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Disclosing Information

What happens when a proposed medical treatment clashes head on with a patient's cultural values?

Moha has kidney failure. He's on dialysis to replace his lost kidney function, and on the waiting list for a transplant. But his chances of receiving a kidney from a deceased donor are slim.

The donor pool is primarily Caucasian, and given that Moha is African and has a rare blood type, it's unlikely a tissue matched kidney will come up.

His nephew back in his country of origin offers to donate one of his kidneys. But Moha has a secret that only he and his medical team know about.

As his nephew has offered to donate a kidney, the team feel that he has a right to know. Should Moha be forced to tell?

Release date:

45 minutes

Last on

Thu 21 Jul 2011 21:00

Programme Transcript

Downloaded from www.bbc.co.uk/radio4

THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.  BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

 

 

INSIDE THE ETHICS COMMITTEE

 

 

 

RADIO 4

 

TX DATE:                           21ST JULY 2011, 0902-0945                         

 

PRESENTER:                      JOAN BAKEWELL

 

CONTRIBUTORS:               BOBBIE FARSIDES

                                          ROBERT ELIAS

                                          JANE ANDERSON

 

PRODUCER:                       BETH EASTWOOD

 

 

 

 

 

NOT CHECKED AS BROADCAST


Bakewell

What happens when a medical response to a life threatening condition clashes directly with the cultural background of the patient?  Across the world people of different ethnicity seek and deserve the most up to date treatment, including the possibility of organ transplants.  Inside the Ethics Committee looks at one such case.

 

Moha is a student in his 40s, given the sensitive nature of his story he prefers his words to be voiced by an actor.  Moha was a keen athlete until about six years ago when he started to feel ill.  Subsequent medical tests revealed a serious organ dysfunction.

 

Moha

I had a lot of sweating, headache, tired.  My life has changed because I can't do what I want to do.  I also become like very weak.

 

Doctor

I first met Moha about five or six years ago when he was referred to me from another team because he had fairly advanced kidney dysfunction.  So I arranged a biopsy of one of his kidneys and that showed a very inflamed kidney with a lot of scarring.

 

Bakewell

In fact Moha has only about a third of his kidney function left.  There's no cure for the condition he has and over the next couple of years Moha becomes increasingly unwell.

 

Doctor

The 30% kidney function became 20% and once you get down to 20% it's time to start thinking about some sort of kidney support.  So at that stage I had a very difficult discussion with him about his future treatment options.

 

Moha

The doctor told me we are very sorry because your kidney is nearly failed, you have to go to dialysis in a month's time.  I started panicking.  I feel sad really.  I'm stressed a lot, I was crying.

 

Doctor

This is a young man, an athlete, a student - he had his whole life ahead of him and the idea that he was going to have to give all that up and go on to dialysis was really quite devastating for him.

 

Moha

Three times a week to be on dialysis is very hard.  First when you finish dialysis, four, sometimes five hours long, when you go home you can't even walk.  You need like 24 hours to recover from that dialysis.  And after two days you come back to hospital for dialysis again.  It's very difficult, very, very hard.  And I was thinking what am I going to do next.

 

Doctor

The best treatment for a person with kidney failure, if they're fit enough, is to have a kidney transplant but there's obviously a great shortage of organs for transplantation.  So in reality what happens is patients go on to a waiting list and wait there until a suitable organ for them becomes available.

 

Bakewell

Kidneys for transplant are in desperately short supply, there are long waiting lists and campaigns to persuade people to carry donor cards and donate their organs after death.  The odds of Moha getting an organ are low.

 

Doctor

The chances of getting a kidney from the deceased donor waiting list - so from someone who's died - depends to a huge extent on your blood type and your tissue type.  The vast majority - almost 100% - of organ donors in the UK are white UK residents.  So given that Moha was from Africa and was blood group B the chances of him getting a kidney from someone of the same blood type and a similar tissue match were very, very small.

 

Transplant doctor

We would normally expect a Caucasian in this country to have a wait of around two to three years for a deceased donor transplant.  Someone who's Afro Caribbean might expect three to four years but if they're of a blood group type that's unusual, like blood group B, then they might wait five, six or seven years for a deceased donor organ.

 

Bakewell

Moha only has to look round the dialysis ward to appreciate the truth of this situation.

 

Moha

Still the doctor keep telling me possibly you get donor from someone else.  Still I haven't got any hope because of my background, because other people before me are still waiting - five years, six years, eight years - it's very hard.  I haven't got any hope anyway.

 

Doctor

I said to Moha you might wait between five and seven years for this type of transplant.  You just go on the waiting list and then you wait and you wait and you wait and maybe one day the kidney comes and more likely it doesn't.

 

Bakewell

Well here to discuss the sort of problem that faces Moha are Bobbie Farsides, who's professor of clinical and biomedical ethics at Brighton and Sussex Medical School and Dr Robert Elias, a kidney specialist at King's College London NHS Foundation Trust.  Both of them have professional experience of transplant ethics.  Now Robert Elias, you must have come across similar situations.

 

Elias

I certainly see people just like this who are waiting for a long time, having dialysis and I think there's been a tendency amongst both professionals and the public to think that having dialysis is a fix for kidney failure, whereas in fact it is a phenomenal burden and for a lot of people, like Moha, it totally changes their life and it has a huge impact on their quality of life.

 

Bakewell

So the dialysis wards you know are there a higher proportion of people of Afro Caribbean background than Caucasian?

 

Elias

Yes, when you visit the patients in their dialysis unit you will see the Caucasian patients with a typical blood group and be able to reassure them that they're likely to get a transplant within two to three years and when you see people from an African background you're much more reticent, you know that their outlook is much less good when it comes to getting a transplant.

 

Bakewell

Why does the difference in tissue type and blood group matter when it comes to a transplant?

 

Elias

Well in order to successfully transplant an organ from a deceased donor to someone who needs it there are certain conditions that need to be met.  The immune system of the person receiving the organ can be suppressed by medicine, in a way that prevents them from rejecting that organ.  But that's only possible if certain other conditions are met.  And that is that there's a sufficient match between the kidney and the person receiving that kidney.

 

Bakewell

So that's a universal matching that needs to go on, so where does ethnicity play into that?

 

Elias

The crucial aspect of the match happen on two levels.  The first is blood group and the second is the tissue type.  Now the immune system's very complicated and there are lots of different antibodies that go up to making a tissue type but there are certain key antibodies that we identify when matching between a kidney and a recipient and those antibodies that go up to make the tissue type will vary according to where the person comes from, according to what their ethnicity is.  And it causes problems for people who do not have a physical makeup that matches the vast majority of people who are on the waiting list.

 

Bakewell

You pose a real dilemma here.  So how does all this affect the allocation of kidneys for people who are on this waiting list?

 

Farsides

Well I'm afraid there's another factor that makes it difficult because not only do we look at the complexity of matching suitable donors and recipients, we know, unfortunately, that in this country although people from ethnic minority groups are well represented in the patient group, i.e. people needing transplants, they're not as well represented on the donor list.  So we have a problem.

 

Bakewell

Why is that?

 

Farsides

I'm afraid we don't really know the answer to that question.  Various theories have been put forward and increasingly we're finding they don't provide the answer.  For example people have said in the past that religious views get in the way of people donating.  But actually all the major religions in this country have now made formal statements about donation being acceptable, not only acceptable but something that they'd like to encourage.  That doesn't always translate the message that people get in their communities.

 

Bakewell

But you've done research with a particular group to find out why there is such resistance, so what have you uncovered?

 

Farsides

Well they're intangible things, they're things about people worrying about what happens to the body after death, there's concerns around mutilation, there's also reluctance to discuss death and dying earlier in life, so that people's wishes around donation aren't known and when families face the terrible situation of losing somebody suddenly they're not in a position to come forward and say yes we know this person would have liked to donate.  Some of these problems are common to all populations but some of them seem specifically difficult within ethnic minority groups.

 

Bakewell

Are they culturally tied or are they religiously tied?

 

Farsides

I think we would have to say they're more culturally tied than religiously tied.  But I also think they sometimes are tied to people's experiences of living in a particular community, perhaps even their interactions with the health service which is now asking them to give this gift - if they've not necessarily felt welcomed by, included by, well treated in that system are they going to feel the same urge to put something back?

 

Bakewell

Robert.

 

Elias

There is some evidence, when looking at patient satisfaction surveys, that young people from ethnic minorities report lower levels of satisfaction with their experience of the NHS and I think that goes with what Bobbie is saying that if people don't feel invested in or satisfied with their experience of the NHS then perhaps, although I agree this hasn't been demonstrated, but perhaps they feel less inclined to donate organs.

 

Bakewell

It just doesn't seem fair does it, in medical terms, that someone who needs a kidney on a waiting list isn't progressing up the list, I mean the whole sense of justice in health requires you all to be treated equally somehow and it's just not possible.

 

Elias

I think it's important to note that every effort is made in the way that organs are allocated to people on the waiting list to take account of the amount of time that people have been waiting.  And more than that specific efforts have been made to notice the fact that people from ethnic minorities are disadvantaged.  And what's happened since the system was changed in 2006 is that we're seeing real improvements in equity on the waiting list because there is a greater emphasis on allocation to people who've been waiting for a long time and there's greater access to people from ethnic minorities because there's less emphasis on the tissue type match.

 

Farsides

I think we have to acknowledge that all our discussions about transplantation take place against a background of scarcity but it's particularly true in the case of black and ethnic minorities.

 

Bakewell

Right, well let's get back to the story because Moha is still on dialysis and on the waiting list but there is another major consideration that reduces still further his chances of a transplant from a deceased donor.

 

Doctor

Moha has HIV infection, which he'd had for about 10 years before I first met him and the HIV infection was very well controlled because he was on appropriate antiviral drugs and certainly wasn't the cause of his kidney failure but that did cause some anxieties thinking about getting a future kidney transplant for him, partly because of the uncertainties about how well a kidney transplant might perform in a patient with HIV infection.

 

Moha

On that point I am very scared.  It's very, very hard because you know I have a complicated medical situation and if it goes wrong I could completely die.

 

Doctor

We had to counsel him very carefully about the added risk that he might be taking by having a kidney transplant - the risks that the drugs might interact in an adverse way and either upset his HIV control or risk rejection of the kidney or cause undesirable drug side effects or drug toxicities.  So we had to talk to him very carefully about all those issues before putting Moha on the waiting list for a deceased donor kidney.

 

Bakewell

The situation is not as desperate as it sounds.  Yes being HIV positive presents further challenges but it's not completely uncharted medical territory, such patients have already received transplants.

 

Transplant doctor

We have a large number of patients with kidney disease who are HIV positive and it became increasingly clear that the only option for them was for them to have a transplant.

 

Doctor

This is something that 15 years ago would have been unthinkable, 10 years ago was regarded as dangerous experimental therapy, it's only within the last four, five years that it's starting to become available in a few specialist centres.  And unfortunately the subset of patients who suffer from kidney failure with HIV tend to be young, black males.  And the idea that you just put someone like that on dialysis and not exactly forget about them but don't offer them or even think about kidney transplantation is actually unthinkable.

 

Bakewell

Moha is just such a man.  Were he fit he could expect many years of life ahead of him but he's been on dialysis for about a year and is still waiting for an organ.

 

Doctor

He was a man basically living at the mercy of his dialysis treatment schedule.  So after about a year of this we decided to explore other options.

 

Transplant doctor

We advised him that he would be better having a living donor rather than a deceased donor, there are a number of reasons for this.  First of all the quality of the kidney would be generally speaking better, we would be able to transplant him much quicker and thirdly we could plan the procedure and that's very important, particularly for someone who's HIV positive, who is on a number of different medications that will tend to interact with the drugs that we give after transplantation.  So we asked him to think about who in his family might be able to donate.

 

Moha

My first reaction is I'm so happy in that I've got a big family, I'm going to ask them.  I went to country where I'm born and I called all my nephews and I told them my kidney is not working any longer, maybe in two years I'm not going to be alive.  So everyone, as you know, happy to give me kidney and I checked the blood of four of them and the same blood group mine.  So the one who I picked he knows about science, he knows that if he give me kidney I could live normally.  So yeah I came back to the UK.

 

Bakewell

What seems like good news however turns out to have major qualifications, they pose an intractable problem for Moha.

 

Doctor

Well at this stage we said that's a great step forward and we would be interested in looking at any of your family members from overseas but do they know that you have HIV?  And at this point Moha said no, none of my family know and I don't think I could tell them.

 

Moha

Nobody knows.  I never tell my illness, never because in Africa it doesn't exist, it's a huge stigma.  If someone has HIV those close to him, even his father denies his children, the mother the same thing, so the children are abandoned and live in the street,  Even my mum, if she heard about my illness, she's going to be worried a lot.  She is too old.  She's going to have a heart attack.

 

Doctor

So we said well that's very difficult because if you have a donor who wants to give you a kidney we would like them to know that you have HIV and he said this will be extremely difficult for me, I'll need to think about it, let me bring my nephew to the UK and then I will tell him.

 

Bakewell

Moha's family member has the basic tests in Africa.  Tests that indicate he's suitable to be considered as a donor.  Then starts the complicated business of getting a visa, his application is rejected by the British Embassy three times but eventually Moha's nephew gets his visa.

 

Doctor

Moha's nephew arrived in the country and we did some scans of his kidneys and of his heart to make sure that he was fit and during this whole process we knew that at some stage the discussion about HIV had to take place and clearly the only person who could have that discussion with Moha's nephew was Moha himself, it had to come from him.

 

Transplant doctor

And he told us that he was very reluctant to do this.  So during that period we had several conversations with him and went over the same issue again.

 

Moha

I think about it, it's hard to tell someone who is very happy and even worse I am a kidney patient and my kidney isn't working.  On top of that I'm HIV and it's very hard.

 

Doctor

Clearly nobody wants to broadcast from the roof tops that you have HIV but it seems to me that this blanket of secrecy exists largely in the black African and also the black British population and that seems to me surprising that we haven't been able to impact on that at all.

 

Bakewell

What are the rules that govern the giving of transplants?  How absolute are the guidelines that insist a donor must be told such intimate information?  And how does such guidance balance the interests of donor and recipient?  National guidelines for kidney transplantation in patients with HIV were set out in 2005.  By now it's 2009.

 

Doctor

The guidelines are fairly clear and they say that live donors must always be informed of the recipient's HIV status.  So if you follow those guidelines to the letter you would insist that the donors should always be informed.

 

Bakewell

Back in 2005 there was little evidence about how HIV positive patients did after transplant, just a small number of patients had been studied in San Francisco.

 

Transplant doctor

At a year after transplant around 80% of transplants were working.  That compared with around 95% in our recipients who were not HIV positive.  And rejection rates were higher but overall the survival wasn't too bad.  So there wasn't really any reason to think that there was going to be a dramatically worse outcome in these patients.  And it was perhaps related to the fact that this was HIV we were talking about and not another disease because there are plenty of other illnesses in the recipient, like severe heart disease, which might lead to a particularly poor outcome and generally speaking we don't make a condition that the recipient discloses all the details of that to the donor.

 

Bakewell

Joining the discussion with Dr Robert Elias and Professor Bobbie Farsides is Professor Jane Anderson, HIV specialist at Homerton Hospital in London.  She's conducted extensive research on the experiences of African HIV positive men in the UK.  Jane, we'll come to you in just a minute but on a matter of fact I want to ask you Robert, does Moha now remain on the list even though he's HIV positive along with everyone else?

 

Elias

Absolutely.  The fact that he has HIV makes things a lot more complicated, it's very difficult to control the HIV at the same time as giving him immunosuppression but there's absolutely no reason why someone with well controlled HIV disease should not remain on the deceased donor waiting list for a kidney transplant.

 

Bakewell

And Bobbie, is that fair that someone who has the problem of HIV retains an equal place with everyone else on the list?

 

Farsides

I think it's absolutely fair and I'm really pleased to hear about it because actually what should determine whether you stay on the list is if you have a reasonable chance of benefiting from a transplant and it sounds as if science has helped us move forward and ensure that HIV positive patients have a good chance of benefiting.

 

Bakewell

Jane, tell us about the problem across this black community, it's really devastating that nobody can talk about it, what have you discovered?

 

Anderson

Well the research that we've done at Homerton in collaboration with Professor of Social Sciences, Professor Lesley Doyle because actually it's understanding the social situation as much as the medical situation that allows us to try and address the problems.  I think there are two big issues for people of African heritage in the UK.  The first is what if the information gets back to Africa where treatment isn't as good and so the patient said on the clip - if my mother hears about it she'll be terribly upset - because the understanding that he might live well with HIV is not something that that particular community in Africa would be familiar with.  But the stigma that goes with it is much greater than that and much more profound.  And so of course for people who are in this country where maybe their social networks are more precarious the idea that somebody might find out and that the person would then be excluded from what is probably quite a small community in this country is also very terrifying.  And HIV carries with it associations that still go back to somehow one's identity, in fact Moha says - I am HIV.

 

Bakewell

Now Robert you've written about this whole business of disclosure, what is the attitude broadly taken by ethics committees?

 

Elias

I think this is seen as a genuine ethical dilemma.  I don't think an ethics committee would be in a position to come down heavily on one side or the other.  On the question of disclosure and we've heard it here - both sides of the coin - from the team that have been looking after Moha.  On the one hand there's a very, very strong sense that the donor is putting themselves at risk for the benefit of the recipient and deserve the best possible quality of information and process of consent that can be offered.  And deciding what information they need should really be up to them and it should include anything that has an impact on their decision, whether or not to donate.  That's one side of the coin.

 

Bakewell

So if it went wrong they could say but it wasn't informed consent, you didn't tell me, I should have been told?

 

Elias

Exactly, I mean I think there's - that itself has two aspects.  One is the aim to give the best quality care and consent and the other is a slight fear, if you like, that clinicians will be held to account and rightly so for not ensuring that the processes of consent are adequate.  But the flip side of that, which we also heard in one of those extracts, is that we don't routinely give every single piece of information to everyone about every procedure.  There still remains a bit of a myth about this idea of fully informed consent.  There's no such thing as fully informed consent - no one can know absolutely everything.  It may be possible to communicate the risks and benefits associated with the medical diagnosis of HIV in ways that don't involve disclosing the diagnosis itself.

 

Bakewell

Are the guidelines absolute and are they likely to shift or offer a more fluid option?  Bobbie.

 

Farsides

The guidelines are being revisited at the moment and actually I think the guidance increasingly should appreciate the fact that you can have an honest and trusting relationship without always having to give the whole truth.  I'd be quite comfortable in saying the doctor's role is communicating the possibility of this being a successful transplant or not without perhaps direct reference to what would make that happen or not happen successfully.  But there's also a relationship between the donor and the recipient which we would hope could be a truthful and trusting one. But is it the doctor's business to intervene in that and ensure that one individual has told another individual absolutely everything and all the facts that we might think from the outside would be relevant to a decision between the two of them?  And that's where I would be less sure.

 

Bakewell

Right, well let's get back to Moha's story because the current guidelines, as they operated then, encouraged donors to disclose their HIV status, even though often the donors allowed to keep other health information private.

 

Transplant doctor

So an example might be where we have a husband donating to a wife and the wife tells us during the consultation that she had an abortion but tells us that she doesn't want us to let the husband know because if he did he'd be very upset and he might not donate to her.  Now in that situation we have a piece of information which materially affects the donor's decision to donate but most teams would not divulge that information.

 

Bakewell

But with HIV there's a risk the donor might change his mind about donating.  Are things so critical that Moha should be allowed to keep his status secret?  And what about the donor's right to know?  The kidney specialist found this difficult.

 

Doctor

I'm really split on this issue of disclosure because although on the one hand I hugely sympathise with the plight of the recipient and yet on the other hand the donor is doing something incredibly brave, they're putting themselves through the risk of surgery now, need to have health reviews on a regular basis etc., why would they do that if information has been withheld from them deliberately because it's felt that they are not going to handle it appropriately and I don't think that's right for them either.

 

Bakewell

With his nephew already in the country Moha is still refusing to disclose his HIV status - he's too fearful of the consequences.  What's more his nephew doesn't speak English.

 

Doctor

Clearly it was not getting any easier to have the discussion the longer we went on with our tests and I was getting more anxious that Moha would back out and say I can't go through with this, it's too stressful for me.  The nephew spoke a language that we didn't speak so we were only able to speak to him through interpreters and because of issues to do with confidentiality Moha was very keen to have that conversation with his nephew without an interpreter present.

 

Moha

The interpreter comes from my community, everybody knows each other so I'm scared, everybody knows me.  The only way to communicate with my doctors is through me, we don't share our confidentiality with other people.  The interpreter, if she heard I am HIV, she's going to tell everyone because the community knows where I come from.  I don't want to take my secret to someone so that's why we don't need an interpreter.

 

Doctor

I was a little bit anxious that the information would not be passed to the nephew and Moha could then very reasonably come back to us and say there I've told him.

 

Bakewell

As the transplant date approaches tension rises.  Some members of the team are seriously worried that Moha is on the verge of backing out.

 

Moha

The doctor said to me - Did you tell him? - every day when I come.  No.  Even I'm thinking I am going to send him back, I'm not going to receive any kidney because I'm not going to tell him I've HIV.

 

Doctor

Ultimately we might end up saying it's not going ahead because - well we can't tell you why it's not going ahead, it just isn't because clearly we wouldn't be able to say anything to the donor about Moha's status.  I've had that situation to the point where they will not disclose even if that means resigning themselves to years on dialysis and to a premature death.

 

Transplant doctor

These generally speaking are young fit men who are healthy, who are desperate to get on with their lives and the concern that I have is that we're condemning them to become increasingly sick, ill and potentially die on the waiting list.

 

Doctor

Ultimately the policy of the HIV transplant team is that we would like full disclosure and we aim for that where possible, even it means causing a difficult situation to develop, as it did in this case.

 

Moha

One night I was asleep thinking about how can I tell him, it's very bad, I'm not thinking about you've got to give me kidney, I'm thinking about confidentiality.  I know when I go back home it will be very difficult, so that's why I'm scared.

 

Bakewell

Well things have certainly moved on.  The nephew's here, the date is set for the operation, Moha's thinking he could pull out - where are we now?  Bobbie.

 

Farsides

Well I think one of the things we must hope is that somebody is looking after the nephew well in this process.  So prompt him or support him - I'm not saying that he should be pushed to ask specific questions or even investigate directly this issue of HIV but I would like to think that he would, looking back, feel that he had been encouraged to find out anything that he thought was relevant to his consent.

 

Bakewell

It's clearly a tussle for the medical team, how are they to balance in their own minds the interests of the donor and the recipient?

 

Elias

I think this is fantastically difficult.  Transplant teams do a phenomenal amount of good work in building up relationships with recipients and donor.  Now I think it's a very interesting question how guidelines about what you should and shouldn't disclose play in here.  I totally agree with what Bobbie's saying about exploring with individuals what their specific needs for consent are and I think that's something that we don't routinely do particularly well.  But the other side of the coin is again that the clinicians will be concerned that they are potentially doing something that could damage a donor and not in the interests of that person's health, so they have to have extra rigorous standards of consent if you like.  And the additional point that we haven't mentioned is about the transplant programme as a whole, which is that there's this fear well what if the donor finds out later and comes back and says I wouldn't have done it?  Now obviously that has ramifications for the individual but also adverse publicity could have an impact on people's willingness to donate kidneys more generally.

 

Bakewell

Can you give me an idea where on the whole it would be a good idea for the recipient to pass on the information?

 

Elias

A similar situation arises with incidental findings in the course of transplant work up.  For example, sometimes the antibody testing that goes on between a living donor and their potential recipient will reveal that in fact say a father and son are not in fact biologically father and son.  Now that throws up a very difficult situation where you have information that in a way belongs to both of them.  So if you're going to go ahead and disclose you would disclose to both of them and make sure they were both aware.

 

Bakewell

And Bobbie what about a situation in which it might be really much more appropriate that the donor is not told information?

 

Farsides

I think we have to separate between the information that's clinically relevant and the information that's morally relevant.  So if we suspect that somebody has a deep seated but irrational prejudice we might not want to feed into that in terms of the information that is disclosed about the person to whom they are going to donate.  But I think this comes to the issue of what is the role of the multidisciplinary team in establishing and helping to maintain a trusting relationship between a donor and a potential recipient so that these facts can come out in their own conversations.

 

Bakewell

We've got - the nephew has arrived from abroad and has very little information about what's going on in this country, what kind of challenge does that present?

 

Elias

When you're factoring in problems with translation and a different language, geographical distance, problems obtaining visas - as we've heard - then of course that just makes everything doubly difficult.  And when you're looking to be reassured, as a clinical team, that there is a trusting relationship going on between the donor and recipient that can be all the more difficult if everything is happening at several thousand miles distance.

 

Bakewell

Of course Jane what we have here is a situation in which both the donor and the recipient are African men who understand their own culture.

 

Anderson

Which is critically important because the fear perhaps of the recipient that the donor might be so shocked by the HIV diagnosis that it would put him off is one fear but of course the understanding between the two men about the absolute need for confidentiality and what might happen if the information fell into the wrong hands would be shared and actually might make it a great deal safer.  One of the questions we haven't looked at here is what is the HIV team doing in terms of supporting Moha because disclosure is a common issue for people living with HIV and this of course is a very extreme set of examples and there are a number of ways perhaps of helping supporting Moha through this process.  So would it help him to meet another man living with HIV who's been through disclosure?  Because actually as you talk to people they often say I was terrified but I did say and it wasn't as bad as I thought it was going to be.  So peer support organisations where people who are living with HIV who have themselves been through the process are able to support people in this process of disclosure.  And I think the other thing we have to focus on is there's a sense that disclosure is an absolute moment - one minute you don't know, the next minute you do - it's actually much more of a drawn out process than that and people may take a long time to impart the full information.

 

Bakewell

There is an element of African male machismo involved here isn't there - about the reticence about your condition - certainly concerning HIV?

 

Anderson

Yes, the research findings from the project that Lesley Doyle and I carried out and actually which has also been shown in various African studies is that HIV has got a very profound effect, particularly in men, of making people feel weakened.  Men have said actually I would be so disempowered and weakened by this that I won't be able to look after or help or do things.  So there's this very profound sense of powerlessness that goes with this diagnosis.

 

Bakewell

I'm going to ask each of you to say what you would advise if you were on the ethics committee.  Now clearly you have to make the decision about circumstances today, about a situation that arose two years ago.  Bobbie what would you advise?

 

Farsides

If the situation isn't medical urgent and we have the possibility of encouraging communication between the donor and the recipient then that's something that we can usefully do.

 

Bakewell

But the operation is looming.

 

Farsides

Well if the operation is looming I think I'm going to stick my neck out and say I wouldn't force a disclosure.  It might be easy for me to say that because I'm the ethicist, not the clinician that will get into trouble as a result.

 

Bakewell

Dr Elias.

 

Elias

The clinical team have always been explicit from the outset that Moha will disclose and he has accepted that and I can't help feeling that the information that will have been given, the way conversations will have been held particularly with the donor have been premised on the fact that he will know.  And so my advice now would be not to proceed without disclosure.

 

Bakewell

And Jane.

 

Anderson

I find this is very difficult because the man is suffering from a medical condition which is separate from his HIV and there is a solution and medically his HIV is not, in today's world or even two years ago's world, going to have a major impact on the clinical outcome here.  But to proceed without full trust between the donor and the recipient is where I think things are going to fall down and I would like to have a further conversation with Moha to really understand from his perspective what he will feel if he goes ahead without that level of trust.

 

Bakewell

But when push comes to shove you want disclosure - I'm right aren't I?

 

Anderson

When push comes to shove I would like the transplant to go ahead.

 

Bakewell

With disclosure?

 

Anderson

With disclosure would be perfect, without disclosure is possible.

 

Bakewell

Let's find out what happened to Moha.

 

Doctor

The team were fairly split about this issue but the prevailing view was that the donor should be told and that's what we asked Moha to do.

 

Transplant doctor

We were one of the pioneers in the UK for transplanting these patients and therefore we were very reluctant to go against existing guidelines.  But I think some people were uncomfortable with it.

 

Moha

One day I decided I had to tell him because if he doesn't know about my HIV possibly it's bad for him as well.  And one day I take him out and we sit down and I say I'm sorry to tell you but you know you are donating to someone who suffers for a long time with HIV.  It's up to you if you donate.  He was in shock but then - no I'm not going to stop donate kidney to you because we need you, it doesn't matter if you are HIV or not.  I'm not going to tell anyone.  I just hug him.  He's crying and I'm crying too.

 

Bakewell

Once the medical team was reassured that the conversation had taken place the operation went ahead in the winter of 2009. 

 

Moha

I just woke up in the recovery room and I came back to the ward and we were laughing with each other, no pain, nothing.  It was absolutely fantastic.  Amazing.

 

Doctor

He has gone back to work.  He's taken up sport again.  He's very healthy.  He's going back to the gym, he's exercising and he's doing extremely well.  And he gives us very good feedback from his donor who's returned overseas.

 

Moha

Every month I call him and he says he's better than before, that's what he tells me, his life is normal and my life is back on track.

 

Bakewell

The medical team are left wondering whether forcing patients like Moha to disclose their HIV status to their donor is always the right thing to do.

 

Transplant doctor

There are a number of people who are HIV positive who either are not being offered a transplant at all or are being left on the deceased donor waiting list because they're unwilling to disclose their status to a potential living donor.  I think it's quite important that across the UK we look at these people carefully and think about whether we can go ahead and offer them a living donor transplant and avoid the serious suffering and illness that they'll otherwise experience if they remain on the waiting list.

 

ENDS