My name is Dr. Seth Morgan. I am a board-certified clinical neurologist and fellow of the American Academy of Neurology. I am also disabled by multiple sclerosis and serve as district activist leader for the National Multiple Sclerosis Society and am chairman of my county’s Commission on People with Disabilities. I provide these credentials not to speak officially for any organization, but to demonstrate my medical expertise as well as my commitment to bettering life for people with disabilities. I feel a responsibility to respond to the commentary by Stephanie Woodward.
Based on my 23 years of clinical practice, as a person with a disability, and as an individual whose family members have experienced very difficult end-of-life challenges, I am in strong support of authorizing medical aid in dying. Having cared for people with progressive and terminal neurological illnesses, I believe the authorized practice of aid in dying has strong protections for the patient. The individual seeking control at the end of their life must have a terminal illness with a very limited life expectancy; must be competent to understand the decision as well as all the available alternatives and must self-administer the medication. When combined with the additional safeguards of a second medical opinion, possible mental health evaluation, required time periods between requests and witnesses, aid in dying is designed to prevent abuse.
As more states authorize aid in dying in response to public demand, clinical guidelines for physicians have been developed. These best practices, recently published in the Journal of Palliative Medicine, provide guidance on responding to requests for aid in dying at the end of life and assessing patient decision-making capacity. Emphasis is placed on mental competence, capacity for self-determination and freedom from coercion. These criteria are disability-neutral.
In Oregon, both physicians and dispensing pharmacists submit a report to The Oregon Health Authority each time they prescribe or dispense medication to a patient under the Death with Dignity Act (DWDA) – a legal protection that serves the interests of providers, patients and families. The Public Health Division then releases aggregate data each year. From this extensive collection process, we know that the typical profile of a DWDA user in Oregon is a white, older than 65, highly-educated, terminally-ill individual enrolled in hospice. Cancer is the most common diagnosis (80 percent), followed by ALS (7 percent), then cardiac, respiratory and other chronic diseases. Of those who obtain a prescription, approximately one-third choose not to use it. The most common reasons for requesting aid in dying are loss of autonomy, loss of enjoyment in life, and loss of dignity–determined by the individual him or herself.
In the 17 years the DWDA has been in effect in Oregon, there has not been a single reported case of abuse, contrary to Woodward’s mischaracterization of the Cheney family’s fight for their mother’s right to a peaceful death. Additionally, Oregon State University, Portland State University, Oregon Health and Sciences University and the Portland VA Medical Center have published research and analysis on DWDA in respected peer-reviewed medical journals. Over the years, local and national press have scrutinized the data and reported stories that have documented the law’s implementation. I am confident that my peers on the West Coast are upholding the highest ethical standards in practicing aid in dying and I commend them for bravely supporting their patients who choose a peaceful means to end their suffering when it becomes unbearable.
Woodward’s fear of so-called “assisted suicide” perpetuates the stigma that people with disabilities are weak, vulnerable and unable to make our own decisions. In her commentary, she speaks against, “people who feel that decisions should be made for me, not by me.” And yet, that is precisely what she now wants to do for all of us with disabilities. She takes one sad and biased set of values that subjugated people with disabilities for years and replaces it with her own personal biases. In this 25th anniversary year of passage of the Americans with Disabilities Act, it is, I believe, a continued bias against people with disabilities to argue that there is a danger of using this law to “euthanize” us. The movement to authorize aid in dying is based on respect, dignity and autonomy. Only I can determine the quality of my life. Only I can say when I’ve lost my dignity. This is the very philosophy that drives our movement for equal rights.
Woodward also does a disservice by equating depression with the grief and suffering that comes at the end of life. Those who choose aid in dying don’t want to die. They are dying. Depression becomes terminal when it goes untreated. We need to demand justice in the delivery of mental health services but not at the expense of those suffering at the end of life.
Woodward observes that “every major disability rights organization that has taken a stance on assisted suicide opposes its legalization.” The American Public Health Association, the American Medical Women’s Association, the American Psychological Society, the National Physicians Association and many others have indicated either support for aid in dying or have a position of neutrality, characterizing the decision as personal and individual. The American Civil Liberties Union, one of our strongest allies, testified before the New Mexico Supreme Court in a case last month that “allowing competent patients to end their lives without prolonged suffering is a Constitution right.”
As a frontline physician, I have seen the need for aid in dying in my patients. It saddens me that irresponsible commentary such as Woodward’s conjures unfounded fears that misinform the public and become obstacles for those suffering terribly at the end of life, with no hope of recovery and no available relief.