By Ari Ne’eman, a Member of the National Council on Disability, an independent federal agency which advises Congress and the President on disability policyClick here to read an editorial by Barbara Coombs Lee, President of Compassion & Choices, explaining why patients should have the right to plan their end-of-life experience.
There are many critical civil rights issues facing Americans with disabilities and chronic health conditions – but the right to die is not one of them. Over the last 15 years, Americans have been engaged in an intensely controversial debate as to whether or not states should legalize assisted suicide for individuals with significant disabilities and terminal illnesses.
These laws – often promoted as “Death With Dignity” – appear on the surface to assist individuals expected to die within six months to request a lethal prescription from their physician. To the uninformed, these laws claim to enhance autonomy to a small number of individuals already at the end of their lives. Yet, as we’ve seen from years of experience where physician-assisted suicide has become legal, the reality is quite different. Far from assuring autonomy, the legalization of physician-assisted suicide has served to diminish true choice by creating an environment in which individuals denied access to necessary health care are made to feel like suicide is their preferred option. By advocating for so-called death with dignity, rather than the support and services people need to live, proponents of such laws bolster a system already denying dignity to hundreds of thousands of Americans with disabilities and chronic health conditions.
First, let’s explore the myths surrounding physician-assisted suicide laws. Those who believe so-called “Death With Dignity” laws will result in pressure on disabled Americans to take their own lives are frequently rebutted by saying such laws only apply to those with terminal illnesses, individuals who are already near death. While this may be the intent of many of these laws, the reality paints a very different picture.
According to the Oregon Public Health Division, the length of time between the request for a lethal dose of medication and actual death has been extended up to nearly three years. This suggests a substantial number of patients affected by the law were not terminally ill, but lived years after the initial request. And, as such, may have benefitted from other options, such as improved palliative care, pain management or the psychiatric counseling considered standard for any non-disabled individual making a comparable request.
Indeed, ample evidence suggests proponents of physician-assisted suicide have never intended to stop at the terminally ill. Legislation introduced in New Hampshire in 2009 would have utilized a definition of terminal illness so broad as to allow for a lethal prescription in response to any condition which shortens lifespan without a known treatment – even if the individual in question might have lived years or even decades longer.
Take the case of Tracy Latimer, a 12-year-old Canadian girl with significant developmental disabilities who was murdered by her father. Following the father's conviction for second-degree murder, the executive director of the Toronto chapter of Dying With Dignity asserted he should serve no sentence, as "the Latimers had already lived under a sentence during the 12 years that Tracy was alive." We cannot allow such cases to set the standard. The United States can, and should, do better.
Yet, to the many disability rights activists opposed to assisted-suicide laws, there is an even larger issue than who such laws apply to: How can choosing to die ever be a truly voluntary choice in a society that fails to provide life with dignity for disabled Americans?
If the only alternative to death offered to those who require assistance is poverty and segregation, we are not providing people with meaningful choices. Seniors and disabled Americans who require assistance in activities of daily living must often spend their assets and limit their income in order to qualify for the Medicaid coverage which will pay for their long-term services and support needs. Once they qualify, this enforced poverty is compounded by rules that make it difficult, if not impossible, to get services in the community, forcing hundreds of thousands into nursing homes and institutions, where loss of autonomy is a given. This, not illness, is why people make the choice to die.
The experience in states that have legalized assisted suicide reveals this to be the case. According to further data from Oregon, over a third of those who request to die do so because of “feelings of being a burden” and nearly 90% cite “loss of autonomy” as a factor as well. These issues are not the inevitable results of living with a disability or illness – they are the result of a failure on the part of our society to ensure that those in such a situation have access to services, support and health care. Unfortunately, during a time of fiscal strain and vast budget cuts in health care and social services, it may simply be less expensive to view death as the answer to these challenges. Human beings caused these problems – and human beings are the only ones who can fix them.
Anyone who has ever struggled with an HMO knows how broken America’s health-care system is. To allow an already flawed system to decide between life and death creates more problems than it solves. Assisted-suicide advocates have proven themselves remarkably adept at making an emotional argument for legalization – but the data tells a different story.
It may be tempting to view death as the “easy way out” to the myriad of challenges facing Americans with disabilities and chronic health conditions. It is certainly cheaper. Yet, we have better options. Fixing our broken health-care system and making it easier for those who require assistance to receive it without being segregated into nursing homes and institutions is a better beginning.
Taking concrete steps to helping people live should take priority to addressing why some people feel a desire to die. We would accept no less for those who are non-disabled. So-called “Death With Dignity” legislation allows society to abandon those principles. The long and difficult task of building a more just and inclusive society remains unfulfilled. Legalizing physician-assisted suicide takes us further away from realizing that potential.