Balancing patient information with our professional and relational duties to patients and families without appealing to paternalism.

A commentary by Antonella Surbone, MD PhD FACP, Ethics Editor on  yesterday’s article “Is There Such a Thing as Too Much Information?”

The insighftul and challenging piece Is there such a thing as too much information? by Mariya Rozenblit addresses a key issue in today’s medicine: how much information do we need to provide to our patients to enable them to make autonomous informed choices about their health, illnesses and treatments. She provides many data and examples from the literature to illustrate the potential damages of excessive information, especially when expressed through statistics that rarely apply to the patient sitting in front of us, trying to listen carefully while often terrified by what the news are going to be. (1)

Dr. Rozenblit draws amply on The Paternalism Preference — Choosing Unshared

Decision Making, published by Dr. Lisa Rosenbaum in 2015 in the New England Journal of Medicine, where the Author offers her personal reflections as a heart surgeon on the importance to guide her patients through difficult decisions, without fearing to impinge on their autonomy. (2) In a 2016 article published in JAMA as a Viewpoint on The Ethical Imperative of Healthy Paternalism in Advance Directive Discussions at the End of Life, the Authors discuss in depth the reasons why DNR discussions are not carried out by oncologists in a timely and honest way, and rather left to the acute setting of ERs when cancer patients are doomed to die soon and yet tend to refuse DNR for lack of information about their prognosis. (3)

These and other recent articles on patient information raise very important points, yet they seem to be caught in some form of old ‘autonomy vs. paternalism’ trap, as if there would be no other way to frame the issue of patient information. From a philosophical and ethical standpoint, this may be largely due to our persistent reference to individual autonomy – a notion erroneously attributed to Kant by a superficial reading of his theories. Under this interpretation, individual autonomy is simply the agent’s self determination after having acquired accurate and complete information about any given issue. Yet, this is an abstract and neutral notion of autonomy that does not apply to most human situations and relations, especially asymmetric ones such as the patient-doctor relationship, where the patient is rendered vulnerable by his or her illness and asks for the help of an expert who holds professional authority. (4, 5)

Having studied and embraced the notion of relational autonomy during my PhD in philosophy studies, and applied it to the ethical implications of oncology with special consideration of those contextual factor that shape and often limit patient autonomy (whether external or internal, financial or geographic, educational or socioeconomic), I believe that we, as health professionals and medical doctors, are an essential part of this relational contextual autonomy. (6, 7) Not only we have the professional responsibility to help and guide our patients through difficult decisions in virtue of our knowledge and expertise, but also the responsibility to establish an honest caring relation with our patients, that will enable us to share with them the most difficult issues such as poor prognosis or delicate end-of-life matters. (7)

Though research for effective instruments to measure patient preferences for information is still developing and we often must decide on how much information to deliver to patients who have never been clearly asked about their wishes or preferences in matter of information, as experts we can and should guide their patients in the decision making process about their medical treatment without resurrecting the notion of paternalism. Paternalism’s original meaning of ‘acting as a father in the best interest of the patient’ has been lost because of the many historic abuses of physician’s power and the persisting frequent practice of disregarding patients’ values and preferences considered unable to be fully autonomous, such as the elderly or minority patients with low health literacy. (8) Therefore, we will do much better by avoiding any form of ‘paternalism’, or reference to it, and rather fully and honestly embrace our professional and relational responsibilities. Patient information and informed consent, in fact, should neither be a way to delegate our responsibilities to the patient once he or she signed a form, or to substitute our value judgment to the patient’s ability and right to make decisions with our help. (2, 9)

Dr. Rozenblit simply and eloquently concludes by stating: “I do not want to be paternalistic” and “I hope that with training and years of experience I can become one of the physicians that Dr. Rosenbaum describes as having ‘sophisticated intuition’ that allows me to determine the perfect amount of information in the best possible format needed for my patients so that together we can come to the best decision possible.” (1)

Dr. Antonella Surbone, PhD FACP is an Ethics Editor, Clinical Correlations

References

1. Rozenblit M. Is there such a thing as too much information? Clinical Correlations.
2. Rosenbaum L. The Paternalism Preference — Choosing Unshared  http://www.nejm.org/doi/full/10.1056/NEJMp1508418
3. Decision Making. New Engl J Med 2015; 373: 589-92.
4. Einstein DJ, Ladin K, Mathew P. The Ethical Imperative of Healthy Paternalism in Advance Directive Discussions at the End of Life. JAMA Oncology 2016, 2: 429-430. https://www.ncbi.nlm.nih.gov/pubmed/26914544
5. Pellegrino ED and Thomasma DC. For the Patient’s Good. The Restoration of Beneficence in Health Care. New York and London: Oxford University Press, 1988.  https://www.amazon.com/Patients-Good-Restoration-Beneficence-Health/dp/0195043197
6. Surbone A. Lowenstein J. Asymmetry in the patient-doctor relationship. Journal of Clinical Ethics 2003:14: 183-188.
7. Sherwin S. A relational approach to autonomy in Health Care. In S Sherwin, Coordinator. The feminist health Care Ethics Research Network, The Politics of Women’s’ Health: Exploring Agency and Autonomy. Philadelphia: Temple University Press, 1988: 19-44.
8. Sabin J, Nosek BA, Greenwald A, Rivara FP. Physicians’ implicit and explicit attitudes about race by MD race, ethnicity, and gender. J Health Care Poor Underserved 2009; 20: 896-913. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3320738/
9. Surbone A. Telling Truth to Patients with Cancer: What is the Truth? Lancet Oncology 2006; 7: 944-950. http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(06)70941-X/fulltext?rss=yes

 

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