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.     

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.     

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.     

American Geriatrics Society Feeding Tubes in Advanced Dementia Position Statement

When eating difficulties arise, feeding tubes are not recommended for older adults with advanced dementia. Careful hand feeding should be offered because hand feeding has been shown to be as good as tube feeding for the outcomes of death, aspiration pneumonia, functional status, and comfort. Moreover, tube feeding is associated with agitation, greater use of physical and chemical restraints, healthcare use due to tube‐related complications, and development of new pressure ulcers. Efforts to enhance oral feeding by altering the environment and creating patient‐centered approaches to feeding should be part of usual care for older adults with advanced dementia. Tube feeding is a medical therapy that an individual's surrogate decision‐maker can decline or accept in accordance with advance directives, previously stated wishes, or what it is thought the individual would want. It is the responsibility of all members of the healthcare team caring for residents in long‐term care settings to understand any previously expressed wishes of the individuals (through review of advance directives and with surrogate caregivers) regarding tube feeding and to incorporate these wishes into the care plan. Institutions such as hospitals, nursing homes, and other care settings should promote choice, endorse shared and informed decision‐making, and honor preferences regarding tube feeding. They should not impose obligations or exert pressure on individuals or providers to institute tube feeding.     

The Patient Self-Determination Act and the future of advance directives

Living wills and other advance directives currently play a limited role in medical decision making. A new federal law, the Patient Self-Determination Act, will require health care providers in hospitals, nursing homes, and other facilities to inquire about the presence of advance directives, to record patient preferences in the medical record, and to develop institutional policies regarding the implementation of these directives. Unfortunately, the law does little to promote discussion or preparation of advance directives before hospitalization. Additional efforts to promote the use of advance directives can take place in the outpatient medical care system, in attorneys' offices, or through health insurers. Because most people have not yet prepared an advance directive, we suggest that institutions develop treatment policies for situations in which the wishes of patients who lack decisional capacity are not known. These policies should be designed to promote the patients' best interests, as defined by the consensus of the institutions' staff and members of the surrounding community.     

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.     

Health-care decision making, Part II. Choices for incapacitated patients.

The traditional, informal approach to making medical decisions for incapacitated patients is often inappropriate today. Guidelines are needed in two major areas: assessing incapacity and seeking surrogate decision makers. Judicially declared incompetency does not necessarily imply incapacity to make medical choices. Proposed standards for determining incapacity require a multistep evaluation of the patient's abilities to understand, reason, and communicate. When decisions must be made for an incapacitated patient, priority is given to the patient's previously stated preferences. An advance directive--living will or durable power of attorney--simplifies the process. If no advance directive was prepared, a surrogate decision maker may be designated according to applicable state statutes. Standards are still evolving for protecting the autonomy and best interests of vulnerable, incapacitated patients.     

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.     

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.     

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 Care Planning in Cognitively Impaired Older Adults

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

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.     

Medical management decisions in nursing home patients. Principles and policy recommendations

The ethical principles of medical decision making are inherently the same for nursing home residents, who represent an increasingly large segment of the population, as they are for other adult patients. In practice, however, a number of considerations require specialized application of these principles in nursing homes. Notably, a large proportion of nursing home patients are at high risk for morbid and mortal events yet are incapable of expressing medical management preferences due to dementia and confusion. Policies and procedures regarding medical decisions for nursing home patients are needed. We present and discuss a policy for patient care in nursing homes based on recommendations of a national biomedical ethics committee. This policy, which may be adapted for use in specific institutions, explicitly discusses the principles of care and their application in nursing homes. It also encourages prospective decision making and provides advance care directives for patients making and provides advance care directives for patients and their decision-making surrogates to do so.     

Effect of a Disease‐Specific Planning Intervention on Surrogate Understanding of Patient Goals for Future Medical Treatment

OBJECTIVES: To determine whether a disease‐specific planning process can improve surrogate understanding of goals of patients with life‐limiting illnesses for future medical treatments. DESIGN: A multisite randomized controlled trial conducted between January 1, 2004 and July 31, 2007. SETTING: Six outpatient clinics of large community or university health systems in three Wisconsin cities. PARTICIPANTS: Competent, English‐speaking adults aged 18 and older with chronic congestive heart failure or chronic renal disease and their surrogate decision‐makers. INTERVENTION: Trained health professionals conducted a structured, patient‐centered interview intended to promote informed decision‐making and to result in the completion of a document clarifying the goals of the patient with regard to four disease‐specific health outcome situations and the degree of decision‐making latitude granted to the surrogate. MEASUREMENTS: Surrogate understanding of patient goals for care with regard to four expected, disease‐specific outcomes situations and of the degree of surrogate latitude in decision‐making. RESULTS: Three hundred thirteen patient–surrogate pairs completed the study. As measured according to kappa scores and in all four situations and in the degree of latitude, intervention group surrogates demonstrated a significantly higher degree of understanding of patient goals than control group surrogates. Intervention group kappa scores ranged from 0.61 to 0.78, whereas control group kappa scores ranged from 0.07 to 0.28. CONCLUSION: Surrogates in the intervention group had a significantly better understanding of patient goals and preferences than surrogates in the control group. This finding is the first step toward ensuring that patient goals for care are known and honored.     

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

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

Accuracy of primary care and hospital-based physicians' predictions of elderly outpatients' treatment preferences with and without advance directives

BACKGROUND: Past research has documented that primary care physicians and family members are often inaccurate when making substituted judgments for patients without advance directives (ADs). This study compared the accuracy of substituted judgments made by primary care physicians, hospital-based physicians, and family surrogates on behalf of elderly outpatients and examined the effectiveness of ADs in improving the accuracy of these judgments. PARTICIPANTS AND METHODS: Participants were 24 primary care physicians of 82 elderly outpatients, 17 emergency and critical care physicians who had no prior experience with the patients, and a baseline comparison group of family surrogates. The primary outcome was accuracy of physicians' predictions of patients' preferences for 4 life-sustaining treatments in 9 hypothetical illness scenarios. Physicians made substituted judgments after being provided with no patient AD, patient's value-based AD, or patient's scenario-based AD. RESULTS: Family surrogates' judgments were more accurate than physicians'. Hospital-based physicians making predictions without ADs had the lowest accuracy. Primary care physicians' accuracy was not improved by either AD. Accuracy and confidence in predictions of hospital-based physicians was significantly improved for some scenarios using a scenario-based AD. CONCLUSIONS: Although ADs do not improve the accuracy of substituted judgments for primary care physicians or family surrogates, they increase the accuracy of hospital-based physicians. Primary care physicians are withdrawing from hospital-based care in growing numbers, and emergency medicine and critical care specialists most often are involved in decisions about whether to begin life-sustaining treatments. If ADs can help these physicians better understand patients' preferences, patient autonomy more likely will be preserved when patients become incapacitated.