Redefining the “Planning” in Advance Care Planning: Preparing for End-of-Life Decision Making
Publication: Annals of Internal Medicine
Volume 153, Number 4
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Abstract
The traditional objective of advance care planning has been to have patients make treatment decisions in advance so that clinicians can attempt to provide care consistent with their goals. The authors contend that the objective for advance care planning ought to be the preparation of patients and surrogates to participate with clinicians in making the best possible in-the-moment medical decisions. They provide practical steps for clinicians to help patients and surrogate decision makers achieve this objective in the outpatient setting. Preparation for in-the-moment decision making shifts the focus from having patients make premature decisions based on incomplete information to preparing them and their surrogates for the types of decisions and conflicts they may encounter when they do have to make in-the-moment decisions. Advance directives, although important, are just one piece of information to be used at the time of decision making.
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Published In
Annals of Internal Medicine
Volume 153 • Number 4 • 17 August 2010
Pages: 256 - 261
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Published online: 17 August 2010
Published in issue: 17 August 2010
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Redefining the “Planning” in Advance Care Planning: Preparing for End-of-Life Decision Making. Ann Intern Med.2010;153:256-261. [Epub 17 August 2010]. doi:10.7326/0003-4819-153-4-201008170-00008
Redefining the “Planning” in Advance Care Planning: Preparing for End-of-Life Decision Making. Ann Intern Med.2010;153:256-261. [Epub 17 August 2010]. doi:10.7326/0003-4819-153-4-201008170-00008
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Care Planning and Goals of Care
Drs. Sudore and Fried rightfully note the need to "prepare patients and surrogates to participate with clinicians in making the best possible in-the-moment decisions." They also emphasize a focus on goals of care and the often non-static nature of patients' preferences. In this process of decision making, physicians have several roles. One critical role is to clarify reasonably achievable goals of care. These goals are also non- static and evolve in tandem with the natural history of the patient's disease. Moreover, the degree to which particular goals are achievable, and the cost (in terms of burden to the patient) to achieve them, also change over time. Physicians must embrace the dynamic features of disease, preferences, and achievable goals of care, in providing sound counsel to patients and family members and in collaborating with them in generating optimal plans of care.
Conflict of Interest:
None declared
Re:Care Planning and Goals of Care
We commend Drs. Sudore and Fried for proposing the idea of "preparing" patients for end-of-life decision making (1). In particular, we liked their ideas to use a motivational model for these discussions, explore changes in values and preferences over time, and establish leeway in surrogate decision making. However, we believe more consideration of the psychosocial context of these discussions would benefit clinicians and patients.
An awareness of a patient's psychosocial situation is necessary for productive advance care planning discussions. Patients adapt and adjust to illness in different ways and on different timelines, and this influences their perceptions, hopes, fears, and plans for the future. Importantly, the psychosocial context also influences patients' participation in advance care planning discussions.
We believe an inappropriate dichotomy is set up when clinicians must decide "whether and how patients are either adapting to their illness or reaching a point where the burdens involved in fighting their illness become too great" (p. 257) (1). The border between the perceived benefit of fighting the spread of the disease and the acceptance of the patient's impending terminal decline is blurry and porous Patients often need help adjusting to the limitations and changes that come with illness (2) and psychological readiness for advance care planning may wax and wane (3). A patient's readiness or request to die in advanced illness may have a variety of meanings besides the straightforward one that the burdens of illness exceed the benefits of living (4).
When clinicians discover patients are troubled by or not ready to discuss end of life decision making, besides considering a motivation model, clinicians should explore how patients are coping with illness by asking questions such as, "what's it been like to have [illness]" or "how have you (and your family) been dealing with having [illness]." Further exploration of the patient's response may guide clinicians in how to provide further support. Explicitly addressing fears and concerns about the future may be useful. By exploring these issues and attending to the psychosocial situation, clinicians may reduce patients' distress while preparing them for end of life decision making.
References
(1) Sudore RL, Fried TR. Redefining the "planning" in advance care planning: preparing for end-of-life decision making. Ann Intern Med 2010; 153(4):256-261.
(2) Bekelman DB, Nowels CT, Retrum JH, Allen L, Shakar S, Heyborne T et al. Giving voice to patients' and family caregivers' needs in chronic heart failure: implications for palliative care. Journal of General Internal Medicine, under review.
(3) Prigerson HG, Wright AA, Block SD, Maciejewski PK. Tailoring end -of-life discussions to advanced cancer patients' state of grief . Journal of Clinical Oncology 27[15].
(4) Muskin PR. The request to die: role for a psychodynamic perspective on physician-assisted suicide. JAMA 1998; 279(4):323-328.
Conflict of Interest:
None declared