Moving Beyond Death Panels
Back in 2009, in the midst of the health care debate, Sarah Palin was famously quoted for saying the proposed reform created figurative “death panels” that would judge whether older individuals would live or die. Of course, this was a complete lie, taken from the provision that encouraged discussion between Medicare patients and their physicians about medical decisions to be made later in life. Nevertheless, the term “death panels” has made its way into the public vernacular and has succeeded in bringing attention to end-of-life care, albeit in a largely negative way.
End-of-life care has been an especially important topic in public conversation due to the high costs associated with care. To provide approximate context, Medicare pays $6,620 for beneficiaries in their last month of life as compared to $325 per month for surviving beneficiaries. Considering the abounding conversation about waste in our health-care system, it is no surprise that end-of-life care is frequently called upon as an area to address.
Unfortunately, the issue is only becoming more complicated with the growing capabilities of medical technology to prolong life. With so many possible ways to promote longevity, the question becomes not whether or not to undergo a procedure, but rather which procedure to undergo. While the decision may be clear-cut for treatments that offer a real promise of long-term improvement, it is significantly more challenging when a treatment can only delay the dying process briefly.
The availability of treatment choices isn’t the only problem. In the United States, we value individuals’ abilities to make their own decisions, especially in health-care. Over the past several decades, the culture of medicine has undergone a serious shift from a world in which doctors were the sole decision-makers (so-called “paternalistic” medicine) to a world in which patients have a large say in their own care (autonomy-based medicine). In the current environment, patients’ opinions are recognized and respected.
While this theoretically sounds beneficial to patients, it reignites the same issues associated with the choice of medical technology. A patient is bound to be in a vulnerable and sensitive state when faced with decisions about end-of-life care, and it is therefore unreasonable to expect patients to be able to properly consider pros and cons. Most will choose to pursue any possible treatment, as doing something feels better than doing nothing. The importance placed on patients’ decisions is valuable in theory, but it ultimately places the burden of decision-making on the patient and requires that healthcare professionals trust patients to understand the implications of their decisions.
This dilemma has motivated the effort to popularize the making of advance directives, or living wills, legal documents in which a patient can give directions for their medical care in case they become incapable of making decisions for themselves. Making serious decisions can be an extremely difficult, emotional task in a hospital or a similar setting, especially if patients haven’t given these decisions much thought. The Patient Self-Determination Act, passed in 1990, sought to empower patients to make these end-of-life medical decisions by raising awareness and encouraging providers to discuss patients’ rights to refuse life-sustaining treatment. Ideally, individuals would fill out forms to refuse treatment in advance of any potential need for medical care.
While successful in raising awareness and increasing utility, just over a quarter of adults actually have advance directives, leaving most conversation about end-of-life care to take place in the hospital. Jane Brody, in an article for the New York Times, highlights the need for more than just advance directives. The end-of-life discussion should ultimately be a communication about an individual’s values. Instead of focusing on specifics, families and doctors should be asking questions that aim to understand what is important to patients in order to better understand and act upon preferences at the end of life. Brody is not the only one to endorse this holistic and discussion-based approach to end-of-life care — many others have also supported this approach, including famous health-care journalist and surgeon Atul Gawande in his new book, Being Mortal. (For more information, see this video of Atul Gawande discussing end-of-life care.)
Though the “death panel” suggests that discussions about end-of-life care are an assault on freedom and choice, the reality is anything but that. Current strategies focus on the role of the physician in bringing out patients’ values and working together for important conclusions rather than giving patients numerous options and expecting them to choose. Our country seems to be converging toward common efforts to let individuals guide the decision-making process, giving them the freedom and liberty consistent with American values.