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Should research be part of advance care planning?

Advance care planning is a process to help people to formulate and communicate their preferences regarding future care during critical illness. Reviews of the advance care planning process in its current form have been disappointing. Improvements in care at the end of life and palliative care are necessary for the provision of modern medical care. Medical research has led to many improvements at the physiological and technological levels. It is only by applying the same rigour of scientific study and research ethics that improvements in the advance care planning process can be made.

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Building successful coalitions for promoting advance care planning.

Advance care planning (ACP) has had few successful initiatives. This qualitative study explores the challenges and successes of an advance care planning coalition in Wisconsin called Life Planning 2000 using key informant interviews (n = 24) and grounded theory. Major themes included: commitment (the need for leadership, recruitment of key members, and funding); cohesiveness (disparate groups collaborating toward a common purpose), and outcomes (shift in paradigm from signing documents to process of advanced care planning, new-found collaborative relationships, and educational tool development). Coalitions need to define short-, intermediate-, and long-term goals that result in measurable outcomes and an evaluation process. Resources must be commensurate with goals. Strong leadership, paid staff adequate funding, and the collaboration of diverse groups working toward common goals are the basic requirements of a successful coalition.

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Advance care planning.

Advance care planning is the process of planning for future medical care, particularly for the event when the patient is unable to make his or her own decisions. It should be a routine part of standard medical care and, when possible, conducted with the proxy decision maker present. It is helpful to think of the process as a stepwise approach. The steps include the appropriate introduction of the topic, structured discussions covering potential scenarios, documentation of preferences, periodic review and update of the directives, and application of the wishes when needed. The steps can be integrated flexibly into routine clinical encounters by the physician and other members of the health care team. The process fosters personal resolution for the patient, preparedness for the proxy, and effective teamwork for the professionals. The process also has pitfalls of which to be aware. Arch Fam Med. 2000;9:1181-1187

Advance Directives↗

Bioethics for clinicians: 6. Advance care planning.

Advance rate planning is a process whereby a patient, in consultation with health care providers, family members and important others, makes decisions about his or her future health care. Grounded in the ethical principle of autonomy and the legal doctrine of consent, advance care planning helps to ensure that the norm of consent is respected should the patient become incapable of participating in treatment decisions. Physicians can play an important role by informing patients about advance care planning directing them to appropriate resources, counselling them as they engage in advance care planning and helping them to tailor advance directives to their prognosis.

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Advance care planning.

Advance directives allow patients to have some control over decisions even when they are no longer able to make decisions themselves. All states authorize written advance directives, such as the appointment of a health care proxy, but commonly impose procedural requirements. Some states have restricted the use of oral advance directives, although they are frequently used in everyday practice. Advance directives are limited because they are infrequently used, may not be informed, and may conflict with the patient's current best interests. Moreover, surrogates often cannot state patients' preferences accurately. Furthermore, discussions among physicians and patients about advance directives are flawed. Physicians can improve discussions about advance directives by asking the patient who should serve as proxy and by ascertaining the patient's values and general preferences before discussing specific clinical situations.

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Using the stages of change model to improve communication about advance care planning.

TOPIC: Advance care planning (ACP) is a term intended to describe the dynamic process of discussing wishes for future medical care. PURPOSE: To demonstrate how a behavior change model can be used to enhance ACP. SOURCES: Authors' personal experience, workshops, literature review. CONCLUSIONS: Incorporating behavioral change theory helps develop workable interventions and provides strategies for nurses to approach patients appropriately about planning for future medical care.

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The effect of advance care planning on completion of advance directives and patient satisfaction in people with HIV/AIDS.

The effects of advance care planning are poorly understood. The purpose of this study was to evaluate the effect of an advance care planning intervention on the completion of advance directives (ADs) and patient satisfaction. A volunteer sample of persons with HIV/AIDS received advance directive documents, watched an educational video and received individual counselling on completing an advance directive during three face-to-face interviews over approximately six months. The advance care planning intervention was associated with an increase in advance directive completion rates from 16.4% to 40.7% (p = 0.001), but 23.1% of advance directives reported as completed were legally invalid. There was a trend towards decreased overall patient satisfaction with health care (p = 0.07). Advance are planning increases the rate of AD completion but many 'completed' advance directives are legally invalid. Advance care planning did not improve patient satisfaction with health care.

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Advance care planning in long-term care facilities.

Residents of long-term care facilities are at risk of serious medical illnesses and being unable to express choices when difficult treatment decisions must be made. Advance care planning (ACP) allows residents to consider, make, and communicate their preferences for how medical decisions should be made if they are unable to participate in the decision-making process. This article reviews the three steps in ACP: consideration of options and expression of values, communication of decisions, and documentation of the choices. The article defines and describes the particular value of ACP in long-term care facilities, reviews the literature on successful ACP programs in long-term care, and concludes with practical suggestions on how to develop and implement ACP programs.

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Improving care at the end of life: how advance care planning can help.

Based on a comparison of studies of patient desires regarding end-of-life care and of the actual course of end-of-life care, this article concludes that there is a significant discrepancy in the United States between the kind of care most people want and the kind of care they in fact receive. The article offers a case example to illustrate one type of dilemma commonly encountered in end-of-life care. It then introduces and describes the practice of advance care planning. Use of advance care planning, it is argued, can prevent moral dilemmas and improve end-of-life care.

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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.

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Objectives for advance care planning.

Identifying objectives for advance care planning (ACP) is an important step toward improving care at the end of life. Previous studies of ACP have used many different measures of success. However, there has been no consensus on what should be the objectives for ACP. Lack of attention to specific objectives for ACP may lead to ineffective communication and research. The first step to improving outcomes in ACP is to acknowledge the diversity of objectives that ACP may achieve. Health care providers, patients, and surrogates should identify and agree on common objectives for particular conversations. Various methods, conversations, and forms may be used to achieve these objectives over time. Clarifying objectives from various perspectives is an important step toward achieving the level of understanding necessary to make these difficult decisions. It is time for physicians to reconsider the way in which they think about and discuss ACP with patients. If we are to improve care at the end of life, future patient care, research, and education about ACP should proceed with specific objectives in mind.

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Autonomy, liberalism and advance care planning.

The justification for advance directives is grounded in the notion that they extend patient autonomy into future states of incompetency through patient participation in decision making about end-of-life care. Four objections challenge the necessity and sufficiency of individual autonomy, perceived to be a defining feature of liberal philosophical theory, as a basis of advance care planning. These objections are that the liberal concept of autonomy (i) implies a misconception of the individual self, (ii) entails the denial of values of social justice, (iii) does not account for justifiable acts of paternalism, and (iv) does not account for the importance of personal relationships in the advance care planning process. The last objection is especially pertinent in light of recent empirical research highlighting the importance of personal relationships in advance care planning. This article examines these four objections to autonomy, and the liberal theoretical framework with which it is associated, in order to re-evaluate the philosophical basis of advance care planning. We argue that liberal autonomy (i) is not a misconceived concept as critics assume, (ii) does not entail the denial of values of social justice, (iii) can account for justifiable acts of paternalism, though it (iv) is not the best account of the value of personal relationships that arise in advance care planning. In conclusion, we suggest that liberalism is a necessary component of a theoretical framework for advance care planning but that it needs to be supplemented with theories that focus explicitly on the significance of personal relationships.

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Patients with amyotrophic lateral sclerosis receiving long-term mechanical ventilation. Advance care planning and outcomes.

OBJECTIVE: To examine advance care planning and outcomes of patients with amyotrophic lateral sclerosis (ALS) receiving long-term mechanical ventilation (LTMV). DESIGN: Case series. SETTING: Population-based study in homes and chronic care facilities in four states, and Home Ventilator Program of California Kaiser Permanente. PATIENTS: Seventy-five ALS patients receiving LTMV were identified; 11 died prior to interview, and 6 were totally locked in; 50 of 58 (86%) who were able to communicate consented to structured interviews, of whom 36 lived at home and 14 in an institution. RESULTS: Thirty-eight patients (76%) had completed advance directives, and 96% wanted them. Thirty-eight patients wished to stop LTMV in certain circumstances, of whom 30 had completed advance directives. Those who had completed advance directives were more likely to have communicated their preference, to stop LTMV to family and physician than those who had not (76 vs 29%; p = 0.05). Patients living at home rated their quality of life on a 10-point scale better than those in an institution (7.2 vs 5.6; p = 0.0052), and their yearly expenses were less ($136,560 vs $366,852; p = 0.0018). CONCLUSIONS: Most ALS patients receiving LTMV would want to stop it under certain circumstances, and the process of advance care planning enhances communication of patient preferences to family and physicians. Home-based LTMV is less costly and associated with greater patient satisfaction.

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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.

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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.

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