Why don't patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians

BACKGROUND: Patients with chronic and terminal disease frequently do not talk to their physicians about end-of-life care. Interventions to improve this communication have generally been unsuccessful, suggesting that important barriers to this communication must exist. OBJECTIVES: To determine the barriers to and facilitators of patient-clinician communication about end-of-life care and to identify barriers and facilitators that are more common among those patients who are least likely to discuss end-of-life care: minorities and injection drug users. METHODS: We conducted a prospective study of 57 patients with advanced acquired immunodeficiency syndrome and their primary care clinicians who were recruited from university and private clinics. Barriers to and facilitators of end-of-life communication were identified from a prior qualitative study and assessed for frequency and importance and for an association with the occurrence and quality of end-of-life communication. RESULTS: Clinicians identified more barriers than patients. Barriers identified by patients and clinicians fell into 3 categories of potential interventions: education about end-of-life care, counseling to help address end-of-life concerns, and health care system changes to facilitate patient-clinician communication. Although none of the patient-identified barriers was associated with the occurrence of communication, 2 clinician-identified barriers were associated with less communication: "the patient has not been very sick yet" and "the patient isn't ready to talk about end-of-life care." Nonwhite patients were more likely to identify the following 2 barriers than white patients: "I feel that if I talk about death, it could bring death closer" and "I don't like to talk about the care I want if I get very sick." CONCLUSIONS: The diversity of barriers and facilitators relevant to patients with acquired immunodeficiency syndrome and their clinicians suggests that interventions to improve communication about end-of-life care must be focused on individual needs and must involve counseling interventions and health system changes in addition to education. Clinician barriers are more common and more strongly associated with the occurrence of end-of-life communication than patient barriers, suggesting that clinicians are an important target group for improving this communication.     

Advance care planning in COPD

The review aims to discuss current concepts in advance care planning (ACP) for patients with COPD, and to provide a narrative review of recent trends in ACP and end-of-life care for patients with COPD. ACP, which involves patient-clinician communication about end-of-life care, can improve outcomes for patients and their families, and may be especially relevant for patients with COPD. Effective patient-clinician communication is needed to inform and prepare patients about their diagnosis, treatment, prognosis and what dying might be like. It is important for clinicians to understand patients' values and preferences for life-sustaining treatments as well for their site of terminal care. Unfortunately, discussions about ACP and end-of-life care in current practice are scarce, and their quality is often poor. ACP can improve outcomes for patients and their relatives. The challenge remains in the practical implementation of ACP in the clinical setting, especially for patients with COPD. ACP should be implemented alongside curative-restorative care for patients with advanced COPD. The disease course of COPD is such that there will rarely be a clear transition point predicting the timing of the need for initiation of end-of-life care. Future studies should focus on interventions that facilitate concurrent ACP and prepare patients for making in-the-moment decisions, with the goal of improving the quality of end-of-life care.     

Interpreter services,language concordance,and health care quality

BACKGROUND: Patients with limited English proficiency (LEP) have more difficulty communicating with health care providers and are less satisfied with their care than others. Both interpreter- and language-concordant clinicians may help overcome these problems but few studies have compared these approaches. OBJECTIVE: To compare self-reported communication and visit ratings for LEP Asian immigrants whose visits involve either a clinic interpreter or a clinician speaking their native language. DESIGN: Cross-sectional survey-response rate 74%. PATIENTS: Two thousand seven hundred and fifteen LEP Chinese and Vietnamese immigrant adults who received care at 11 community-based health centers across the U.S. MEASUREMENTS: Five self-reported communication measures and overall rating of care. RESULTS: Patients who used interpreters were more likely than language-concordant patients to report having questions about their care (30.1% vs 20.9%, P<.001) or about mental health (25.3% vs 18.2%, P=.005) they wanted to ask but did not. They did not differ significantly in their response to 3 other communication measures or their likelihood of rating the health care received as "excellent" or "very good" (51.7% vs 50.9%, P=.8). Patients who rated their interpreters highly ("excellent" or "very good") were more likely to rate the health care they received highly (adjusted odds ratio 4.8, 95% confidence interval, 2.3 to 10.1). CONCLUSIONS: Assessments of communication and health care quality for outpatient visits are similar for LEP Asian immigrants who use interpreters and those whose clinicians speak their language. However, interpreter use may compromise certain aspects of communication. The perceived quality of the interpreter is strongly associated with patients' assessments of quality of care overall.     

Patient-physician communication about end-of-life care for patients with severe COPD.

Since patients with chronic obstructive pulmonary disease (COPD) infrequently discuss treatment preferences about end-of-life care with physicians, the goal of the present study was to identify which specific areas of communication about end-of-life care occur between patients with severe COPD and their physicians, and how patients rate the quality of this communication. A total of 115 patients with oxygen-dependent COPD, identified in pulmonary clinics in three hospitals and through an oxygen delivery company, were enrolled in this study. A 17-item quality of communication questionnaire (QOC) was administered to patients, along with other measures, including satisfaction with care. The patients reported that most physicians do not discuss how long the patients have to live, what dying might be like or patients' spirituality. Patients rated physicians highly at listening and answering questions. Areas patients rated relatively low included discussing prognosis, what dying might be like and spirituality/religion. Patients' assessments of physicians' overall communication and communication about treatment correlated well with the QOC. Patients' overall satisfaction with care also correlated significantly with the QOC. In conclusion, this study identifies areas of communication that physicians do not address and areas that patients rate poorly, including talking about prognosis, dying and spirituality. These areas may provide targets for interventions to improve communication about end-of-life care for patients with chronic obstructive pulmonary disease. Future studies should determine the responsiveness of these items to interventions, and the effect such interventions have on patient satisfaction and quality of care.     

A survey on how medical student consider end-if-life care in the elderly

We examined the way medical students think about end-of-life care in the elderly by a questionnaire survey. The major variables of the evaluation instrument included the students' idea of the special nature of end-of-life care for the elderly, the necessity for disclosure of the name of disease, consideration for patient's age on disclosure, advance directives concerning their life-sustaining treatment, and communication concerning preferences for end-of-life care. The final items on the instrument asked for student comments about end-of-life care in the elderly. We analyzed this qualitative data using the process of immersion/crystallization. We received 95 responses, and of these 65 (68%) provided written commentaries that were analyzed using qualitative techniques. Fifty-nine (62%) students pointed out the special nature of end-of-life care in the elderly and most of them (96%) needed the disclosure of the name of disease. Fifty-two (55%) students agreed with advance directives for end-of-life care and 88 (93%) students pointed out the importance of communication with regard to patients' preferences. Medical students' concerns about end-of-life care in the elderly related to three major domains: 1) patient-physician relationship; 2) the procedures of end-of-life care; and 3) emotional and intuitive comments. These results suggest that in the education of geriatric medicine the patient-physician's relationship about end-of-life care is important and we may need to introduce systematic lectures and practical training.     

The effect of discussions about advance directives on patients’ satisfaction with primary care

BACKGROUND: Discussions of end-of-life care should be held prior to acute, disabling events. Many barriers to having such discussions during primary care exist. These barriers include time constraints, communication difficulties, and perhaps physicians' anxiety that patients might react negatively to such discussions. OBJECTIVE: To assess the impact of discussions of advance directives on patients' satisfaction with their primary care physicians and outpatient visits. DESIGN: Prospective cohort study of patients enrolled in a randomized, controlled trial of the use of computers to remind primary care physicians to discuss advance directives with their elderly, chronically ill patients. SETTING: Academic primary care general internal medicine practice affiliated with an urban teaching hospital. PARTICIPANTS: Six hundred eighty-six patients who were at least 75 years old, or at least 50 years old with serious underlying disease, and their 87 primary care physicians (57 residents, 30 faculty general internists) participated in the study. MEASUREMENTS AND MAIN RESULTS: We assessed patients' satisfaction with their primary care physicians and visits via interviews held in the waiting room after completed visits. Controlling for satisfaction at enrollment and physician, patient, and visit factors, discussing advance directives was associated with greater satisfaction with the physician (P =.052). At follow-up, the strongest predictor of satisfaction with the primary care visit was having previously discussed advance directives with that physician (P =.004), with a trend towards greater visit satisfaction when discussions were held during that visit (P =.069). The percentage of patients scoring a visit as "excellent" increased from 34% for visits without prior advance directive discussions to 51% for visits with such discussions (P =.003). CONCLUSIONS: Elderly patients with chronic illnesses were more satisfied with their primary care physicians and outpatient visits when advanced directives were discussed. The improvement in visit satisfaction was substantial and persistent. This should encourage physicians to initiate such discussions to overcome communication barriers might result in reduced patient satisfaction levels.     

Barriers and facilitators to end-of-life care communication for patients with COPD

OBJECTIVE: Patients with COPD frequently do not discuss end-of-life care with physicians; therefore, we sought to identify the barriers and facilitators to this communication as a first step to overcoming barriers and capitalizing on facilitators. DESIGN: Fifteen barriers and 11 facilitators to patient-physician communication about end-of-life care were generated from focus groups of patients with COPD. We subsequently conducted a cross-sectional study of 115 patients with oxygen-dependent COPD and their physicians to identify the common barriers and facilitators and examine the association of these barriers and facilitators with communication about end-of-life care. PARTICIPANTS AND SETTING: Patients with oxygen-dependent COPD were recruited from clinics at a university, county, and Veterans Affairs teaching hospital, and an oxygen delivery company. We also recruited the physician identified by each patient as the doctor primarily responsible for their lung disease. MEASUREMENTS AND RESULTS: Patients were interviewed by trained research interviewers. Physician data collection was completed by mail survey. Participation rates were 40% for patients and 86% for physicians. Only 32% of patients reported having a discussion about end-of-life care with their physician. Two of 15 barriers and 8 of 11 facilitators were endorsed by > 50% of patients. The most commonly endorsed barriers were "I'd rather concentrate on staying alive," and "I'm not sure which doctor will be taking care of me." Two barriers were significantly associated with lack of communication, as follows: "I don't know what kind of care I want," and "I'm not sure which doctor will be taking care of me." The greater the number of barriers endorsed by patients, the less likely they were to have discussed end-of-life care with physicians (p < 0.01), suggesting the validity of these barriers. Conversely, the more facilitators, the more likely patients were to report having had end-of-life discussions with their physicians (p < 0.001). CONCLUSION: Although patients endorsed many barriers and facilitators, few barriers were endorsed by most patients. Barriers and facilitators associated with communication are targets for interventions to improve end-of-life care, but such interventions will likely need to address the specific barriers relevant to individual patient-physician pairs.     

The attitudes of patients with advanced AIDS toward use of the medical futility rationale in decisions to forego mechanical ventilation

BACKGROUND: The medical futility rationale asserts that physicians need not offer their patients therapies that have zero or close to zero probability of success. The rationale is controversial, but it is used in practice. OBJECTIVE: To examine the attitudes of patients with advanced acquired immunodeficiency syndrome (AIDS) toward the medical futility rationale as it might apply to their medical care. METHODS: We conducted a cross-sectional study with interviewer-administered questionnaires. Fifty-seven patients with advanced AIDS (C3 stage AIDS and a CD4 cell count <100/microL) were recruited from academic and private clinics. MAIN OUTCOME MEASURE: Whether patients believe it is acceptable for physicians to withhold mechanical ventilation, without offering it, if physicians determine the intervention is futile. RESULTS: Sixty-one percent of patients (n=35) believed that it was definitely acceptable for their physician to not offer mechanical ventilation if the physician judged this intervention to be futile, and 26% (n= 15) believed this was probably acceptable. Less than 10% of patients (n= 5) said not offering therapy judged futile was definitely not acceptable. Patients who were less likely to prefer mechanical ventilation in different hypothetical health states were significantly more likely to accept decisions on the basis of futility (P=.003). Health-related quality of life, patient satisfaction with medical care, and patient-clinician communication about end-of-life care were not associated with attitudes toward medical futility. CONCLUSIONS: Although the majority of patients with advanced AIDS accept the medical futility rationale, a substantial minority do not. Acceptance of this rationale was associated with wanting less life-sustaining treatment. Physicians invoking the medical futility rationale and hospitals using policies incorporating the medical futility rationale should take into account this diversity in the attitudes toward medical futility.     

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.     

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.     

Association between advance directives and quality of end-of-life care: a national study

OBJECTIVES: To examine the role of advance directives (ADs) 10 years after the Patient Self-Determination Act. DESIGN: Mortality follow-back survey. SETTING: People who died in a nursing home, hospital, or at home. PARTICIPANTS: Bereaved family member or other knowledgeable informant. MEASUREMENTS: Telephone interviewers that asked about the use of written ADs, use of life-sustaining treatment, and quality of care by asking whether staff provided desired symptom relief, treated the dying with respect, supported shared decision-making, coordinated care, and provided family with the needed information and emotional support. RESULTS: Of the 1,587 people who died, 70.8% had an AD. Persons who died at home with hospice or in a nursing home were more likely to have an AD. In addition, those with an AD were less likely to have a feeding tube (17% vs 27%) or use a respirator in the last month of life (11.8% vs 22.0%). Bereaved family members who reported that the decedent did not have an AD were more likely to report concerns with physician communication (adjusted odds ratio (AOR)=1.4, 95% confidence interval (CI)=1.1-1.6) and with being informed about what to expect (AOR=1.2, 95% CI=1.0-1.3). No statistically significant differences were observed in other outcomes. Even in those with an AD, important quality concerns remained; one in four reported an unmet need in pain, one in two reported inadequate emotional support for the patient, and one in three stated inadequate family emotional support. CONCLUSION: Bereaved family member report of completion of an AD was associated with greater use of hospice and fewer reported concerns with communication, yet important opportunities remain to improve the quality of end-of-life care.     

Barriers to communication about end-of-life care in AIDS patients

Objective

Patients and physicians do not adequately discuss patients’ preferences for medical care at the end of life. Our objective was to perform a qualitative study using focus groups to identify barriers and facilitators to communication about end-of-life medical care for patients with AIDS and their physicians.

Participants

Patients with AIDS and physicians with moderate or extensive HIV experience were recruited from clinics and community-based settings using network sampling. A total of 47 patients participated in six focus groups and 19 physicians participated in three groups.

Measurements and main results

Patients or physicians identified 29 barriers and facilitators to communication about end-of-life care. Many patients and physicians expressed discomfort talking about death and dying, and some felt that discussing end-of-life care could cause harm or even hasten death. Several patients expressed the view that a living will obviated the need for discussion with their physician. Previous experience of discrimination from the health care system was a strong barrier to end-of-life communication for some patients with AIDS. Some patients hesitate to bring up end-of-life issues because they want to protect their physicians from uncomfortable discussions. Many patients identified the quality of communication as an important facilitator to these difficult discussions.

Conclusions

Improving the quality of patient-physician communication about end-of-life care will require that physicians identify and overcome the barriers to this communication. To improve the quality of medical care at the end of life, we must address the quality of communication about end-of-life care.     

Current research findings on end-of-life decision making among racially or ethnically diverse groups

PURPOSE: We reviewed the research literature on racial or ethnic diversity and end-of-life decision making in order to identify key findings and provide recommendations for future research. DESIGN AND METHODS: We identified 33 empirical studies in which race or ethnicity was investigated as either a variable predicting treatment preferences or choices, where racial or ethnic groups were compared in their end-of-life decisions, or where the end-of-life decision making of a single minority group was studied in depth. We conducted a narrative review and identified four topical domains of study: advance directives; life support; disclosure and communication of diagnosis, prognosis, and preferences; and designation of primary decision makers. RESULTS: Non-White racial or ethnic groups generally lacked knowledge of advance directives and were less likely than Whites to support advance directives. African Americans were consistently found to prefer the use of life support; Asians and Hispanics were more likely to prefer family-centered decision making than other racial or ethnic groups. Variations within groups existed and were related to cultural values, demographic characteristics, level of acculturation, and knowledge of end-of-life treatment options. Common methodological limitations of these studies were lack of theoretical framework, use of cross-sectional designs, convenience samples, and self-developed measurement scales. IMPLICATIONS: Although the studies are limited by methodological concerns, identified differences in end-of-life decision-making preference and practice suggest that clinical care and policy should recognize the variety of values and preferences found among diverse racial or ethnic groups. Future research priorities are described to better inform clinicians and policy makers about ways to allow for more culturally sensitive approaches to end-of-life care.     

Patients' perspectives on physician skill in end-of-life care: differences between patients with COPD,cancer, and AIDS

OBJECTIVES: Patients' views of physician skill in providing end-of-life care may vary across different diseases, and understanding these differences will help physicians improve the quality of care they provide for patients at the end of life. The objective of this study was to examine the perspectives of patients with COPD, cancer, or AIDS regarding important aspects of physician skill in providing end-of-life care. DESIGN: Qualitative study using focus groups and content analysis based on grounded theory. SETTING: Outpatients from multiple medical settings in Seattle, WA. PATIENTS: Eleven focus groups of 79 patients with three diseases: COPD (n = 24), AIDS (n = 36), or cancer (n = 19). RESULTS: We identified, from the perspectives of patients, the important physician skills for high-quality end-of-life care. Remarkable similarities were found in the perspectives of patients with COPD, AIDS, and cancer, including the importance of emotional support, communication, and accessibility and continuity. However, each disease group identified a unique theme that was qualitatively more important to that group. For patients with COPD, the domain concerning physicians' ability to provide patient education stood out as qualitatively and quantitatively more important. Patients with COPD desired patient education in five content areas: diagnosis and disease process, treatment, prognosis, what dying might be like, and advance care planning. For patients with AIDS, the unique theme was pain control; for patients with cancer, the unique theme was maintaining hope despite a terminal diagnosis. CONCLUSIONS: Patients with COPD, AIDS, and cancer demonstrated many similarities in their perspectives on important areas of physician skill in providing end-of-life care, but patients with each disease identified a specific area of end-of-life care that was uniquely important to them. Physicians and educators should target patients with COPD for efforts to improve patient education about their disease and about end-of-life care, especially in the areas defined above. Physicians caring for patients with advanced AIDS should discuss pain control at the end of life, and physicians caring for patients with cancer should be aware of many patients' desires to maintain hope. Physician understanding of these differences will provide insights that allow improvement in the quality of care.     

End-of-life care in a voluntary hospitalist model: effects on communication, processes of care, and patient symptoms

PURPOSE: To assess the effects of hospitalist care on communication, care patterns, and outcomes of dying patients. METHODS: We examined the charts of 148 patients who had died at a community-based, urban teaching hospital, comparing the end-of-life care provided by community physicians and hospitalists. RESULTS: Patients of hospitalists and community-based physicians were similar in age, race, severity of acute illness, and difficulties with activities of daily living. After admission, hospitalists had discussions with patients or their families regarding care more often than did community physicians (91% [67/74] vs. 73% [54/74], P = 0.006) and were more likely to document these discussions themselves. Among patients who were "full code" at admission, there was a trend towards patients of hospitalists receiving comfort care more frequently at the time of death (50% [25/48] vs. 37% [15/40], P = 0.14). Although there were no differences in the use of medications such as long-acting opioids, no symptoms in the 48 hours prior to death were more likely to be noted for patients of hospitalists (47% [n = 35] vs. 31% [n = 23]), P = 0.03). After adjustment for confounding factors in multivariable models, only findings regarding documentation of discussions and symptoms remained statistically significant. CONCLUSION: Hospitalists at a community-based teaching hospital documented substantial efforts to communicate with dying patients and their families, which may have resulted in improved end-of-life care.     

Advance care planning

BACKGROUND: Advance directives (AD) with specific treatment preferences can be difficult to apply in actual clinical situations. As an alternative, advance directives that outline patient goals and values have been advocated. OBJECTIVE: To compare patient reactions to values-based and treatment-based advance directive forms. SETTING: Two academic general medicine outpatient clinics in Pittsburgh, Pa. METHODS: Outpatients age 55 or older who did not have an AD and were not demented were randomly assigned to complete either Emanuel's Medical Directive (EMD) or Pearlman's values history (PVH) form. MEASUREMENTS: Length of time to complete and number of questions asked about the AD forms; proportions of patients discussing the AD with family, designating a surrogate, returning the AD by mail, and desiring to have the AD in the medical record; patient ratings of AD by telephone interview; physician report of patient-initiated AD discussions. RESULTS: Of the 275 patients approached, 143 refused, 69 already had an AD, 63 patients were enrolled, and 25 in each group completed the telephone interview. A majority of individuals in both groups had conversations with others about the AD (60% EMD, 56% PVH; P = .77). All PVH forms designated a surrogate, whereas 79% of EMD forms did so (P = .02). One patient in each group initiated a conversation with his or her physician about AD following study completion. Both forms were thought to be a good first step in planning care at the end of life (92% EMD vs 84% PVH totally or mostly agree; P = .06). Patients completing the EMD thought it would give them control over the way their doctor cared for them at the end of their lives more than did the PVH group (84% EMD vs 48% PVH totally or mostly agree; P = .02). More patients completing the EMD form worried that it would be difficult to change answers on the form if they later changed their minds (20% EMD vs 4% PVH totally or mostly agree; P = .02). CONCLUSIONS: Both the values-based and treatment-based AD forms were rated favorably overall. Patients thought the treatment-based directive would give them more control over their care. Patients completing the values history form were more likely to designate a surrogate. Patients are likely to discuss both types of AD with family, but neither form alone is likely to lead to AD conversations with physicians.     

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.     

Advance care planning in nursing homes: correlates of capacity and possession of advance directives

PURPOSE: The identification of nursing home residents who can continue to participate in advance care planning about end-of-life care is a critical clinical and bioethical issue. This study uses high quality observational research to identify correlates of advance care planning in nursing homes, including objective measurement of capacity. DESIGN AND METHODS: The authors used cross-sectional, cohort study between 1997 and 1999. Seventy-eight residents (M age = 83.97, SD = 8.2) and their proxies (M age = 59.23, SD = 11.77) were included across five nursing homes. The authors obtained data via chart review, proxy interviews, resident assessments, survey completion by certified nursing assistants, and direct observation of residents' daily behaviors. RESULTS: Capacity assessments revealed that most residents could state a simple treatment preference (82.4%), but a sizable number did not retain capacity to understand treatment alternatives or appreciate the consequences of their choice. Global cognitive ability (Mini-Mental State Examination score) was related to understanding and appreciation. When the authors removed the effects of global cognitive ability, understanding and appreciation were related to time spent by residents in verbal interaction with others. Residents were more likely to possess advance directives when proxies possessed advance directives, proxies were less religious, and residents were socially engaged. IMPLICATIONS: Assessment of proxy beliefs and direct determination of residents' decisional capacity and social engagement may help nursing home staff identify families who may participate in advance planning for end-of-life medical care. Measures of global cognitive ability offer limited information about resident capacity for decision making. Decisional capacity assessments should enhance the verbal ability of individuals with dementia by reducing reliance on memory in the assessment process. Interventions to engage residents and families in structured discussions for end-of-life planning are needed.     

Toward shared decision making at the end of life in intensive care units: opportunities for improvement

BACKGROUND: In North America, families generally wish to be involved in end-of-life decisions when the patient cannot participate, yet little is known about the extent to which shared decision making occurs in intensive care units. METHODS: We audiotaped 51 physician-family conferences about major end-of-life treatment decisions at 4 hospitals from August 1, 2000, to July 31, 2002. We measured shared decision making using a previously validated instrument to assess the following 10 elements: discussing the nature of the decision, describing treatment alternatives, discussing the pros and cons of the choices, discussing uncertainty, assessing family understanding, eliciting patient values and preferences, discussing the family's role in decision making, assessing the need for input from others, exploring the context of the decision, and eliciting the family's opinion about the treatment decision. We used a mixed-effects regression model to determine predictors of shared decision making and to evaluate whether higher levels of shared decision making were associated with greater family satisfaction. RESULTS: Only 2% (1/51) of decisions met all 10 criteria for shared decision making. The most frequently addressed elements were the nature of the decision (100%) and the context of the decision to be made (92%). The least frequently addressed elements were the family's role in decision making (31%) and an assessment of the family's understanding of the decision (25%). In multivariate analysis, lower family educational level was associated with less shared decision making (partial correlation coefficient, 0.34; standardized beta, .3; P = .02). Higher levels of shared decision making were associated with greater family satisfaction with communication (partial correlation coefficient, 0.15; standardized beta, .09; P = .03). CONCLUSIONS: Shared decision making about end-of-life treatment choices was often incomplete, especially among less educated families. Higher levels of shared decision making were associated with greater family satisfaction. Shared decision making may be an important area for quality improvement in intensive care units.