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08/12/2014

Lessons from France: Decision-Making At the End-of-Life

by Craig Klugman, Ph.D.

In the United States, the notion of autonomy is held in high regard. Since the development of patient’s rights in the early 1970s, the notion that an individual has the capacity of self-governance is a cornerstone of medical ethics and a standard of medical care. But that idea has not always been held. In the early and middle parts of the 20th Century, patients were often not told about terminal diagnoses. The joke about doctors curing through the words, “take two aspirin and call me in the morning” derives from the practice that patients were not only not told about their conditions, but were also given treatments without any discussion of what the drugs would do (or not do).

A recent New York Times article talks about a shifting patient culture in France. In that country, the law holds when a patient lacks competency or capacity that a physician makes the decisions after consulting with the family. The physician does not have to listen to the family, or follow the family’s instructions, just has to consult with them. This power arises from a French trust in authority and a strong belief that with his or her years of training and experience, the physician is in the best circumstance to make life and death decisions. The physician is believed to be away from any emotional turmoil and family disputes, able to make a more reasoned, objective assessment.

It was not until 2002 that the French had the right access their medical files. Some still disagree with the new law. The belief is that patients need to be protected from some news so that  are not traumatized and lose hope. To muddy the waters more, a 2005 law in France bestows upon doctors the right to make end-of-life decisions for patients. The physician can remove life-sustaining treatment or give other succor to alleviate the patient’s suffering. The law prohibits acting with the intention of ending a life, though that sometimes the effect.

Unlike several other European countries, in France euthanasia is not legal (Belgium, Netherlands) nor is it an automatic defense in court (Switzerland). The French law is fairly silent and thus, there have been claims of physicians ending patient’s suffering (i.e. causing death) without consent. In high profile French cases, physicians have been found innocent of ending patient’s lives. In other cases, physicians’ decisions to remove life-sustaining treatment have been blocked by courts because physician did not consult with the family, irrespective of the patient’s wishes or whether physicians making such choices was appropriate.

The French legislature is considering new legislation on end-of-life care and decision-making. They seem to be moving in the direction of the U.S., where families and patients have a very strong say in end-of-life care. In reality, in most states, a health care provider is not permitted to be a surrogate. Also consider that in the U.S., there are strong distinctions in law between removing life sustaining treatment (allowed), making the means available for a patient to end his or her life (allowed in 4 states), and the physician ending the patient’s life (not allowed).

This story presents the French situation as an oddity, as a “freak show” that we should all look at with a modicum of horror. We should be appalled at how uncouth and behind the times the French are that they are only now adopting what has been standard in the U.S. for a while. The underlying assumption is that France will come to see the superiority of patient autonomy at the end of life. In other words, that they should be more like us. In a sense, there is a presumption that we have it right, but the contentious debates in U.S. society on this issue should show that we are far from consensus on end-of-life choices.

What lessons can the U.S. learn from the French debate? First we have to recognize that while France is unified in its laws regarding health and medicine, in the U.S. there are 51 legislatures experimenting with various approaches. While we generally have a patients-right approach, there is much dialogue that the government is trying to control death and dying: The Affordable Care Act debate was surrounded by accusations of “death panels”—fears that the government might decide end-of-life care. An annual ritual in many state legislatures is the introduction of a bevy of bills limiting the rights of anyone to make decisions for comfort care measures only or to limit aggressive care. In the U.S., there are rumblings that making end-of-life decisions is a burden on families and surrogates and that physicians should have more power in this area to alleviate the stress.

What this discussion demonstrates is that notions of dying are strongly based in cultural history. Culture influences not no only define appropriate choices, and who should make those choices, but also what makes a good death. Although this comment may elicit claims of “moral relativism,” the desire for a universal human morality cannot outweigh the descriptive reality that there is a different approach and what’s right in one place may be wrong in another.  The point of the article is not that the all French people find physicians’ making decisions to be wrong, but rather that it is only recently that the French have publicized any concerns about this approach. In a national that declares among its core values to be fraternity, the notion that others would make decisions and could be relied upon to do so makes sense. And yet, both nations share “liberty” as a founding value. The difference is that the U.S. sees liberty as freedom from outside influence and the French have viewed it as an ability to govern themselves, as a people, not necessarily as an individual. We are different, but no better or worse in our approach and perhaps, we have something valuable to learn from one another.

This entry was posted in Cultural, End of Life Care, Featured Posts, Media. Posted by Craig Klugman. Bookmark the permalink.

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