The Hasting Center, the leading bioethics organization in the United States just released a special report entitled, Improving End of Life Care – Why has it been so difficult. Link to Hastings Center Special Report Contributors to this report include Daniel Callahan, co-founder of the Hastings Center, and Joanne Lynn, among other luminaries. It’s a worthwhile read. The consensus reflected in the articles seems to be that leaders in the field have relied too much on untested assumptions. In particular, the focus of much early advocacy (1960’s-mid 1990’s) for better care focused excessively on the role of medical ethics in general and more specifically the primacy of the ethical principle of autonomy. Later studies, in particular the now famous SUPPORT study, appeared to show the impact of such a narrow focus on ethics was far less than had been hoped for or anticipated. In their article, "The quest to reform end of life care: rethinking assumptions and setting new directions," Murray and Jennings provide a nice summary of conclusions:
· Our approach to end of life decision-making has been excessively rationalistic
· Our approach to end of life decision-making has been excessively individualistic
· Our approach to end of life decision-making has been based on what may be a misdiagnosis: we have assumed that inappropriately aggressive and unwanted treatment at the end of life is fundamentally a problem of prognostic uncertainty and poor communication
· We should approach end of life care from more of a policy- and population-based perspective, not simply from a clinical one
· We should reevaluate advance directives and surrogate decision-making
· When conflicts and disagreements arise within families, independent mediation and conflict resolution services, including pastoral counseling, should be readily available in health care institutions
That the prestigious HastingsCenter on behalf of the field of bioethics has come forth with a mea culpa in this regards is a big deal in my opinion. I would have preferred to see a bit deeper reflection on why it took in excess of 25 years to figure out that the narrow focus of medical ethics needed to be shifted. To my read, they do hint at what I believe were cultural blind-spots that prevented folks, including me, from seeing what might otherwise have been obvious. One blind spot seems to be that the excessively rational and individualistic approach to problem solving noted in the articles reflects our Western, predominantly Northern European traditions, which place a higher value on abstract thoughts and concepts than on human relationships.
Following the SUPPORT study, the emphasis in the palliative and end of life care movement has shifted to attention to systemic aspects of care. The question has become less about individual decision-making than how can we might change the system to improve the chances that people will get better end-of-life care. The early returns suggest that this approach has been more effective in improving overall care. Personally, I have very much been part of this recent wave of activity, working largely with the Department of Veterans Affairs to improve care by advocating for things like more palliative care consult teams and dedicated palliative care units. However, I suspect we too have a cultural blind spot. My worry is that we risk overly bureaucratizing palliative care, as we have bureaucratized so much of the rest of our lives. Not that we don’t need more effective organizational structures for the provision of good care, but I think we Americans are congenitally prone to excess. We have made great strides in recent years in the palliative care movement, but we may be approaching a time where we would be better served by pausing and reflecting on what has worked and what has not, rather than dashing ahead with bold new ideas. As the old adage goes, sometimes its best not to do something, but to just sit there.
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