Micromanaging death: process preferences, values, and goals in end-of-life medical decision making

PURPOSE: This study examined patients' and surrogates' attitudes about using advance directives to manage end-of-life medical care. It also explored process preferences, or how patients want decisions to be made. DESIGN AND METHODS: Data come from the third wave of the Advance Directives, Values Assessment, and Communication Enhancement project, a longitudinal study designed to investigate psychological assumptions underlying the use of advance directives. Three-hundred thirty-seven outpatients aged 65 and older and their designated surrogate decision makers completed interviews and questionnaires. RESULTS: Very few individuals wished to document specific medical treatment preferences and mandate that they be followed, without exception, near death. Most desired to express more general preferences, such as values and goals for care, in addition to (or, instead of) specific treatment preferences and to allow surrogate decision makers leeway in decision making. Patient-to-patient variability with regard to process preferences was substantial, as was surrogates' misunderstanding of the patients' process preferences. IMPLICATIONS: Very few individuals may desire the standard approach to advance care planning whereby preferences for specific life-sustaining treatments are documented and these requests are strictly followed near death. Instead, patient autonomy may be better served by emphasizing discussion of process preferences and leeway in decision making.     

Who will make health care decisions for me when I can't?

Medical professionals are increasingly faced with ethical dilemmas of caring for older patients who are decisionally incapacitated. Most often they rely on family to serve as surrogate decision makers. Does that practice agree with the preferences of the elderly themselves? Examined are the exploratory and qualitative findings of a sample of men and women, age 65 to 91 (N = 71). Comparisons are made between those elderly who have families and those who do not have families regarding the use of and interest in advance directives and proxy appointments. The findings suggest that elderly persons with families prefer to rely on relatives to conduct substitute decision making informally, unencumbered by legally executed living wills or proxy documents. Those without families view friends and doctors as their surrogate resource and endorse the use of legal proxy appointments. Implications for the use of advance directives and further public policy are discussed.     

High rates of advance care planning in New York City's elderly population

BACKGROUND: Previous studies have demonstrated low rates of advance care planning (ACP), particularly among nonwhite populations, raising questions about the generalizability of this decision-making process. OBJECTIVE: To explore factors that may influence patients' willingness to engage in ACP. DESIGN: Survey. SETTING: Thirty-four randomly selected New York City senior centers. PARTICIPANTS: A total of 700 African American (n = 239), Hispanic (n = 237), and white (n = 224) adults 60 years and older. INTERVENTION: Participants were administered a 51-item survey that assessed attitudes, beliefs, and practices regarding ACP. MAIN OUTCOME MEASURES: Attitudes and beliefs about physicians' trustworthiness, fatalism, beliefs about surrogate decision making, and comfort discussing end-of-life medical care; factors associated with health care proxy completion; and health care proxy completion rates. RESULTS: More than one third of the participants had completed a health care proxy. There were no significant differences in completion rates across the 3 ethnic groups. Respondents who had a primary care physician (odds ratio [OR], 2.0; 95% confidence interval [CI], 1.3-3.2), were more knowledgeable about advance directives (OR, 2.0; 95% CI, 1.4-2.9), or had seen a friend or family member use a mechanical ventilator (OR, 1.5; 95% CI, 1.02-2.1) were significantly more likely to have designated a health care proxy. Respondents who were only comfortable discussing ACP if the discussion was initiated by the physician (OR, 0.6; 95% CI, 0.0-0.8) were significantly less likely to have completed a health care proxy. CONCLUSIONS: African American, Hispanic, and white community-dwelling, older adults had similarly high rates of advance directive completion. The primary predictors of advance directive completion involved modifiable factors such as established primary care physicians, personal experience with mechanical ventilation, knowledge about the process of ACP, and physicians' willingness to effectively initiate such discussions. Some of the racial/ethnic differences in desire for collective family-based decision making that were observed in this study have implications for the evolution of ACP policy that respects and operationalizes these preferences.     

Decision-making factors regarding resuscitate and hospitalize orders by families of elderly persons on admission to a Japanese long-term care hospital

BACKGROUND: Because long-term care facilities are being asked to care for more and more residents who are dying, the facilities require that new residents and families make decisions regarding their end-of-life care at the time of the admission process. An advance directive including "do-not resuscitate directives (DNR)" or "do-not-hospitalize directives (DNH)" is a written document that afford individuals the opportunity to determine the type and extent of end-of-life care when they are incapable of participation in medical decision making. It is expected that Japanese elderly and families make individual decisions regarding end-of-life care by a Japanese-style decision-making model including advance directives. The purpose of this study was to explore families' decision-making factors regarding cardiopulmonary resuscitate (CPR) and hospitalize orders in a long-term care hospital. METHOD: We assessed 70 admissions in a long-term care hospital in Aichi prefecture from April 2005 to September 2006. All residents were divided into two groups according to their CPR or hospitalize order. Data on the admission characteristics of the residents were collected from medical charts. RESULTS: The prevalence of older age, functional dependence, and illness did not vary significantly with CPR or hospitalize order recorded by families, however, significant variation among physicians existed in the CPR and hospitalize orders. CONCLUSION: Wide variation in the likelihood of having CPR and hospitalize orders among physicians who explain an advance directive suggests a need for standardized methods for eliciting the end-of-life preferences of residents and families on admission to long-term care hospitals.     

Advance directives as acts of communication: a randomized controlled trial

BACKGROUND: Instructional advance directives are widely advocated as a means of preserving patient self-determination at the end of life based on the assumption that they improve surrogates' understanding of patients' life-sustaining treatment wishes. However, no research has examined whether instructional directives are effective in improving the accuracy of surrogate decisions. PARTICIPANTS AND METHODS: A total of 401 outpatients aged 65 years or older and their self-designated surrogate decision makers (62% spouses, 29% children) were randomized to 1 of 5 experimental conditions. In the control condition, surrogates predicted patients' preferences for 4 life-sustaining medical treatments in 9 illness scenarios without the benefit of a patient-completed advance directive. Accuracy in this condition was compared with that in 4 intervention conditions in which surrogates made predictions after reviewing either a scenario-based or a value-based directive completed by the patient and either discussing or not discussing the contents of the directive with the patient. Perceived benefits of advance directive completion were also measured. RESULTS: None of the interventions produced significant improvements in the accuracy of surrogate substituted judgment in any illness scenario or for any medical treatment. Discussion interventions improved perceived surrogate understanding and comfort for patient-surrogate pairs in which the patient had not completed an advance directive prior to study participation. CONCLUSIONS: Our results challenge current policy and law advocating instructional advance directives as a means of honoring specific patient wishes at the end of life. Future research should explore other methods of improving surrogate decision making and consider the value of other outcomes in evaluating the effectiveness of advance care planning.     

A new myth about families of older people?

Are gerontologists creating a new myth about families by emphasizing individual autonomy as independence without family interdependence, by advocating advance directives instead of supporting a rebuttable presumption of family surrogates, and following the lead of the U.S. Supreme Court in the Cruzan case (Cruzan v. Director, 1990), by ignoring intergenerational interdependencies in surrogate decision making? This paper argues that another antifamily trend is developing despite empirical evidence showing that elderly persons themselves prefer family members to represent them in surrogate decision making. Research and public policy suggestions are offered for protecting the elderly's preferences.     

Knowledge of and preference for advance care planning by adults with congenital heart disease

Congenital heart disease (CHD) is a chronic illness. Few adults with CHD are cured and those with disease of moderate or great complexity remain at risk of premature death. Current adult CHD guidelines recommend that providers encourage their patients to complete advance directives. We evaluated the prevalence of completed advance directives by and the preference for information about life expectancy of outpatients at a large adult CHD program. Two hundred patients with CHD (52% men, 35 ± 15 years old, range 18 to 79, 81% with disease of moderate or great complexity) completed a survey that assessed knowledge of advance directives and nature of and preferences for advance care planning. Only 5% of patients reported that they had completed advance directives; 56% had never heard of them. However, most patients (87%) reported that they would prefer to have an advance directive available if they were dealing with their own dying and were unable to speak for themselves. Patients who had formally identified substitute decision makers (n = 34) were typically older (47 ± 16 vs 33 ± 13 years, p <0.001) and more likely to have partners (30% vs 6%, p <0.001). Most patients (70%) reported that they wanted general information about the average life expectancy for patients with their heart condition. In conclusion, in contrast to recommendations from published guidelines, advance care planning documents are infrequently completed by outpatients. Health care providers caring for patients with CHD should educate their patients about advance directives and assist them in preparing formal end-of-life-planning documents.     

Using the family covenant in planning end-of-life care: obligations and promises of patients,families, and physicians

Physicians and families need to interact more meaningfully to clarify the values and preferences at stake in advance care planning. The current use of advance directives fails to respect patient autonomy. This paper proposes using the family covenant as a preventive ethics process designed to improve end-of-life planning by incorporating other family members--as agreed to by the patient and those family members--into the medical care dialogue. The family covenant formulates advance directives in conversation with family members and with the assistance of a physician, thereby making advance directives more acceptable to the family, and more intelligible to other physicians. It adds the moral force of a promise to the obligation of respecting a patient's preferences about end-of-life care. These negotiations between patient, family, and physician, from early planning phases through implementation, should greatly reduce the incidence of family disagreements on what the patient would have wanted. The family covenant ensures advance directive discussions within the family, promotes and respects the autonomy of other family members, and might even spur others in the family to complete advance directives through additional covenants. The family covenant holds the potential to transform moral quagmires into meaningful moral conversation.     

Attitudes and preferences of Korean-American older adults and caregivers on end-of-life care

A growing body of literature suggests that diverse attitudes toward the end of life exist across and within ethnic minority groups. This focus-group pilot study examined social and cultural factors influencing views of Korean-American older adults and caregivers on advance care planning and hospice care. A total of 20 older adults and 16 caregivers in west central Florida participated in one of four focus groups. This study found diverse attitudes among Korean Americans toward end-of-life care and cultural and structural barriers to advance care planning and hospice use. Older adults and caregivers both expressed a lack of knowledge about advance care planning and hospice and agreed that the family would make the final decision about the end-of-life care, while acknowledging the challenge of initiating communications about treatment preferences. They interpreted the Korean value of filial piety to support both curative and palliative treatment. The traditional norm of home death and importance of physician communication influenced preferences for hospice and advance care planning, respectively. Future outreach and education efforts should include development of culturally sensitive educational and communication tools and collaboration with ethnic community organizations and healthcare providers in the dissemination and education of these instruments.     

Racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care

This study investigated racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care. Ten focus groups and a follow-up survey were conducted to obtain in-depth information on end-of-life preferences across five racial/ethnic groups in Michigan stratified by sex. There were 73 focus group participants, including Arab Muslims, Arab Christians, Hispanics, blacks, and whites. The mean age+/-standard deviation was 67+/-8.5 (range 50-83). A focus group screener was used to recruit participants. A moderator discussion guide was used to guide the focus groups. A take-home questionnaire asked about demographic information and end-of-life issues. Arab Americans were in favor of making peace on earth and were against assisted suicide, extending life artificially, nursing homes, and telling the patient "bad news." Hispanic and black women were against assisted suicide and in favor of extending life, whereas the men in these groups felt the opposite. Hispanic women spoke of not wanting a feeding tube and would consider alternative medicine. Blacks were least opposed to nursing homes. For whites, it was important to have choices. When asked about discrimination related to end-of-life care, Muslim women spoke of cultural barriers, blacks spoke of inequities in the past, and whites spoke of age discrimination and abandonment when dying. As the population becomes more diverse and continues to age, it will be important to provide culturally and sex-sensitive end-of-life interventions to increase patient/family satisfaction and allocate resources appropriately.     

Medical decision making for patients without surrogates

Patients who lose decision-making capacity and lack advance directives and next of kin present a quandary for physicians. Current mechanisms for making treatment decisions for these patients rely on decision makers, such as courts, public guardians, committees, and physicians, who typically do not have sufficient knowledge to predict the patients' preferences. Thus, these mechanisms likely yield decisions that are inconsistent with patients' treatment preferences in many cases. A population-based treatment indicator is a computer-based tool that predicts which treatment a given patient would prefer based on the treatment preferences of similar patients in similar situations. A recent analysis suggests that a population-based treatment indicator could predict patient preferences as accurately as patient-appointed surrogates and next of kin. This analysis suggests that a population-based treatment indicator may provide a mechanism to respect the treatment preferences of patients without surrogates and ensure that their treatment preferences are respected as much as the preferences of patients who have surrogates. Collection of data on patients' treatment preferences, especially those without surrogates, incorporation of these data into a treatment indicator, and exploration of ways to implement this approach for patients without surrogates are called for.     

Advance care planning and health care preferences of community-dwelling elders: the Framingham Heart Study

OBJECTIVE: The study objective was to describe self-reported advance care planning, health care preferences, use of advance directives, and health perceptions in a very elderly community-dwelling sample. METHODS: We interviewed surviving participants of the original cohort of the Framingham Heart Study who were cognitively intact and attended a routine research examination between February 2004 and October 2005. Participants were queried about discussions about end-of-life care, preferences for care, documentation of advance directives, and health perceptions. RESULTS: Among 220 community-dwelling respondents, 67% were women with a mean age of 88 years (range 84-100 years). Overall, 69% discussed their wishes for medical care at the end of life with someone, but only 17% discussed their wishes with a physician or health care provider. Two thirds had a health care proxy, 55% had a living will, and 41% had both. Most (80%) respondents preferred comfort care over life-extending care, and 71% preferred to die at home; however, substantially fewer respondents said they would rather die than receive specific life-prolonging interventions (chronic ventilator [63%] or feeding tube [64%]). Many were willing to endure distressing health states, with fewer than half indicating that they would rather die than live out their life in a great deal of pain (46%) or be confused and/or forgetful (45%) all of the time. CONCLUSIONS: Although the vast majority of very elderly community-dwellers in this sample appear to prefer comfort measures at the end of life, many said they were willing to endure specific life-prolonging interventions and distressing health states to avoid death. Our results highlight the need for physicians to better understand patients' preferences and goals of care to help them make informed decisions at the end of life.     

Traditional Expectations Versus US Realities: First- and Second-Generation Asian Indian Perspectives on End-of-Life Care

BACKGROUND  

Although end-of-life care preferences vary across racial/ethnic groups, little is known about how cultural values affect end-of-life care preferences among South Asian immigrants and their offspring in the US.     

Dialysis patients' preferences for family-based advance care planning.

BACKGROUND: Most patients do not participate in advance care planning with physicians. OBJECTIVE: To examine patients' preferences for involving their physicians and families in advance care planning. DESIGN: Face-to-face interviews with randomly selected patients. SETTING: Community-based dialysis units in one rural and one urban region. PARTICIPANTS: 400 hemodialysis patients. MEASUREMENTS: Questions about whom patients involve in advance care planning, whom patients would like to include in this planning, and patients' reactions to state legislation on surrogate decision makers in end-of-life care. RESULTS: Patients more frequently discussed preferences for end-of-life care with family members than with physicians (50% compared with 6%; P < 0.001). More patients wanted to include family members in future discussions of advance care planning than wanted to include physicians (91% compared with 36%; P < 0.001). Patients were most comfortable with legislation that granted their family end-of-life decision-making authority in the event of their own incapacity (P < 0.001). CONCLUSION: Most patients want to include their families more than their physicians in advance care planning.     

Sexuality and Aging:

Previous research has been conducted regarding preferences of physicians for life-sustaining treatments for themselves, but there is a dearth of data on personal use of advance directives (ADs) by geriatricians specifically. Using a phone survey, we contacted all graduates of the geriatric fellowship program to assess their personal use of advance directives and their personal preferences for life-sustaining treatment. Of the 124 living graduates of the Parker Jewish Institute for Health Care and Rehabilitation, 70 agreed to participate. One third of respondents had established ADs for themselves, with higher rates in women than men (p = .054). Older geriatricians were significantly more likely to have advance directives (exact trend test yields, p < .0001). In general, respondents did not inform their health care providers about their desires for end-of-life care. This study revealed that the majority of fellowship-trained geriatricians did not formally establish advance directives for themselves. Further research is needed to determine whether physicians who establish advance directives for themselves are more likely to encourage their patients to do so.     

Characteristics and Methodological Quality of Meta‐Analyses on Hypertension Treatments—A Cross‐Sectional Study

Methodological quality of meta‐analyses on hypertension treatments can affect treatment decision‐making. The authors conducted a cross‐sectional study to investigate the methodological quality of meta‐analyses on hypertension treatments. One hundred and fifty‐eight meta‐analyses were identified. Overall, methodological quality was unsatisfactory in the following aspects: comprehensive reporting of financial support (1.9%), provision of included and excluded lists of studies (22.8%), inclusion of grey literature (27.2%), and inclusion of protocols (32.9%). The 126 non‐Cochrane meta‐analyses had poor performance on almost all the methodological items. Non‐Cochrane meta‐analyses focused on nonpharmacologic treatments were more likely to consider scientific quality of included studies when making conclusions. The 32 Cochrane meta‐analyses generally had good methodological quality except for comprehensive reporting of the sources of support. These results highlight the need for cautious interpretation of these meta‐analyses, especially among physicians and policy makers when guidelines are formulated. Future meta‐analyses should pay attention to improving these methodological aspects.     

End-of-life care preferences of patients enrolled in cardiovascular rehabilitation programs

STUDY OBJECTIVES: The study assessed the interests of ambulatory cardiac patients in advance planning and their willingness to participate in rehabilitation program-based end-of-life education. DESIGN: Observational survey study. SETTING: Fourteen outpatient cardiac rehabilitation programs in 11 states. PARTICIPANTS: Four hundred fifteen subjects enrolled in cardiac rehabilitation. MEASUREMENTS AND RESULTS: A questionnaire determined patient preferences for advance planning, completion of advance directives, completion of patient-physician discussions on end-of-life care, and effects of health status on patient acceptance of life-sustaining interventions. Seventy-two percent of patients wanted to direct their own end-of-life care, 86% desired more information on advance directives, 62% wanted to learn about life-sustaining care, and 96% were receptive to advance-planning discussions with their physicians. Seventy-two percent of patients had considered that they might require life-sustaining care in the future; acceptability of resuscitative care depended on health status and probability of survival. However, only 15% had discussed advance planning with their physicians, and 10% were confident that their physicians understood their end-of-life wishes. Physicians and cardiovascular rehabilitation programs were considered desirable sources of information on advance planning. CONCLUSIONS: Cardiac patients enrolled in rehabilitation programs want to learn more about end-of-life care and need more opportunities to discuss advance planning with their physicians. Patients consider cardiovascular rehabilitation programs to be acceptable sites for advance planning education.     

Content of advance directives for individuals with advanced dementia

OBJECTIVE: To examine how people with end-stage dementia have conveyed their wishes for end-of-life care in advance directives. METHOD: The documents of 123 residents of three Maryland nursing homes, all with end-stage dementia, were reviewed. RESULTS: More years of education and White race were significantly associated with having an advance directive. With the exceptions of comfort care and pain treatment, advance directives were used primarily to restrict, not request, many forms of care at the end of life. Decisions about care for end-stage conditions such as Alzheimer's dementia are less often addressed in these documents than for terminal conditions and persistent vegetative state. DISCUSSION: For advance directives to better reflect a person's wishes, discussions with individuals and families about advance directives should include a range of care issues in the settings of terminal illness, persistent vegetative state or end-stage illness. These documents should be reviewed periodically to make certain that they convey accurately the person's treatment preferences.     

Racial variations in end-of-life care

OBJECTIVES: To identify differences in advanced care planning and end-of-life decision-making between whites and blacks aged 70 and older. DESIGN: The Asset and Health Dynamics Among the Oldest Old (AHEAD) study is a nationally representative survey of adults who were aged 70 and older in 1993. Relatives (proxy respondents) for 540 persons who died between the first (1993) and second (1995) waves of the study were surveyed about advanced care planning and end-of-life decisions that were made for their family member who died. SETTING: Respondents were interviewed at home by telephone (n = 444) or in person (n = 95). PARTICIPANTS: The 540 proxy respondents included 454 whites and 86 blacks. MEASUREMENTS: Questions were asked about advance care planning and end-of-life decisions. RESULTS: Whites were significantly more likely than blacks to discuss treatment preferences before death (P = .002), to complete a living will (P = .001), and to designate a Durable Power of Attorney for Health Care (DPAHC) (P = .032). The treatment decisions for whites were more likely to involve limiting care in certain situations (P = .007) and withholding treatment before death (P = .034). In contrast, the treatment decisions for blacks were more likely to be based on the desire to provide all care possible in order to prolong life (P = .013). Logistic regression models revealed that race continued to be a significant predictor of advance care planning and treatment decisions even after controlling for sociodemographic factors. CONCLUSIONS: These findings suggest that there are important differences between blacks and whites regarding advanced care planning and end-of-life decision-making. Health professionals need to understand the diverse array of end-of-life preferences among various racial and ethnic groups and to develop greater awareness and sensitivity to these preferences when helping patients with end-of-life decision-making.