Advance Care Planning: Should we be Discussing it with our Patients?

Introduction : Advance care planning (ACP) is a term used for a variety of legal and informal options available to ensure that our wishes will be respected in the future, should we lose competence in decision making. Objectives : This research aimed to establish whether older people being treated at a regional rehabilitation service were aware of ACP options and whether discussion with a physician supplemented with written information increased their uptake of ACP options. Method : Forty people aged over 60 years and participating in inpatient or outpatient rehabilitation programs in Lismore, New South Wales (NSW) were interviewed and provided with verbal and written information about ACP options. They were then interviewed by telephone one month later to determine whether they had taken further action concerning ACP. Results : Overall 30 (78%) demonstrated a good level of knowledge of enduring power of attorney at baseline interview. Only 1 (2.5%) knew about enduring guardianship and 1 (2.5%) knew about advance directives. All those interviewed felt that ACP was an important issue, grading its' importance as 6 or greater on a 10 point scale. Thirty four (85%) patients were successfully followed up one month later. Of these 27 (77%) had taken further action in relation to their ACP‐ 13 (33%) had had discussions with family and important others and 14 (35%) had completed further documentation (10 enduring power of attorney, 3 enduring guardianship and 1 an advance directive). Conclusions : ACP is considered an important issue by older people undergoing rehabilitation. A short discussion with a physician along with written information increases the uptake of ACP. However the options of advance directives and enduring guardian are not readily taken up, with most people in this study preferring informal discussions with family and friends when considering advance care planning.     

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.     

Giving up on the objective of providing goal-concordant care: Advance care planning for improving caregiver outcomes

The merits and effectiveness of advance care planning (ACP) continue to be debated a full 30 years after the passage of the Patient Self-Determination Act. This act gave patients the right to create advance directives, with the objective of ensuring that the care they received at the end of life was consistent with their preferences and goals. ACP has definitively moved beyond the completion of advance directives to encompass the identification of a healthcare agent and the facilitation of communication among patients, surrogates, and clinicians. Nonetheless, the provision of goal-concordant care remains a primary objective for ACP. This article argues that this cannot and should not be the objective for ACP. Patients' goals change, and the provision of goal-concordant care is sometimes incompatible with other critical determinants of appropriate care. Instead, ACP should focus on the objective of improving caregiver outcomes. Surrogate decision-making by caregivers is associated with an elevated risk of post-traumatic stress disorder and other adverse outcomes, and these outcomes can be improved with ACP. ACP focused on caregivers involves helping caregivers to understand how they can help to shape the final chapter in a patient's life story, preventing caregivers from making promises they cannot keep, and preparing them to use all relevant information at the time decisions need to be made.     

Advance care planning in Australia: overdue for improvement

Abstract
As the population of Australia ages, the issue of advance care planning (ACP) to improve medical management towards life's end becomes more important. However, ACP appears poorly developed in Australia. This article discusses ACP and advance directives in the context of the Australian experience and compares this with the experience overseas. It highlights the need for an improvement in ACP and recommends specific areas for discussion and research. (Intern Med J 2002; 32: 475−480)     

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

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

Advance Directives for Euthanasia in Dementia: How Do They Affect Resident Care in Dutch Nursing Homes? Experiences of Physicians and Relatives

OBJECTIVES: To gain insight into how advance directives for euthanasia affect resident care in Dutch nursing homes. DESIGN: Survey of elderly care physicians and additional qualitative interviews with a selection of elderly care physicians and relatives of people with dementia who had an advance directive for euthanasia. SETTING: Dutch nursing home practice. PARTICIPANTS: Four hundred thirty‐four elderly care physicians completed the general part of the questionnaire; 110 physicians provided case histories. Interviews were conducted with 11 physicians and eight relatives. MEASUREMENTS: The questionnaire contained general questions about the incidence of advance directives for euthanasia in people with dementia. A second part involved questions about the most recent case of a person with dementia and an advance directive for euthanasia who had died. The interviews with elderly care physicians and relatives focused on further exploration of the decision‐making process regarding adherence to the advance directive for euthanasia. RESULTS: Despite law‐based possibilities, advance directives for euthanasia of people with dementia were rarely adhered to, although they seem to have a supportive role in setting limitations on life‐sustaining treatments. Elderly care physicians and relatives were found to be reluctant to adhere to advance directives for euthanasia. Not being able to engage in meaningful communication played a crucial role in this reluctance. CONCLUSION: Advance directives for euthanasia are never adhered to in the Netherlands in the case of people with advanced dementia, and their role in advance care planning and end‐of‐life care of people with advanced dementia is limited. Communication with the patient is essential for elderly care physicians to consider adherence to an advance directive for euthanasia of a person with dementia.     

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.     

Honoring Choices Minnesota: Preliminary Data from a Community‐Wide Advance Care Planning Model

Advance care planning (ACP) increases the likelihood that individuals who are dying receive the care that they prefer. It also reduces depression and anxiety in family members and increases family satisfaction with the process of care. Honoring Choices Minnesota is an ACP program based on the Respecting Choices model of La Crosse, Wisconsin. The objective of this report is to describe the process, which began in 2008, of implementing Honoring Choices Minnesota in a large, diverse metropolitan area. All eight large healthcare systems in the metropolitan area agreed to participate in the project, and as of April 30, 2013, the proportion of hospitalized individuals 65 and older with advance care directives in the electronic medical record was 12.1% to 65.6%. The proportion of outpatients aged 65 and older was 11.6% to 31.7%. Organizations that had sponsored recruitment initiatives had the highest proportions of records containing healthcare directives. It was concluded that it is possible to reduce redundancy by recruiting all healthcare systems in a metropolitan area to endorse the same ACP model, although significantly increasing the proportion of individuals with a healthcare directive in their medical record requires a campaign with recruitment of organizations and individuals.     

Acculturation of attitudes toward end-of-life care: a cross-cultural survey of Japanese Americans and Japanese

OBJECTIVE: Cross-cultural ethical conflicts are common. However, little is known about how and to what extent acculturation changes attitudes toward end-of-life care and advance care planning. We compared attitudes toward end-of-life care among Japanese Americans and Japanese in Japan. DESIGN: Self-administered questionnaire in English and Japanese. SETTING AND PARTICIPANTS: Community-based samples of Japanese Americans in Los Angeles and Japanese in Nagoya, Japan: 539 English-speaking Japanese Americans (EJA), 340 Japanese-speaking Japanese Americans (JJA), and 304 Japanese living in Japan (JJ). MEASUREMENTS AND MAIN RESULTS: Few subjects (6% to 11%) had discussed end-of-life issues with physicians, while many (EJA, 40%; JJA, 55%; JJ, 54%) desired to do so. Most preferred group surrogate decision making (EJA, 75%; JJA, 57%; JJ, 69%). After adjustment for demographics and health status, desire for informing the patient of a terminal prognosis using words increased significantly with acculturation (EJA, odds ratio [OR] 8.85; 95% confidence interval, [95% CI] 5.4 to 14.3; JJA, OR 2.8; 95% CI 1.8 to 4.4; JJ, OR 1.0). EJA had more-positive attitudes toward forgoing care, advance care planning, and autonomous decision making. CONCLUSION: Preference for disclosure, willingness to forgo care, and views of advance care planning shift toward western values as Japanese Americans acculturate. However, the desire for group decision making is preserved. Recognition of the variability and acculturation gradient of end-of-life attitudes among Japanese Americans may facilitate decision making and minimize conflicts. Group decision making should be an option for Japanese Americans.     

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.     

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.     

Prevalence and correlates of advance care planning among Australian hospital inpatients

The prevalence and factors associated with advance care planning (ACP) documents for Australian public hospital inpatients were determined through cross-sectional study of 123 Victorian hospitals between July 2016 and December 2018. Of the 611 786 included patients, 2.9% had an ACP document. Odds increased significantly in those comorbid, unpartnered, regional and >5 admissions, which supports future ACP conversations and document creation.     

From advance directives to advance care planning: current legal status, ethical rationales and a new research agenda

This paper uses a case example to review the current legal status of advance directives, as well as their ethical rationale. We draw attention to ongoing efforts to institutionalize advance directives, and to some of the tractable and intractable reasons why advance directives are ineffective. We then introduce the concept of advance care planning, and argue that we should not assume that advance care directives have a place in this process. We conclude by offering three reasons why this assumption may operate, and by suggesting that contingency and uncertainty may sometimes overwhelm all rational approaches to medical care.     

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.     

Promoting advance directives among elderly primary care patients

OBJECTIVE: To determine efficient ways of promoting advance directives among heterogeneous populations of elderly ambulatory patients. DESIGN: One-year quasi-experimental trial. SETTING: Five suburban and urban health centers in one region of a large managed care organization. One additional suburban center served as a control site. PARTICIPANTS: Individuals ages 65 and older (N= 2,120) who were continuously enrolled and had a health maintenance visit with their primary care provider during the study year. INTERVENTION: Physician education (oral and written) and physician and patient prompts to discuss advance directives. MAIN RESULTS: Sixty-six (7.8%) of patients at the intervention centers completed new advance directives, versus 9 of 1,277 (<1%) at the comparison center (P <.001). Patients 75 and older were twice as likely (odds ratio [OR], 2.0; 95% confidence limits [CL], 1.2 to 3.3) as those 65 to 74 to file a new advance directive, and the odds were twice as great (OR, 2.6; 95% CL, 1.4 to 4.6) at centers serving communities with median household income over the state median. Gender, recent hospitalization, emergency room visits, and number of chronic conditions were not related to making new directives nor was predominant ethnicity of the center community (African-American versus white). Adjusted for these factors, the intervention resulted in a 20-fold increase (95% CL, 10.4 to 47.8) in the odds of creating a new advance directive. Doctors reported barriers of time and unwillingness to press discussions with patients. CONCLUSIONS: A replicable intervention largely targeting doctors achieved a modest increase in advance directives among elderly ambulatory patients. Future interventions may need to target lower-income patients, "younger" elderly, and more specifically address doctors' attitudes and comfort discussing advance directives.