We Need a Paradigm Shift Around End-of-Life Decision Making

Researchers and practitioners in the palliative care and geriatrics communities must consider a wider view of what must be studied and intervened upon to truly change goal-discordant, high-intensity care near the end of life, write Elizabeth Dzeng, MD, PhD, MPH and co-author R. Sean Morrison, MD in a recent Journal of American Geriatric Society article. 

In the editorial, Dzeng and Morrison respond to a study that found that veterans over age 65 with moderate to severe dementia who had a professional (non-friend or relative) guardian were no more likely to die with high-intensity end-of-life care than one with a “known” surrogate guardian, in contrast to previously held beliefs that professional guardians in the absence of advanced directives would tend to  choose high-intensity rather than palliative care for patients with dementia at end of life. Dzeng and Morrison propose that this study supports consideration of an alternative process that decreases the emphasis on advance care planning that is prevalent in the United States.  The authors detail alternatives that could be used such as a best interest standard of care as is the legal norm in other countries such as the United Kingdom, where a process determines what care is in the patient’s best interest.  A best interest standard of care could account for patients’ goals and values, as well as cultural, personal and religious preferences that would be evaluated in context of what is medically in the patient’s best interest. Crisis communication, supporting real-time communications between care teams and surrogate/family members is another alternative model. 

Nationally, our market-driven healthcare financially incentivizes high-intensity care regardless of whether it benefits or harms patients. Institutional, cultural and clinical practice norms are a powerful force against which it is difficult for individuals to affect change against the default of aggressive, high-intensity end-of-life care. 

Dzeng and Morrison recommend considering other strategies to improve decision-making in those without decisional capacity. To make significant progress against the default of high-intensity care, the authors urge palliative and geriatrics communities to collaborate with other fields. The authors also encourage adapting methodologies and knowledge from fields with experience in understanding networked behaviors and social interactions such as sociology, organizational behavior and systems design.

Elizabeth Dzeng, MD, MPH, PhD

Dr. Dzeng's research examines the influence of neoliberalism and specifically the culture and ethical implications of neoliberalism on an institution's ethical priorities in the United States and United Kingdom and its effects on the provision of non-beneficial high-intensity life-sustaining treatments near the end of life in older adults with dementia and serious illness. Through a comparative ethnography employing semi-structured in-depth interviews and participant observation, Dr. Dzeng seeks to understanding the macro-, meso-, and micro-sociological factors (and in particular ethical decision-making climate) that contribute to potentially non-beneficial high-intensity care near the end of life. Using this ethnographic data, she is co-design a systems-level intervention using human-centered design to mitigate the culture of burdensome end-of-life care. Other areas of research include clinician moral distress and clinician experiences and ethical perspectives around the COVID-19 pandemic.

 

We Need a Paradigm Shift Around End-of-Life Decision Making.

Dzeng E, Morrison RS.J Am Geriatr Soc. 2021 Feb;69(2):327-329. doi: 10.1111/jgs.16899. Epub 2020 Nov 1