Abstract
Since the concept of the living wills emerged nearly 50 years ago, there have been practical challenges in translating the concept of an advance directive (AD) into documents that are clinically useful across various healthcare settings and among different patient populations and cultures. Especially, challenging has been the reliance in most ADs on pre-selected “choices” about specific interventions which either revolve around broad themes (e.g., “prolong life / do not prolong life”) or whether or not to utilize particular interventions (e.g., CPR, mechanical ventilation), both of which about most laypersons know little and, more importantly, lacking context, prove to be of limited meaningfulness. Moreover, whether by foundational frame, decade-long misunderstanding in medicine and bioethics, or different societal customs, these ADs present decision-making responsibility for initiating, continuing, or withdrawing medical interventions as a patient responsibility—creating a burden for which most patients are unprepared—and hence reducing healthcare providers’ responsibility to mere technical application or customer service. At our institution, significant efforts have focused on embracing the unique and complementary responsibilities of patients (articulating their goals, values, and preferences) and physicians (using medical expertise to reach patient goals) for enabling appropriate plans of care. This includes re-structuring our AD form to more accurately represent patient’s values as the frame within which physicians are responsible for determining appropriate care. Rather than specifying interventions, the AD makes patients responsible for specifying what matters to them as well as what they value in terms of function, interaction, and level of acceptable burden, thus providing clear goals for clinicians to pursue—or when goals are not reachable by available medical interventions, to acknowledge and allow for logical shifts to what may be achieved, including, in end of life contexts, care focused on respect and dignity.
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Notes
Items were developed and revised in consultation with primary care, specialist, and palliative/supportive care medicine physicians and nurses, ethics consultants, social workers, chaplains, and hospital administrators. Social workers reviewed and elicited patient feedback on the items, wording, and design from patients and families in our monthly community advance directive workshops.
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Bartlett, V.L., Finder, S.G. An Actual Advance in Advance Directives: Moving from Patient Choices to Patient Voices in Advance Care Planning. ABR 10, 21–36 (2018). https://doi.org/10.1007/s41649-018-0045-0
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DOI: https://doi.org/10.1007/s41649-018-0045-0