A breath-taking state of affairs
Like most people working in the field of mental health, I am well aware of the stigma associated with schizophrenia as well as the appalling 15-20 year reduction in life expectancy that people with this diagnosis face (e.g., Laursen, 2011; Hennekens et al., 2005). However, I was still taken aback by an issue raised by a recent paper by Okayasu and colleagues.
The paper reports on a 35-year-old man diagnosed with schizophrenia who had severely damaged lungs, due to swallowing detergent powder during a psychotic episode (aged 22), and was now in need of a lung transplant. His psychotic symptoms were controlled by antipsychotic medication, and he was living as an outpatient and adhering to his medication.
What troubled me in the paper were the issues arising in the debate by the Lung Transplantation Committee regarding whether or not to allow this man a lung transplant, and the reasons given by those who were opposed to the transplant. Here are some quotes from the paper:
- “Those who opposed lung transplantation to the patient questioned whether this was the most appropriate use of an invaluable medical resource, namely, the lungs of a brain-dead donor”
The clear implication here is that there is a more ‘appropriate use’ for the transplantable lungs than giving them to a person with a diagnosis of schizophrenia even when they meet potential criteria of having their symptoms under control and adhering to medication. The question then is why might the Transplantation Committee think someone may be more ‘appropriate’? The answer to this appears in a further quotation:
- “The patient had never been employed, and finding a job would not be expected after transplantation, and thus, a lung transplant to the patient would make only a minor social contribution”.
Leaving to one side the huge issue about organs being allocated according to who can make the greatest social contribution, and moving beyond this specific case, this quote raises a more general worry that that a person diagnosed with schizophrenia may be judged by a Transplant Committee as being unlikely to work again, just because they have a diagnosis of schizophrenia. Although a recent study found 73% of people with schizophrenia had no employment activity, a substantial number clearly do. I personally know plenty of people who have received a diagnosis of schizophrenia and have gone on to make huge contributions to society, in particular through their advocacy and training work. Furthermore, when we consider that reasons why many people with schizophrenia cannot find employment is due to stigma, prejudice and a lack of help, is it then fair to deny them organ transplants when society plays a role in preventing them from getting a job in the first place? Furthermore, do we really think that just because a person with schizophrenia doesn’t have a job that they are making no useful contribution to society? Undertaking voluntary work, raising a family, being a parent, son, daughter or friend, for example, are all important contributions to society.
Another reason given for not considering organ transplant for the patient was:
- “If the patient was to commit suicide following worsening of psychiatric symptoms, a precious medical resource would be wasted”.
There are numerous problems with the quote above. A general point can be made that this quote suggests that if a person with schizophrenia has just killed themselves then the main concern is not this tragic waste of an inherently precious human life, but that fact that a ‘precious medical resource’ has been wasted. In terms of schizophrenia specifically though, is it accurate or fair to presume that people with this diagnosis will commit suicide? There is indeed an elevated suicide risk in schizophrenia, with people with this diagnosis having a 5% lifetime risk of suicide (the leading cause of death in people with schizophrenia is actually coronary heart disease, which more than two thirds die of). However, should a 5% risk mean people diagnosed with schizophrenia are denied organ transplants? Furthermore, we may ask why people diagnosed with schizophrenia kill themselves? Of those who do commit suicide a key reason appears to be a loss of social relationships, in which case it is in part society which lets the person down and contributes to suicide. And then society has the audacity to blame the person themselves, and to deny access to organ transplants to others with the the same diagnosis on this basis?
This paper by Okayasu and colleagues really opened my eyes to the struggle and stigma people diagnosed with schizophrenia face regarding getting organ transplants. Their paper also cited an older study from 1991 which reported that 92%, 67% and 73% of heart, liver and kidney transplant programs respectively considered the acute phase of schizophrenia an absolute contra-indication for transplantation. Furthermore, 33%, 15% and 7% of these programs respectively, did so for even for people with controlled, ‘chronic schizophrenia’.
So from this I guess we would probably expect there to have been only relatively few organ transplants given to people diagnosed with schizophrenia. Perhaps a few thousand transplants in all?
In fact there have been so few organ transplants given to people diagnosed with schizophrenia that the authors of the paper from Japan could only list seven such transplants reported since 1994. Seven! In eighteen years!
Why is it seen as undesirable to give people diagnosed with schizophrenia transplants? I have argued above that the reasons based around unemployment and suicide are not valid reasons for imposing a blanket disqualification for people diagnosed with schizophrenia, however another argument used is that such people fall into the category of having:
“Psychiatric or psychological conditions associated with the inability to cooperate or comply with medical therapy” which “are an absolute contraindication for lung transplantation according to the International Guidelines for the Selection of Lung Transplant Candidates”
However, firstly many people diagnosed with schizophrenia do comply with their medications (such as the gentleman reported in the current paper). Secondly, those who do not comply typically do so because they do not accept the necessity of pharmacological treatment or ‘lack insight into the disease’. It seems highly unlikely that this reason would be transferable to post-transplant medications, which are likely to be seen as necessary by everyone. Furthermore, antipsychotic medication is not effective for a number of people diagnosed with schizophrenia, and some may prefer to find other ways to cope instead. As there are notable side-effects of antipsychotic medications, why would people keep taking it in the two aforementioned situations? We may therefore ask if there is any actual evidence that people diagnosed with schizophrenia do not adhere to post-organ transplant medication, or if this just a prejucide?
In addition to the general arguments I have made above, which suggest that a diagnosis of schizophrenia should not be an immediate disqualification for organ transplant, the study of Okayasu and colleagues not only adjudged that the patient under consideration was actually suitable for a lung transplant, but concluded that:
“schizophrenia should not be considered an absolute contraindication for transplant and that patients with schizophrenia can be successful recipients after appropriate case evaluation, pre and postoperative psychological assessment and management, and family social support… we did not find a reason for eliminating a lung transplant as a treatment option solely because the patient had schizophrenia.”
Still, the fact that this argument even had to be made in the first place indicates that current transplant policy lies in a dark place.
Have a heart?
Let us look at another example which argues against the prejudicial idea that people diagnosed with schizophrenia should not be eligible to receive organ transplants.
In a 2005 paper, a case report was presented of a 37 year old African American man (Mr A.) who had a diagnosis of schizophrenia and who eventually received a heart transplant which had “successful medical and psychiatric outcomes”.
The authors start their paper by noting that “having a diagnosis of schizophrenia is an automatic exclusion criterion for heart transplant in the majority of transplant programs worldwide”. They then go on to describe how their paper illustrates:
“the case of a young man with schizophrenia who was initially denied a heart transplant because of assumptions about his psychiatric vulnerability, his ability to communicate, and his likelihood of complying with complex posttransplant treatment. There was little objective information to support these assumptions, and this article describes how we brought this case before the ethics committee of the hospital and succeeded in overturning the initial rejection.”
As a brief aside, it is notable that shortly before Mr A was deemed to need a transplant, it is reported that he “had multiple somatic complaints, which were attributed to his psychiatric illness” reiterating the observation that people with schizophrenia may have the genuine physical pains they report dismissed as being delusional beliefs (see McCarthy-Jones et al., in press)
Returning to the transplant issue, as with the previous lung transplant example, it is again interesting to note the process surrounding the decision reported in this paper to give Mr A a heart transplant.
“The consultation-liaison psychiatrist for the heart transplant team was contacted and asked to evaluate Mr. A. The consultation service felt that given Mr. A’s limited ability to communicate clearly, the presence of schizophrenia with persistent psychotic symptoms, the possibility of further psychotic exacerbation secondary to immunosuppressive medications, and the questionable ability of Mr. A to adhere to the required intensive medical follow-up, Mr. A would not be a good candidate for a transplant”.
“The heart failure team felt that Mr. A’s prognosis was very poor without a transplant and, since this was denied, he had only months to live. At this point, all of Mr. A’s treatment teams, including his psychiatric treatment team, accepted the decision that he was not eligible for a heart transplant, and preparations were being made to keep Mr. A ‘as comfortable as possible’ for the remainder of his life.”
We then hear how:
“With the overwhelming emotion evoked by Mr. A’s impending death, his clinicians began to question their own initial acceptance of the decision that Mr. A was unfit to be a transplant candidate”
As such, the Ethics Committee reviewed Mr A’s case. They concluded that
“the only criteria for denying Mr. A a heart transplant were 1) that the transplant would not significantly improve the quality of his life or 2) that he could not comply with the rigorous treatment protocols and the follow-up care required after transplant”
They then decided that neither of these criteria was actually applicable to Mr A:
“The first criterion was ruled out because Mr. A had no other significant medical problems. The second criterion was ruled out because Mr. A had a supportive family, a psychiatric treatment team, and about 80 fellow patients who were more than willing to do whatever was necessary to help Mr. A comply with posttransplant care” (italics added).
The emotion evoked by the wonderfully moving gesture of a huge number of Mr A.’s fellow patients, as well as his mental health team, supporting him should not blind us to the dark side of this though. It took what we can approximate as a team of 100 other people supporting him to sway the committee. Would someone without a diagnosis of schizophrenia need 100 people to advocate for them in order to be eligible for an organ transplant?
Mr A was deemed suitable for a transplant and received one. One week after his discharge from hospital:
“he attended the clinic Christmas party wearing a surgical mask. The staff and patients were instructed not to kiss or hug him because of his immunosuppression. When he walked into the clinic on his own, a great cheer erupted.”
It is hard not to be deeply moved by this, and we are brought back, as I have argued elsewhere, to the role of love in all aspects of psychosis. One lesson we could take from all of this is that people diagnosed with schizophrenia will only receive hearts if others are willing to open their own. However, to conclude this would be wrong-headed, sentimental paternalism. 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 transplant, just as most of their fellow human beings without schizophrenia diagnoses have. The current situation could be perceived as a murderous travesty born of prejudice and therefore it needs to be changed, now.
Simon McCarthy-Jones
www.simonmcccarthyjones.com
(with thanks to my wife Rose for her help in writing this blog)
Notes:
For those of you specifically interested in the experience of ‘hearing voices’ (auditory verbal hallucinations), two issues come out of the case of Mr A. First, after his transplant Mr. A’s auditory hallucinations persisted, suggesting that hearing voices should not form a barrier to receiving a transplant. Secondly, the authors note that Mr A had also been increasingly able to “identify and describe the nature of these hallucinations, all of which relate to the theme of gender confusion.” This suggests the physical and psychological benefits of the transplant allowed him to engage with and understand the content/meaning of his voices, in line with the idea that voices may have meaningful messages for the life of the voice-hearer (see Romme et al., 2009).