Family refusals of registered consents: the disruption of organ donation by double‐standard surrogate decision‐making

Some countries such as Australia, Spain, Norway, Italy and Canada allow next of kin to override the consent of registered organ donor candidates if they personally do not concur with the donation desire of their relative. This form of surrogate decision‐making represents a double standard in terms of the principle of substituted judgment (the surrogate's duty). Further, double‐standard surrogate decision‐making in the setting of organ donation is a slippery slope to unethical surrogate decision‐making while patients are alive. Concerns about family distress and donor candidate revocation of consent can still be managed without permitting double‐standard surrogate decision‐making.     

Timing of do-not-resuscitate orders for hospitalized older adults who require a surrogate decision-maker

OBJECTIVES: To examine the frequency of surrogate decisions for in‐hospital do‐not‐resuscitate (DNR) orders and the timing of DNR order entry for surrogate decisions. DESIGN: Retrospective cohort study. SETTING: Large, urban, public hospital. PARTICIPANTS: Hospitalized adults aged 65 and older over a 3‐year period (1/1/2004–12/31/2006) with a DNR order during their hospital stay. MEASUREMENTS: Electronic chart review provided data on frequency of surrogate decisions, patient demographic and clinical characteristics, and timing of DNR orders. RESULTS: Of 668 patients, the ordering physician indicated that the DNR decision was made with the patient in 191 cases (28.9%), the surrogate in 389 (58.2%), and both in 88 (13.2%). Patients who required a surrogate were more likely to be in the intensive care unit (62.2% vs 39.8%, P<.001) but did not differ according to demographic characteristics. By hospital Day 3, 77.6% of patient decisions, 61.9% of surrogate decisions, and 58.0% of shared decisions had been made. In multivariable models, the number of days from admission to DNR order was higher for surrogate (odds ratio (OR)=1.97, P<.001) and shared decisions (OR=1.48, P=.009) than for patient decisions. The adjusted hazard ratio for hospital death was higher for patients with surrogate than patient decisions (2.61, 95% confidence interval (CI)=1.56–4.36). Patients whose DNR orders were written on Day 6 or later were twice as likely to die in the hospital (OR=2.20, 95% CI=1.45–3.36) than patients with earlier DNR orders. CONCLUSION: For patients who have a DNR order entered during their hospital stay, order entry occurs later when a surrogate is involved. Surrogate decision‐making may take longer because of the greater ethical, emotional, or communication complexity of making decisions with surrogates than with patients.     

Physicians' Views on the Importance of Patient Preferences in Surrogate Decision‐Making

OBJECTIVES: To explore the degree to which physicians report reliance on patient preferences when making medical decisions for hospitalized patients lacking decisional capacity. DESIGN: Cross‐sectional survey. SETTING: One academic and two community hospitals in a single metropolitan area. PARTICIPANTS: Two hundred eighty‐one physicians who recently cared for hospitalized adults. MEASUREMENTS: A self‐administered survey addressing physicians' beliefs about ethical principles guiding surrogate decision‐making and physicians' recent decision‐making experiences. RESULTS: Overall, 72.6% of physicians identified a standard related to patient preferences as the most important ethical standard for surrogate decision‐making (61.2% identified advanced directives and 11.4% substituted judgment). Of the 73.3% of physicians who reported recently making a surrogate decision, 81.8% reported that patient preferences were highly important in decision‐making, although only 29.4% reported that patient preference was the most important factor in the decision. Physicians were significantly more likely to base decisions on patient preferences when the patient was in the intensive care unit (odds ratio (OR)=2.92, 95% confidence interval (CI)=1.15–7.45) and less likely when the patient was older (OR=0.76 for each decade of age, 95% CI=0.58–0.99). The presence of a living will, prior discussions with the patient, and the physicians' beliefs about ethical guidelines did not significantly predict the physicians' reliance on patient preferences. CONCLUSION: Although a majority of physicians identified patient preferences as the most important general ethical guideline for surrogate decision‐making, they relied on a variety of factors when making treatment decisions for a patient lacking decisional capacity.     

POLST recall,concordance, and decision quality outcomes among nursing home residents and surrogate decision-makers

Background

POLST orders are actionable in an emergency, so it is important that the decisions be of high quality and concordant with current preferences. The goal of this study is to determine the relationship between concordance and decision quality outcomes, including decision satisfaction and decisional conflict, among nursing facility residents and surrogates who recall POLST.

Methods

We completed structured interviews in 29 nursing facilities with 275 participants who had previously signed a POLST form. This included residents who were still making their own medical decisions (n = 123) and surrogate decision-makers for residents without decisional capacity (n = 152). POLST recall was defined as remembering talking about and/or completing the POLST form previously signed by the participant. Concordance was determined by comparing preferences elicited during a standardized interview with the POLST form on file. Decisional conflict, decision satisfaction, and conversation quality were assessed with standardized tools.

Results

Half of participants (50%) remembered talking about or completing the POLST form, but recall was not associated with the length of time since POLST completion or concordance with existing preferences. In multivariable analyses, there was no association between POLST recall, concordance, and decision quality outcomes, though satisfaction was associated with conversation quality.

Conclusions

Half of the residents and surrogates in this study recalled the POLST they previously signed. Neither the age of the form nor the ability to recall the POLST conversation should be considered indicators of whether existing POLST orders match current preferences. Findings confirm a relationship between POLST conversation quality and satisfaction, underscoring the importance of POLST completion as a communication process.     

The decision‐making threshold and the factors that affect it: A qualitative study of patients' decision‐making in knee replacement surgery

Background

Osteoarthritis is a significant cause of burden to the ageing population and knee replacement is a common operation for treatment of end‐stage disease. We aimed to explore these factors to help understand patients' decision‐making, which is critical in informing patient‐centred care. These can be used to enhance decision‐making and dialogue between clinicians and patients, allowing a more informed choice.

Methods

The study consisted of two focus groups, in a patient cohort after total knee replacement followed by more in‐depth interviews to further test and explore themes from the focus groups, in patients in either the deliberation stage or the decision‐making stage.

Results

Using qualitative research methods (iterative thematic analysis) reviewing decision‐making and deliberation phases of making informed choices we found nine key themes that emerged from the study groups.

Conclusions

An awareness of the deliberation phase, the factors that influence it, the stress associated with it, preferred models of care, and the influence of the decision‐making threshold will aid useful communication between doctors and patients.     

Family member satisfaction with end-of-life decision making in the ICU

RATIONALE: Families of ICU patients may be at risk for increased psychological morbidity due to end-of-life decision making. The identification of chart-based quality indicators of palliative care that predict family satisfaction with decision making may help to guide interventions to improve decision making and family outcomes. OBJECTIVE: To determine patient and family characteristics and chart the documentation of processes of care that are associated with increased family satisfaction with end-of-life decision making for ICU patients. METHODS: We conducted a cohort study of ICU patients dying in 10 medical centers in the Seattle-Tacoma area. Measurement: Outcomes from family surveys included summary scores for family satisfaction with decision making and a single-item score that indicated feeling supported during decision making. Predictor variables were obtained from surveys and chart abstraction. Main results: The survey response rate was 41% (442 of 1,074 families responded). Analyses were conducted of 356 families with questionnaire and chart abstraction data. Family satisfaction with decision making was associated with the withdrawal of life support, and chart documentation of physician recommendations to withdraw life support, discussions of patients' wishes, and discussions of families' spiritual needs. Feeling supported during decision making was associated with the withdrawal of life support, spiritual care involvement, and chart documentation of physician recommendations to withdraw life support, expressions of families' wishes to withdraw life support, and discussions of families' spiritual needs. CONCLUSIONS: Increased family satisfaction with decision making is associated with withdrawing life support and the documentation of palliative care indicators including the following: physician recommendations to withdraw life support; expressions of patients' wishes; and discussions of families' spiritual needs. These findings provide direction for future studies to investigate approaches to improving family satisfaction in end-of-life decision making. In addition, because there were few nonwhites in this study, these results may not be generalizable to more diverse populations. Future studies should target diverse populations in order to test whether similar factors are similarly important for end-of-life decision making.     

Family Diabetes Matters: A View from the Other Side

BACKGROUND

Typically, chronic disease self-management happens in a family context, and for African American adults living with diabetes, family seems to matter in self-management processes. Many qualitative studies describe family diabetes interactions from the perspective of adults living with diabetes, but we have not heard from family members.

OBJECTIVE

To explore patient and family perspectives on family interactions around diabetes.

DESIGN

Qualitative study using focus group methodology.

PARTICIPANTS & APPROACH

We conducted eight audiotaped focus groups among African Americans (four with patients with diabetes and four with family members not diagnosed with diabetes), with a focus on topics of family communication, conflict, and support. The digital files were transcribed verbatim, coded, and analyzed using qualitative data analysis software. Directed content analysis and grounded theory approaches guided the interpretation of code summaries.

RESULTS

Focus groups included 67 participants (81 % female, mean age 64 years). Family members primarily included spouses, siblings, and adult children/grandchildren. For patients with diabetes, central issues included shifting family roles to accommodate diabetes and conflicts stemming from family advice-giving. Family members described discomfort with the perceived need to police or “stand over” the diabetic family member, not wanting to “throw diabetes in their [relative’s] face,” perceiving their communications as unhelpful, and confusion about their role in diabetes care. These concepts generated an emergent theme of “family diabetes silence.”

CONCLUSION

Diabetes silence, role adjustments, and conflict appear to be important aspects to address in family-centered diabetes self-management interventions. Contextual data gathered through formative research can inform such family-centered intervention development.     

Advance Care Planning in Cognitively Impaired Older Adults

Older adults with cognitive impairment face many healthcare challenges, chief among them participating in medical decision‐making about their own health care. Advance care planning (ACP) is the process whereby individuals communicate their wishes for future care with their clinicians and surrogate decision‐makers while they are still able to do so. ACP has been shown to improve important outcomes for individuals with cognitive impairment, but rates of ACP for these individuals are low because of individual‐, clinician‐, and system‐related factors. Addressing ACP early in the illness trajectory can maximize the chances that people can participate meaningfully. This article recommends best practices for approaching ACP for older adults with cognitive impairment. The importance of providing anticipatory guidance and eliciting values to guide future care to create a shared framework between clinicians, individuals, and surrogate decision‐makers is emphasized. It is recommended that ACP be approached as an iterative process to continue to honor and support people's wishes as cognitive impairment progresses and increasingly threatens independence and function. The article describes effective strategies for assessing decision‐making capacity, identifying surrogate decision‐makers, and using structured communication tools for ACP. It also provides guidelines for documentation and billing. Finally, special considerations for individuals with advanced dementia are described, including the use of artificial hydration and nutrition, decisions about site of care, and the role of hospice care.     

Opiniones: End‐of‐Life Care Preferences and Planning of Older Latinos

OBJECTIVES: To measure end‐of‐life (EOL) care preferences and advance care planning (ACP) in older Latinos and to examine the relationship between culture‐based attitudes and extent of ACP. DESIGN: Cross‐sectional interview. SETTING: Twenty‐two senior centers in greater Los Angeles. PARTICIPANTS: One hundred forty‐seven Latinos aged 60 and older. MEASUREMENTS: EOL care preferences, extent of ACP, attitudes regarding patient autonomy, family‐centered decision‐making, trust in healthcare providers, and health and sociodemographic characteristics. RESULTS: If seriously ill, 84% of participants would prefer medical care focused on comfort rather than care focused on extending life, yet 47% had never discussed such preferences with their family or doctor, and 77% had no advance directive. Most participants favored family‐centered decision making (64%) and limited patient autonomy (63%). Greater acculturation, education, and desire for autonomy were associated with having an advance directive (P‐values <.03). Controlling for sociodemographic characteristics, greater acculturation (adjusted odds ratio (AOR)=1.6, 95% confidence interval (CI)=1.1–2.4) and preferring greater autonomy (AOR=1.6, 95% CI=1.1–2.3) were independently associated with having an advance directive. CONCLUSIONS: The majority of older Latinos studied preferred less‐aggressive, comfort‐focused EOL care, yet few had documented or communicated this preference. This discrepancy places older Latinos at risk of receiving high‐intensity care inconsistent with their preferences.     

Remembering Sacrifices: Attitude and Beliefs Among Second-generation Korean Americans Regarding Family Support

Korean immigration peaked in the mid-1980s, so that large cohorts of post-1965 immigrants are now approaching or entering retirement. As the baby boomer generation ages, few studies have examined how the lack of retirement savings and eldercare plans combined with cultural expectations such as filial piety may pose challenges for aging Korean immigrants and their adult children. This exploratory study examines attitudes and beliefs among 1.5 and 2nd generation Korean American adults regarding filial expectations and support for aging immigrant parents. In-depth interviews conducted with 124 adult children of immigrants show that their attitudes and beliefs around filial care were primarily motivated by feelings of gratitude and a strong sense of responsibility toward their parents. In addition, because Korean immigrant parents often face language and financial barriers, adult children were preparing themselves for future support of their parents’ finances, health care and long-term care needs. Although both adult sons and daughters expressed a desire to care for their parents, adult daughters often discussed in detail their concerns and worries about future care of their parents. The findings of this paper illustrate how the intersections of gender, culture, and class inform attitudes and beliefs regarding aging and family support among Korean American families.     

Physicians’ Experience with Surrogate Decision Making for Hospitalized Adults

Background  Hospitalized patients frequently lack decision-making ability, yet little is known about physicians’ approaches to surrogate decision making. Objective  To describe physicians’ experiences with surrogate communication and decision making for hospitalized adults. Design  Cross-sectional written survey. Participants  Two hundred eighty-one physicians who recently cared for adult inpatients in one academic and two community hospitals. Measurements  Key features of physicians’ most recent surrogate decision-making experience, including the nature of the decision, the physician’s reaction, physician-surrogate communication and physician-surrogate agreement about the best course of action. Results  Nearly three fourths of physicians (73%, n = 206) had made a major decision with a surrogate during the past month. Although nearly all patients (90%) had a surrogate, physicians reported trouble contacting the surrogate in 21% of cases. Conflict was rare (5%), and a majority of physicians agreed with surrogates about the medical facts (77%), prognosis (72%) and best course of action (65%). After adjustment for patient, physician and decision characteristics, agreement about the best course of action was more common among surrogates for older patients [prevalence ratio (PR) = 1.17 for each decade; 95% confidence interval (CI) 1.02–1.31], ICU patients (PR = 1.40; CI 1.14–1.51) and patients who had previously discussed their wishes (PR = 1.60; CI 1.30–1.76), and less common when surrogates were difficult to contact (PR = 0.59; CI 0.29–0.92) or when the physician self-identified as Asian (PR = 0.60; CI 0.30–0.94). Conclusion  Surrogate decision making is common among hospitalized adults. Physician-surrogate decision making may be enhanced if patients discuss their preferences in advance and if physician contact with surrogate decision makers is facilitated. Electronic supplementary material  The online version of this article (doi:) contains supplementary material, which is available to authorized users. Prior Presentation  This paper was presented in part at the National Meeting of the Society of General Internal Medicine, April 2007.     

Initiating Factors of Chinese Intergenerational Conflict: Young Adults' Written Accounts

This study examined young adults' written accounts of intergenerational communication in conflict situations in the People's Republic of China. Using a content analysis approach, this study identified five major types of initiating factors that precipitated intergenerational conflict. Old-to-young criticism was most frequent, followed by illegitimate demand and rebuff. The least frequent initiating factors included young-to-old criticism and disagreement/generation gap. In addition, results indicated that more rebuffs were from nonfamily elders than from family elders, whereas disagreement with family elders was more frequent than with non-family elders. Proportionally speaking, no differences emerged between family and nonfamily elders for criticism (both old-to-young and young-to-old) and illegitimate demand. Results are discussed with respect to research in intergenerational communication, interpersonal conflict, and the Chinese socio-cultural norm of hierarchy and filial piety.     

Posttraumatic Stress and Complicated Grief in Family Members of Patients in the Intensive Care Unit

Background  Family members of patients in intensive care units (ICUs) are at risk for mental health morbidity both during and after a patient’s ICU stay. Objectives  To determine prevalences of and factors associated with anxiety, depression, posttraumatic stress and complicated grief in family members of ICU patients. Design  Prospective, longitudinal cohort study. Participants  Fifty family members of patients in ICUs at a large university hospital participated. Measurements  We used the Control Preferences Scale to determine participants’ role preferences for surrogate decision-making. We used the Hospital Anxiety and Depression Scale, Impact of Event Scale, and Inventory of Complicated Grief to measure anxiety and depression (at enrollment, 1 month, 6 months), posttraumatic stress (6 months), and complicated grief (6 months). Results  We interviewed all 50 participants at enrollment, 39 (78%) at 1 month, and 34 (68%) at 6 months. At the three time points, anxiety was present in 42% (95% CI, 29–56%), 21% (95% CI, 10–35%), and 15% (95% CI, 6–29%) of participants. Depression was present in 16% (95% CI, 8–28%), 8% (95% CI, 2–19%), and 6% (95% CI, 1–18%). At 6 months, 35% (95% CI, 21–52%) of participants had posttraumatic stress. Of the 38% who were bereaved, 46% (95% CI, 22–71%) had complicated grief. Posttraumatic stress was not more common in bereaved than nonbereaved participants, and neither posttraumatic stress nor complicated grief was associated with decision-making role preference or with anxiety or depression during the patient’s ICU stay. Conclusions  Symptoms of anxiety and depression diminished over time, but both bereaved and nonbereaved participants had high rates of posttraumatic stress and complicated grief. Family members should be assessed for posttraumatic stress and complicated grief.