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.