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Do Schizophrenics Deserve Organ Transplants? Some Docs Say No

Posted: 06/26/2012 7:16 am

Two emails I received days apart illustrated just how badly those with schizophrenia are treated by the medical system compared to others.

The first email was from a friend telling me how her 93-year-old mother-in-law had been taken to hospital by ambulance in the middle of the night initially for heart problems. It turned out that the heart problem was actually caused by a long standing and undiagnosed bleeding ulcer and by the fact that her artificial hip was infected and had been for quite some time. Her hip was replaced and she was on the mend receiving excellent medical care.

My next was from Erin Hawkes, a neuroscientist with schizophrenia and the author of When Quietness Came: A Neuroscientist's Personal Journey With Schizophrenia. The subject line of her message was "read this" with a link to the Centre For Medical Humanities blog and an article entitled "do people diagnosed with schizophrenia deserve organs?" Erin did not offer an editorial comment, she didn't need to. Just the link.

The article, by Simon McCarthy-Jones, begins with "like most people working in the field of mental health, I am well aware of the stigma associated with schizophrenia... However, I was still taken aback" by this issue. He then went on to describe a discussion in a paper about a 35- year-old man in Japan who needed a lung transplant. The man had schizophrenia,was living in the community and his symptoms were controlled with medication. He had badly damaged his lungs at age 22 after swallowing detergent during a psychotic episode. The paper dealt with a medical ethics debate on whether he should be allowed to have a lung transplant.

Those opposed to the transplant wondered if this was the most appropriate use of an invaluable medical resource. It was argued that this individual had never been employed and finding a job would be out of the question after a transplant. The committee also wondered if this person might commit suicide as many with schizophrenia do and then the lungs would be wasted.

The Japanese paper quoted a 1991 study that showed that 92 per cent, 67 per cent and 73 per cent of heart, liver and kidney transplant programs consider that having acute schizophrenia is grounds for not qualifying for organ transplants. Even for those with controlled chronic schizophrenia, 33 per cent, 15 per cent and 7 per cent of programs would deny a transplant. In fact, so few people with schizophrenia have received transplants that the Japanese authors of the paper could only find seven people with schizophrenia since 1994 who had even received a transplant.

The Japanese ethics committee finally decided that this person could receive the transplant but the fact that it had to even be debated lead McCarthy-Jones to conclude that "transplant policy lies in a dark place."

That was Japan, so what about North America? A 2005 paper cited in the blog dealt with the plight of a 37-year-old African-American man with schizophrenia. He needed a heart transplant but that was initially denied because it was assumed that his schizophrenia was a vulnerability, that he would have difficulty communicating, and that he would likely not comply with the complex instructions post transplant.

Without a new heart, this poor man only had a few months left to live so plans were made to keep him as comfortable as possible while awaiting death. The hospital ethics committee reviewed the decision to not give him a transplant and decided that the only reasons to deny him a heart were that:

  • the transplant would not significantly improve his quality of life and
  • he could not comply with the complex treatment regimen required after the surgery

They found that neither of these conditions were met in his case. His life would improve with a new heart and, he had both a supportive family and psychiatric treatment team and about 80 fellow patients had come forth and were willing to do whatever was required of them to help him comply with his post-surgical care. As McCarthy-Jones said, it took about 100 supporting people to volunteer so this person could get a transplant.

Now, let's go back to my friend's 93-year-old mother in law. No one questioned investing the huge resources and money that she needed to get her well. Artificial hips aren't cheap. And, if it is a question of being able to work as it was for the lung transplant recipient, well she hasn't worked in years and never will again. She is collecting a pension. Much like the 37-year-old African-American man with schizophrenia, she could have been made comfortable until the end came but I really doubt if that was ever considered. And, 100 people did not have to come forward to ensure she would get the care she needs in future. She will get the care she needs from the health system.

To again quote McCarthy-Jones, "people diagnosed with schizophrenia should not be dependent on the good will of others for an organ transplant, they should have the right to be eligible for organ transplants, just as most of their fellow human beings without schizophrenia diagnoses have."

And to that I will add that this applies to all of the medical care for those with schizophrenia so that they do not continue to die 15-20 years before everyone else as is the case now because they do not get the same level of medical care that the rest of us enjoy. A topic covered in one of my earlier blogs.

McCarthy-Jones conclusion that "this current situation could be perceived as a murderous travesty born of prejudice and therefore it needs to be changed, now" applies to more than just transplants. It applies to how our society treats people who are ill with the most serious of mental illnesses.

 
 
 

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This user has chosen to opt out of the Badges program
09:52 PM on 07/02/2012
Deserve may be the wrong term. The determination of their appropriateness for transplantation should be determined on an individual basis.
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Parade Keegan
I Can Hear You
10:36 PM on 06/28/2012
One shouldn't set a medical standard using Japan, as Unit 731 completely and historically negates any humanity from that sector of the world IMO. In setting medical standards "humanity and compassion" is key.
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June Conway Beeby
09:09 AM on 06/27/2012
Why are some humans unlucky enough to develop no-fault chronic brain diseases and then be designated to societies' garbage bins-- like throw-away flotsam and jetsam in our oceans?.
When other countries have done this to mentally ill and mentally challenged citizens we have recognized them as barbarians of the world. And we demand justice. We already know that brain-diseased lives are shorter than average, as the author has pointed out. This seems to be enough evidence to show the rest of us just little valued their lives are and the scant care, compassion and consideration given them in their own country.

This abandonment of them includes an only passing interest in the scientific brain research that could free them of their diseases. Why do we disregard the pain and suffering of our seriously mentally ill citizens? Are we becoming barbarians, too?
12:22 PM on 06/26/2012
Your article has a fatal flaw, in that the case you site involved a 37 year old African-American. The question in the USA is not whether the man deserved a heart transplant, but whether or not he had the insurance to pay for it. Everywhere in the world, the wealthy can buy better care, but in the USA this is particularly true. American hospitals regularly 'dump' patients who have no insurance or inadequate insurance.

Should a patient's schizophrenia stand in the way of an organ transplant? This has to be considered in each case individually, of course. If the patient is stable and can cope well with taking medicine regularly, then their schizophrenia shouldn't be an issue. If they are subject to lapses, especially where they become paranoid about medicine and the medical profession in general, then they might be considered to be very poor candidates indeed.
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11:59 AM on 06/26/2012
I can only speak as a person who received a double-lung transplant. I do not suffer from a mental illness, but I can tell you the mental fortitude that was required of me during the months following my transplant was enormous. The morphine alone caused hallucinations, delusions and violent dreams for weeks. The anti-rejection and immune-suppressants wreaked havoc with my body for months. For months I had difficulty holding down my medication.

So it makes me wonder how a person on anti-psychotic medication would be able to cope. Would they even be able to take their medication for their mental illness?

By no means am I stating that a person with schizophrenia not be able to receive a transplant. I just know from personal experience that even a person with no mental issues can have great difficulty coping.
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11:44 AM on 06/26/2012
Here's why I hope socialized medicine never reaches the US. It's the total loss of control one has over their own destinty, their own control over their body, their health care. Instead pointy haired intelectual sounding strangers who never met you give the doctors the thumbs down to your own life. This is the same rational used in the 1920's in Germany to justify the killing of the mentally ill, infirmed, and terminally ill. They were taking up valuable resources that could be best used by the healthy.

Funny how given enough time, history comes full circle.
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DJ Jaffe
Founder, Mental Illness Policy Org.
10:48 AM on 06/26/2012
Interesting post. It gets to an important question: Do we want to prioritize the most seriously ill or not? Do we want to use limited resources on the greatest number or those most in need or those most likely to increase productivity with the resources? I think it should be debated. Thanks for starting it.
DJ Jaffe
http://mentalillnesspolicy.org
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arachne646
No more hurting people--Peace
10:26 AM on 06/26/2012
Those of us who have mental illnesses other than schizophrenia are treated quite differently than "those people". Shouldn't the health care system be the last place that stigma against people who have mental illness exist? Of course education and money don't remove prejudice and stereotypes. The knowledge that, contrary to popular belief, people with schizophrenia aren't more violent than "normal people", doesn't keep the health care system from viewing them as a little less than real people. Often, people with schizophrenia, even when treatment is successful, don't have a return of their social skills, emotional range, and "personality" which they had before the onset of their disease, so usually it takes longer to get to know someone who has schizophrenia than the medical care system allots to form a doctor/patient relationship. Another cause of the discrimination is the stereotype doctors learn in medical school of schizophrenia as a "disease of the poor" like TB. Poverty and mental illness is certainly related. Disabled people often can't work without adapted environments, and people with schizophrenia that is well-controlled can certainly work, in the right job. People with schizophrenia are just as valuable and have the same rights any of us have to healthcare. Of course, the US never signed the UN's Universal Declaration of Human Rights, so in Canada and the rest of the world, people with schizophrenia have the same right to healthcare as everyone else in society, but don't always get it.
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DL McCracken
Still learning after all these years..
08:59 AM on 06/26/2012
Do people with Autism deserve organ transplantation? How about those dealing with chronic depression? Or OCD? I rest my case.
08:45 AM on 06/26/2012
As the mother of a 25 year old schizophrenic son, we are both only too aware of the stigma associated with this illness. Despite my son being diagnosed at the age of 16 years, and the loss of so much of his mental abilities, he has just completed an architectural drafting course at a community college. Our next challenge will be finding a job that will accommodate his particular needs. I expect to once again be faced with the stigma that has faced us in the past. If given the chance, I hope his life will be a long life filled with the pleasures that the rest of us enjoy. If he should become ill and require an organ transplant, I would absolutely expect that he be treated the same as any other patient. He is a kind and loving person, and has faced many obstacles in his life so far. I would hope that this discrimination would not be another one he would have to face.