Beyond Advance Directives: Importance of Communication Skills at the End of Life

The Center for Palliative Care and the Department of Medicine, Veterans Affairs Medical Center and Duke University, Durham, NC, USA.
JAMA The Journal of the American Medical Association (Impact Factor: 35.29). 08/2005; 294(3):359-65. DOI: 10.1001/jama.294.3.359
Source: PubMed


Patients and their families struggle with myriad choices concerning medical treatments that frequently precede death. Advance directives have been proposed as a tool to facilitate end-of-life decision making, yet frequently fail to achieve this goal. In the context of the case of a man with metastatic cancer for whom an advance directive was unable to prevent a traumatic death, I review the challenges in creating and implementing advance directives, discuss factors that can affect clear decision making; including trust, uncertainty, emotion, hope, and the presence of multiple medical providers; and offer practical suggestions for physicians. Advance care planning remains a useful tool for approaching conversations with patients about the end of life. However, such planning should occur within a framework that emphasizes responding to patient and family emotions and focuses more on goals for care and less on specific treatments.

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    • "Providing physicians with practical guidance for conducting these often difficult and time-intensive discussions might increase the use of ACP in the outpatient setting. Although little guidance regarding the structure and process of an ACP discussion exists, various elements of ACP have been highlighted as important for physicians to engage in with their patients, including explaining the nature and trajectory of heart failure [2] [7] [8] [9], eliciting patient preferences for care [10] [11] [12] [13], and encouraging patients to document their identified treatment preferences [14] [15] [16] [17]. As part of a complete ACP discussion, these elements can help patients understand the implications of their disease, calibrate their expectations within the context of their illness, and articulate their care preferences to their providers. "
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    ABSTRACT: OBJECTIVE: To evaluate the extent to which physicians engage in recommended elements of advance care planning (ACP) communication during outpatient clinic visits with heart failure (HF) patients. METHODS: We conducted a qualitative content analysis of 71 audio-recorded and transcribed outpatient visits with 52 patients ≥65 years recently hospitalized for HF and their physicians (n=44). RESULTS: We identified 25 instances of ACP-related communication over 15 of the 71 visits: in 17 instances, physicians explained the nature of HF but only once was the life-limiting potential of HF mentioned. Physicians discussed goals of care in 6 instances but elicited their patients' preferences in only 2 of those instances. Finally, physicians encouraged documentation of preferences in 2 instances. CONCLUSIONS: Despite recommendations for early ACP with HF patients, physicians rarely engaged in fundamental elements of ACP discussions during outpatient visits. We suggest a stepwise approach to supporting the process of ACP communication in practice. PRACTICE IMPLICATIONS: Given the importance of ACP in helping patients plan for their future care, outpatient clinicians should be helped to incorporate these discussions in the routine care of their HF patients. Using a simple heuristic might help physicians engage in fundamental elements of ACP during busy outpatient visits.
    Full-text · Article · Jan 2013 · Patient Education and Counseling
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    • "Substitute decision-makers are integral to the care of dying patients and these decision-makers make many healthcare decisions for patients [1]. Conflict of healthcare providers with substitute decision-makers is not uncommon [2,3]. "
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    ABSTRACT: Background: Substitute decision-makers are integral to the care of dying patients and make many healthcare decisions for patients. Unfortunately, conflict between physicians and surrogate decision-makers is not uncommon in end-of-life care and this could contribute to a "bad death" experience for the patient and family. We aim to describe Canadian family physicians' experiences of conflict with substitute decision-makers of dying patients to identify factors that may facilitate or hinder the end-of-life decision-making process. This insight will help determine how to best manage these complex situations, ultimately improving the overall care of dying patients. Methods: Grounded Theory methodology was used with semi-structured interviews of family physicians in Edmonton, Canada, who experienced conflict with substitute decision-makers of dying patients. Purposeful sampling included maximum variation and theoretical sampling strategies. Interviews were audio-taped, and transcribed verbatim. Transcripts, field notes and memos were coded using the constant-comparative method to identify key concepts until saturation was achieved and a theoretical framework emerged. Results: Eleven family physicians with a range of 3 to 40 years in clinical practice participated.The family physicians expressed a desire to achieve a "good death" and described their role in positively influencing the experience of death.Finding Common Ground to Achieve a "Good Death" for the Patient emerged as an important process which includes 1) Building Mutual Trust and Rapport through identifying key players and delivering manageable amounts of information, 2) Understanding One Another through active listening and ultimately, and 3) Making Informed, Shared Decisions. Facilitators and barriers to achieving Common Ground were identified. Barriers were linked to conflict. The inability to resolve an overt conflict may lead to an impasse at any point. A process for Resolving an Impasse is described. Conclusions: A novel framework for developing Common Ground to manage conflicts during end-of-life decision-making discussions may assist in achieving a "good death". These results could aid in educating physicians, learners, and the public on how to achieve productive collaborative relationships during end-of-life decision-making for dying patients, and ultimately improve their deaths.
    Full-text · Article · Jan 2013 · BMC Family Practice
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    • "These positive outcomes have not occurred in people lacking decisional competence (The SUPPORT principle investigators, 1995; Caplan et al., 2006). Completing advance directives (which can only be done by people with capacity) does not guarantee care at the end of life (Detering et al., 2010) as they are often vague and can easily be misinterpreted by physicians (Tulsky, 2005). Therefore, it may be preferable to focus on patients' and families' emotional preparedness (Prendergast, 2001). "
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    ABSTRACT: The aim of this study is to examine barriers and facilitators to care home staff delivering improved end-of-life care for people with dementia. Individual qualitative interviews of 58 staff in a 120-bed nursing home where the staff and the residents' religion differed were carried out. Interviews continued until a maximum variation sample was achieved and theoretical saturation was reached. The staff felt warmly towards the residents and felt they could recognise when they were near death. Care staff, nurses and doctors did not see themselves as a team and communicated poorly with relatives about approaching death. The staff used opaque euphemisms and worried about being blamed. They were often unaware of or had concerns about the validity of advance care plans. They knew of the religious rituals around death but frequently misunderstood religious tradition. The staff require education and support about discussing and implementing plans around care at the end of life in dementia and about cultural issues around death to improve practice. This would enable the staff to implement advance care plans, knowing that they will be supported. Education would encompass communicating the complicated, unpredictable path of dementia near the time of death explicitly but sensitively, including recognising that people often do not hear difficult messages and are unable to take on large quantities of information at once. The staff need to know about the resident's religious and cultural ideas as well as ritual practice.
    Full-text · Article · Jun 2012 · International Journal of Geriatric Psychiatry
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