PAAGE: RESPONSE By Frances Norwood to Discussion Piece #2 – Right to Die

I was intrigued by both the content and the timing of Ender Ricart’s post to PAAGE. On the topic of timing, I recently did my own blog post asking the question, have we reached a tipping point in end of life policy? We’ve had a number of states recently pass legislation for physician assisted dying (including New Mexico in 2014, Vermont in 2013, Montana in 2009, Washington state in 2008, following Oregon in 1994). What’s more, many more states are debating whether to pass legislation following the most recent public case of Brittney Maynard, a 29-year old Californian woman with inoperable brain cancer who moved to Oregon to die with physician assistance in November 2014.

In September 2014, the Institute of Medicine came out with their report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. In it they clearly outline that it is time to make changes to how we care for people at the end of life, including earlier palliative care, better care coordination based on person-centered goals, attention to caregivers, and attention to physical, social, emotional, and spiritual needs of persons and their family members in the delivery of care (just to name some of the big recommendations). In October 2014, Atul Gawande published his book, Being Mortal: Medicine and What Matters at the End (October 2014), followed by the Frontline special Being Mortal on PBS (February 10, 2015). Dr. Gawande is a surgeon who points out that doctors have very little training and therefore too often few skills in how to have productive end-of-life conversations with their patients. Finally, I was in Washington, DC recently for a conference on end-of-life (National Action Conference, March 2015), which stood out for at least two reasons: first, that policy makers were even discussing end-of-life after the removal of ways to make end-of-life better from the Affordable Care Act following Sarah Palin’s baseless claims that patients would face “death panels.” Second, the conference was remarkable because for the first time in a long time a bi-partisan showing of Senators Warner (D-VA) and Collins (R-ME) called for politicians on both sides of the aisle to come together for better end-of-life policies.

I was intrigued by Ricart’s blog not just because I think it is timely, but also because of the important topics that she raised. Should we have a “right to die” in a manner we choose? Is physician-assisted dying (or physician-assisted suicide) truly a form of suicide or murder? And what of quality of life at the end of life especially when we have many ways to maintain the physical body in states of being that can only be described as somewhere between life and death? I am not a philosopher; I am an anthropologist who studies euthanasia, assisted dying, and other end of life policies but what I can say is this. After spending more than a year sitting with people who were living and dying in The Netherlands – the one country with the longest legal practice of euthanasia and assisted dying – I can say that neither a request for euthanasia nor assistance in dying should be confused with suicide.

In my ethnography of euthanasia and other end-of-life practices, The Maintenance of Life (2009), nearly everyone I met (out of 192 patients living with terminal or life-threatening illness) wished to live. In The Netherlands, euthanasia and assisted dying is not suicide nor is it a death-wish, it is typically a difficult choice made in the context of disease and decline, family, medical professionals, and dwindling options to alleviate suffering and maintain reasonable quality of life. It is typically made after much consideration – many conversations, on-going palliative care, and typically only decided after options have been exhausted weeks and months after the initial request. Are there those who are suicidal who may get euthanasia or assistance in dying in The Netherlands? Yes, I think that is possible, but these cases are not the norm.

So what does this mean for the U.S. as we weigh the risks and debate our own end-of-life policies? I think the first step for us is to review how Americans typically die and we have lots of examples in the anthropological literature on what this looks like. Americans are often receiving invasive, futile, and painful treatments that move dying out of the home, away from family, leaving people to die isolated deaths with medical interventions that are at times more torturous than the illness itself. Are we doing more harm than good? Yes, we are. So after reflection, our next step is to consider how we might shape policies to make it easier to avoid or discontinue interventions when intervention itself is harmful. Next, let’s think about supports for quality of life prior to death. People must have options as they live longer with chronic illness, disabilities, and disease. Let’s grow supports to keep people where they want to be – at home, where their social networks keep them happy and connected. When home is no longer an option, let’s grow our long term care options, moving away from the medical-model of nursing home care. We need more options that support the social and medical needs of the person, focusing not just on minimizing risk, but maximizing social connection and the value of life as defined by the person. Finally, in states where enough options for palliative care, humane long term care, and balanced social and medical supports exist, then perhaps consider policy for assistance in dying.

Frances Norwood
George Washington University
Department of Anthropology

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