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Wednesday, August 10, 2016

States Worse than Death: I Don't Think So.


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: http://archinte.jamanetwork.com/article.aspx?articleid=2540535

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: https://briannasuslovic.com/2016/07/05/academia-accessibility-being-spoken-for/ 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.

12 comments:

SCFS said...

Hey there. I disagree with your statement about there being No Good Death. Since we are going to die someday, there is definitely better and worse ways to face the experience! I have a number of friends who have recently nursed their very elderly parents through their final days, and I know that it was a comfort to them that their parents died at home, peacefully, naturally, cared for by family, at the very end of life.
Of course none of these very elderly parents had any sort of "help," they were all in their 90's and on hospice care.
However I do agree with you about your concerns on the assisted suicide issue. I work with a number of children who have some or even all of the issues mentioned as being "worse than death" and they all seem to be valuing the lives that they have. Certainly their families love them, and society has decided that their lives are valuable enough to provide for special education and other services. I enjoy your Blog From Susie Forster

Unknown said...

I would rename that study "Hospitalized people without disabilities hold very negative attitudes about disabilities" or perhaps "Survey shows non-disabled patients and doctors both hold ableist attitudes about disability." But what do I know? I'm just a disabled doctor. . .

Spikeabell said...

Seriously! Until I've tried all of the above I wouldn't be able to comment... though worse than death? How cheaply do these people take their lives? Unknown I agree with your renaming of the study.

Little Red said...

Great piece! I too noticed the that about 30% of people also think that a nursing home is a fate worse than death, and yet that does not stop us from moving a majority of elders into nursing homes. These are the contradictions that we need to keep highlighting so as to push back on the pro-death propaganda.

James Russell said...

Good point Little Red.... Quality nursing homes, well-trained and well compensated nursing home staff, caring palliative care, and effective pain management techniques are lacking in America and here in Canada. We must not allow 'despair' to drive people to believe that euthanasia is the only option for escaping pain and suffering. The answer? Support blogs like the Bad Cripple, vote, run for office, write letters to your local politicians.

ParaTir Quebec said...

Not only do we "put" people in nursing homes, but people GO to nursing homes, and that includes all kinds of individuals who have vociferously stated that they would NEVER go to such a place.

Simple fact: people want to live, and WILL live, even under very distressing conditions.

Suicide is a marginal phenomenon ; it should be approached studied and if need be accommodated as such. But it should never be allowed to impinge upon normal medical practice or expectations of normal behavior.

The utilitarian idea of normalizing medical suicide is just an authoritarian bean counter's wet dream. It can never happen in a free economy, but it does represent a clear and present danger in the "social democracies" of Europe, Canada etc.

feel the love,

Gordon From Montreal

Unknown said...

This is an interesting read. I agree with your perspective that what people's ideas of "fates worse than death" would change rapidly were they actually to experience these things. Survival is our strongest instinct and what people do to achieve it is remarkable.
I also believe strongly that the right person to advocate for an individual is themself. Only they know what is truly right for them. However, as an intensive care nurse, I feel strongly that quality of life (primarily relating to the ability to make one's own choices and lack of suffering), not quantity, is key. I am aware that my idea of "suffering" is unlikely to be the same as the next person's, and that it is critical to work WITH the person rather than FOR them; goals of treatment and care are best agreed upon but this is not always possible.

I disagree completely with your statement about there being "no good death". Unless you have actually witnessed, studied or experienced death, how can you advise such a thing?
This is only your opinion. I've seen a lot of death so i will say outright that your opinion of death is wrong and stems from your fear that someone else will choose death for you (which I also think would be the wrong thing). The only thing a person can truly control is THEMSELF. Not anyone else. Most of humanity's problems stem from this misguided belief, and the belief that others can or should control them.
Death is a normal, natural process that all living things will encounter.

you are in control of your own life. Nobody else is. Embrace that.

I wish you peace and love

william Peace said...

Unknown 9/13/16 Your comment reminds me why I fear, trust fear, accessing health care. I have been paralyzed since I was 18 years old and health care providers have deemed my body pathological and my quality of life to be sub standard. I have been offered assisted suicide and been consistently provided inadequate pain relief medication. The assumption is disability and pain go hand in hand. The assumption is because I am paralyzed I am unemployed and poor. Exactly how can I work with health care professionals when at every turn I am disrespected and alienated and my quality of life deemed inadequate? As for no good death, I grew up on neurological wards and spent a decade going through the medical mill before modern diagnostic tools we take for granted existed. Most children I are up with died and have lost multiple close friends and family members. You have individualized disability and believe in the idea that you can control your life. In the land of disability others with no knowledge of disability make up the rules health care professionals are required to follow. Without any representation people in disability rights embrace the slogan nothing about us without us. I appreciate your comment and insight. I hope you will read my words and try to think that people with a disability are part of a disenfranchised class of people that have been harmed by health care workers and deemed a drain on profits by insurance companies. Our existence is very much in danger when we try to access health care.

binks webelf said...

What we're speaking of is fear-- fear of old age and suffering and disability and death, which are usually hugely different that what we imagine or fear. Giving government even more control on what a "worthwhile life" is, as well as death-rationing? Insanity, all to avoid fear. I've dealt with lots of sick, disabled, and dying people. I myself suffer from a range of health problems. For most of us, it's just "one day at a time"-- good days, bad days, stuff you get used to.. but not as most people fear or imagine such life is like. We have to stop imagining medicine and government are the ultimate powers & arbiters of how we live, or even whether we *should* live. As economies shrink-- putting pressure on government health-rationing-- and as the older population grows, these realities are going to deal with us, if we don't start to deal with them first. Good life? Good death? All possible.. especially with a little planning, good doctoring, and faith.

SCFS said...

I agree with Binks Webelf, and would go farther to say that the root of our fear of disability lies in our fear of abandonment. Our fear of being a burden is rooted in our fear of abandonment too. We fear that we are not worthy enough to merit the service that a disabled person needs to survive. Perhaps some people feel resentful to care for others, so that when they need care, they are certain that they are the object of similar scorn & resentment.
In my experience, people's need to love other people far outweighs our need to receive love. That is why we miss people and grieve for them when they are absent... Our love has no destination and it hurts to keep it inside. When a person commits suicide, one of the cruelties of their actions is that they have denied those around them the opportunity to give them love and caring. A good death is defined as being surrounded by loved ones when death comes uninvited, but not unexpected. Suicide is more desperate than that.

Cautionary tales said...

Agree. Fear of some imagined future disability, aged related or not, is fear of abandonment.

Which is not an irrational fear, unfortunately, in western society.

What is needed is a complete paradigm change, where elderly and disabled are treated with respect, where if possible the elderly are able to stay at home with family with some external assistance, not shoved into institutionalised nursing homes. Sadly it is hard to imagine how Western society can change.

However it is not impossible. When did you hear of a traditional elderly Asian person requesting euthanasia? I would argue this is due to the cultural reverence for the aged which allows those of advancing years to live their lives as acknowledged and valuable human beings, not the forgotten old.

Houston Huffard said...

12 years stroke (hemiplegia) survivour.
I had the greatest shock of my life when i had a cardiac arrest 12 years ago and slumped into comma. I was in comma for a year and three months before i was able to open my eyes. I stuttered with speech and and i noticed i could not move the full right side of my body my hands and legs this was when the doctor told me i had stroke (hemiplegia). I was bedridden and kept in a wheel chair when i need to move for 10 years more and it became worse because i started having memory failure i hardly remember anything. The condition was debilitating and even my neurologist could not help me with his several therapy. My wife came in one day with a medicine she wanted me to start taking that i will be okay, i was reluctant because i had given up already and was waiting for my death day. she talked me into taking it telling me how much she love and cares about me and how she and the kids are gonna miss me. I took the medicine for 3 months as recommended and my condition improved i was able to walk and move those parts affected by the stroke and today i have fully recovered after 12 years of horror. Do not die because of ignorance you too can be well again. just contact him on josephalberteo@gmail.com for more information about his medicine. thanks for allowing me share my story.