Journeys with Autism

[Published in The Commons, March 23, 2011]

“Death with Dignity” Bill Promises Only Indignity

The least costly treatment for any illness is lethal medication. –Walter Dellinger

When I was younger, I fully supported physician-assisted suicide for terminally ill people. I believed that people who are dying should be able to decide when and how the end arrives, and that physicians should be able to make the process as painless and as dignified as possible.

After all, isn’t the decision to end one’s life a personal one? Doesn’t the right of self-determination dictate that one should have control over deciding the manner of one’s death?

If physician-assisted suicide had no consequences beyond the life of the person in question, the answer to both questions would be a resounding “Yes.” But living in society means that when a decision has a serious, negative impact upon the lives of others, we must limit a person’s ability to carry it out.

And so, as I reflect upon the consequences of legalizing physician-assisted suicide, I now find myself against it. The so-called “Death with Dignity” bill before the Vermont Legislature, if passed into law, would have a profoundly negative impact upon the lives of people who do not wish to avail themselves of its provisions.

In reading the bill, I find myself deeply troubled by the criteria by which one is eligible to choose physician-assisted suicide. So long as the patient is fully competent to make an informed decision, the only requirements are that he or she “must have a terminal illness and must have fewer than six months left to live.” A terminal condition is defined as “an incurable and irreversible disease which would, within reasonable medical judgment, result in death within six months.”

Now, in almost all discussions that I have ever had in my lifetime about this issue, proponents of physician-assisted suicide have always argued that it is simply inhumane to allow a human being to live in a state of agony, and that physicians must provide a quick and painless way out. The possibility of unendurable pain has always formed the basis on which most people have argued for the right to die.

But the “Death with Dignity” bill says nothing about ending one’s physical pain. This omission may derive from the fact that most kinds of physical distress can now be managed by medication; except for certain kinds of neuropathy, it would be difficult to identify a condition that would cause untreatable levels of pain. If such is the case, why would someone with six months to live want to end his or her life prematurely?

The answer lies in the word “dignity.” The bill’s proponents argue that one should be able to maintain one’s dignity in the dying process. And what are considered the barriers to dignity? In reading the words of those who support physician-assisted suicide, I have learned the following: It is considered undignified to be unable to toilet oneself. It is considered undignified to wear a diaper. It is considered undignified to be in a wheelchair. It is considered undignified to be dependent on the care of others. To some, it is even considered undignified to no longer be able to participate in so-called “normal” activities.

By implication, the bill suggests that finding oneself in any of these conditions is a perfectly valid reason to commit suicide.

I find this kind of reasoning both dangerous and deeply insulting. There are many, many disabled people who are unable to toilet themselves, who wear adult diapers, who use wheelchairs, who depend upon the care of others, and who cannot participate in the activities that typically able-bodied people take for granted. And, as should be obvious to all thinking people, their lives have the same inherent dignity and meaning as the lives of other human beings.

That we equate dependency and the wrong undergarments with indignity is nothing more than our own cultural blindness. It is a choice that we make as a society, and nothing more.

To equate disability — especially severe disability — with indignity is dehumanizing. And to imply that any of these conditions is a reasonable basis upon which to commit suicide is to devalue the lives of people who live with these conditions for years, decades, and lifetimes.

This kind of devaluation is the greatest possible indignity that a disabled person can suffer, and it leads to all the many indignities with which disabled people so often must contend: isolation, exclusion, indifference, resource scarcity, financial insecurity, and vulnerability to abuse. Such indignities have nothing to do with a state of being disabled. They have everything to do with a society that devalues human beings who are not typically able-bodied.

In such a society, we must not avail people the option of ending their lives because they have internalized a fear and hatred of disability. Instead, we must love and support people through the process of dying, a process that comes to all of us.

After all, the decision to end one’s life does not take place in a vacuum. It takes place in a society that devalues those who are fragile, dependent, and vulnerable. If, as a society, we communicate that disability is undignified, that true worth derives from independence and “productivity,” and that we support suicide for those on the “wrong” side of the equation, how many people can bear up against that sort of thinking and make a truly independent, empowered decision at the end of life?

How many people, in the midst of the dying process, are even aware that the value system in play is arbitrary and prejudicial?

Certainly, there are provisions in the proposed bill that seek to ensure that people make decisions free of outside pressure, but realistically speaking, such safeguards provide no guarantees. A person in a weakened physical condition, dependent upon family members for housing, medicine, transportation, and care, is unlikely to tell a doctor that the people upon whom he or she depends are exerting pressure to end it all.

This kind of pressure can become magnified when money is at stake; family members have been known to feel that it is better to safeguard an inheritance than to spend it on expensive care.

Given that family members can feel this way, imagine what pressure the insurance companies would bring to bear upon a person when suicide is an option. When people who are non-ambulatory and dependent are considered to have lives without dignity, it is not unreasonable to assume that, in a healthcare economy of scarce resources, cost-benefit analyses will come out in favor of those considered “more deserving” — that is, those who have the potential to survive and to become “productive” once again.

Treatment will be denied people considered unworthy of it, but suicide will always be covered.

Would such decisions contribute to the dignity of anyone with a serious medical condition? Not by a long shot.

A number of Vermont disability and healthcare groups oppose physician-assisted suicide, including the Vermont Center for Independent Living, the Vermont Coalition for Disability Rights, the Vermont Medical Society, the Vermont State Nurses Association, the Vermont Organization of Nurse Leaders, and the Vermont Alliance for Ethical Healthcare. National organizations such as the American Medical Association (AMA), the Disability Rights Education and Defense Fund, and Not Dead Yet also oppose it.

Please add your voice to the chorus of opposition to the “Death with Dignity” bill. Let your legislators know that its provisions threaten to deny each of us the dignity that we deserve at the time of our greatest need for the compassion and respect of others.

We are all fragile. We are all vulnerable. And we all deserve to live in a society that respects and safeguards the inherent worth and dignity of every life.

© 2011 by Rachel Cohen-Rottenberg