States worse than death: I don't think so.

This article was published by William Peace on his Bad Cripple blog on Wednesday August 10.

William Peace is a Syracuse University Professor and disability activist 

William Peace

JAMA Internal Medicine has been in the news and references to a recent article abound on various social media platforms. Here I refer to "States Worse than Death Among Hospitalized Patients with Serious Illnesses" by Emily Rubin and other researchers at the University of Pennsylvania. Over eight months a team of researchers surveyed 180 patients who had been admitted to a hospital in Philadelphia with serious illnesses that included heart and lung disease. All the patients interviewed were 60 years and older. The study was conducted between July 1, 2015 and March 7, 2016. None of the patients had limitations on any life sustaining treatment in their electronic medical records. Researchers asked these patients to hypothesize whether they would prefer to die than be in a progressively worse state of being. In typically terse language Rubin wrote:

Death is a patient-centered outcome because nearly everyone wishes to avoid it. Despite this general preference, however, studies among healthy outpatients and those with serious illnesses show that a significant minority, and sometimes a majority, rate states such as severe dementia as worse than death. Link to the study.

What conditions were patients asked about? Conditions that were deemed worse than death include:

Bowel and bladder incontinence.Relying on Breathing machine to live.Cannot get out of bed.Confused all the time.Relying on a feeding tube.Need care all the time.Living in a nursing home.At home all day.Moderate pain all the time.In a wheelchair.

Below is the chart:

As the above demonstrates, about 70% of patients identified bowel and bladder incontinence, reliance on a breathing machine and the inability to get out of bed as a fate worse than death. 60% indicated being confused all the time and 55% for reliance on a feeding tube and 50% for needing around the clock care were fates worse than death. Other fates worse than death were in a wheelchair, constant moderate pain and being unable to leave home--all a fate worse than death.

Here is the kicker: none of the patients had experienced the conditions described as a fate worse than death. Yes, the patients responding to the hypotheticals posed had not experienced any of the conditions described. It seems to me if researches wanted to ask this sort of hypothetical question it would be behoove them to ask people that live with the conditions described. Instead, they did the exact opposite. This makes no sense. It is akin to asking a middle aged white man what it is like to be a black man.

As one would suspect, the study has gotten glowing reviews from those who advocate for assisted suicide legislation. This "data" has been deemed important by none other than the Economist. Under the Right to Die "What is Unbearable: Some Data about an Emotional Issue":

death really can seem preferable to a lifetime of pain and suffering. A growing movement, including this newspaper, thus seeks to legalize--with stringent safeguards--doctor-assisted suicide around the world... Asking people approaching, or threatened with death, how they feel about it, and the moment at which they would like it to come, is a welcome development. Both side of the doctor-assisted-dying debate should pay attention to it.

As an opponent of assisted suicide legislation, I am paying attention. I read the so called "data" and shook my head on wonder. People over the age of 60 were asked a series of questions that was framed as a fate worse then death. Think about what this says about the millions of people who live with these conditions. Let's review the list. I have experience with the following: Bowel and bladder incontinence, cannot get of bed, need care all the time, at home all day, moderate pain all the time, in a wheelchair. In baseball parlance I am 6 for 10. I am not sure I should be impressed with myself for living a life deemed worse than death or appalled by those surveyed. This study was not conducted in splendid isolation. The study relied on fear. Fear of physical and mental decline all humans will experience. Fear of death. This study only muddies the water in terms of end of life care and the distinction between terminal illness and disability. Terminal illness and disability do not necessarily go hand in hand. Years ago I was at a bioethics conference that had a predominance of people with a disability attending. One speaker asked how many people had been deemed terminally ill at some point in their life? Virtually every person in the audience raised their hand. This reminded of Mike Ervin aka Smart Ass Cripple. He was deemed terminally ill. Those physicians that described him as such are all now deceased decades later.

I truly shake my head in wonder when people fiercely advocate for assisted suicide legislation. It is a red herring. Those that fervently advocate for assisted suicide ask all the wrong questions. I struggle to control my bowels and bladder. This can be a messy business. But it is a management issue and not a statement about the quality of my life or the life of others. A breathing machine? Let's play very fast and loose with language. Exactly what is being referred to here? Ventilation support is a wide arc and a vague reference to a "breathing machine" is inherently misleading. Relying on a feeding tube? I know plenty of people who have used feeding tubes for extended stretches and some who are entirely dependent upon a feeding tube. This too is not a statement on the quality of life. Living in a nursing home? When this is used as a reason to believe it is a fate worse than death I consider this an indictment on the industry not the people who end up living in a nursing home. Stuck at home all day? Again why is one stuck at home? It is possible for others to visit and community living is an option. The slogan "our homes not nursing homes" comes to mind. Do I even need to broach the "use a wheelchair issue". Here is a radical idea: provide a properly fitting wheelchair that is ideally suited to a person's needs. If we did that some of the stigma associated with wheelchair use would be ameliorated. Instead, we isolate the elderly for instance in nursing homes and have them sit in a wheelchair junker that does not fit. No wonder this is deemed a fate worse than death.

The answer to end of life issues is not to legislate assisted suicide laws. The answer to providing quality end of life care requires a national discussion. There is no such thing as a good death. This too is misleading rhetoric coming from people who frame death as a right. When I read this study my first thought was people with a disability are being rendered silent. We are absent from the discussion about our life being a fate worse than death. The researchers in this study felt free to imagine what our lives are like. This happens all the time. The experience is surreal. Oh how many times I have had a biped explain disability to me with great clarity and insight that had escaped me the last 35 years. Heavy on the sarcasm here. Just today I read "Academia, Accessibility, Being Spoken For" by Briana Suslovic. (Link to her article) She wrote:

It’s a strange feeling to have your own life explained to you in someone else’s terms, isn’t it? When someone else seems to know your language better than you, and then they start translating it into bigger and scarier words, invoking authors you’ve only heard about at cocktail parties, turning your experiences into a case study for fellow scholars to feast upon. That feeling, that dissection, that intellectual erasure-while-remaining-in-the-room… it’s so hard to describe that to someone who hasn’t been through the incredibly de-humanizing experience of being told about yourself in terms you don’t quite understand.

Bravo Suslovic. This is exactly what those that advocate for assisted suicide do not want to hear. They want to render those living a life deemed "a fate worse than death" silent. Advocates that champion a so called good death impose their imagination on our reality. In reality our lives are quite good. If you want to know how to manage incontinence give me a call. If you want to know what it is like to be dependent upon others give me a call. If you want to know about moderate pain, give me a call. Exactly who is the expert here?

Lastly, please do not talk to me about safeguards in assisted suicide legislation that the Economist mentioned. All the safeguards in the world are not enough. Safeguards exist for a reason. Some lives, lives such as mine, are framed as a "fate worse than death". This makes me vulnerable. This makes many people vulnerable. I cannot speak for all people with a disability but I can say with certainty I fear accessing medical care. I fear serious illness. I do not fear the pain of being ill. I do not fear how dehumanizing being hospitalized can be. My fear is different. I fear the do gooder physician. I fear the silent assumption my life is indeed considered a fate worse than death. I fear the kind, loving, and compassionate physician that will decide I have suffered enough. I have met one such physician. I also know there are many more that exist. Please be skeptical of the data considered here. I can speak for myself and others too. We just need typical others to listen. I assure you the quality of my life is quite good. I can say the same about all those I know who have adapted to life with a disability. All typical others need to do is to read what we write about our experiences. navigating a hostile world. And please don't worry this bad cripple does not bite.