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Advance Directive

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A woman is brought to A&E by her husband . She is unconscious having attempted suicide. She's been in pain for more than 30 years with severe arthritis. Having witnessed elderly relatives' death in distressing circumstances years ago, she and her husband have written living wills or advance directives. They ask for no medical treatment in certain circumstances. She has always maintained with everyone she knew that she doesn't ever want to be admitted to intensive care. She has left five copies of her advance directive with her husband, sister, daughter, lawyer and GP. The staff in A&E are torn about what to do - should they admit her to intensive care and save her life, or let her die ?
What should hospital staff do? Do they admit her to A&E against the spirit of her advanced directive or give basic treatment knowing it might prolong her life against her wishes but prevent a slow painful death caused by the overdose?
Joan Bakewell is joined by a panel of experts to discuss the complex ethical issues around advanced directives and decision making at the end of life.
Producer: Pam Rutherford.

Available now

45 minutes

Last on

Tue 10 Aug 2010 21:00

Programme Transcript

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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

           

Programme no. 4 - Advanced Directives

 

 

 

RADIO 4

 

TX DATE:                  TUESDAY 10TH AUGUST 2010 0900-0945                      

 

PRESENTER:           JOAN BAKEWELL 

 

CONTRIBUTORS:   DEBORAH BOWMAN

                              DEBBIE PURDY

                              ANDREW HARTLE

 

PRODUCER:             PAMELA RUTHERFORD

 

 

 

 

 

NOT CHECKED AS BROADCAST


BAKEWELL

How should medical staff respond in an emergency to a patient's living will -  a document  asking for no treatment?  And suppose that emergency is a failed suicide bid: what then?

 

Welcome to Inside the Ethics Committee. 

 

This week we look at issues around the end of life - more specifically at  how medical staff respond when a patient  has written down,  in what's often called a living will, what they want to happen in the event of a sudden emergency or the deterioration of an existing medical condition.

 

We consider the case of Emily, a lively woman, who with her husband, Callum  enjoyed an active life. 

 

CALLUM

She was a very outgoing person, very positive, had very strong views on nearly everything.  She didn't recognise restrictions on anything she wanted to do.  If she suddenly had an idea that she would like to do something she did it.  She was the most widely read person I'd ever encountered and considering she'd left school at 14 with no education I found this utterly amazing.

 

BAKEWELL

Emily was fit and healthy until she reached her early 40s and her health started to deteriorate. After a bad bout of shingles she developed ongoing problems with back pain.

 

CALLUM

She had intermittent back problems, I would say, for about 10 years, she kept going back to this osteopath who - he got her sorted.  But it did get steadily worse to the point where she gave up violin teaching because when she came home from work in the morning she had to go and lie down.  There was just a general deterioration in her health.  So when the opportunity came up for me to take early retirement we went for it and we bought a derelict barn, converted that into a very nice little country cottage.  She did a lot of the conversion work herself.  Took up dry stone walling.  But unfortunately she broke two ribs on the dry stone wall.

 

BAKEWELL

And it was this that prompted her to see a consultant to find out what might be wrong 

 

CALLUM

His very words were that her calcium levels were off scale and that she must be very, very careful.  And in fact our young son broke one of her ribs just giving her a hug one day.

 

BAKEWELL

And by the time she was 54 Emily's health got worse. She had a heart attack and continued to have problems with angina. She was also referred to a rheumatologist.

 

CALLUM

The diagnosis there proved a bit difficult, she obviously had rheumatoid arthritis by this stage but she was developing other symptoms.  She was put on various drugs which worked to some extent but none of them took the pain away.

 

BAKEWELL

Emily's quality of  life had now deteriorated quite seriously.  She was in fairly constant pain with severe rheumatoid arthritis. But it was the fate of others in their immediate family that influenced Emily and Callum to give some thought to how their own lives might end.   

 

CALLUM

We'd had a very sad experience with her mother's death, her mother had six weeks in hospital just wanting to die.  And a few years later we had a similar kind of problem with my father - he was miserable in hospital, he came out, had to go into sheltered accommodation which he hated and spent four years wanting to die.  After his unfortunate experience in hospital Emily and I decided we, together, didn't want to end up in his condition or in her mother's condition and so we decided to join the Voluntary Euthanasia Society, as it was then, and write living wills.  And at the same time Emily made it very clear that she was going to go a step further and that she was going to acquire an overdose.  She said that her health was deteriorating very rapidly, whereas mine wasn't, and that she would know when the time was ready to take it.  She made it very clear to me that I wasn't to be involved, as she said quite happily - I can't do with you spending 14 years in jail on my account.  I know she discussed it with our two sons and she told various friends about it.

 

BAKEWELL

Emily and Callum had shared their decision:  the understanding between them was so clear that when the moment came it wasn't a great surprise.

 

CALLUM

She didn't involve me in any way but she was never particularly subtle, she's no idea of deceit.  So when she asked me to go out and buy her a bottle of brandy I thought well is this what she's going to do but I didn't query it.  She was having a very bad time, so I'd moved into the spare bedroom by this time.  So she went off to bed, maybe half past 11, and I went off to bed and read for a while and went to sleep.  The following morning, when I woke up, I could hear her breathing in the other bedroom and when I came downstairs I found a note saying don't get me up.  Well this wasn't unusual - if she left a note saying don't get me up I would leave her till lunch was ready.  So I did that and I went up and found she was unconscious and the suicide note was there and basically it just said she decided it was time to end her life, she'd thought about it very carefully, it said what she'd taken and it emphasised the fact that nobody else was involved, it was entirely her decision. 

 

Now I felt this was the first decision, I knew what her wishes were, I got the advance directive out and read it and I thought I have to decide - I have to make the first decision.

 

BAKEWELL

This is the moment to call in our panel of experts to discuss the case so far .  They are:

 

Deborah Bowman, Senior Lecturer in Medical Ethics and Law at St George's University of London.

 

Debbie Purdy who has Multiple Sclerosis and made headlines when she sought clarification from the Director of Public Prosecutions about what would happen to her husband if he helped her die. She now assists in student training at Leeds Medical School.

 

And Andrew Hartle,  a clinician with 20 years experience of intensive care and a former chair of the clinical ethics committee of a London hospital.

 

Well this is indeed a dilemma for Callum.  Debbie Purdy, what do you make of this personal story?

 

PURDY

I think he's got to respect her wishes in this situation.  But I think there are lots of questions that mean he shouldn't be in this situation because so many things should have happened first but if they didn't, in this situation, I think he's got to respect her wishes.  He loves her and she's an intelligent woman.

 

BAKEWELL

But she survived a suicide bid, should he simply leave her in her bed?

 

PURDY

If her express wishes are that that's what she wants to happen I think he's got to take those into account.  I understand him wanting to do other things and I think that it's so hard that the woman he loves is in a situation that he should be able to ask for help to make her comfortable, to make sure the drugs are appropriate and they're not going to leave her in a worse situation than she was in already.  Those are the things he's got to consider.  But he loves her, he's got to follow her wishes.

 

BAKEWELL

It's a medical problem now isn't it because it is a failed suicide bid - Andrew what should he do?

 

HARTLE

He's in a very difficult position now.  I think with the number of hours that have probably passed since she's taken the overdose it seems unlikely to me that she's going to die from the overdose but we don't know what tablets she's taken, it's possible, for example, if she's managed to store up enough paracetamol tablets that she could wake up from whatever sedative she's taken and yet subsequently develop liver failure.

 

BAKEWELL

Well we know she's had a bottle of brandy.

 

HARTLE

Well a bottle of brandy but you know she may well sleep that off.  If she's survived eight to 12 hours after the overdose she's probably not going to die immediately from the overdose but she may subsequently die from the complications of the overdose.  So Callum's in a really difficult position because I don't think that this lady's achieved her primary goal and yet she could potentially either recover with severe disability or wake up and go on to die of liver failure and that's a very unpleasant painful death - the very thing she wanted to avoid.  I can understand that he might want to leave her be but I don't think that just leaving her is going to inevitably result in her death.

 

BAKEWELL

We're talking about people's ethical obligations, Deborah Bowman, so what do you believe in personal terms is Callum's responsibility to Emily?

 

BOWMAN

I think I'd follow on from what Debbie said that the way I see their relationship, any duty of care - and you can approach that legally or ethically or both - is borne out of love, it's borne out of a long term relationship between two adults.  English law, generally, we don't have a responsibility to rescue others, although there are exceptions to that, and sometimes within the family one does question although that's usually to do with parents and children.  I think the interesting thing is not so much whether or not he has a duty of care, which I suspect most of us think he does on some level, but actually what meaning he can give to that duty of care given the prevailing uncertainty.  So can he prevent his wife from being in a worse situation or inadvertently will he exacerbate her situation and he doesn't know that.  So I think it's not so much whether he has the duty of care but what form that takes.

 

BAKEWELL

Can people believe that they understand each other and when the moment of crisis arises actually misunderstand each other?  Debbie.

 

PURDY

It's really hard for somebody to dissect what is really at the heart of what somebody means and I think it's almost impossible to understand fully what another human being means or intends by what they do or say.  And I think therefore we have to be governed by what they say, we can't second guess it and assume that we know better than what they said.

 

BAKEWELL

Is there a burden that Emily is putting on Callum, her husband, that is almost more than you should expect of someone?

 

HARTLE

It's difficult to know what you should expect, particularly from your husband or wife, I mean that's sort of goes to the crux of being partners or married, that's the person that you love most, you've chosen to be with them.  I'm not sure how you measure the degree of burden.  At least in this case they talked about it.  What would have been far worse if they'd never had this discussion, there had never been an advanced decision and Callum had come across a suicide note in the same circumstances, at least they've had the chance to talk about it before.  That may not make the decision any easier.

 

BAKEWELL

Deborah, what do you think?

 

BOWMAN

Yes and I think one of the ways in which burdensome and painful might be distinct here actually and just because something's painful and hurts it doesn't necessarily mean that it's not your decision to make.  And it may well be, it sounds like, it is to a large extent.  But these are people who are deeply in love, who had very difficult conversations and had a commitment to each other and therefore it's not too much of an extension of that to think that Callum may be able to make a choice.

 

BAKEWELL

Right, well let's go back to the story now.  Finding Emily still alive - the suicide bid having failed - what did Callum decide to do?

 

CALLUM

I realised she couldn't have taken it earlier than 11.30 the night before, so it was about 12 hours since she'd had it.  Perhaps I should have explained that I have Asperger's Syndrome and under conditions like this I just become completely logical, it's not a problem to me, I don't panic.  I thought she hasn't had the drug in her system for more than about 12 hours, it hasn't killed her, it's unlikely to now. The best thing to do is have her in hospital because if she's left at home her condition might deteriorate but not be fatal, so she might be worse off staying at home than going into hospital.  So I phoned the health centre but our GP had gone for lunch, so I thought well there's nothing for it, I just dialled 999.

 

BAKEWELL

So Callum went with Emily to hospital. The first consultant to see her  takes up her story.

 

CONSULTANT

In the casualty department she was deeply unconscious so that she was unable to talk to us, we were unable to rouse her in any way and perhaps most importantly at all because she was so deeply unconscious she wasn't able to breathe properly because her tongue was folding back and blocking her breathing tubes.  And so a relatively rapid decision had to be made.

 

BAKEWELL

So what should they do? Should they intervene and  treat her or let her die there in a hospital ward?  In her unconscious condition with her breathing tubes blocked, the lack of oxygen to her heart and brain could cause either death directly or leave her in a much worse condition if and when she did wake up. 

 

But the consultant also had a copy of her advance directive.

 

CONSULTANT

It was a pre-prepared form which listed six conditions that she felt would be so severe that she would not want medical treatment for.  Now within the letter of her advance directive she had none of those six conditions.  And so if I follow the letter of what she wanted it was clearly appropriate for me to treat her.  But I want to balance that against what would she want from me if she was awake and able to tell me.  From the view of her advance directive it was appropriate to actively treat her.  The wider spirit not covered by the advance directive was somewhat different.

 

BAKEWELL

The second consultant at the hospital who was to take over her care was concerned about the interpretation of her advance directive in the context of an overdose.

 

SECOND CONSULTANT

It's very difficult because when you're looking at an advance directive and in this case it would be called an advance decision to refuse treatment now - an ADRT - when you're looking at a refusal of treatment then that would include intensive care from her side, you don't have the opportunity to actually question the patient and to actually work out what they actually meant and why they meant it and what really were they talking about and did they have capacity when a. they signed the advance decision to refuse treatment but we would usually follow that and if she presented with any other form of pneumonia, septicaemia, obviously that would be respected.  But in her case she took an overdose and one has to assume that's because of the pain of her condition at the end and whether that was actually potentially treatable or not.

 

CONSULTANT

I interpreted their presentation to casualty as an unspoken willingness for us to treat her.

 

BAKEWELL

So there was now another consideration for medical staff looking after Emily.  If she had chosen suicide because of her deteriorating medical condition was it possible to treat her underlying illness in ways that had not been tried so far and which might prove more successful?  Emily's medical team was all awake of how delicate a matter it was.  Issues around suicide and patients' declared wish to be allowed to die make headlines.  Debbie Purdy's case had resulted in the Director of Public Prosecutions clarifying the legal position for those who help others to die. But no two cases are the same and  interpretations can vary.

 

SECOND CONSULTANT

There were a variety of views that some people felt that to not have intubated and ventilated her would be somehow then being complicit in this suicide, almost like an assisted suicide, if they hadn't have actually intervened with this.  Whereas the - I think the prevailing view was the fact that she had taken an overdose, this was an attempted suicide, one has to assume that patients who are attempting suicide, if you haven't had the opportunity to discuss things with them, do not have capacity when they're actually attempting the suicide, especially if you have not had the chance to actually discuss anything with someone they just present unconscious.

 

BAKEWELL

Right back to our panel now:  a whole range of issues raised.

 

Firstly let's clarify here: What is a living will?  What is an advance directive and what status does they have in law? Deborah Bowman.

 

BOWMAN

The answer is that they have - are often used as synonyms.  The correct terminology these days is an advance decision.  Under the Mental Capacity Act you can make an advance decision to refuse treatment, including life saving or life preserving treatment, provided certain criteria are met.  On the whole other terms like living will, advance statement and advance directive are used more loosely.  They may be about expressing preferences, they may not be in writing ...

 

BAKEWELL

Do they have legal status?

 

BOWMAN

They can do - they can do absolutely and even post Mental Capacity Act if an advance directive exists in a particular format then it can have validity.

 

BAKEWELL

We'll come on to interpretation in just a moment but Debbie Purdy, have you signed such a document?

 

PURDY

I've got an advanced directive and I've got lasting power of attorney.  But I think that because the media has been good about expressing my point of view and the alternatives and my doctor is incredibly engaged, she doesn't agree with me at all on assisted dying but she engages with me in terms of treating my illness and the fact that I don't want to die and I am prepared to look at all forms of treatment.  But those assume an engagement with the people who can support those choices and not everybody chooses to engage in those activities.  So I think that it's important but you can't allow the assumptions that any attempt at suicide suggests that there is mental incapacity, that there is such a thing as a rational suicide and that some people make a choice based on what their living conditions are - the pain they suffer, the social situation they're in - and decide they would rather not be here.

 

BAKEWELL

I suppose Emily's consultants have pointed out the difference between the letter and the spirit can be open to interpretation, so presumably it's quite hard to write a document that is without challenge.

 

HARTLE

It's very difficult, badly written advance decisions are as bad if not worse than badly written wills, you may be better off without one.  The difficulty is finding language that's precise enough to convey what it is the person writing the advance decision wants but then not being so prescriptive that there is some reason that it doesn't apply in the circumstances that arise because for doctors to follow an advance decision they've got to be quite certain that what's written in the document applies in the circumstances they're facing now.  There's probably another bit as well which is quite frankly doctors find it much easier to follow advance decisions when it's in agreement with what they want to do and it can be quite easy to find reasons not to follow them if you don't think it's the right thing to do.

 

BAKEWELL

Deborah Bowman the directive that Emily signed listed particular conditions, is that a mistake?

 

BOWMAN

Do you know it's really interesting because actually the commonest reason for advance decisions to fail turns on specificity and it's exactly this that if you are so specific and you have a list anything that's out with that shopping list, for want of a better phrase, can be said not to be applicable, if it's too broad or euphemistic or vague then it's incredibly difficult to say it applies to this specific situation.  And I think when you factor in all those other very human things most people don't go into medicine to allow people to die, they go in to save life, to improve life - it sits very uneasily for many clinicians making difficult decisions in an acute situation.

 

BAKEWELL

We'll come to them in a moment but let's stay with people writing these living wills because I've written a living will and I've put it away in a drawer and I've not looked at it for a long time and I wonder will I change my mind, has my mind already changed - I mean do people, do you think, change their mind?

 

HARTLE

Undoubtedly people do change their minds because aspects of their life may change.  So an advance decision written say by a 21 year old rugby playing medical student for whom certain things are important may be completely different 20 years later when he's now married, newly appointed in practice, has young children.  So the things that were important to a 20 year old may not be important to a 40 year old and one of the things one has to look for with an advance decision is how recently has it been written, have there been significant changes in that person's life to suggest that it doesn't apply anymore.

 

BAKEWELL

What about the situation that Emily has not written in her living will anything about suicide - does that change the legal status of what she has specified?

 

BOWMAN

No it doesn't.  I mean the refusal of treatment isn't related to how she got there in the first place, except insofar as the team are questioning her capacity, I think you cannot assume - I think the word assume is probably used four times for understandable reasons - but you can't assume that she has depression and therefore lacks capacity, she may also have depression and have capacity - that's another conversation.  So no it doesn't but I can see why it raises the index of doubt and discomfort for the team.

 

BAKEWELL

There was a Wooltorton case in which a young woman wrote a living will, directive, saying that she didn't want to be resuscitated, even if she committed suicide, even if she had made a suicide bid she still didn't want any intervention and that was allowed.

 

BOWMAN

It was, although the advance decision is something of a red herring in that case in that she presented at A&E and had capacity, so just like you or I she was able to say please don't treat me.  I think, picking up on something that came out in the testimony, the idea that if somebody walks through the door they have implicitly sort help is not uncontestable.  If we had a situation where merely by walking through the door you agree to everything it would change practice considerably.  And in fact in the Wooltorton case she said that she didn't want to die alone or in discomfort but she still wanted to die - an incredibly painful and difficult situation for the clinicians but it does explain why she walked through the door.

 

BAKEWELL

Let's talk about the medical teams then.  So how do people generally - of course it's generalising I know - how do they react when a patient wants to die, do they feel that it's a burden for them?

 

HARTLE

It's not a comfortable position ever, the default for people going into medicine - and not just medicine but nursing and the other supportive specialties - is that we are there to treat illness, to treat suffering and prevent death.  Now ultimately of course we're always going to fail - that's the intrinsic problem about medicine we're always going to fail ultimately.  But there is a difference between life at any cost - just life itself, just keeping someone alive or in fact preventing death for a long period of time may not be the right thing to do.  And some doctors and nurses find it much more difficult to cope with patients who don't want to continue living.  I think we probably find it easier in someone who is quite obviously dying, it's quite clear that the trajectory of their life is heading towards death.

 

BAKEWELL

And Emily wasn't in that condition was she at all.

 

HARTLE

That's the difficulty and in Emily's case the difficulty - it's now about Emily's perception of the quality of her life, she's not immediately going to die.  I think doctors - I've got to choose the words right - but helping people to die with dignity in the context of palliative care - symptom control - is one thing but acquiescing in someone bringing about their own death at a time when they're not dying is much more of a challenge.  And I think there is an unstated fear that the doctors may be accused subsequently of aiding and abetting suicide.

 

BAKEWELL

Because in fact Emily has only got a chronic condition - arthritis - and she's not got cancer, if she had cancer that would come into your other circumstance - but she's far from that.

 

HARTLE

Yes.  And I think the default is that one should save life, if it's not clear that that's the wrong thing to do.  And there is this legal concept of acts and omissions - about doing something actively or passively not doing something.  And whilst generally speaking a passive act, failing to take action, may not make you liable there is a suggestion that if you owe someone duty of care, in this case the medical team had a duty of care to Emily, and they failed to act then that ...

 

BAKEWELL

Right well normally in these programmes we ask the panel to make their decision towards the end of the programme but actually we're going to change the pattern today and ask right now what advice would you give as to what should happen.  Andrew:

 

HARTLE

It's weighing up the least worst option of this case and I think in this case, with what we know so far, I would have suggested starting intensive care treatment but making a very early assessment as to whether it was making a difference and whether Emily was going to recover.  My concern about doing nothing, in this particular case, is that she hasn't died and she isn't immediately going to die and potentially she could survive with the very worst impairment that she was trying to prevent.

 

BAKEWELL

Deborah Bowman.

 

BOWMAN

I think it's impossible to discount what Andrew's said, as the clinician on the panel, and I suppose I would also - I feel it's a shame she's there in some ways but I suppose I feel there are a series of decisions to be made and Andrew's already hinted at that, so I would be thinking about exactly the least restrictive option and buy some time to weigh up the situation that we're in but perhaps - well not perhaps actually I think it's a shame we are in that situation.

 

BAKEWELL

So some intensive care treatment immediately?

 

BOWMAN

The minimum necessary - yeah absolutely.

 

BAKEWELL

And Debbie, what do you think?

 

PURDY

I think I agree but I think once you've involved other people - doctors, nurses - you've got to take into account their involvement as well and I think that doctors and nurses and so on would definitely be communicating with the family of the patient and I think that's right, I think they've definitely got to get advice from other doctors because I think they need the support.  To withdraw treatment is quite a difficult thing, particularly if you've trained for seven years to save lives.  We're talking about her rights and her judgement but we've also got to consider the judgement and the rights of the other people who are involved now.

 

BAKEWELL

Right, so what happened?  Emily was given treatment. She spent three days in intensive care. What then?

 

SECOND CONSULTANT

She took three days to wake up from the overdose and then we took her off the ventilator and then we discovered that she'd actually had a stroke.  The stroke resulted in a fair degree of weakness of one side of her body but she was conversive and you could discuss things with her.  So we made the decision to not put her back on the ventilator if there was any further deterioration and we treated her simply with fluids, oxygen, antibiotics and comfort and care.  And then subsequently she was discharged to the care of the rheumatologists for ongoing care to see if they could actually improve her underlying arthritis which was - we felt - the cause of her overdose because of her limited quality of life.

 

BAKEWELL

But what was her reaction when she woke up having realised her suicide attempt hadn't been successful?

 

CALLUM

She came round rather surprised to find herself in hospital.  She queried it and I explained why I'd taken the steps I had done - dialled 999 - and she wasn't strong enough to argue at this stage, that came later.  In the meantime a psychiatrist came to see her and she just told me that a very nice young man had been to see her and she said - I think it was a psychiatrist and I said - well what happened.  She said - Oh we had a very interesting discussion.  And so I persevered and I said - Well what was his decision.  And then she just said - Oh I convinced him that I'm not depressed, I'm just realistic.  But she did tell me at this stage that the reason she'd taken the overdose was that she thought she'd had a minor stroke and she thought if she'd had a stroke she could well have another one, she was already in severe pain and she couldn't do anything, if she had a stroke she'd be totally incapacitated and wouldn't be able to do anything herself about her future and this she definitely did not want.

 

BAKEWELL

Emily spent five months on the rheumatology ward.  Her arthritis improved.  She had a newer drug to treat it. But her rehabilitation could only go so far.  The effects of the stroke still meant Emily's mobility was severely restricted.   When she was discharged home from hospital she needed 24 hour care, a demanding job shared between her husband and son. 

 

CALLUM

In many ways it was very difficult, it was difficult physically but I think the nearest analogy I could give is that I just put my mind in second gear for a year.  I had her at home for 14 months, during which time I didn't have a night's sleep.  I was getting up anything between two and I think the worst night was seven times.  So my son and I between us coped with her.  I got the attendance allowance and I used that to pay his train fare to come and stay alternate weekends - he stayed Thursday to Monday to give me a break.

 

BAKEWELL

And it was during this time, that her consultants wanted to know if the decisions they'd made had been the right ones.

 

SECOND CONSULTANT

I wanted to ask her whether we had done the right thing for her or the wrong thing for her - trying to judge her best interests as being more than just the immediate medical best interest of will she survive or not but taking the broader approach as to what she really wanted and trying to act in her best interests and following her expression of autonomy.  So I went to ask her whether we'd done the right thing or not for her and she said - I don't know - and she said - I really don't know, you'll have to ask me later.  And she said - It really depends on the sort of recovery I make from this and whether it's sustained.

 

BAKEWELL

And following their conversation Emily later wrote to the consultant to try and explain. Too weak to actually write - she dictated the letter through her husband.

 

EMILY'S LETTER

I do regret that I was unable to end my life at a time of my own choosing.  The action I took was intended to avoid the pain and disablement of my physical condition which was deteriorating month by month.  I think that when I first came into your care, after my attempted overdose, you both acted in my best interest and I was very pleased at the care and attention I received in the intensive care unit.  I was also extremely grateful for the time you both spent with me and my husband, giving us the opportunity to discuss the situation fully with you.  I do realise that my condition could slowly improve and I might have more mobility and a better quality of life sometime in the future.  In which case I might have a different outlook on the results of my attempted overdose.  If my condition does not improve I will still regret that I did not succeed in my original intention of ending my life at a time of my own choosing.  At the moment I'm very dependent on my husband I wonder how long he will be able to sustain the effort of looking after me.

 

BAKEWELL

Callum looked after Emily at home for just over a year. 

 

CALLUM

By late January she was obviously suffering, she was having a lot of trouble with her breathing, she was having chest pains and our GP said he couldn't do anything about it unless she went back into hospital and she was adamant that she wasn't going back into hospital.  But he did persuade her to go in for an x-ray.  We never got the results of the x-ray because on the Friday night, in the middle of the night, after Friday night, Saturday morning, she definitely had a stroke.  She called me in the middle of the night and I couldn't understand what she was saying - she was talking gibberish - so I got her up, gave her a cup of tea and I said I think you've had a stroke and I said I'm not going to do anything about it now, I will wait till the duty doctor comes on at 8 o'clock and get him in.

 

BAKEWELL

And the duty doctor said she should go to hospital.

 

CALLUM

The hospital had been trying to phone me since half past six to say that she was unconscious and that the consultant wanted to see me as soon as possible.  And he said that she was suffering from acute pneumonitis - inflammation of the lungs - that she couldn't last more than two or three days at the most.

 

BAKEWELL

Emily had lived a year longer, but was it a satisfactory outcome?  Deborah.

 

BOWMAN

I think there's moral consistency in what's happened.  I think everybody has worked to prevent suffering - doctors and family and Emily.  I think what this shows is we talk about an advance decision, it's usually a whole series of decisions.  But ultimately no I don't think it was ideal that Emily ended her life that way but then I speak with the privilege of hindsight and that's what makes these cases so difficult.

 

BAKEWELL

Dr Hartle.

 

HARTLE

Firstly, it seems rather a shame to me that Emily wasn't allowed to die at home in the circumstances and I think we still put too much emphasis that patients should have to come into hospital to die and I think in Emily's case that didn't seem appropriate.  It's difficult to know what would have happened had they not treated her.  We have a degree of hindsight but we don't know the answer to the what if and one suspects that already having had a stroke, which we now know, she would still have survived, it's possible with more impairment from the stroke and that that last period of her life may not have been as long but may have been with a much greater handicap and much greater burden on her family if she'd even been able to get out of hospital.  So no there are still aspects of it that aren't perfect.

 

BAKEWELL

I have a sense that in fact doctors are more aware that they would avoid any legal complications simply by keeping people alive than they would risk legal action if they let them die - am I right in that Andrew?

 

HARTLE

Possibly.  The risk is playing god and that's very easy to do.  Here we have a case where we were being asked not to treat somebody but there have also been cases that I've dealt with that in retrospect is extremely unlikely that the patient was ever going to survive and that we subjected them to intensive care, which is not a pleasant experience for the patient or the family, in fact that was why Emily made her decisions in the first place.  But there are of course some people who have a very different view - there are some people who say I have an absolute right to live and any life is better than none.  And so trying to walk that very tight line between those patients who may choose to end their life at a time of their choosing and that other group for whom life is sacrosanct, you're probably going to get it wrong some of the time.

 

BAKEWELL

It's interesting, isn't it, that the consultants were concerned to know if they had made the right decision, the right decision - who decides right decisions Debbie Purdy?

 

PURDY

I think it's virtually impossible because doctors acting in the best interests, what a doctor considers the best interest might not be what a family thinks - that might be different again from what the patient thinks.  So I think we have to come down to the patient decides on their own life.  But that means advance decisions must be updated, discussed, communicated, so that doctors don't feel alone and that they're making decisions on the basis of legal requirements but rather they're operating in the best interests of the patient because the patient has expressed why they feel how they do.  I should have the right to decide what the quality of my life is.

 

BAKEWELL

Deborah Bowman.

 

BOWMAN

Yeah I think - and I think also what that shows beautifully Debbie is that we're not in this awful moral [indistinct word], what we actually have is your doctor disagrees with you about your best interest but you work together because she values her relationship with you and because you trust her, because you believe she is somebody who is a good doctor.  And I think this is the problem with looking always at consequences for ethical decision making - we do it because we like to do it, because we like to crystal ball gaze but actually if you think about the fundamentals of the relationship, what it means to look after somebody, to prevent suffering, then it becomes more morally possible, I suppose, to accommodate multiple perspectives and I think that's what we've seen here.

 

BAKEWELL

It goes to the very heart of what we mean by ethical advice, ethical medicine, isn't it?

 

HARTLE

It is because my ethics may not be the same as your ethics and we use phrases like best interest and we say not just best medical interest but best global interest and we now have statutory guidance about how to assess it.  But I don't have a machine that measures best interest and I'm still having to speculate and you're being asked to make a decision on behalf of somebody else and only that person can actually make that decision.  But, as we've heard from Debbie, to make that decision they've got to have the right information and they've got to know about what other treatments are available.  And I have to say my concern would be that someone who decided to end their life because of pain would be a disaster because we should now be able to control people's pain.

 

BAKEWELL

Thank you all very much. So what happened in the end?

 

CALLUM

I had taken in her advance directive.  She'd updated it and signed it.  He said in view of the advance directive they wouldn't give her any treatment, they'd just leave her on a drip and morphine and oxygen and let things happen, if I would agree to that.  And I said well I would absolutely agree with it, that's what she wanted.  And I was told she was in a coma.  When the consultant had left the room - we were talking over her at this time - I said to her - Do you know I'm here - and she said - Yes - very clearly.  I said - Did you hear what the consultant said - and she said - Some of it.  So I explained what he'd said and I mean I didn't - I didn't soften it in any way, I said he's told me that the condition is terminal, you haven't more than two or three days and basically repeated what he'd said.  And I said - Is that what you want - and she said - Yes, that's what I want, good.  And then she did go into a coma.

 

So I stayed for the morning and went back in the evening for a couple of hours and then decided there was no point in my staying.  The nurse said did I want them to ring me in the night if anything happened and I said no I need another night's sleep.  But in fact I'd hardly got home when she phoned - 10 o'clock - to say that Emily had died.

 

So the terms of the advance directive were kept to absolutely on the second occasion and I think she would have been very satisfied with that.

 

ENDS

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