50-to-life: Why the phenomenology of ‘hearing voices’ matters

Joan of Arc at Trial

Interrogation of Joan of Arc (Delaroche)

The experience of “hearing voices” has been reported for millennia, including by people such as Socrates, Joan of Arc, and the Beach Boy’s Brian Wilson.

It can be experienced in the context of a diagnosed psychiatric disorder (e.g., schizophrenia, borderline personality disorder, PTSD, anorexia), a neurological disorder, or by people without any diagnosis who may highly value these companions.

The study of what these voices are like (formally termed their ‘phenomenology’) can give clues as to what may cause them and inform the development of ways to help people distressed by them.

An accurate knowledge of the phenomenology of hearing voices can also be of great importance for other reasons, one of which involves the law.

The case I will describe here to illustrate this point was discussed in a recent paper I co-authored with the forensic psychiatrist, Dr Phillip J. Resnick. He has previously provided consultation in many high profile legal cases including those of the serial killer Jeffrey Dahmer, the Oklahoma City bomber Timothy McVeigh, Theodore Kaczynski aka the Unabomber, and Andrea Yates. Our paper examined how knowing what hearing voices is like can help to determine whether people are faking the experience for perceived gain (formally termed ‘malingering’).

As part of this we examined the role of the phenomenology of hearing voices in the case of Senque Jefferson who, in 2004, came before the Court of Appeals of California, Third District, to appeal against a verdict he had received in a trial two years earlier; a verdict which, per the ‘three strikes law’, resulted in him being sentenced to ‘50 years to life’.

To be clear from the outset, neither that paper nor this blog aimed to give an opinion as to the veracity of the claims of the Defendant in this specific case. Instead they simply aim to show the importance of an accurate knowledge of the phenomenology of hearing voices in relation to a situation where a Defendant claims to have been having such experiences at the time of a crime.

Let’s begin with a bit of background.

 

The background

In 1994 Senque Jefferson was incarcerated in California as a result of being convicted of first degree murder and a series of armed robberies.

Approximately six years later, on the 10th March 2000, he was to be found in the psychiatric services unit of New Folsom Prison in California.

That morning, Jefferson was being escorted back from the exercise yard by two prison officers. As he was about to be put back into his cell he kicked one officer in the stomach, and the other in the leg. Jefferson was in turn then punched by one of the officers, after which Jefferson spat on both. This led Jefferson to be charged with, and ultimately convicted on, two counts of battery.

Later that same year, on the 3rd July, Jefferson was in the infirmary of Sacramento jail, where inmates experiencing a mental health crisis were housed. He was taken to a holding cell ahead of a meeting with a committee of mental health professionals to review his placement in the infirmary. Eventually the committee decided it would not see him that day, and ordered him to be taken back to his cell in the infirmary. As he was being taken out of the holding cell, Jefferson kicked one of the prison officers twice in the leg. This act formed the third count of battery upon which he was charged and later convicted on. Under the “Three Strikes Law” he was sentenced to ‘50 years to life’.

 

The defence

Why did Jefferson say he did these acts? In relation to the first incident in March, the court documents tell us that his lawyers argued that:

“As the officers placed him in his cell, [the] defendant heard “voices” outside his head. The voices told him the officers would hurt or kill him when he was in his cell, so he kicked the officers to get them off him”

In relation to the second incident in July, his lawyers stated that:

“the voices became loud while he waited in the holding cell, telling him not to leave the cell because the officers would hurt him”

More generally, his lawyers claimed that Jefferson:

“heard voices ‘everyday, all day’…The voices were usually those of women he knew when he was out on the street. They told him such things as his food was poisoned or a family member had died. At the time of trial, he was on medication — involuntarily — that he felt lowered the voices. Although the voices were powerful, he was able to ignore them better.”

 

Phenomenology and the prosecution

The first part of Jefferson’s trial, termed the ‘sanity phase’, involved establishing whether he was sane or insane. Here, Jefferson’s argument that he was hearing voices came under scrutiny. One of the court-appointed psychologists met with Jefferson and asked him to describe the voices he heard in order to “determine whether [the] defendant was faking a psychological problem”. During this Jefferson stated that his voices “were voices of ‘people that he knew in the past’ and were ‘in his ear’”.

This is where phenomenology has direct application. The court-appointed psychologist attempted to compare the location and nature of the voices Jefferson described against what they thought was the typical phenomenology of the experience. The court documents describe how, in the court-appointed psychologist’s experience:

“schizophrenics typically described voices ‘as coming from inside their head and being of either famous people or strangers or groups of people.’ She [the court-appointed psychologist] thus doubted defendant’s claims.”

But does the research literature support the court-appointed psychologist’s description of the phenomenology of hearing voices in people diagnosed with schizophrenia? Let us look at the specific issues raised by the court-appointed psychologist in turn.

 

Assertion 1: Voices are typically heard as coming from inside the head

The largest study of the phenomenology of ‘hearing voices’, published by myself and colleagues in Melbourne (McCarthy-Jones et al., 2014b), interviewed 199 patients who heard voices (81% who had been diagnosed with schizophrenia) and found that 38% heard both voices coming from inside and outside their head, 34% only heard internally-located voices, and 28% only heard externally located voices.

nd-96

Nayani & David’s (1996) findings

The largest study before ours was performed by Nayani and David (1996) who examined the phenomenology of the voices heard by 100 psychiatric patients (the majority who had a diagnosis of schizophrenia).

You can see their findings pertaining to the location of patient’s voices in the table on the right.

They found that only 38% of patients described their voices as having a voice which was located inside their head, whereas 49% of the sample “heard their voices through their ears as external stimuli”.

 

Since both these studies, a study in 2015 by Angela Woods and colleagues, of 125 people who heard voices people (with a range of, or no, diagnoses), found that “Voices with a physical location were equally likely to be external or internal”.

Clearly, a substantial number of people (with or without a diagnosis of schizophrenia) hear voices that are not located inside their head. 

This variability has led Resnick and Knoll (2008) to argue that the “location of hallucinations should not be used to determine their genuineness”.

 

Assertion 2: Voices are typically those of famous people or of groups of people or those of strangers.

Formal studies reporting on the number of people diagnosed with schizophrenia who identify their voices as being those of famous people are few in number and small in sample. For example, Leudar et al. (1997) found that 6 of 13 people diagnosed with schizophrenia said that their voices were those of public figures.

Larger studies suggest that voices are likely to be of people personally known to the hearer.

For example, Nayani and David (1996) found that “Hallucinated voices were often known to the patient in real life, indicating that they may be modelled on the memory of a real voice.” In their study 46% of patients heard voices which could be identified as likely being real, known people, such as a relative, neighbour, or doctor.

Similarly, Garrett and Silva (2003) found that 46% of patients (the majority of whom had a diagnosis of schizophrenia) “believed they recognized at least one of their voices as a specific friend, family member, or acquaintance”.

My colleagues in Melbourne and I found that 70% of patients reported that the voices they head were like those of people who had spoken to them in the past (McCarthy-Jones et al., 2014b).

The wider voice-hearing literature is also replete with examples of people hearing voices of people they personally know and have actually encountered in the past (e.g., Romme et al., 2009).

In terms of groups of voices, although Nayani and David found 57% of patients described hearing the sounds of crowds of people mumbling or talking together (in addition to individualised voices), we (McCarthy-Jones et al., 2014b) found that 53% of patients had never heard all their voices speak at the same time (like a chorus).

 

Conclusion

Doubt was cast on Jefferson’s voice-hearing experiences because they did not resemble a characterisation of voices as typically “coming from inside their head and being of either famous people or strangers or groups of people”. I would argue this is a flawed yardstick against which to measure people’s voice-hearing experiences, given the research reviewed above.

By noting this, I am not offering an opinion as to whether or not Jefferson was actually hearing voices (this cannot be determined from a review of court documents) I am simply noting that the stated phenomenology of voice-hearing used in the courtroom appears flawed.

This is just one way in which phenomenology could be used in the court room in relation to voice-hearing. For example, it could have been asked whether or not the changes Jefferson reported to the phenomenology of his voice-hearing experience after taking antipsychotic medication was consistent with the typical experience of patients.

Recall that Jefferson claimed that the:

“medication… he felt lowered the voices. Although the voices were powerful, he was able to ignore them better”

Now, consider one of the earliest reports of how antipsychotics affected the phenomenology of patients’ voice-hearing experience. A 1954 study by Elkes and Elkes found that chlorpromazine did not make voices disappear, but only made patients less bothered by them. Patients didn’t shout and scream at their voices as much. One patient stated that his voices ‘did not worry him so much’

Or take a more recent example from a statement by the respected Shitij Kapur and colleagues (2005) who explain:

“Antipsychotics do not eradicate symptoms, but create a state of detachment from them… it is widely known that for most patients antipsychotics provide only partial remission – and many aspects of psychosis as well as other aspects of the illness remain untouched. While some patients do actually achieve complete resolution of their delusions and hallucinations with antipsychotic treatment, for many patients a detachment from their symptoms is as good a resolution as antipsychotics can provide.”

It is hence clear that in situations such as that described above, a correct knowledge of the phenomenology of ‘hearing voices’ may be of paramount importance. Furthermore, dependent on the circumstances in which it is applied, it may even be a matter of life and death.

 

References and further resources

Appeal document referred to here:

References

Elkes, J. et al. (1954). Effects of chlorpromazine on the behaviour of chronically overactive psychotic patients. British Medical Journal, 2, 560–76.

Garrett, M., & Silva, R. (2003). Auditory hallucinations, source monitoring, and the belief that “voices” are real. Schizophrenia Bulletin, 29(3), 445-457.

Kapur, S. et al. (2005). From dopamine to salience to psychosis – linking biology, pharmacology and phenomenology of psychosis. Schizophrenia Research, 79(1), 59–68.

Leudar, I., Thomas, P., McNally, D., & Glinski, A. (1997). What voices can do with words: pragmatics of verbal hallucinations. Psychological Medicine, 27(04), 885-898.

McCarthy-Jones, S., & Resnick, P. J. (2014a). Listening to voices: the use of phenomenology to differentiate malingered from genuine auditory verbal hallucinations. International Journal of Law and Psychiatry, 37(2), 183-189.

McCarthy-Jones, S., Trauer, T., Mackinnon, A., Sims, E., Thomas, N., & Copolov, D. L. (2014b). A new phenomenological survey of auditory hallucinations: evidence for subtypes and implications for theory and practice. Schizophrenia Bulletin, 40(1), 231-235.

Nayani, T. H., & David, A. S. (1996). The auditory hallucination: a phenomenological survey. Psychological Medicine, 26(01), 177-189.

Resnick, P. J., & Knoll, J. L. (2008). Malingered psychosis. In R. Rogers (Ed.), Clinical assessment of malingering and deception (pp. 51–68). New York, NY: Guilford Press.

Romme, M., Escher, S., Dillon, J., & Corstens, D. (2009). Living with voices. 50 stories of recovery. Ross-on-Wye: PCCS Books.

Woods, A., Jones, N., Alderson-Day, B., Callard, F., & Fernyhough, C. (2015). Experiences of hearing voices: analysis of a novel phenomenological survey. The Lancet Psychiatry, 2(4), 323-331.

Further resources on hearing voices

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Schizophrenia is not a mental disorder?

There has been a lot of debate over the past decades about the reliability and validity of the diagnosis of schizophrenia. There has been the Campaign for the Abolition of the Schizophrenia Label, books such as Schizophrenia: A Scientific Delusion?, and most recently a 2016 paper in the British Medical Journal with a very unambiguous title:

van-os

Despite such arguments, these authors typically only call for schizophrenia to be renamed, as happened in Japan recently. And what it is renamed as will still be classified as a mental disorder.

This is why the recent reports that the Pakistan Supreme Court had ruled that “schizophrenia is not a mental disorder” came somewhat out of left-field.

news-reports

What is happening here?

Are the views of the Pakistan Supreme Court being misreported? If so, what did they actually say?

Or, if this is what the Court said, how did they reach this decision?

It is a simple matter to access the actual judgement to find out, which is what we will try to do here.

 

The background

In 2002 Imdad Ali (pictured below, as held by his wife) was convicted of killing a religious teacher. He received the death sentence (I have not been able to access any court records pertaining to this original trial).

image-22-10-16

On 21 October 2016 the Supreme Court of Pakistan turned down a plea to delay his execution (by hanging). Extracting the court’s reasoning from media reports, we can piece together the following:

  1. The Supreme Court said schizophrenia was an “imbalance”, exacerbated by stress, that could be treated by drugs.

Whilst one could argue with this, it is consistent with mainstream views, such as that of the US National Institute for Mental Health (see below) who publicly endorse the chemical imbalance idea.

nimh-website

2. The Supreme Court therefore determined that schizophrenia is “not a permanent mental disorder”

Recovery from schizophrenia happens, so this too is not necessarily a controversial statement. That said, it is worth noting the grim results of a recent review that found only one in seven people diagnosed with schizophrenia was achieving a comprehensive recovery and that recovery rates had not improved over time.

3. The Supreme Court hence concluded that it must be “a recoverable disease, which… does not fall within the definition of ‘mental disorder”.

As we noted above, schizophrenia clearly is something that people can recover from, but the issue is how we then get to the idea that it is not a mental disorder. The reasoning behind this is somewhat opaque in media reports. This lack of clarity understandably led to this claim being met by a public outcry.

 

The reaction

This story was met by widespread disbelief. But not disbelief of the veracity of the story, but rather by disbelief that anyone could say that schizophrenia was not a mental disorder.

In a Press Release, a Director of the UK human rights organisation Reprieve commented that:

“It is outrageous for Pakistan’s Supreme Court to claim that schizophrenia is not a mental illness, and flies in the face of accepted medical knowledge, including Pakistan’s own mental health laws. It is terrifying to think that a mentally ill man like Imdad Ali could now hang because judges are pretending that schizophrenia is not a serious condition.”

Professionals were brought out to state that schizophrenia was a mental illness. The President of the Pakistan Psychiatric Society, Dr Sultan, said:

“It is a serious disorder which affects how a person thinks, feels and acts. Someone with schizophrenia may have difficulty distinguishing between what is real and what is imaginary; he or she may be unresponsive or withdrawn; and may have difficulty expressing normal emotions in social situations. In its most chronic form, schizophrenia can a life-long disease in which the patient does not feel normally or react like normal people”

It was shown that the public also thought that schizophrenia was a mental disorder. For example, The Express Tribune in Pakistan did a reader poll:

express-tribune-poll

No-one seems to have considered the alternative response; “is that really what the court said?” So let’s now back up a bit.

What did the court actually conclude, and how did it reach this conclusion?

 

What the Supreme Court judgement actually said

  1. The Supreme Court starts by stating the grounds of the appeal.

The basis of the appeal, made by Imdad’s wife, was that Imdad had schizophrenia and therefore needed medical treatment so that he could make a will before he was executed.

2. The Supreme Court reviews previous courts’ rulings

The Supreme Court states that Imdad’s claim he had schizophrenia (or as the Court puts it, that he was a ‘lunatic’) had been satisfactorily addressed by all previous courts and was hence not grounds for appeal.

previous-consideration

Later in the judgement the court makes clearer that Imdad had previously argued that he had schizophrenia, but the lower courts had discarded this.

paranoid-sz

The Supreme Court then argues that, even if Imdad did have schizophrenia, by Prison Rules officials should have noted this and taken appropriate steps, but they didn’t.

We may have expected that, having deemed that previous courts had addressed the schizophrenia issue, the Supreme Court would have wrapped up its judgement there and then.

But, oddly, it didn’t.

Instead, the Supreme Court next spent a long time giving its own view as to why schizophrenia is not always schizophrenia. It is initially unclear why it felt the need to take this on.

3. The Supreme Court comes to the conclusion that someone with a psychiatric diagnosis of schizophrenia doesn’t always meet the legal criteria for mental disorder.

Here we come to the crux of the transcript in relation to the media headlines. It turns out the court is not denying that schizophrenia is a severe mental disorder (indeed, they cite such a definition in their judgement). Instead they state that someone with a psychiatric diagnosis of schizophrenia does not always meet the legal criteria for having a mental disorder.

Here’s the relevant excerpt from the court’s judgement. The key phrase is ‘in all the cases’:

not-sz

Let’s now work through how the court arrived at this judgement.

It drew on (old) arguments from American psychiatrists and previous case-law.

Their first move was to cite an American psychiatric textbook saying there are degrees of schizophrenia. Here the court cites the following  (quite why they use a textbook from 1966 is unclear);

degrees-of-schizophrenia

The second move is to cite from the same textbook that recovery is possible:

recovery

The third move is to say that each case of schizophrenia needs to be considered on its own merits. Here they cite precedent and the famous American psychiatrist Karl Menninger (1893-1990):

menninger

The Court has now reached the point where it has established that merely saying someone has schizophrenia does not necessarily prove anything about the person. To ram this home it goes on to give an example of a case when simply having a diagnosis of schizophrenia was not deemed in and of itself to be indicative of anything. In said case, a husband applied for a dissolution of marriage on the basis that his wife had a diagnosis of schizophrenia and was therefore “unfit for married life”. This previous case concluded as follows:

schizophrenia-is

Schizophrenia is what schizophrenia does? An interesting idea. What are the implications of such a statement though?

Anyway, given all this, the Court can now reach its conclusion, in relation to schizophrenia, which to reiterate, was:

not-sz

Two things puzzle me here.

The first is why they took this route to reach their conclusion. The latest version of Psychiatry’s Bible, the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) explicitly states that just because someone has a diagnosis of a mental disorder, this doesn’t mean they will necessarily meet the legal criteria for a mental disorder. Here is the relevant except from the DSM-V:

dsm-v-mental-disorder

I don’t see why the Court couldn’t have just referred to this.

The second thing that puzzles me is why the Court is even concerned to make this point.

The question is surely not whether or not someone with a diagnosis of schizophrenia always meets legal criteria for mental disorder, but rather whether Imdad specifically met the legal criteria for mental disorder.

As far as I can see, the Court seems to be trying to find if there was a way that earlier courts could have reached the seemingly paradoxical conclusion that Imdad had schizophrenia but that this wasn’t a barrier to his execution. Yet, whether this was how earlier courts came to their conclusions is unclear, and more importantly, whether or not Imdad meets/met diagnostic criteria for schizophrenia is not clearly established.

 

The final judgement

The court then sums up its final decision, and its reason for rejecting the appeal, as follows:

court-ruling

This is also confusing to me.

If, as the Court states, rules relating to mental illness can’t delay an execution, then why has so much of their judgement been spent trying to find a way to argue that schizophrenia isn’t always schizophrenia?

 

Post-judgement reaction

That it urgently needs determining whether or not Imdad meets the diagnostic criteria for schizophrenia, and if this meets the legal definition of mental disorder in his case, now seems to have been recognised by the Court.

On 31 October 2016, the Supreme Court postponed Imdad’s execution after a fresh petition from his lawyers, and a review petition from the government of Punjab province (where he is held). This latter petition claimed the Supreme Court’s definition of schizophrenia had “resulted in a grave miscarriage of justice”, because it was contrary to the universally accepted medical definition of ‘mental disorder’ and alleges that prison medical records show Mr Ali has “consistently displayed symptoms of schizophrenia” and “is not showing signs of improvement and has active psychotic symptoms”. http://www.ekklesia.co.uk/node/23565).

On 14 November 2016 the Supreme Court ordered a panel of doctors to examine Imdad’s mental health (http://www.ekklesia.co.uk/node/23580)

On the 18 November 2016 the Supreme Court said that if psychiatrists find Imdad is mentally ill, his execution will be delayed until recovery (http://www.ekklesia.co.uk/node/23580)

It seems likely that he will be deemed to have schizophrenia.

Imdad’s sister describes that their father had schizophrenia. When Imdad was just two years old, his father died after jumping in front of a train because he thought he was invincible. He left a widow and six children.

The genesis of Imdad’s own mental health problems are also described by his sister:

sister-describes-what-happened

Furthermore, Reuters reports that Government doctors in 2012 certified Imdad as having paranoid schizophrenia. For example, it cites a Dr Tahir Feroze, a government psychiatrist who has treated Ali for the last eight years of his incarceration, who says he and two other doctors certified Ali’s condition in 2012. Imdad suffers from delusions that he controls the world, is persecuted and he hears voices in his head that command him, according to Dr Feroze and Imdad’s wife. Yet Imdad’s lawyer says the government report certifying his condition had never been presented in court before 2016.

 

Conclusions

Bearing in mind a number of caveats (I am not a lawyer, I have limited access to information to this case, and so this is just a lay-reading of what is going on), here are my own take-aways from all this.

1. The Supreme Court was saying someone diagnosed with schizophrenia may not meet the legal definition of mental disorder. They were not saying that schizophrenia is not a mental disorder in the psychiatric sense.

There is nothing controversial about this, although the Court did reach this conclusion in something of an idiosyncratic way. If reporters had read the freely available court documents, this misunderstanding would not have arisen.

2. Progressive arguments may have regressive effects.

It is notable that the court drew on a lot of progressive arguments, such as the potential for recovery from schizophrenia, and that schizophrenia does not a priori define a person, in order to make the case that Imdad should die. We should be aware that progressive arguments, which humanise and empower people diagnosed with schizophrenia, also run the risk of misrepresenting people’s degree of agency and may end up blaming them for things they were not responsible for. We need a discussion of the relation between mental illness and criminal responsibility that acknowledges shades of grey.

3. It is unclear why the Supreme Court undertook a consideration of what schizophrenia is.

This seems to have been irrelevant to the actual basis of their judgement.

4. It is unclear why a consideration of the relation between schizophrenia and legal definitions of mental disorder was undertaken which did not then go on to consider this in relation to Imdad specifically.

Although the Court has now allowed that if Imdad is deemed to have schizophrenia then his execution can be delayed until he has recovered, little is being mentioned about whether Imdad was suffering from a mental disorder (in the legal sense) when he killed the religious teacher. If so, this could commute the death sentence, rather than just delay it. An independent and authoritative assessment of Imdad’s current and historical mental health state clearly needs to be made.

5. If Imdad had schizophrenia at the time of his offence, or has it now, international law says he should not be executed.

As Amnesty International note, citing the examples below, the execution of someone with a mental illness is clearly prohibited by international law:

International Resolutions Year Excerpt
UN Safeguards Guaranteeing Protection of the Rights of Those Facing the Death Penalty 1984 ” …nor shall the death sentence be carried out… on persons who have become insane.”
UN Special Rapporteur on Extrajudicial, Summary or Arbitrary Executions 1997 Governments that continue to use the death penalty “with respect to minors and the mentally ill are particularly called upon to bring their domestic legislation into conformity with international legal standards.”
UN Commission on Human Rights 2000 Urges all states that maintain the death penalty “not to impose it on a person suffering from any form of mental disorder; not to execute any such person.”

 

Media reporting of this story typically went for sensationalist headlines that did not convey that the Court was uncontroversially saying that someone with a diagnosis of schizophrenia may nevertheless fail to meet the legal definition of mental disorder.

Yet there are clearly many other problems with this case, and the media spotlight has engendered a passionate response from public and human rights bodies who have put pressure on the Pakistan Supreme Court to rectify a genuine problem, namely that Imdad’s mental health does not seem to have been fully assessed, addressed, and taken into account. This response has very plausibly extended Imdad’s life and may even contribute to saving it.

At the time of writing, 31,000 people have signed a petition calling for Imdad to be saved.

I will update the blog for what happens next.

 

Do people diagnosed with schizophrenia deserve organs?

 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

http://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).