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.     

Resident approaches to advance care planning on the day of hospital admission

BACKGROUND: Advance care planning is the process of establishing a patient's goals and preferences for future care. Previous research has demonstrated a need to improve patient-physician communication around advance care planning. A critical time for advance care planning conversations is the day of admission to the hospital. METHODS: A survey of internal medicine residents was administered at Duke University Medical Center and the Brigham and Women's Hospital, 2 major academic teaching centers. Residents were questioned about their approaches to advance care planning on their last on-call admitting day. RESULTS: Of 347 residents solicited, 292 (84.1%) participated in the survey. Residents reported that they established preferences for cardiopulmonary resuscitation (CPR) with 70.5% of patients, established a health care proxy with 33.7% of patients, discussed goals and values concerning end-of-life care with 32.0% of patients, and asked 35.6% of patients if they had an advance directive. Although 89.0% of residents had observed an advance care planning discussion model, only 66.4% had received teaching and 36.6% had received feedback about advance care planning conversations. In multivariable analysis, having received feedback about advance care planning conversations was associated with a higher percentage of conversations about health care proxy and goals and values related to the end of life. CONCLUSIONS: Residents discuss patient preferences for CPR on the day of admission with most patients. Preparing residents, particularly through feedback, may improve communication around other elements of advance care planning.     

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.     

The need for safeguards in advance care planning

The recent uproar about Medicare “death panels” draws attention to public and professional concerns that advance care planning might restrict access to desired life-sustaining care. The primary goal of advance care planning is to promote the autonomy of a decisionally incapacitated patient when choices about life-sustaining treatments are encountered, but the safety of this procedure has not received deserved scrutiny. Patients often do not understand their decisions or they may change their mind without changing their advance care directives. Likewise, concordance between patients’ wishes and the understanding of the physicians and surrogate decision makers who need to represent these wishes is disappointingly poor. A few recent reports show encouraging outcomes from advance care planning, but most studies indicate that the procedure is ineffective in protecting patients from unwanted treatments and may even undermine autonomy by leading to choices that do not reflect patient values, goals, and preferences. Safeguards for advance care planning should be put in place, such as encouraging physicians to err on the side of preserving life when advance care directives are unclear, requiring a trained advisor to review non-emergent patient choices to limit life-sustaining treatment, training of clinicians in conducting such conversations, and structured discussion formats that first address values and goals rather than particular life-sustaining procedures. Key targets for research include: how to improve completion rates for person wanting advance care directives, especially among minorities; more effective and standardized approaches to advance care planning discussions, including how best to present prognostic information to patients; methods for training clinicians and others to assist patients in this process; and systems for assuring that directives are available and up-to-date.     

Effects of advance care education in cardiovascular rehabilitation programs: a prospective randomized study.

PURPOSE: To determine the effect of advance care education provided to patients enrolled in cardiovascular rehabilitation (CVR) programs and assess patients' acceptance of the educational program. METHODS: In a multicenter, prospective, randomized study, the authors administered two questionnaires 6 months apart to 284 patients enrolled in 14 CVR programs in 11 states. An educational group (99 subjects) participated in educational programs related to advance care planning and received advance directive forms after completing the first questionnaires; 185 subjects served as controls. Primary outcomes were completion of patient-physician discussions of end-of-life issues and patient confidence that their end-of-life wishes were understood by their physicians. Secondary outcomes were completion of formal advance directives and patient acceptance of the educational program. RESULTS: Both the educational and control groups demonstrated a larger proportion of patients at the end of the study, compared with the amount at the beginning of the study, who had completed living wills, durable powers of attorney for healthcare, and discussions with their physicians about advance directives and life support care. These outcomes were not observed more commonly after the educational intervention. Neither groups gained confidence, however, that their physicians understood their end-of-life wishes. Only 8.6% of patients had a negative response to the educational program. CONCLUSIONS: Advance care education is well received by patients enrolled in CVR programs. Enrollment in CVR promotes advance care planning to a small but measurable degree CVR rehabilitation programs appear to be acceptable sites for advance care planning but further research is needed to develop effective educational interventions.     

Guidelines for animal-assisted interventions in health care facilities

Many hospitals and long-term care facilities in North America currently permit animals to visit with their patients; however, the development of relevant infection control and prevention policies has lagged, due in large part to the lack of scientific evidence regarding risks of patient infection associated with animal interaction. This report provides standard guidelines for animal-assisted interventions in health care facilities, taking into account the available evidence.     

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.     

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.     

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.     

Advance care planning in COPD: care versus "code status"

Chronic obstructive pulmonary disease (COPD) in advanced stages runs an unpredictable downward course with increasingly frequent, ultimately fatal exacerbations. Worldwide financial and human costs are huge. Responsibility for initiating advance care planning in COPD has usually fallen to the physicians. The tendency has been to avoid this aspect of care, which can result in inadequate, rushed, reactive, crisis decision-making in the form of a "code status" discussion. In this article, I review the relevant literature and report findings from a qualitative study designed within my doctoral program to explore the question, "What is required for meaningful and effective advance care planning in the context of advanced COPD?" I describe the "collaborative care" approach to advance care planning I used with eight patients and carers living with advanced COPD. Along with a skilled clinician facilitator, user-friendly education elements, and attention to readiness, unique aspects of the approach included a focus on caring, engaging hope, facilitator reflective praxis, and contextual sensitivity. This approach has significant potential for enhancing decision making and goal setting, efficiency of resource utilization, and satisfaction with outcomes. Done well, it may reclaim the care element in advance care planning as it addresses barriers cited by physicians and patients/families.     

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.     

The Australian experience of advance directives and possible future directions

This paper analyses the role that advance directives can play in the formation of advanced care planning. Following on from a review of the legal history of advance directives in Australia, including the common law and statutory regimes, it is argued that schemes for advance directives have not yet proven to be successful. It is proposed that what is needed is a more integrated approach, whereby advance directives are but one mechanism used in a wider concept of advanced care planning. This integrated approach should employ a variety of mechanisms including proxy decision‐making, structured concepts of best interests and clearly defined dispute resolution processes.     

Director perceptions of end-of-life care at geriatric health services facilities in Japan

Geriatric health services facilities (GHSF) are expected to assume a greater role in caring for the dying elderly in the future. However, very little research has dealt with the topic. The aim of this nationwide study is to clarify current end-of-life care policies and practices of GHSF. The subjects were 2876 managing directors of GHSF. Data was collected through mailed questionnaires in 2003. The content of the questionnaires included: (i) general characteristics; (ii) end-of-life care policies; (iii) available medical treatments; and (iv) staff education. To evaluate the factors associated with end-of-life care policies at GHSF, we divided the facilities into two groups, according to whether their policy toward end-of-life care was progressive or regressive. The response rate was 40.3%. The results indicated that a total of 513 GHSF implemented progressive policies for end-of-life care. The factors associated with a progressive policy for end-of-life care were: (i) availability of medical intervention within and outside of the facilities; (ii) staff education; and (iii) discussion about end-of-life care policy with residents and family. Duration of stay also was positively associated with a progressive policy. Our study highlights the need for a national consensus on reforming the end-of-life care system of long-term care facilities.     

Cardiopulmonary resuscitation in long-term care facilities: a survey of do-not-resuscitate orders in nursing homes

Growing public debate regarding no cardiopulmonary resuscitation (no-CPR) policies in acute care hospitals, together with recent changes in the patient population of long-term care facilities, has led nursing homes to examine their need for resuscitation policies. To determine current cardiopulmonary resuscitation policies and procedures in nursing homes, medical directors and directors of nursing service in long-term care facilities in Portland, Oregon, were surveyed. Seventy-five percent responded; of these, only 41% reported having a resuscitation policy. Of those with no policy, 70% thought one was needed. Most nursing homes reported that resuscitation was infrequently discussed with patients and families. When a no-CPR determination was made, it was usually documented in the patient's chart. Training in basic life support was required for registered nurses in two thirds of the facilities. Few homes had equipment necessary for advanced life support. It is recommended that: a) nursing homes develop cardiopulmonary resuscitation policies; b) resuscitation orders be made part of the medical record; and c) nursing home personnel increase their ability to perform basic life support.     

Factors affecting choice of community residential care setting

To investigate factors associated with residents' choice of type of Medicaid-funded community residential care setting in western Washington State. METHOD: Prospective cohort design including residents new to any of three setting types (264 residents entering 170 different facilities), using data from state and Medicaid databases and in-person interviews. The authors used analysis of variance and multinomial logistic regression to examine bivariate associations and estimate effects of resident and facility characteristics on choice of facility type at baseline. RESULTS: Several resident characteristics appear to be associated with choice of community residential care setting, including age, marital status, education, functional status, and reported memory and behavior problems. Facility policies differ significantly among types of facilities and also appear to be associated with choice of setting. DISCUSSION: Selection processes operate in choice of community residential care setting, with residents choosing facility type based on the fit of their needs with facility characteristics.     

Non-medical palliative care and education to improve end-of-life care at geriatric health services facilities: A nationwide questionnaire survey of chief nurses

Background:   Geriatric health services facilities (GHSF) are expected to assume a growing role in caring for the dying elderly. However, research in this area has so far been scant. The purpose of the present study is to reveal the status of non-medical palliative care and staff education aiming at improving and enhancing end-of-life care at GHSF.
Methods:   The subjects were 2876 chief nurses of GHSF. Data was collected through a mailed questionnaire in 2003. The questionnaire covered the following: (i) staff perception of end-of-life care policies; (ii) staff education; and (iii) available non-medical care. To evaluate the factors correlated with end-of-life care policies at GHSF, we divided the facilities into two groups.
Results:   We analyzed the answers collected from 313 facilities with a progressive policy toward end-of-life care (PP group) and 818 with a regressive policy toward it (RP group). It was found that staff training was conducted more frequently among PP facilities. Generally, nurses in the PP facilities were more confident that they could provide comprehensive on-site end-of-life care and grieving support, but did not feel so sure about their ability to provide better end-of-life environments for dying residents and family by organizing outside support from voluntary and/or governmental organizations and religious organization for healing and to pursue appropriately a written follow-up communication with the bereaved family.
Conclusions:   Our results suggest that providing GHSF staff with education about end-of-life issues or setting up collaboration with the outside is an important factor to enhance overall end-of-life care at these facilities.     

Advance care planning in residential care

Abstract Background : To provide optimal care for our ageing population, some form of advance care planning (ACP) is essential. Overseas data suggest that the process of ACP and the use of advance care directives (ACD) is suboptimal in residential care institutions. By comparison there are few Australian data.
Aim : To study the process of ACP and the prevalence of ACD in residential care.
Methods : Cross-sectional study using a questionnaire in the Hunter area, NSW, Australia.
Results : Very low levels of formal advance directives were found (available for only 0.2%). Only 1.1% of residents had no-CPR' orders documented in the medical record, while 5.6% had a formal guardian and 2.8% had an enduring guardian.
Informal processes of advance planning were much more prevalent. Sixty-five per cent had a `person responsible' recorded to make decisions for them while in 13% of cases, there was `staff consensus' as to the optimal care for the patient. However, in 10.6% there was no clear process for medical decision making identified.
Conclusions : Advanced directives are infrequently used in residential care. Further qualitative and quantitative studies are warranted to explore current processes of decision making.