Are we doing more harm than good? Yes, we are.

By Frances Norwood

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
fnorwood@gwu.edu

Right to Die Pt 2. RESPONSE in opposition to the legalization of Physician Assisted Suicide (PAS), by Alan Carver

Right to Die: PROVOCATION by Ender Ricart

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Right to Die

In the United States our supposed inalienable human rights include, among others, freedom from torture, slavery, freedom of speech, religion, and the right to life. But what of death? If we possess the right to life, do we not also have the right then to choose how and when to dispossess that life? This question of the “right to die” has recently re-entered public debate and policy discussion via a controversial lawsuit against the state of New York aiming to secure the right to doctor-assisted suicide. But the legalization of doctor-assisted suicide must overcome two very cogent social stigmas: suicide and murder. Suicide, since the time of Durkheim if not earlier, has been classified as a sign of pathology – a social, and increasingly, individual pathology. The logic follows that an individual who chooses to commit suicide must not be in his or her right mind and be in need of psychological treatment, medication, and other more invasive forms of care. Similarly, the taking of another’s life is murder. It is the violation of another’s basic human right to life. Doctor-assisted suicide is situated somewhere in the gray territory between these two, engendering explosive criticism and rejection.

But, putting aside reactionary responses, many who have (had) a beloved family member or friend facing chronic and terminal conditions such Alzheimer’s disease and cancer are often sympathetic towards the idea of allowing one to choose how and when they will die. Several states in the U.S., including Oregon, Washington, and Vermont, have legalized assisted suicide for terminal patients, and have built legal frameworks to ensure the process is an ethical one. A common trend emerging from states in the U.S and other nations where assisted suicide has been legalized is that many whom express interest do not actually go through with it. Medical Anthropologist Frances Norwood, from the Columbian College of Arts and Sciences, draws a distinction between “euthanasia talk” and the actual act of euthanasia in her book on assisted-suicide in the Netherlands, The Maintenance of Life: Preventing Social Death through Euthanasia Talk and End-of-Life Care – Lessons from the Netherland (2009). This is an important distinction, as the ability to choose death for terminally ill patients opens space for discussion with trained professionals, family members, and loved ones about death. The option to choose how to die additionally preserves the dignity of the individual in question, as they exert a final measure of control over their life.

The question of physician-assisted suicide is particularly salient for anthropologists of aging and gerontologists. With life-extending medical treatments and technologies, seniors with once-terminal conditions now find their lives being extended by years, percutaneous endoscopic gastrostomy (PEG) feeding tubes being a prominent example. But what is their quality of life? Or perhaps I should say, their quality of death? If there was a legal system in place that allowed them to choose to end their life, would they? How can the debate around physician-assisted suicide be conceptually reframed to distance it from already marked concepts like suicide, murder, and death? What are other cultural and historical perspectives on euthanasia that might offer lessons to the still nascent debates underway in the U.S.?

Ender Ricart
enderricart@gmail.com

Right to Die: Response by Frances Norwood

Right to Die: Response by Alan Carver

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RESPONSE in opposition to the legalization of Physician Assisted Suicide (PAS)

by Alan Carver

In the past 20 years, there have been numerous studies that have revealed how little physicians trained in the United States are prepared to care for their dying patients. Due to a paucity of attention paid to the subject in medical school and residency curricula, there is a large gap between the needs of patients with advanced disease and their families, and the lack of readiness of their physicians to meet those needs. Deficits in pain education, doctor/patient communication, and the basic tenets of palliative medicine have been well documented. Why then the clamor to support the legalization of PAS? The discussion should not be about whether or not we permit doctors to kill their patients, but whether or not we as a society and medical community are meeting our legal, moral, and ethical obligations to providing competent end of life care.

In permitting doctors to treat their patients aggressively, if required, for symptom relief, “even to the point of unconsciousness and hastening death,” the Supreme Court of the United States has already answered the question. (1). It is not legalization of PAS that we need; it is competent care of the dying. Previously, the World Health Organization endorsed palliative care as an integral component of a national health policy and “strongly recommended to its member countries that they not consider legalizing PAS and euthanasia until they have addressed the needs of their citizens for pain relief and palliative care.” (2).

In Discussion Piece #2, Ender Ricart understandably expresses concern about “quality of life and quality of death.” She would likely support Daniel Callahan’s conclusion that, “It is not death that is the enemy, but a painful, impaired, and unhealthy life before death…Death will always be with us. We cannot change that fact. But we can change the way people are cared for at the end of life.” (3). Dying patients are best cared for by physicians and other care providers with the knowledge and training to help their patients live as well as they can for as long as they can. Our culture seems so concerned about patient’s rights, yet we neglect one of the most fundamental of all – the right to competent care by a physician near or at life’s end.

I concur with Frances Norwood’s RESPONSE in concluding that, “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.” She supports consideration of PAS only “in states where enough options for palliative care, humane long term care, and balanced social and medical supports exist.” Let’s start there, and put the discussions and debates surrounding legalization of PAS off for the day when we are truly meeting the needs of our dying patients. Dr. Kathleen Foley wrote, “Death is an issue that society as a whole faces, and it requires a compassionate response. But we should not confuse compassion with competence in the care of terminally ill patients.” (4). Exactly.

Alan Carver, MD
Assoc. Attending Neurologist
Memorial Sloan Kettering Cancer Center
Assoc. Clinical Professor of Neurology
Weill Cornell Medical College
New York, NY

References

1) Vacco v Quill & Washington v. Glucksberg, 117 S. Ct., 1997
2) Cancer Pain Relief and Palliatieve Care. Geneva; World Health Organization, 1989
3) Callahan D., N Engl J Med., March 2, 2000.
4) Foley, K., N Engl J Med., January 2, 1997.

Right to Die: RESPONSE by Frances Norwood

Right to Die: PROVOCATION by Ender Ricart

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