MAID: My Own Decision Making - All My Life

Introduction

I still remember the call from my parents telling me of my grandmother's horrific illness. While visiting them in Europe, my grandmother had a heart attack so severe that she was chronically short of breath and could not lie flat to sleep. Medications were unable to decrease her discomfort. Compounding this was the incidental discovery of a previously unknown lung cancer.

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Their instinct was to fly her home to the United States for medical treatment (a ten-hour trip under the best of circumstances) - a strenuous and uncomfortable journey I felt my 91-year-old grandmother might not survive. I suggested minimal treatment: comfort care and the company of those she loved. At first they were surprised. But they opted for that course; and my grandmother died peacefully, with her family at her side.

That was 40-plus years ago, when I was a young physician. Today, thousands of patients later, if I, myself, face a similar terminal scenario, I want the option of choosing medical aid in dying. Specifically, medical aid in dying is the ability of a mentally capable, terminally ill adult to request a prescription from their physician for medication that they could voluntarily self-administer to end their suffering in their final days or weeks.

The availability of such an option has been on my mind more as I age and as my Multiple Sclerosis (MS) progresses. I was diagnosed ten years ago, and so far I remain fairly healthy and active. But I am a neurologist, so I know well the potential for disease progression and the fragility of life. My disease is not predictably fatal. But it will continue to impact my life course, and there is no clear, reasonably accurate way of determining how long I will live. But, if I were faced with a fatal disease such as terminal cancer, I would want the option of self-determination and a death with dignity.

There are many others in the disability community who back the medical option of aid in dying for people facing unbearable suffering in their dying process from a terminal illness. According to recent state polls, a strong majority of voters living with disabilities support medical aid in dying: in Connecticut (65%), Massachusetts (74%) and New Jersey (63%). The average support level is nearly identical to all voters in these states Connecticut (66%), Massachusetts (71%) and New Jersey (62%).

Knowing the level of support that exists for medical aid in dying, it has troubled me that leaders of disability rights groups testify against bills that would authorize it. I observed this firsthand when I testified in support of a bill this year.

Their main objection sounds plausible enough: the fear of coercion of people who live with disabilities. But that fear is simply not borne out by the evidence. There has never been a substantiated case of coercion in the combined 30 years that aid in dying has been authorized in Oregon, Montana, Vermont and Washington.

More than one dozen legislatures considered aid-in-dying bills in 2016. Many bills progressed but have not become law yet. Lawmakers should recognize that inaction has consequences: specifically, denying a personal choice to me and millions of others. Reversing the denial of empowered decision making and fighting against the condescending treatment of people with disabilities has been a rallying cry of those living with disability.

As we anticipate the 26-year anniversary of passage of the Americans with Disabilities Act, it is, I believe, a reflection of lingering bias against people with disabilities that some have argued there is a danger of using these laws to "euthanize" people with disabilities. It is offensive to characterize those of us with physical disabilities as incapable of making reasonable choices.

People with disabilities are a vastly diverse group. Those with cognitive disabilities of any type would not qualify under this legislation. And people with disabilities who are mentally capable of making their own medical decisions are as diverse in their feelings as any other individuals in our society. Some may support this option for themselves. Some may reject it. Most of us don't really know how we would feel until we are forced to face this decision. But we should all have access to this medical option and be able to decide for ourselves.

Dr. Seth Morgan is a board certified neurologist. He is District Activist Leader for the National Multiple Sclerosis Society as well as Chairman of Montgomery County's Commission on People with Disabilities. [The views expressed here are his own.]

Related Information

• Exploring the Prevalence and Impact of Ethical and Religious Barriers to Medical Aid in Dying: Paper finds 26% of physician respondents reported ethical or religious barriers to participating in medical aid in dying, but many willing to engage in discussion with patients and provide referrals for care.
• Physicians Face Ethical Conflicts with Religious Hospitals: Primary care physicians nationwide face clinical ethical conflicts with religious hospitals.
• Why We Believe in Gods: Religious Beliefs Not Linked to Intuition or Rational Thinking: Studies have suggested people who hold strong religious beliefs are more intuitive and less analytical, and when they think more analytically their religious beliefs decrease.
• Disability and Religion: Studies and Overview: Information and disability studies that reference religion and disabilities, includes religious beliefs, purpose, and treatment regarding the disabled.
• Proposed Changes to Medical Assistance in Dying Legislation : Canadian Government: Medical Assistance In Dying (MAID) is a complex and deeply personal issue. Article outlines reintroduced proposed changes to Canada's Criminal Code provisions on MAID.
• Bill to Charge Doctors with Homicide for Providing Aid in Dying Defeated: Bipartisan group of legislators voted 51 to 49 to reject bill HB328, which opponents call The Physician Imprisonment Act.