±«Óãtv

Ìý

Downloaded from

Ìý

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

Ìý

Ìý

INSIDE THE ETHICS COMMITTEE

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý

Programme no. 2 – Childhood Illness

Ìý

Ìý

RADIO 4

Ìý

TX DATE:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý TUESDAY 27TH JULY 2010 0900-0945ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý

Ìý

PRESENTER:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý JOAN BAKEWELLÌý

Ìý

CONTRIBUTORS:ÌýÌýÌý YUSEF AZAD

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýDEBORAH BOWMAN

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý STEVE WELCH

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýMAX

Ìý

PRODUCER:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý BETH EASTWOODÌý

Ìý

Ìý

Ìý

Ìý

Ìý

NOT CHECKED AS BROADCAST

BAKEWELL

Today we ask - when does a seriously ill child have a say in their treatment?

Ìý

When a child's ill parents or close family have responsibility for them.Ìý But if the illness is on-going and needing medical attention the question arises of when and how to tell the child, and how much weight should be given to his or her views.

Ìý

Inside the Ethics Committee examines an actual case that hinges on these very dilemmas.

Ìý

Tanya is nine years old and being raised by her aunt.Ìý The social worker has noticed her failure to thrive, has several times tried to get her aunt to bring her to the clinic - and failed.Ìý So she asks the clinical psychologist to go along and assess Tanya in her own home.

Ìý

PSYCHOLOGIST

I can remember quite clearly this very poorly grown child who was friendly but not very vocal.Ìý The house was very chaotic, it was very difficult to have any sense of a long conversation but I did get a feel that this was a child who wasn't functioning as a nine year old.

Ìý

BAKEWELL

The specialist who would eventually treat Tanya recalls her condition when she was nine.

Ìý

DOCTOR

At that time she had some failure to thrive, she had problems with recurrent chest infections, had a couple of short admissions at her local hospital and she had some areas of developmental delay, having missed schooling.

Ìý

PSYCHOLOGIST

The issue for the auntie was very much to do with the fact that this girl was still soiling and wetting, that she couldn't get to school because of her poor health, the fact that she wasn't really doing the usual things that children do.

Ìý

BAKEWELL

The psychologist and the social worker knew what was causing Tanya's condition: she was HIV positive.Ìý She had contracted it from her mother at birth.Ìý

Ìý

PSYCHOLOGIST

She had come over from Africa with her mother when she was a baby to stay with some other members of the family who are resident here and it became clear that there were other members who had HIV, although it was one of those family secrets that was very rarely referred to.

Ìý

BAKEWELL

HIV had already ravaged Tanya's family: several of her relations had died.Ìý Indeed her own mother had died of an HIV associated illness when Tanya was still an infant.Ìý She was one of those at the heart of what was then a global epidemic with more than medical significance.

Ìý

PSYCHOLOGIST

I think we have to see it in the context of the time - we're talking about the early '90s when this mother came from a country where there was pretty poor healthcare and HIV wasn't really thought of as if it was a health condition.Ìý It had mystical associations, it brought shame and blame on to this mother and in doing so on to how this child's future was going to be thought about.Ìý Doctors had been talking about wanting to start her on medicines but that had been very unsuccessful.Ìý Their beliefs in the family about medicines at that time were that they did very little good, they made you feel terrible, HIV resulted in illness and death and there's no point in even contemplating it.

Ìý

BAKEWELL

At the same time, there were more exact, scientific problems affecting the case.

Ìý

DOCTOR

In the early '90s, and we are talking now of a time when treatment was just beginning, we were using drugs with very high toxicity - the side effects were often extremely difficult for people to cope with and this is obviously particularly difficult for children.

Ìý

BAKEWELL

As if this situation wasn't bad enough, there was the fact that, as is routine, Tanya didn't know anything about what was making her ill.Ìý She was nine years old, but more like a seven year old in her degree of understanding.Ìý

Ìý

PSYCHOLOGIST

Tanya hadn't been told about her HIV diagnosis.Ìý She knew that she had problems with her health but she wasn't an inquisitive child and although her mother's name came up once or twice she showed very little interest in wanting to know more about what happened to her mum.Ìý So there was both a sense of the family keeping lots of secrets but also this was a youngster who wasn't in a position to know how to ask the questions that she wanted to.

Ìý

BAKEWELL

Tanya's immune system was already depleted, andÌý her doctor was keen to get her on medication as soon as possible.

Ìý

So let me introduce today's panel:Ìý Yusef Azad is Director of Policy at the National Aids Trust which is the UK's HIV policy organisation; Deborah Bowman, a senior lecturer in Ethics and Law at St George's, University of London; Dr Steve Welch is a paediatric HIV specialist at Heartlands Hospital in Birmingham and ÌýMax - not his real name - is a trustee at Body and Soul and Chair of the CHIVA Youth Committee - both charities support young people with HIV.Ìý He contracted HIV at birth.

Ìý

Disclosing illness to children - how has that changed since the '90s when this child was nine?Ìý Dr Welch.

Ìý

WELCH

With HIV at that time we didn't push families who were very reluctant to talk about the diagnosis to tell the children.Ìý There was no treatment and children weren't expected to survive much beyond age 10 to an age where they would need to know about their diagnosis.Ìý Now our expectation is that children and young people with HIV will survive into adulthood, to an age where they themselves will become sexually active or have children which are ways of transmitting HIV and must know to make informed choices about how they do that.Ìý So the fact that several years ago it was acceptable not to talk to children because they were going to die before a certain age anyway has certainly changed.

Ìý

BAKEWELL

Max, tell me about yourself and when you first learnt your HIV.

Ìý

MAX

I was disclosed to it at age 12 when I was suffering from shingles.Ìý My father was kind of forced to tell me because he couldn't explain to me why at the time I was ill, so he thought the best way to do so was to just tell me about my status.

Ìý

BAKEWELL

So he just took you aside, did he do it in the hospital, at home?

Ìý

MAX

He took me into the hospital waiting room, he told me, I cried, thought I was going to die.Ìý Went to give him a big hug, he said stop being silly, [indistinct words], like I'll give you something to cry for, this is nothing to cry for.Ìý And he kind of turned it into a positive experience which is kind of weird but something I can look back on and feel glad that he told me in that particular way.

Ìý

BAKEWELL

Yusef Azad, what do you make of Max's story?

Ìý

AZAD

Well it's a moving and powerful one and the age which Max had his status disclosed to him is around the kind of age where it's quite common now for young people.Ìý There's no right way to disclose status to somebody but it has to be done with great sensitivity.

Ìý

BAKEWELL

Deborah Bowman, what are the general rules of best practice, how does it operate?

Ìý

BOWMAN

Although we're naturally talking about age the law - and ethical practice as well - really looks at functions - so what a child can understand, what a child knows, how interested a child is.Ìý Children with chronic illness are often very able to make decisions and participate in decisions far earlier than one might think.

Ìý

BAKEWELL

Dr Steve Welch.

Ìý

WELCH

With HIV we've learned more about talking to children and young people about HIV and ways in which we can do that and ways in which we can make it less threatening to the family.Ìý You're talking about a child with a life threatening condition which carries the social stigma that HIV does, which that child has caught from its parent, of which the parent has caught sexually and that's not an easy conversation for anyone to have.

Ìý

BAKEWELL

It might be getting easier to talk to children, what's important, Yusef Azad, is that of course we're not as shy of the subject generally are we?

Ìý

AZAD

As time goes on we're less shy to talk about sex and I think the fact that there's been great advances in HIV treatment, as Steve was saying, means that when you talk about HIV you're talking about a very different set of facts and circumstances and prospects than you were in the early '90s.Ìý The one thing where there are still real issues is the issue of stigma.Ìý That's something that clearly the aunt was concerned about, it was difficult to talk about in the family and were this scenario to happen nowadays there would be very similar issues about concerns of talking around HIV, others finding out and so on.

Ìý

BAKEWELL

Max, you were nodding at that, were you aware at the time of the stigma, was your father anxious about your knowing because of that?

Ìý

MAX

I was pretty much aware of the stigma and prejudice because at that moment in time the advertisements and the media kind of portrayed very morbid images of people who were suffering from HIV.Ìý And so now because we don't have that same kind of media perpetuating certain levels or myths our kind of thought processes have changed, we start to believe that if you're HIV positive you can be a bit normal.Ìý And it's also because the social acceptance of a taboo subject, such as sex, makes it easier for people to talk about HIV and the illnesses that go along with the subject of sex.

Ìý

BAKEWELL

Let me ask you about another thing Max because this whole business of Tanya not wanting to take the tablets. ÌýDid it crop up in your case?

Ìý

MAX

Yeah it did.Ìý For me, personally, the reason that I didn't want to take medication was because my father chose not to and he was perfectly healthy and he was in good shape and he was big strong as a father figure would be, the hero type in your life.Ìý So I can see where she's coming from, to be honest.

Ìý

BAKEWELL

And what do you do about that Dr Welch, when you've got children who don't want to take tablets?

Ìý

WELCH

I wish I knew.Ìý It does depend very much on the age of the child.Ìý A nine year old, as Tanya is, she would still be very much dependent on her carers to give her the medication.Ìý And in those circumstances you're working with the carer.Ìý And in 2010 if a carer refused to give a young child antiviral medication this would be a child protection issue and we would go down the route of social services and child protection to enforce that that child gets medication.Ìý In the early '90s, which is the period we're talking about, the success of antiviral treatment was much more speculative.

Ìý

BAKEWELL

Deborah, how do you respond to what Steve has just said?

Ìý

BOWMAN

One of the things that's striking me as we talk is that it's still about largely understandably the professionals having the knowledge of what is right and I guess I would like to shift the focus and say well that might be one way of approaching it but it wouldn't be my first choice.Ìý I think seeing the child and the family in context, we've already heard that the medication is actually, particularly at this time, difficult, burdensome, horrible.Ìý And I think immediately fast-tracking it to a child protection issue probably shuts down some ethical avenues too early, would be my take on it.

Ìý

BAKEWELL

Yusef, what do you think?

Ìý

AZAD

I very much agree that this needs to be looked at in context.Ìý Amongst the things we need to think about are the fact that this is a migrant family, we know from research done by Jane Anderson and others that when HIV status is disclosed women can be evicted from accommodation, lose social support networks.Ìý The aunt, from whom Tanya may be getting cues as to reluctance to take medicine, she may have some very real practical concerns about the implications should Tanya's status be disclosed to other people.

Ìý

BAKEWELL

Particularly to her community.

Ìý

AZAD

Absolutely and where migrants are living in great poverty, poverty makes you even more dependent on a close circle of family, friends and contacts without whom you're in dire circumstances.Ìý So we need to think about the context.

Ìý

BAKEWELL

Okay, well now let's return to the story now.

Ìý

Tanya is 10 years old.Ìý Soon she'll be hitting adolescence with all the attendant confusions andÌý adjustments.Ìý The team feel she should know soon about her HIV status.Ìý They were working towards that end when something unexpected happened.

Ìý

Tanya overheard her aunt having an argument in which Tanya's HIV status was mentioned.Ìý Now she had heard it named -Ìý however regrettable the circumstances -Ìý there was the chance to help her directly, to tell her more about the illness, to explain how the medicines could help By this point she was coming to the clinic every few months…Ìý so how much did she understand?

Ìý

DOCTOR

She could repeat a good understanding of the fact that the antiretroviral medication would put her virus to sleep, would allow her immune system to become strong and would keep her healthy and give her a future.Ìý She also, even at that age, was aware that theoretically if she didn't take her medicine she could get sick.

Ìý

BAKEWELL

But it didn't really translate into practice.

Ìý

DOCTOR

Tanya found it extremely difficult to talk about HIV, to actually utter those - the three letters.Ìý Her method of coping with it, like many other young people, was to just block it out, so she put it in a box until she came to clinic and then she thought about it.Ìý However, if she was asked to take medicines twice a day that of course was a reminder twice a day that she was living with HIV.

Ìý

BAKEWELL

The psychologist too recognised that it was difficult for Tanya to come to terms with her treatment.

Ìý

PSYCHOLOGIST

There were various times when they would want to restart her on medicines.Ìý This was a young person who didn't have the capability of taking lots of pills, as they were in those days, some of them pretty foul tasting, some of them which made you feel a little bit sick to start with, some of which needed to be taken with food and others that didn't - a complicated regime.

Ìý

DOCTOR

She would have,Ìý as all young people, good months and bad months.Ìý Occasionally she would take her medicine effectively enough to fully suppress her virus, so that's putting your virus, as we say, to undetectable levels, and then she would sort of tail off, lose the enthusiasm and stop taking her medicines.Ìý I mean I think for Tanya and for many teenagers the fact that what we're doing with the medication is to put your virus to sleep, to stop you getting unwell in the future is a very difficult concept for a 12, 13, 14 year old who developmentally will be living in the moment to actually act upon without an awful lot of support from families and carers.

Ìý

PSYCHOLOGIST

No one was reminding or supporting her taking them and they didn't make her feel better, in fact they were a reminder of something that was bad that she was doing which the family felt negative about.Ìý So you know there was not a lot going for good adherence.

Ìý

BAKEWELL

Her medical team tried everything, and TanyaÌý was going along with them to some extent. Her socialÌý worker was in touch with her aunt and working with her to try and make sure Tanya stayed on course.Ìý

Ìý

DOCTOR

She also used to attend one of the peer support groups, where she would meet with other young people who were also living with HIV and she used to say that she didn't necessarily talk to them at all about the disease but she just felt comfortable and supported in that environment and it was an environment where she didn't have to live basically a double life.

Ìý

BAKEWELL

Tanya was now 12 years old, soon 13.Ìý She managed to stay well and was going to school but was dogged by problems….she had much less energy,Ìý and was slow to grow and go through puberty. These were all hidden but unmistakable symptoms of her chronic long term condition. But for Tanya this was normal, she didn't know anything else, so from day to day it wasn't really a problem.Ìý But over time there was an inexorable decline.

Ìý

DOCTOR

Over the next three or four years her immune system very slowly began to dip as she found continuing difficulty, despite a lot of education and support, to take her antiretroviral medication in any consistent way.

Ìý

BAKEWELL

And added to all this, Tanya was confronting the challenge of becoming a teenager … harder for her than for most….

Ìý

PSYCHOLOGIST

Her body went into adolescence.Ìý Part of her behaviour went into adolescence but she was emotionally and socially stuck at a very young age, not really able to make sense of it.Ìý The lateness in finding out about the name of her chronic health condition and then facing adolescence where actually HIV becomes something completely different, not only have you got to look after your health but you have to take a responsibility for making sure that you don't transmit it.

Ìý

DOCTOR

She would say that it wasn't fair, it's not fair to be born with HIV.Ìý And it's not fair to have to live your teenage years with a secret that you can't share.Ìý It's not fair to feel that onus of all the responsibility is on you for keeping other people safe.Ìý Now a lot of young people have never told anybody and Tanya, like many other young people, found that extraordinarily difficult and didn't disclose her status to her partners.

Ìý

BAKEWELL

Whenever Tanya came to clinic she was reminded about the need for safe sex:Ìý she was given repeated advice about contraception.Ìý It must have been hard to burden her with the responsibility of keeping her sexual partners safe. She insisted she always used condoms.

Ìý

DOCTOR

It's quite difficult to empower young women to negotiate consistent condom use with a population of young men who often really don't want to use condoms and aren't interested.Ìý So we'd have a lot of discussions but these conversations are very difficult for young people to have so a lot of it is given in the form of generic education, rather than a two way conversation.Ìý And then occasionally she'd pop up and ask a question.

Ìý

BAKEWELL

By the age of 16/17 Tanya was rarely coming to the clinic:Ìý her medicationÌý was intermittentÌý and her immunity was so low that she was by now at risk of life threatening infections.Ìý It reached the stage where she could no longer ignore her HIV, but she would only visit the hospital when there was a real crisis, and even then she would avoid admission.

Ìý

Then disaster struck. HIV had affected her blood's ability to clot and she began having torrential nose bleeds.

Ìý

DOCTOR

These were so extreme that actually she would collapse, she would be rushed to hospital with very severe anaemia, she would then require transfusions, having bled out really two-thirds of her body blood volume it must have been an absolutely petrifying experience and if it wasn't for a friend who was with her at the time and actually called the ambulance she really would have died then.

Ìý

BAKEWELL

On that occasion, Tanya agreed to stay in the hospital to have treatment and accept more support: it began to look as though her attitude was changing and she was acknowledging the seriousness of her illness.

Ìý

DOCTOR

Her whole attitude appeared different, she appeared more positive.Ìý Her self esteem, which had been so low for so long, just appeared boosted that she had made a decision to do something for herself.Ìý And sometimes we say it takes somebody to become very unwell to really understand the importance of treatment.

Ìý

BAKEWELL

Right we go back to our panel now.

Ìý

Max, I must ask you, because the issue came up earlier, about speaking the letters HIV, was it difficult for you?

Ìý

MAX

For me personally it wasn't difficult because I was around it all the time.Ìý I accessed peer support groups, it was something that we discussed on a regular basis, I had the conversation with my father and I understood what the letters actually stood for, which made it easier for me to digest, I wasn't force fed information by the media.

Ìý

BAKEWELL

Being a teenager is quite a rocky affair isn't it - mood swings and so on - did you go through that?

Ìý

MAX

Yeah I went through that, just like every teenager, I was a strop.Ìý I used to annoy my father and my brother and my sister, I used to bang my brother's head against the walls for no reason, just walk past give him a little slap.Ìý Everyone goes through that at some point.Ìý And I feel that when you're treating teenagers it's about communication ultimately and how can you relate best to that individual.

Ìý

BAKEWELL

Dr Welch - treating teenagers, is it an added problem?

Ìý

WELCH

Undoubtedly it is.Ìý It can be exasperating but what's clear from Tanya is that simply taking the medicines is not the most important part of your life, there are far bigger issues that are going on from day to day.Ìý And our challenge is to try and understand that and keep our patients going - to somehow take enough medicine to get through to the next stage and be able to get on with it.

Ìý

BAKEWELL

Given that that's so can teenagers be considered able to make a judgement?

Ìý

AZAD

I think they can, I mean I think you have to assess that on an individual basis, teenagers vary a great deal.Ìý I mean I think in Tanya's case of course it was unfortunate that this kind of double whammy of overhearing about her HIV infection, also told at the same time she's responsible for other people's sexual health - this came at the moment she was entering her teenage years, if only she had been able to start on treatment and learn a bit about her condition a bit earlier.

Ìý

BAKEWELL

How did you manage that Max?

Ìý

MAX

The transition was difficult.Ìý You have to learn to balance your status, your health, with your social life.Ìý And that's also the most difficult thing and I think Yusef's right - she was capable of deciding which direction her healthcare would take but ultimately the reason that she chose not to was because it was a consistent reminder of her mortality - her mother died as a result of HIV - and anybody of that age wants to shirk responsibility, wants to be a child.Ìý So I can completely understand where she comes from.

Ìý

BAKEWELL

Deborah Bowman, does the law give children the right to make decisions?

Ìý

BOWMAN

Absolutely. The case of Gillick involved a mother of teenage girls and the case essentially turned on whether teenagers could make decisions and the courts have said that if a teenager has sufficient understanding then a decision can be made.Ìý But nonetheless children's refusals have been overridden.Ìý So teenagers who are competent, using the Gillick criteria, have had their refusal of treatment overridden, they are largely mental health cases and although most practitioners do not seek to overrule the wishes of teenagers it is still possible.

Ìý

BAKEWELL

Yusef.

Ìý

AZAD

Following on from what Deborah said.Ìý I think the difficulty, of course, with HIV, which requires a daily regimen of drugs, and so in practical terms though the power is there it's very difficult to see what could really have been done without Tanya's compliance.

Ìý

BAKEWELL

Max, briefly.

Ìý

MAX

Well just following on from what Yusef just said.Ìý If you had a patient who was suffering from a form of cancer or leukaemia and they refused to take treatment would you force them?

Ìý

BOWMAN

That's such a brilliant example Max because one of the most famous cases involved a Jehovah's Witness boy refusing treatment for his leukaemia.Ìý He refused repeatedly, there was a court order repeatedly and when he reached the age of 18 at that point his refusal was legally valid, couldn't be overridden and he died a few months later, devastated at the effect of receiving blood products on his life.

Ìý

BAKEWELL

What about the issue of confidentiality - who can they tell, who should they tell and what about data protection?

Ìý

AZAD

I was very struck by Tanya saying repeatedly it's not fair and she's right - it isn't fair.Ìý Another area of law that's come in recently is prosecuting people for passing HIV on.Ìý And depending on the teenager's knowledge of his or her condition and how it's transmitted it's possible that this law could apply even to someone under the age of 18.Ìý And I think it's very unfair that Tanya should be burdened with that kind of responsibility when we don't have any requirement that schools teach sex and relationships education to our young people.Ìý And as was said in the intro we just heard to require Tanya to insist on condom use when she doesn't wear the condom is very difficult.Ìý The alternative in terms of criminal prosecutions is disclose your status but there's no data protection in the bedroom, so it's a very, very difficult situation ethically I think.

Ìý

BAKEWELL

She's under a tremendous burden, as you say, quite rightly, but she's also under the burden of she's having nose bleeds - what's her responsibility for people who might be contaminated by her blood?Ìý Steve.

Ìý

WELCH

That is one area where we've moved away from putting the onus on the infected person.Ìý We know that a third of cases of HIV in this country are undiagnosed and the advice given to anyone dealing with blood or any other body fluids is that you should assume that all blood is infected, whether or not you know the person's HIV status.

Ìý

BAKEWELL

What's the legal situation here?

Ìý

BOWMAN

In terms of disclosure?

Ìý

BAKEWELL

Disclosure and also contaminating other people inadvertently.

Ìý

BOWMAN

The general rule is that information, medical information, is confidential.Ìý If Tanya has the ability to make decisions she is as entitled to confidentiality as anybody else.Ìý The only exceptions to that, and they are very, very rare, is when there is a serious risk of physical harm to a third party, you may breach confidentiality, it should only be done on a need to know basis and I don't see this as one of those circumstances at all.

Ìý

BAKEWELL

Let me bring the story back to Tanya's own condition.

Ìý

After going home from hospital, feeling more upbeat, she was able to take her medicines regularly for a time.Ìý But then there was another tragedy - within a few weeks her aunt died.

Ìý

DOCTOR

After that happened it was such a traumatic event for her that she stopped taking all her medication, she stopped turning up to hospital outpatients appointments and she really didn't want to engage any longer at all.

Ìý

BAKEWELL

The outlook turned bleak.Ìý Now 18 years old, Tanya was offered housing where there was live-in support but she turned it down. Instead she was re-housed in a flat of her own with care professionals seeing her on visits.Ìý It was far from what Tanya could cope with and the situation deteriorated.

Ìý

DOCTOR

If you have a flat full of young teenagers it becomes quite problematical, so there are issues with housing, with rent arrears, with the police being called, with noise abatement and much of this was not Tanya's own fault but she didn't have the skills to negotiate with other possibly more forceful streetwise older teenagers who would just see this as a place where they could all congregate and have fun with no real adult supervision.

Ìý

BAKEWELL

By now her chaotic lifestyle made it more and more difficult for anyone to help Tanya.Ìý The doctor tried to get her to share the fact that she was HIV positive with those close to her: the doctor thought it would help.Ìý But that wasn't how Tanya saw it at all….

Ìý

DOCTOR

Once when I was encouraging her that that would be a good thing to explore further she said - I'd get shot if he knew.Ìý You know it wasn't a flippant remark, it was a reflection of the stigma around HIV and that she would potentially be in danger, given the quite chaotic high risk teenage section of society that she was having to manage her life in.

Ìý

BAKEWELL

By the age of 18 TanyaÌý was seriously ill again there were nosebleeds.ÌýÌý And it became of the utmost urgency to get her to take her medication again.Ìý Was she suffering from depression - a psychologist and psychiatrist made their assessment. No: she wasn't depressed.ÌýÌý Her medical team was by now desperate to convince her of the benefits of consistent healthcare.

Ìý

They came up with a new idea:Ìý they would arrange for Tanya to go into a hospice for respite care.ÌýÌý There she would have her own bedroom, bathroom and a certain degree of independence, even self-reliance.ÌýÌý Reluctantly she agreed.Ìý At this stage she had a chest infection, her skin was in poor condition, she was wasted and weak.Ìý The palliative care doctor:

Ìý

PALLIATIVE CARE DOCTOR

There was a very early battle that we had to win, which was to try and get on her side and get her trust.Ìý And that meant sitting down, spending a lot of time with a fairly kind of unruly teenagers who really didn't want to be there and was much more interested in listening to music, going out, doing some shopping.Ìý So it was about trying to grab her when we could or when her friends weren't taking her out.Ìý On a couple of occasions they borrowed a wheelchair and took her out and she went to the high street and went shopping and things.Ìý And over a few days I think she thought we weren't too bad and actually okay I'll take the tablets.Ìý So it was a bit of a kind of reluctant shrug - yeah okay I'll do what you want.Ìý And I suppose our concerns were how replicable this was going to be when she was discharged from the unit.

Ìý

BAKEWELL

Indeed, even in the hospice, she often had to be reminded to take her essential medication.Ìý Doctors worried that Tanya simply did not comprehend how dangerous her wayward behaviour could be.

Ìý

DOCTOR

She'd had a very low immune system for a long time so that means that you can get infections, and including infections in your brain, that can affect your capacity to make decisions to think about the consequences of your actions.

Ìý

PALLIATIVE CARE DOCTOR

Did that really mean therefore that we were dealing with a competent adult or did we need to think about how we'd act on her behalf?

Ìý

DOCTOR

She had a reading age more of a sort of eight, nine year old.Ìý A lot of her behaviour was consistent with a much younger adolescent, rather than an 18 year old.Ìý And it was really that feeling of being very uncomfortable with the decision she was making.

Ìý

PALLIATIVE CARE DOCTOR

In all of this kind of angst and head scratching the HIV consultant and I went up and talked to her for about half an hour.Ìý We explained to her that this was going to be very potentially upsetting but we needed to have that conversation with her because we needed to know that she knew why she was taking or not taking those drugs.Ìý And if she did do that then we could kind of arrange for her to go home with the right support.Ìý But if we were unable to assess her in that way then there would have to be other people that would come in and talk to her and potentially it could get quite - quite difficult and tricky.

Ìý

DOCTOR

Everybody agreed that she did still have capacity to make decisions - to consent to treatment.Ìý But I think we felt very uncomfortable that it was a rather low benchmark, that this wasn't necessarily a decision that she would take when she was say 25.

Ìý

BAKEWELL

After much deliberation, a couple of weeks later, Tanya was allowed to go back to her own flat.Ìý Funding was found for a nurse to come in twice a day to make sure she took her tablets.Ìý Initially the set up seemed to work:Ìý but not for long.

Ìý

DOCTOR

As the weeks went on unfortunately she was either not there when the nurse went round or if she was there she didn't open the door because she didn't want them to come in and she didn't want to take treatment.Ìý Really by this stage we were all very aware that she was going to die really quite soon if she didn't take treatment.Ìý So we decided to take her case to the clinical ethics committee.

Ìý

BAKEWELL

Back to our panel now.

Ìý

Deborah, Tanya is 18, her medical team are desperate, how are they able to force her to take her medication?

Ìý

BOWMAN

If she's capacitous they're not.Ìý Their discomfort is palpable and understandable, it's an invidious position.Ìý Nonetheless she is sending a very clear message that she's at best ambivalent about taking her medication and if she has capacity, I think the reading age is a red herring, it doesn't matter how well you read, it has to be respected.Ìý All that can be done is to develop - and it sounds like this team are trying to do this - the sort of relationship where perhaps, even within the tight timeframe, there is room for her to change her mind or to compromise on some aspects of care but beyond that they can't force her.

Ìý

BAKEWELL

Though you often say of teenagers generally don't you there's no arguing with them, there's nothing you can do and it must be so frustrating with the responsibilities you have as a doctor to your patient - Dr Welch?

Ìý

WELCH

It is extremely frustrating and I wish I knew the answer to change that.Ìý All we can do is give them the opportunity to come back and talk to us again about treatment.

Ìý

BAKEWELL

Max, have you yourself had experience of being reluctant to take your medication yourself?

Ìý

MAX

Yes, my father didn't take any medication, so he was kind of the benchmark for me to see whether or not I can live my life without medication.Ìý But he passed away four months after I was disclosed to and my doctors turned round and said to me you need to take your medication and I was on and off.Ìý But to talk about Tanya specifically.Ìý I feel that her confusion is basically the same confusion a teenager would generally feel because she's trying to live two lives - as she said before - and if her friends are going out and partying and having fun and don't share the same responsibilities then how do you expect her to act in a particular way that is different from them?Ìý Initially at 11, 12 she was accessing peer to peer support networks and I feel personally in my confusion attending places like Body and Soul allowed me to just be myself and just open up and learn, indirectly more about my own health through other people and through the organisation.

Ìý

BAKEWELL

How difficult is it to overcome the dilemma of telling a partner that you are HIV positive?

Ìý

MAX

It's incredibly scary, it's very, very difficult.Ìý Now I'm quite open.Ìý Every single partner I'm with I disclose to.Ìý But initially I was scared because I thought that she would blame me, she would attack me, rip my hair out because I know how women can fight sometimes or she would be very aggressive towards me and may not accept me.Ìý And so I did it as a result of the condom splitting and I thought that it was my responsibility to tell her and so I sat her down and I told her.Ìý But her response was are you going to die and I was like no, are you going to hit me, are you going to punch me, are you going to do something aggressive - she goes no, I'm not going to because I understand why you didn't tell me.Ìý But I had the benefit of knowing someone who was well educated in that sense.Ìý Some people will encounter people who, as Tanya said, will turn round and say I'm going to shoot you.

Ìý

BAKEWELL

Yusef.

Ìý

AZAD

I'd like to think more about this issue of capacity because capacity, the way it's thought about, really privileges the idea of personal autonomy.Ìý But again let's think of the context, the choice agenda.Ìý Privilege is people who are good at choosing above people who are less good at choosing because of the context they're in.Ìý It's clear from Tanya's story she had the capacity not to take treatment, does Tanya's story really tell us she has the capacity to take treatment?Ìý I'm not sure it does.Ìý I'm not sure in terms of ethics whether it's right for us to say someone has the capacity to do something if she patently doesn't have the ability to do it.

Ìý

BAKEWELL

There is another issue here - we've heard that HIV can affect the brain and the decision making capacity, so that must be a consideration?

Ìý

WELCH

It certainly is a consideration.Ìý Unfortunately it's an area that we're still learning about, we're only now learning what the long term effects of HIV or antiviral drugs on someone's decision making are.

Ìý

AZAD

Absolutely and we have to situate discussions of capacity in the context of Tanya's immense social vulnerability.

Ìý

BAKEWELL

There seems to be a real point here where society's behaviour let Tanya down.Ìý They provided her with a flat entirely on her own - now that's risky enough with teenagers generally but with someone in her condition, well what do you make of that Deborah?

Ìý

BOWMAN

I think it's really a function of how health and social care are organised.Ìý I think for all sorts of reasons which allude me we may not be very good at managing transition and certainly I think the transition between health and social care but also paediatric and then adolescent and then adult services.

Ìý

BAKEWELL

And of course she was at a transition stage - she was 18 - but nonetheless this is all bureaucracy, can't people have their heads banged together until these problems are addressed properly?

Ìý

WELCH

I mean we've tried.Ìý I think in HIV medical care the transition of young people into adult services is something that we're learning to do as people survive now into adulthood.Ìý But the loss of support that happens when someone hits 16 and then 18 that support unfortunately just melts away and leaves very vulnerable young adults.

Ìý

BAKEWELL

Yusef.

Ìý

AZAD

The government's just announced they're ending the protective ring fence around HIV social care funding, so I think it's really important to stress - and Tanya's story demonstrates it so eloquently - that HIV social care remains a real important issue where local authorities need to invest.

Ìý

BAKEWELL

So I'm going to ask you now what would you advise?Ìý Dr Welch.

Ìý

WELCH

I would dearly love to be able to persuade Tanya to take her treatment but I couldn't force her.

Ìý

BAKEWELL

Deborah.

Ìý

BOWMAN

I would not want Tanya to be forced to take treatment.Ìý I would want to know that there were relationships that might allow her to continue talking to the team - that may be medical but may be broader social peer support etc.

Ìý

BAKEWELL

Yusef.

Ìý

AZAD

With reluctance I think it's not possible to force Tanya to take treatment, so we shouldn't do it but we must do - carry on doing everything to try and make sure she has the support to change her mind and adhere to her treatment.

Ìý

BAKEWELL

And Max.

Ìý

MAX

I believe you shouldn't force her to take treatment but you should look into other avenues of assisting her maybe in the future to make a decision to go back on to treatment.

Ìý

BAKEWELL

Thank you all for your comments.

Ìý

Lets hear now what happened in this real life case…

Ìý

DOCTOR

The clinical ethics committee felt that all avenues had been explored.Ìý But what they did say was just keep the door open and that you are going to be managing her at the time she becomes unwell, which is really what we had been doing.

Ìý

BAKEWELL

And then, several months later Tanya was back….

Ìý

DOCTOR

She came back asking to start treatment because she started losing a lot of weight and again took treatment for two weeks and then stopped.Ìý And a couple of months after that she came into hospital, extremely unwell, going into septic shock.Ìý However, she was still conscious and when I met with her she was able to say very clearly that she didn't want to go on to intensive care and that she had had enough.Ìý We talked with her extended family, with the members of the intensive care team and made a decision that we would respect her wishes that really had been consistent lifelong wishes not for further intervention.Ìý And very sadly she died peacefully a few days later.

Ìý

PSYCHOLOGIST

Reflecting back on this makes you feel really sad, it is more than somebody who couldn't take her medicines - this was a youngster who was a recipient of other people's views and wishes and her life was so split into different portions that she felt if she did what the medical profession was wanting would she have to give up her loyalty to her family's beliefs.Ìý So maybe at the end of the day she was true to fulfilling what her mother's wishes were.Ìý Whether they were her wishes I don't get a feeling that we'll ever really know but I think that actually she wanted to be her mother's daughter.

Ìý

ENDS