Suicide, assisted suicide, disability rights and FEN.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Allison Wallis, wrote an indepth essay that was published by Aljazeera on August 8 titled: Death doulas and end-of-life rights: The debate on assisted dying.

I don't agree with much of Wallis's essay but she uncovers significant information related to the Final Exit Network (FEN). Wallis is from Hawaii where assisted suicide has been legal for several years.

Wallis begins by explaining her story that led to her interest in the issue she writes:

A few years ago, I spent a lot of time in bed. I had developed holes in my dura – the thick covering that surrounds the spine and brain – that were leaking cerebrospinal fluid. Every time I would sit up, I would get hit by a wave of dizziness and nausea, and the pain in my head from low brain pressure would become unbearable. Many times, I would faint, passing out on the floor or in bed.
...
Every single day, I felt like a burden. The pain never relented. Many of those days, I wanted to die.

My life is exponentially better now. I am no longer suicidal and have no remaining ideation. But I do still think a lot about the ethics of suicide – and especially of medical aid in dying (MAID), a practice legal in a small but growing number of states which allows a doctor to write a fatal prescription for a sick person who feels sure they want to die.

Wallis writes that she lives with chronic pain and supports the concept that someone should be able to end their life when they are dying or life becomes difficult. She states:

I decided I wanted to know what it would mean to choose to die with the help of my doctor under Hawaii’s MAID law: the Our Care, Our Choices Act. I spoke to death doulas, lobbyists and doctors, and one man who operates in the margins of the law by helping people learn how to end their lives.

Wallis examines opposition to assisted dying from the disability perspective.

This opposition means they also oppose limited laws like the Our Care, Our Choice Act in Hawaii, which allows terminal, mentally competent residents with less than six months to live the right to request medication that will end their life. It is the beginning of a slippery slope, activists say. Many disabled people have been told that they were terminal, but are still alive decades later. In January in Canada, a 35-year-old father named Chris Gladders died with medical assistance in a filthy room in a nursing home that investigators found to be poorly managed and neglectful. Disability rights advocates held the case up as an example of exactly what they were worried about. If he had been able to live at home, with his family and skilled care, would he still be alive today?...

The National Council on Disability (NCID) strongly opposes MAID and has produced a 70-page document (PDF) that outlines its concerns. These include insurance companies that have refused to pay for possibly life-saving care, but that did offer to pay for much less expensive lethal drugs. The Council also argues that medical science is not perfect and that disabled people are sometimes called terminal when they are not. People considering MAID may be living with demoralisation, caused by the internalised feelings that they are an expense or a burden to loved ones. Most physicians are not trained in recognising or addressing demoralisation in their disabled patients. Instead, these physicians may reinforce those feelings by conflating disability with a terminal illness or poor quality of life.

Wallis explains how disability advocates want better care not death.

In recent years, in response to the opioid epidemic, the Centers for Disease Control and Prevention (CDC) has been cracking down on the prescription of pain medication – even though the treatment of pain is considered a civil right. As a result, it is easier for some people who live with severe pain to obtain deadly MAID drugs than to obtain opioids – the only type of medication that may help with their pain. What disabled people need instead of aid-in-dying laws, the Council suggests, is adequate long-term care. Palliative care and pain medication that is fully funded and easily accessible. Home health aides that are affordable or paid by insurance. Instead of being encouraged to die, we need the ability, through support, to live the best life possible.

Wallis then interviewes Brian Rudder from the Final Exit Network (FEN):

Brian Ruder believes that a person should have a civil right to end their life on their own terms. He is with the Final Exit Network, a nationwide organisation that provides training for people who want to end their life. Clients do not need to be terminal. To request FEN’s services, you must write a letter and send in your medical records to be reviewed by a board of doctors. ...

When I called Brian to talk about it, he insisted that FEN does not assist or encourage suicide, but only provides information about various possible methods. I found it hard, however, to understand how a volunteer flying out to Hawaii to give a lesson about dying to someone who may be suicidal is not encouraging the act. He also said that FEN does not accept people with mental illness. Not yet, anyway. And he stressed that the group turns away applicants whose families are not on board, as well as people with severe medical issues who do not think they are within a year of wanting to die. These people are given a reference to a suicide how-to book. They are not given a referral for mental health care.

One of the reasons I like Wallis's article is that she uncovers some of the FEN practises. FEN is an assisted suicide group that assists in the deaths of people who don't qualify for death under the state assisted suicide laws or assists suicides in states where it is illegal. FEN promotes a "suicide how-to book" for people when they will not assist the death. In other words they will advocate for suicide in cases when they won't approve the suicide.

Wallis asks Brian whether FEN would have helped her to die when she was at her low time. He told her:

“Maybe,” Brian said. The medical board would have had to review my letter and medical records. While FEN does not approve people with solely mental health issues, they do not see depression as a barrier to approving people who also have serious health problems. He seemed to dance around my question a bit, but I got the impression that, if I had asked for FEN’s help to die, I probably would have been accepted.

Brian also told Wallis how FEN supports assisting a suicide for people who think their life is complete (completed life). Wallis responds by writing:

Brian seemed like a nice guy. Like he would be a good grandfather. My disabled friends would call him a serial killer. I left the interview feeling very uneasy. That feeling has not gone away.

Wallis then writes about death doulas, an "ideal" assisted suicide death and her memories of her grandmother's natural death. She ends her essay by stating that she supports disability organizations opposition to assisted suicide but she also supports the option of assisted suicide. Wallis is clearly inconsistent and divided.

I appreciate how Wallis shows how FEN is an extremist group. They say that they don't assist suicides but they assist in every way possible in suicide. Wallis shows how FEN will not approve everyone for assistance in suicide but when they do not approve they assist by providing "how to" suicide information. Finally she shows how FEN leaders support the concept of "completed" life and how they are willing to assist the suicides of people who have suicidal ideation.

I hope that Wallis will notice the inconsistency in the assisted suicide ideology, an ideology that enables other people to approve and be involved with causing death. These are dangerous concepts for people living in a difficult time of their life.

It is far more consistent to believe that nobody in society has the legal right to be involved with killing another person. True equality recognaized the value of every human life.