives received care that was strongly associated with their preferences. These findings support the continued use of advance directives.
| S-EPMC2880881 | biostudies-literature
Project description:To identify the relationships between advance directive status, demographic characteristics and decisional burden (role stress and depressive symptoms) of surrogate decision-makers (SDMs) of patients with chronic critical illness.Although the prevalence of advance directives among Americans has increased, SDMs are ultimately responsible for complex medical decisions of the chronically critically ill patient. Decisional burden has lasting psychological effects on SDMs. There is insufficient evidence on the influence of advance directives on the decisional burden of surrogate decision-makers of patients with chronic critical illness.The study was a secondary data analysis of cross-sectional data. Data were obtained from 489 surrogate decision-makers of chronically critically ill patients at two academic medical centres in Northeast Ohio, United States, between September 2005-May 2008.Data were collected using demographic forms and questionnaires. A single-item measure of role stress and the Center for Epidemiological Studies Depression (CESD) scale were used to capture the SDM's decisional burden. Descriptive statistics, t-tests, chi-square and path analyses were performed.Surrogate decision-makers who were nonwhite, with low socioeconomic status and low education level were less likely to have advance directive documentation for their chronically critically ill patient. The presence of an advance directive mitigates the decisional burden by directly reducing the SDM's role stress and indirectly lessening the severity of depressive symptoms.Most SDMs of chronically critically ill patients will not have the benefit of knowing the patient's preferences for life-sustaining therapies and consequently be at risk of increased decisional burden.Study results are clinically useful for patient education on the influence of advance directives. Patients may be informed that SDMs without advance directives are at risk of increased decisional burden and will require decisional support to facilitate patient-centred decision-making.
| S-EPMC5573593 | biostudies-other
Project description:PurposeThis study investigated awareness of dying well, as well as attitudes and preferences toward advance directives (ADs), among elderly individuals who lived alone.MethodsThe participants were 173 elderly people living alone. Data were collected from July 2019 to September 2019 using questionnaires on perceptions of dying well, awareness of advance directives, and general characteristics.ResultsThe majority of participants (68.2%) stated that they had never heard of advance directives. The information they requested to include in their advance directives mostly involved decisions on pain treatment, such as the use of analgesic drugs in the final stages of a terminal disease. Perceptions of dying well were statistically significantly different according to age and education.ConclusionThis study discussed the attitudes and preferences of elderly living alone regarding advance directives to provide basic resources for the systematic and active use of advance directives.
| S-EPMC10332727 | biostudies-literature
Project description:BackgroundFollowing passage of the Patient Self Determination Act in 1990, health care institutions that receive Medicare and Medicaid funding are required to inform patients of their right to make their health care preferences known through execution of a living will and/or to appoint a surrogate-decision maker. We evaluated the impact of external factors and perceived patient preferences on physicians' decisions to honor or forgo previously established advance directives (ADs). In addition, physician views regarding legal risk, patients' ability to comprehend complexities involved with their care, and impact of medical costs related to end-of-life care decisions were explored.MethodsAttendees of two Mayo Clinic continuing medical education courses were surveyed. Three scenarios based in part on previously court-litigated matters assessed impact of external factors and perceived patient preferences on physician compliance with patient-articulated wishes regarding resuscitation. General questions measured respondents' perception of legal risk, concerns over patient knowledge of idiosyncrasies involved with their care, and impact medical costs may have on compliance with patient preferences. Responses indicating strength of agreement or disagreement with statements were treated as ordinal data and analyzed using the Cochran Armitage trend test.ResultsThree hundred eighty-eight of 951 surveys were completed (41% response rate). Eighty percent reported they were likely to honor a patient's AD despite its 5 year age. Fewer than half (41%) would honor the AD of a patient in ventricular fibrillation who had expressed a desire to "pass away in peace." Few (17%) would forgo an AD following a family's request for continued resuscitative treatment. A majority (52%) considered risk of liability to be lower when maintaining someone alive against their wishes than mistakenly failing to provide resuscitative efforts. A large percentage (74%) disagreed that patients could not appreciate complexities surrounding their care while 69% agreed that costs should never impact a physician's decision as to whether to comply with a patient's AD.ConclusionsOur findings highlight the impact, albeit small, external factors have on physician AD compliance. Most respondents based their decision on the clinical situation at hand and interpretation of the patient's initial wishes and preferences expressed by the AD.
| S-EPMC3528447 | biostudies-literature
Project description:PurposeThis study aimed to identify attitudes toward advance directives (ADs) among female cancer patients and factors related to ADs.MethodsThe study was conducted at a university hospital in Seoul from September 19, 2020, to January 20, 2021. The participants were 153 patients diagnosed with gynecological cancer or breast cancer. Data were collected using questionnaires and included general characteristics, disease- and AD-related characteristics, knowledge and attitudes about ADs, and attitudes about dignified death. Data were analyzed using the t-test, analysis of variance, and multiple regression analysis.ResultsOnly 2% of the participants completed ADs. The mean score for attitudes toward ADs was 3.30, indicating a positive knowledge and attitude toward dignified death. The factors related to attitudes toward ADs were attitudes toward dignified death (β=0.25, P=0.001), experience discussing life-sustaining treatment (β=0.17, P=0.037), preferred time to have a consultation about ADs (β=0.19, P=0.046), intention to write ADs (β= 0.15, P=0.038), and Eastern Cooperative Oncology Group Performance Status (β=-0.37, P<0.001). The explanatory power of these variables for attitudes toward ADs was 38.5%.ConclusionOverall, patients preferred to have a consultation about ADs when they were still active, mentally healthy, and able to make decisions. Education about ADs should be provided to patients on the first day of hospitalization for chemotherapy or while awaiting treatment in an outpatient setting so patients can write ADs and discuss them with family and friends.
| S-EPMC10519724 | biostudies-literature
Project description:BackgroundSurrogate accuracy in predicting patient treatment preferences (i.e., what patients want) has been studied extensively, but it is not known whether surrogates can predict how patients want loved ones to make end-of-life decisions on their behalf.ObjectiveTo evaluate the ability of family members to correctly identify the preferences of seriously-ill patients regarding family involvement in decision making.DesignCross-sectional survey.ParticipantsTwenty-five pancreatic cancer and 27 amyotrophic lateral sclerosis (ALS) patients and their family members (52 dyads total).Main measuresPatients and family members completed the Decision Control Preferences (DCP) scale regarding patient preferences for family involvement in health care decisions using conscious and unconscious scenarios.Key resultsPatient and family member agreement was 56% (29/52 dyads) for the conscious scenario (kappa 0.29) and 46% (24/52 dyads) for the unconscious scenario (kappa 0.15). Twenty-four family members identified the patient's preference as independent in the unconscious scenario, but six of these patients actually preferred shared decision making and six preferred reliant decision making. In the conscious scenario, preference for independent decision making was associated with higher odds of patient-family agreement (AOR 5.28, 1.07-26.06). In the unconscious scenario, cancer patients had a higher odds of agreement than ALS patients (AOR 3.86; 95% CI 1.02-14.54).ConclusionFamily members were often unable to correctly identify patient preferences for family involvement in end-of-life decision making, especially when patients desired that decisions be made using the best-interest standard. Clinicians and family members should consider explicitly eliciting patient preferences for family involvement in decision making. Additional research is still needed to identify interventions to improve family member understanding of patient preferences regarding the decision-making process itself.
| S-EPMC3138973 | biostudies-literature
Project description:BackgroundIn Mainland China, advance directives (ADs) and end-of-life care for patients with tumours, especially patients with brain tumours who may have lost consciousness or the ability to speak at the early stage of their illness, have been poorly acknowledged. Thus, this study aimed to clarify the knowledge and preferences of ADs and end-of-life care in patients with brain tumours and to investigate predictors of patient preferences.MethodsThis was a population-based cross-sectional survey that was conducted via face-to-face interviews. Information on sociodemographic factors, brain tumour illness, knowledge and preferences of the advanced decisions and end-of-life care of the patients was collected.ResultsA total of 88.61% of participants had never heard of ADs, but 65.18% reported that they would like to make ADs. Knowledge of ADs, receiving surgical treatment or radiotherapy, being younger than 70?years old, being male, having educational qualifications of college or beyond, being childless, having medical insurance for nonworking or working urban residents and self-paying medical expenses were predictors of preference for making ADs. A total of 79.43% of participants wanted to discuss end-of-life arrangements with medical staff, and 63.29% of participants were willing to receive end-of-life care, even though it would not delay death. A total of 65.82% of patients with brain tumours wanted resuscitation, and as many as 45.45% of the patients thought that they did not need life support if they were in a persistent vegetative state. Brain primary tumours, being younger than 70?years old, male sex, educational qualification of junior middle school or below, having children, having new rural cooperative medical insurance and having medical expenses paid by children or spouses were predictors of choosing appropriate palliative care.ConclusionsADs and end-of-life care have been poorly acknowledged among patients with brain tumours in mainland China. Additional efforts should be encouraged amongst patients with primary brain tumours, those who are undergoing surgery and radiotherapy and those who have low socioeconomic status. A longitudinal and comprehensive study is encouraged to promote disease-specific ADs among Chinese patients with brain tumours.
| S-EPMC7786498 | biostudies-literature
Project description:ObjectiveAdvance care planning (ACP) assists people to identify their goals, values and treatment preferences for future care. Ideally, preferences are documented in an advance care directive (ACD) and used by doctors to guide medical decision-making should the patient subsequently lose their decision-making capacity. However, studies demonstrate that ACDs are not always adhered to by doctors in clinical practice. We aim to describe the attitudes and perspectives of doctors regarding ACD adherence and the utility of ACDs in clinical practice.DesignFace-to-face semistructured interviews were conducted using three case-based vignettes to explore doctors' decision-making and attitudes towards ACDs. Transcripts were analysed using a thematic analysis.SettingDoctors from a variety of medical specialties and with varying experience levels were recruited from a large tertiary hospital in Melbourne, Australia.ParticipantsA total of 21 doctors were interviewed, 48% female (10/21). Most (19/21) reported having experience using ACDs.ResultsFour themes were identified: aligning with patient preferences (avoiding unwanted care, prioritising autonomy and anticipating family opposition), advocating best interests (defining futile care, relying on clinical judgement, rejecting unreasonable decisions and disregarding legal consequences), establishing validity (doubting rigour of the decision-making process, questioning patients' ability to understand treatment decisions, distrusting outdated preferences and seeking confirmation) and translating written preferences into practice (contextualising patient preferences, applying subjective terminology and prioritising emergency medical treatment).ConclusionsACDs provide doctors with opportunities to align patient preferences with treatment and uphold patient autonomy. However, doctors experience decisional conflict when attempting to adhere to ACDs in practice, especially when they believe that adhering to the ACD is not in the patients' best interests, or if they doubt the validity of the ACD. Future ACP programmes should consider approaches to improve the validity and applicability of ACDs. In addition, there is a need for ethical and legal education to support doctors' knowledge and confidence in ACP and enacting ACDs.
| S-EPMC6830700 | biostudies-literature
Project description:Shared decision-making (SDM) is increasingly promoted in the primary care setting, but depressive symptoms, which are associated with cognitive changes, may influence decision-making preferences. We sought to assess whether elevated depressive symptoms are associated with decision-making preference in patients with comorbid chronic illness.We enrolled 195 patients ?18years old with uncontrolled hypertension from two urban, academic primary care clinics. Depressive symptoms were assessed using the 8-item Patient Health Questionnaire. Clinician-directed decision-making preference was assessed according to the Control Preference Scale. The impact of depressive symptoms on decision-making preference was assessed using generalized linear mixed models adjusted for age, gender, race, ethnicity, education, Medicaid status, Charlson Comorbidity Index, partner status, and clustering within clinicians.The mean age was 64.2years; 72% were women, 77% Hispanic, 38% Black, and 33% had elevated depressive symptoms. Overall, 35% of patients preferred clinician-directed decision-making, 19% mostly clinician-directed, 39% shared, and 7% some or little clinician-input. Patients with (vs. without) elevated depressive symptoms were more likely to prefer clinician-directed decision-making (46% versus 29%; p=0.02; AOR 2.51, 95% CI 1.30-4.85, p=0.005). Remitted depressive symptoms (vs. never depressed) were not associated with preference.Elevated depressive symptoms are associated with preference for clinician-directed decision-making. We suggest that clinicians should be aware of this effect when incorporating preference into their communication styles and take an active role in eliciting patient values and exchanging information about treatment choice, all important components of shared decision-making, particularly when patients are depressed.
| S-EPMC4889561 | biostudies-other
Project description:BackgroundA number of previous studies have suggested that the Japanese have few opportunities to participate in medical decision-making, as a result both of entrenched physician paternalism and national characteristics of dependency and passivity. The hypothesis that Japanese patients would wish to participate in treatment decision-making if adequate information were provided, and the decision to be made was clearly identified, was tested by interview survey.MethodsThe subjects were diabetic patients at a single outpatient clinic in Kyoto. One of three case study vignettes (pneumonia, gangrene or cancer) was randomly assigned to each subject and, employing face-to-face interviews, the subjects were asked what their wishes would be as patients, for treatment information, participation in decision-making and family involvement.Results134 patients participated in the study, representing a response rate of 90%. The overall proportions of respondents who preferred active, collaborative, and passive roles were 12%, 71%, and 17%, respectively. Respondents to the cancer vignette were less likely to prefer an active role and were more likely to prefer family involvement in decision-making compared to non-cancer vignette respondents. If a physician's recommendation conflicted with their own wishes, 60% of the respondents for each vignette answered that they would choose to respect the physician's opinion, while few respondents would give the family's preference primary importance.ConclusionsOur study suggested that a majority of Japanese patients have positive attitudes towards participation in medical decision making if they are fully informed. Physicians will give greater patient satisfaction if they respond to the desire of patients for participation in decision-making.
| S-EPMC375530 | biostudies-literature