Search

While the supporting role of families and friends has been widely recognized in cancer care, little data exist on how they influence patients' decisions regarding clinical trial participation, accounting for patients' decisional preferences. The goal of our study was to examine the process of clinical trial decision-making from the perspective of adults with cancer and their decision partners. Semi-structured interviews were conducted with 12 patients and 12 decision partners-family and friends engaged in the medical decision-making. Themes included: (1) having the ability and confidence to make decisions; (2) gaining insight about clinical trials; (3) trusting someone in the process; and (4) realizing readiness and context. Our findings will enhance understanding of how patients make clinical trial decisions based on decisional preferences from the perspectives of patients and decision partners. The findings may also help to increase clinician awareness and inclusion of decision partners in conversations regarding clinical trials.

Background: Religion and/or spirituality are important values for many parents of critically ill children; however, how religion and/or spirituality may influence which treatments parents accept or decline for their child, or how they respond to significant events during their child's illness treatment, remains unclear. Objective: To summarize the literature related to the influence of parents' religiosity or spirituality on decision making for their critically ill child. Design: Integrative review, using the Whittemore and Knafl approach. Setting/Subjects: Data were collected from studies identified through PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL plus), Embase, Scopus, and PsychInfo. Databases were searched to identify literature published between 1996 and 2016. Results: Twenty-four articles of variable methodological quality met inclusion criteria. Analysis generated three themes: parents' religiosity or spirituality as (1) guidance during decision making, (2) comfort and support during the decision-making process, and (3) a source of meaning, purpose, and connectedness in the experience of decision making. Conclusion: This review suggests that parents' religiosity and/or spirituality is an important and primarily positive influence on their decision making for a critically ill child.

Background: The decision partner concept emerged to describe someone who contributes to healthcare decision-making with a patient. There is a need for greater precision and consensus surrounding its conceptual definition and use in broader populations., Objective: To define and describe the decision partner concept within the context of healthcare decision-making., Design: A concept analysis., Data Sources: We searched the following databases for articles published between 1990-2017: PsychINFO, PubMed, Embase, and CINAHL. We included qualitative, quantitative, or mixed methods studies that used the term decision partner in the context of healthcare decision-making., Methods: We applied the Walker and Avant method to identify the antecedents, attributes, related concepts, consequences, and empirical referents of the concept, with major themes identified., Results: From the 112 articles included in this concept analysis, 6 defining attributes of decision partner were identified: (1) has a relationship with the patient, (2) demonstrates a willingness to participate in decision-making, (3) articulates a clear understanding of both the patient's health condition and the decisions that must be made, (4) demonstrates decision-making self-efficacy; (5) exemplifies an emotional capacity to participate in decision-making, and (6) willing to fulfill several supportive roles including patient advocate and the "hub of information"., Conclusions: A unifying definition and discussion of the decision partner concept has been developed. Our findings: (1) offer insights into refining the concept across various diseases and healthcare encounters, (2) contribute to developing theoretical models and empirical research to refine antecedents, attributes, consequences, (3) serve as a foundation to develop instruments to measure the concept and (4) highlight the need to design interventions that include and support decision partners in healthcare decision-making., (Copyright © 2019 Elsevier Ltd. All rights reserved.)

The aim of this meta-ethnography is to appraise the types and uses of theories relative to end-of-life decision making and to develop a conceptual framework to describe end-of-life decision making among patients with advanced cancers, heart failure, and amyotrophic lateral sclerosis (ALS) and their caregivers or providers. We used PubMed, Embase, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases to extract English-language articles published between January 2002 and April 2015. Forty-three articles were included. The most common theories included decision-making models ( n = 14) followed by family-centered ( n = 11) and behavioral change models ( n = 7). A conceptual framework was developed using themes including context of decision making, communication and negotiation of decision making, characteristics of decision makers, goals of decision making, options and alternatives, and outcomes. Future research should enhance and apply these theories to guide research to develop patient-centered decision-making programs that facilitate informed and shared decision making at the end of life among patients with advanced illness and their caregivers.

Background: Rehospitalization soon after discharge can be distressing for persons with heart failure (HF) and places a heavy burden on the healthcare system., Objective: We investigated and explored the association of self-care decision making variables with (1) rehospitalization within 30 days of discharge and (2) delay in seeking medical assistance (delayed decision making)., Methods: A cross-sectional, explanatory sequential mixed methods design (quan > qual) was used to survey 127 hospitalized HF patients and interview 15 of these participants to explain their survey responses. The survey assessed rehospitalization within 30 days of discharge, delayed decision making, HF self-care, and psychosocial factors influencing self-care., Results: The likelihood of delaying the decision to be hospitalized was more than 5 times higher among those with high depressive symptoms (odds ratio, 5.33; 95% confidence interval, 2.14-13.28). Those who delayed going to the hospital were uncertain about their prognosis and did not feel their symptoms were urgent. The likelihood of being rehospitalized within 30 days was more than doubled among those with high depressive symptoms (OR, 2.31; 95% confidence interval, 1.01-5.31). Those who were rehospitalized within 30 days were less likely to consult healthcare professionals in their decision making and wanted immediate relief from their symptoms., Conclusions: We recommend a patient-centered approach to help HF patients identify and adequately self-manage symptoms. The strong association between high depressive symptoms and rehospitalization within 30 days as well as delayed decision making highlights the critical need for clinicians to carefully assess and address depression among HF patients.

Context: Patients with terminal illnesses often require surrogate decision makers. Prior research has demonstrated high surrogate stress, and that despite standards promoting substituted judgment, most patients do not want their surrogates to make pure substituted judgments for them. It is not known how best to help loved ones fulfill the surrogate role., Objectives: To test the effectiveness of an intervention to help surrogate decision makers., Methods: One hundred sixty-six patients (41% with amyotrophic lateral sclerosis and 59% with gastrointestinal cancers) and their surrogates at two university medical centers were randomized to an intensive nurse-directed discussion of the end-of-life decision control preferences of the patient (TAILORED) or a discussion of nutrition (CONTROL); 163 completed baseline interviews and underwent the intervention., Results: Twelve patients died during follow-up and 137 dyads completed the study. Post-intervention, using all available data, TAILORED patients and surrogates became more likely to endorse mutual surrogate decision making, that is, a balance of their own wishes and what the surrogate thinks best (adjusted odds compared with baseline for patients = 1.78, P = 0.04; adjusted odds for surrogates = 2.05, P = 0.03). CONTROL patients became 40% less likely to endorse mutual surrogate decision making (P = 0.08), and CONTROL surrogates did not change significantly from baseline (adjusted odds = 1.44, P = 0.28). Stress levels decreased for TAILORED surrogates (impact of events scale = 23.1 ± 14.6 baseline, 20.8 ± 15.3 f/u, P = 0.046), but not for CONTROL (P = 0.85), and post-intervention stress was lower for TAILORED than CONTROL (P = 0.04). Surrogates' confidence was uniformly high at baseline and did not change. Caregiver burden (Zarit) increased from 12.5 ± 6.5 to 14.7 ± 8.1 for TAILORED (P < 0.01), while not changing for CONTROL, yet satisfaction with involvement in decision making was higher at follow-up for TAILORED than for CONTROL (71% vs. 52%, P = 0.03)., Conclusion: TAILORED patients and surrogates who completed the study adopted a more mutual decision-making style, balancing their own wishes with what the surrogate thinks would be best for them. Surrogates reported less stress and more satisfaction. Confidence was high at baseline and did not change. There was a modest increase in caregiver burden. These findings suggest that interventions like TAILORED might positively impact surrogate decision making., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Understanding how individuals make decisions about Pap tests concerning their personal values helps health-care providers offer tailored approaches to guide patients' decision making. Yet research has largely ignored decision making about Pap tests among immigrant women who experience increased risk of cervical cancer., Objective: To explore decision making about Pap tests among Korean immigrant women., Methods: We conducted a qualitative descriptive study using 32 semi-structured, in-depth interviews with Korean immigrant women residing in a north-eastern metropolitan area. Data were audio-recorded, transcribed verbatim and analysed using inductive coding., Results: Although most women with positive decisions made their own decisions, some women deferred to their providers, and others made decisions in collaboration with their providers and significant others. While women making positive decisions tended to consider both barriers to and facilitators of having Pap tests, women making negative decisions predominantly discussed the barriers to having Pap tests, such as modesty and differences between the South Korean and US health-care systems. The women's reflections on their decisions differed regarding their Pap test decisions., Conclusions: Women's desired roles in the decision-making process and reflection on their decision outcome appeared to vary, although most participants with positive decisions made their own decisions and were satisfied with their decisions. Future research should conduct longitudinal, quantitative studies to test our findings regarding decision-making processes and outcomes about Pap tests., Implications: The findings should be incorporated into cervical cancer screening practices to fulfil the unmet needs of immigrant women in patient-provider communication and to facilitate women's decision making about Pap tests., (© 2016 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Introduction: Many patients with advanced heart failure (HF) experience the life-extending benefits of implantable cardioverter-defibrillators (ICD), but at the end stage of HF, patients may experience shocks with increasing frequency and change the plan for end-of-life (EOL) care including the deactivation of the ICD. This report describes family members' experiences of patients with ICD making decisions at EOL. Understanding the decision-making of patients with ICD at EOL can promote informed decision-making and improve the quality of EOL care., Methods: This pilot study used a mixed methods approach to test the effects of a nurse-guided discussion in decision-making about ICD deactivation (turning off the defibrillation function) at the EOL. Interviews were conducted, audiotaped, and transcribed in 2012 to 2013 with 6 family members of patients with advanced HF and ICDs. Three researchers coded the data and identified themes in 2014., Results: Three main themes described family members' experiences related to patients having HF with ICDs making health-care decision at EOL: decision-making preferences, patients' perception on ICD deactivation, and communication methods., Discussion: Health-care providers need to have knowledge of patients' decision-making preferences. Preferences for decision-making include the allowing of appropriate people to involve and encourages direct conversation with family members even when advance directives is completed. Information of ICD function and the option of deactivation need to be clearly delivered to patients and family members. Education and guidelines will facilitate the communication of the preferences of EOL care.

Objective: To synthesize the existing qualitative literature about parent ethical decision making in the neonatal intensive care unit (NICU) and to investigate the potential impact of culture on parents' decision making experiences., Data Sources: PubMed, CINAHL plus, and PsychInfo using the search terms parental decision making, culture, race, decision making, and parental decisions., Study Selection: Qualitative research studies investigating decision making for infants in the NICU from the parents' perspective were included. Studies involving older pediatric populations were excluded., Data Extraction: Ten primary qualitative research articles were included. The primary author read all manuscripts and tabulated themes related to parents' ethical decision making., Data Synthesis: Study findings were synthesized using meta-ethnography involving translating concepts of separate studies into one another, exploring contradictions, and organizing these concepts into new theories. Key themes included parent involvement in decision making, parental role, necessity of good information, need for communication, desire for hope and compassion conveyed by providers, decision making satisfaction, and trust in caregiving team. A preliminary theoretical framework of ethical parent decision making was modeled based on the proposed relationships between the themes., Conclusions: Parent preferences for their involvement in decision making, their perceptions of communication with providers, and their relationships with providers are all important factors in the experience of making decisions for their infants. Needs of parents were the same regardless the ethnic or racial diversity of study participants., (© 2013 AWHONN, the Association of Women's Health, Obstetric and Neonatal Nurses.)

Parents of pediatric oncology patients are faced with difficult decisions when their child reaches the end of life. For health care providers to provide optimal care, they must understand parents' perspectives and preferences in end-of-life decision making. Therefore, this article provides a systematic review of the literature on the end-of-life decision making of parents of children with cancer as well as recommendations for practice and future research. Parents participated in surveys, focus groups, participant observation, and interviews to help researchers understand the expectations, hopes, fears, and values that guide their decision making. Common themes were patient-provider communication, extending time, and understanding prognosis.

Context: Research participants' informed consent is integral to the protection of human subjects; studies exploring the enhancement of standard informed consent processes have had mixed success in increasing patients' understanding of complex research protocols., Objective: To determine the effect of a "study map," a flow diagram of a research protocol, on research participants' understanding of research purpose and procedures., Design: This study was an experimental posttest-only design using 30 research participants enrolling in a study of decision making and recovery among living kidney donors. Participants were randomly assigned to the standard care group (verbal description with consent documents) or the experimental group (standard of care plus study map). An instrument measured perceived and objective understanding, and the differences between groups were determined by an independent t test., Discussion: The high level of comprehension in the control group made detecting improvements in understanding difficult. Objective knowledge and perceived understanding were positively related, suggesting the importance of periodically confirming comprehension with research participants during the informed consent process. Future research should examine the effect of study maps in patients with lower educational levels., Results: Knowledge levels were high in all participants (mean objective = 3.7 on a 5-point scale, SD = 1.02; mean subjective = 9.3 on a 10-point scale, SD = 1.29). There was a significant relationship between objective knowledge and perceived understanding (r = 0.56, P = .001); however, the study map itself had no significant effect on objective or perceived understanding.

Background: Surrogate 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., Objective: To evaluate the ability of family members to correctly identify the preferences of seriously-ill patients regarding family involvement in decision making., Design: Cross-sectional survey., Participants: Twenty-five pancreatic cancer and 27 amyotrophic lateral sclerosis (ALS) patients and their family members (52 dyads total)., Main Measures: Patients 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 Results: Patient 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)., Conclusion: Family 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.

Objective: Several studies have reported high levels of distress in family members who have made health care decisions for loved ones at the end of life. A method is needed to assess the readiness of family members to take on this important role. Therefore, the purpose of this study was to develop and validate a scale to measure family member confidence in making decisions with (conscious patient scenario) and for (unconscious patient scenario) a terminally ill loved one., Methods: On the basis of a survey of family members of patients with amyotrophic lateral sclerosis (ALS) enriched by in-depth interviews guided by Self-Efficacy Theory, we developed six themes within family decision making self-efficacy. We then created items reflecting these themes that were refined by a panel of end-of-life research experts. With 30 family members of patients in an outpatient ALS and a pancreatic cancer clinic, we tested the tool for internal consistency using Cronbach's alpha and for consistency from one administration to another using the test-retest reliability assessment in a subset of 10 family members. Items with item to total scale score correlations of less than .40 were eliminated., Results: A 26-item scale with two 13-item scenarios resulted, measuring family self-efficacy in decision making for a conscious or unconscious patient with a Cronbach's alphas of .91 and .95, respectively. Test-retest reliability was r = .96, p = .002 in the conscious senario and r = .92, p = .009 in the unconscious scenario., Significance of Results: The Family Decision-Making Self-Efficacy Scale is valid, reliable, and easily completed in the clinic setting. It may be used in research and clinical care to assess the confidence of family members in their ability to make decisions with or for a terminally ill loved one.

Objective: Persons with ALS differ from those with other terminal illnesses in that they commonly retain capacity for decision making close to death. The role patients would opt to have their families play in decision making at the end of life may therefore be unique. This study compared the preferences of patients with ALS for involving family in health care decisions at the end of life with the actual involvement reported by the family after death., Methods: A descriptive correlational design with 16 patient-family member dyads was used. Quantitative findings were enriched with in-depth interviews of a subset of five family members following the patient's death., Results: Eighty-seven percent of patients had issued an advance directive. Patients who would opt to make health care decisions independently (i.e., according to the patient's preferences alone) were most likely to have their families report that decisions were made in the style that the patient preferred. Those who preferred shared decision making with family or decision making that relied upon the family were more likely to have their families report that decisions were made in a style that was more independent than preferred. When interviewed in depth, some family members described shared decision making although they had reported on the survey that the patient made independent decisions., Significance of Results: The structure of advance directives may suggest to families that independent decision making is the ideal, causing them to avoid or underreport shared decision making. Fear of family recriminations may also cause family members to avoid or underreport shared decision making. Findings from this study might be used to guide clinicians in their discussions of treatments and health care decision making with persons with ALS and their families.

Objectives: To determine the role terminally ill patients would opt to have their loved ones and physicians play in healthcare decisions should they lose decision-making capacity and how this changes over time., Design: Serial interviews., Setting: The study institutions were The Johns Hopkins Medical Institutions in Baltimore, Maryland, and St. Vincent's Hospital, in New York., Participants: One hundred forty-seven patients with cancer, amyotrophic lateral sclerosis, or heart failure, at baseline and 3 and 6 months., Results: Patients' baseline decision control preferences varied widely, but most opted for shared decision-making, leaning slightly toward independence from their loved ones. This did not change significantly at 3 or 6 months. Fifty-seven percent opted for the same degree of decision control at 3 months as at baseline. In a generalized estimating equation model adjusted for time, more-independent decision-making was associated with college education (P=.046) and being female (P=.01), whereas more-reliant decision-making was associated with age (P<.001). Patients leaned toward more reliance upon physicians to make best-interest determinations at diagnosis but opted for physicians to decide based upon their own independent wishes (substituted judgment) over time, especially if college educated., Conclusion: Terminally ill patients vary in how much they wish their own preferences to control decisions made on their behalf, but most would opt for shared decision-making with loved ones and physicians. Control preferences are stable over time with respect to loved ones, but as they live longer with their illnesses, patients prefer somewhat less reliance upon physicians.

In its recent report on organ donation, the Institute of Medicine has recommended rigorous studies of how living organ donors make the decision to donate. In this pilot study, 65 donor applicants were interviewed while being evaluated in the outpatient donor clinic and 20 were surveyed again three months after donation. Fifteen and six of these subjects were surveyed again in six and 12 months respectively. Several strategies for retaining donors in a prospective longitudinal study are discussed. Half of the donors indicated that the decision to donate was a shared family decision. Married donors were slightly more likely than non-married donors to involve another family member in this decision. Several donors made practical recommendations for improved education of donors during what many perceived to be a very lengthy evaluation process. Some subjects recommended more discussion about post-operative pain and the expected pace of recovery after discharge. Others spoke of the challenge of completing basic homemaking tasks when the donor and recipient were in the same nuclear family. We are continuing to explore these and other aspects of donor decision-making and outcomes and have expanded our sample to include non-donors in the post-evaluation period.

In 2003, the first 3-way living kidney donor-swap was performed at Johns Hopkins Hospital in Baltimore, Md. Three new donor protocols includingpaired donation now allow unrelated individuals to serve as donors. Some ethicists have suggested that emotionally unrelated individuals not be permitted to donate because they will not experience the same satisfaction that a family member who is a donor experiences. Others who frame living donation as an autonomous choice do not see emotionally unrelated or even nondirected donation as ethically problematic. This article uses an ethical framework of principlism to examine living donation. Principles salient to living donation include autonomy, beneficence, and nonmaleficence. The following criteria are used to evaluate autonomous decision making by living donors, including choices made (1) with understanding, (2) without influence that controls and determines their action, and (3) with intentionality. Empirical work in these areas is encouraged to inform the ethical analysis of the new living donor protocols.

Background: The Federal government and transplantation organizations have called for further study of living donation at a time when 3 new living donor protocols are being introduced throughout the United States that promise to significantly increase the donor pool and change the face of living donation. Donation to a once incompatible and sometimes unknown recipient may now occur through the use of plasmapheresis therapy or paired and nondirected living donor protocols., Objective: To describe the state of the science on living kidney donor decision making, and to provide recommendations for future research to guide donor education and care., Data Sources: Automated literature search using PubMed and CINAHL scientific literature databases. STUDY DATA EXTRACTION: Research papers on living donor decision making from 1997 to 2003. Studies available only as abstracts were excluded., Data Synthesis: Studies of living kidney donor decision making and outcomes have been limited in scope, with small sample sizes and inconsistent reports of racial and ethnic characteristics of the sample. The retrospective nature of the majority of living donor studies is a significant limitation., Conclusions: Future prospective studies that are diverse by sex, race, and ethnicity will contribute to our knowledge of factors that influence the decision to be a living kidney donor.

Background: In the United States, up to one-third of infants with a congenital anomaly require neonatal intensive care unit (NICU) hospitalization. Parents of these infants may have different decision-making priorities, which may be influenced by the timing of the infant's diagnosis. Purpose: (1) To compare the ranked importance of decision-making beliefs for parents of infants who received a prenatal versus postnatal congenital diagnosis and (2) explore how parents describe their decision-making beliefs. Methods: A cross-sectional, sequential mixed-methods pilot design was applied to collect quantitative data using the Good Parent Ranking Exercise and further explore parents' decision-making beliefs through qualitative interviews. Maximum difference scaling/hierarchical Bayes estimation and content analysis were used to analyze the quantitative and qualitative data, respectively. Results: Forty mothers completed the Good Parent Ranking Exercise and 20 mothers completed qualitative interviews. Four of the top 5 ranked parenting beliefs were shared by mothers in the prenatal and postnatal groups. Mothers in the postnatal group ranked "focusing on my child's quality of life" higher. Qualitative interviews revealed that previously identified decision-making beliefs were consistent in this NICU parent population, with 1 additional belief identified. Mixed-methods analysis revealed high concordance between the prenatal and postnatal groups. Implications for Practice: NICU nurses need to know that decision-making beliefs for parents who receive a prenatal versus postnatal congenital diagnosis, while largely similar, may have differences. Implications for Research: Future research should explore decision-making beliefs in demographically diverse parent groups (ie, fathers, partnered vs nonpartnered couples) and effective strategies for promoting NICU parents' decisionmaking beliefs. [ABSTRACT FROM AUTHOR]

Surrogate decision-makers make critical decisions for loved ones at the end of life, and some experience lasting negative psychological outcomes. Understanding whom they rely on for support and the types of support they value may inform nursing care and that of other health team members who work with surrogates. The purpose of the study was to explore decision support and other types of support provided to surrogate decision-makers at the end of life of their loved one and perceived usefulness of the support. This secondary analysis of data from a mixed-methods study involved the examination of the transcripts of qualitative interviews with 13 surrogate decision-makers in the United States, conducted between 2010 and 2014. A constant comparative method was used to identify common themes surrounding surrogate decision support at the end of life. Surrogates valued advance directives and conversations with their loved one about treatment preferences. Surrogates described involving many different types of people in decision-making and other types of support. Finally, surrogates appreciated being reassured that they were doing a good job in making decisions and seemed to seek out this type of affirmation from various sources including the health care team, family, and friends. Nurses are well-positioned to provide this affirmation because of the time that they spend caring for the patient and family. Future research should further explore the concept of affirmation of surrogates in their role as a means of support as they make decisions for a loved one. [ABSTRACT FROM AUTHOR]

Background: Surrogate 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.Objective: To evaluate the ability of family members to correctly identify the preferences of seriously-ill patients regarding family involvement in decision making.Design: Cross-sectional survey.Participants: Twenty-five pancreatic cancer and 27 amyotrophic lateral sclerosis (ALS) patients and their family members (52 dyads total).Main Measures: Patients 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 Results: Patient 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).Conclusion: Family 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. [ABSTRACT FROM AUTHOR]

Studies of persons with chronic and life-threatening illness have revealed a fear of being a burden on family. The purpose of this case study was to explore that concern in-depth in three persons with different terminal illnesses. Participants were part of a larger study of end-of-life decision making and were selected for this study because their illnesses are characterized by a steady decline in health (amyotrophic lateral sclerosis), a rapid decline (stage IV lung cancer), or an uncertain trajectory of decline (advanced heart failure). Content analysis of their interviews resulted in four themes: managing the burden, spirituality, supportive relationships, and planning for the future. Themes contained specific categories of thoughts, feelings, and actions related to fear of being a burden. These themes should be explored in greater depth in future larger studies of persons with terminal illness. [ABSTRACT FROM AUTHOR]

Abstract: Current approaches to end-of-life decision making are widely considered inadequate. We explored these complexities by examining how patients with terminal diagnoses would choose to involve their physicians and loved ones in making medical decisions, assuming they were able and unable to participate. Cross-sectional interviews of 130 patients recently diagnosed with fatal conditions were conducted. Patients were recruited from two academic medical centers using a modification of the Decision Control Preferences Scale, ranging from independent decision making to decision making that relies upon others. Patients were asked how they would balance their own wishes relative to the input of physician and loved ones in making medical decisions, and to weigh the input of loved ones relative to physician. Most patients (52%), assuming they had the capacity, would opt to share decision making with their physicians, but 15% would defer to their physicians and 34% would make decisions independently. Similarly, 44% would share decision making with their loved ones, but fewer (6%) would defer to their loved ones. Thirty-nine percent would rely upon their physicians'' judgments about what would be best for them rather than their own wishes if they became unconscious, compared with 15% who would do so if they were conscious (P < 0.001). Nonetheless, patients were more likely to weigh their loved ones'' input more heavily than their physicians'' input if they were unconscious (33%) than if they were conscious (7%, P = 0.05). Race, religion, gender, diagnosis, and health status were largely unassociated with patients'' decision control preferences. Patients with terminal diagnoses report a wide diversity of decision control preferences, but most would opt to share decision making with their physicians and loved ones. If unable to decide for themselves, they shift toward greater reliance on physician input relative to their own wishes but would weigh loved ones'' input more heavily than physician input. Deciding for patients who cannot speak for themselves may be more complex than has previously been reflected in law, policy, or clinical ethics. [Copyright &y& Elsevier]