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INSIDE THE ETHICS COMMITTEE

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RADIO 4

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TX DATE:听听听听听听听听听听听听听听听听听听听听听听听听听听听听听 THURSDAY 28TH JULY 2011听听 听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听

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PRESENTER:听听听听听听听听听听听听听听听听听听听听听听 JOAN BAKEWELL

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CONTRIBUTORS:听听听听听听听听听听听听听听 FIONA RANDALL

听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听ROB GEORGE

听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听听DEBORAH BOWMAN

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PRODUCER:听听听听听听听听听听听听听听听听听听听听听听听听 BETH EASTWOOD听

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NOT CHECKED AS BROADCAST

Bakewell

Advances in medical care can bring new ethical problems with them.听 This week Inside the Ethics Committee shifts its focus from the dilemma of patients to the issues that exist for medical staff when the terminally ill decide they want to stop their treatment.听 We consider two recent cases:听 That of Tom and that of Dennis.听 First Tom.听 About two years ago he had a hip operation and afterwards noticed his voice was very quiet.听 He proves to have pneumonia but his breathlessness persists and he has trouble sleeping.听 There are more tests and finally he sees a neurologist.听 His wife, Daisy, goes along with him and recalls her reaction.

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Daisy

He examined him and although I'd seen him all the time dressed and undressed when he took his shirt off you could see the muscles at the back of his neck had almost gone, that was in a very short space of time.

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Bakewell

Further tests follow.听 Finally in the autumn of 2009 a diagnosis is made:听 Tom has motor neurone disease; it is incurable and fatal.听 His wife Daisy:

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Daisy

I was just sure that I'd be ready for whatever they said to us.听 Well obviously I wasn't ready for it because I just really fell apart and the nurse was just wonderful, she was just there straightaway saying - you're not on your own, we will help you through this.听 And you think there's nothing that can be done.听 There's not treatment, there's no cure, so this is it really.

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Bakewell

Several weeks earlier Tom was prescribed a mask to help him breathe at night.听 The process is called non-invasive ventilation.听 The use of this mask is relatively new in motor neurone disease, only in July of last year did NICE - the National Institute for Health and Clinical Excellence - give their approval, saying it can improve the symptoms and hence the survival of those with the illness and its use is much welcomed.听 Tom's palliative care doctor:

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Palliative Care Doctor

His main symptom was a wasting and a weakening of the muscles of breathing, so he was finding it over time increasingly difficult to breathe.听 He was having a build-up of carbon dioxide which was giving him the symptoms of sleepiness in the daytime and he'd been started by the motor neurone disease team on non-invasive ventilation.

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Daisy

Just before he was going to go to sleep we would put it on and it's a rubber mask, it fits over the nose and round the mouth, and it has a strap that goes round the back of the head, which is not very comfortable.听 It's attached to a machine.

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Bakewell

The mask forces air into Tom's lung and then removes the waste products - carbon dioxide.听 It makes a big difference - he now sleeps better and is less tired during the day.听 Time goes by and Tom's condition grows steadily worse.听 By the spring of 2010, scarcely a year since he noticed anything was wrong, his muscles have weakened further, particularly the muscles he uses to breathe and swallow.听 He's hospitalised to have a tube surgically fitted so that he can fed directly into his stomach.听 Then he goes home to Daisy.听 But over the next few months Tom's condition deteriorates further.听 Together he and Daisy talk about what's happening.

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Daisy

In the morning - on the Sunday morning - he took the mask off and he said:听 "I can't breathe at all and I'm going to die."听 And I said, in my usual fashion:听 "No you're not and you're not going to do it today, you're not going to die today.听 So we'll put the ventilator mask on in the day, just to see how you are through the day."听 So we did but he couldn't take the ventilator mask off long enough to take a breath and speak, so by this time I was giving him a pen.

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Bakewell

The palliative care team are alerted and come to see him.听 Daisy is with him throughout.

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Palliative Care Doctor

Even in the short period of time - a few seconds to take a sip of water - he'd become very panicking with his breathlessness, needing the mask to be put on straightaway.

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Daisy

The nurse could see straightaway that really this was [pause] the beginning of the end.

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Specialist Nurse

Tom couldn't speak, he couldn't swallow, he was struggling getting in and out of bed, he actually communicated, writing down on a pad, and said I've had enough, I just don't feel that I can cope any longer - written words along those lines.听

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Daisy

These were all the notes that he wrote.听 "Let me sleep."听 "I want to die."听 We were sitting either side of him on the bed and he was reaching for the ventilator mask and she said you know you can't just do this, it would be very distressing if you took the mask off and you don't know how long it would be.

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Bakewell

The specialist nurse takes Tom's request seriously.听 Sedatives can ease his symptoms and distress when the mask is removed but she needs to know what he thinks.

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Specialist Nurse

I discussed the options open to Tom, which were the options of withdrawal of treatment and withdrawal of ventilation.听 He wrote down straightaway:听 "Yes, yes, yes I am ready to come off my ventilator."

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Bakewell

The team assesses Tom's mental capacity on several occasions to check he's of sound mind to make this decision and conclude that he is.听 Earlier in his illness he'd filled in an advance decision, sometimes called a living will, expressing his wishes for the end of his life.听 Daisy knows that.

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Daisy

He had always made it clear in his advance decision, it was quality of life and he was not going to be kept alive mechanically and that was really what I felt we were doing at that stage because if he hadn't been on the ventilator mask he probably would have died more quickly.

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Bakewell

Now we take up the case of Dennis who was diagnosed with motor neurone disease last summer.听 By early this year he's using a mask to help him breathe at night, having chest infections and being fed by a tube into his stomach.听 Both Tom and Dennis are warned they may slowly become dependent on the mask but are told that they will be given support towards the end if they wish to stop using it.听 Dennis is admitted to hospital with a second chest infection, he's attended by the palliative care nurse and the specialist nurse and his wife, Mary, is with him.

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Specialist Nurse

He was confined to bed because he was very weak.听 He was on the mask continuously.听 Talking was very difficult because he was trying to talk through a mask with a machine attached to it that was quite noisy.听 He was very tired and he felt that his breathing, despite the mask, was very hard work.听

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Palliative Care Nurse

We asked him to actually take it off to see how long he could manage without his mask.听 I could do nothing but describe it as a goldfish out of water gasping for air.听 So he was having to try and get to the toilet with the mask on or take the mask off and quickly get to the toilet which just wasn't happening so he was having to use a commode and bottles in bed, which to him was not acceptable.听 So he was very clear that this wasn't the way to live and that he had to stop it.

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Mary

I remember my husband said I've had some good news but you won't think so.听 And with that the palliative care team came to have a word with me and explained that he wanted to have the mask removed.听 I said is this all above board, is this ethical, is this - is this assisted suicide basically?听 And they said no.听 And they put my mind at rest.听 I felt numb actually.

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Specialist Nurse

Having those discussions around end of life and withdrawing treatment I'll be honest I found very difficult because it's something out of the ordinary, some people may interpret this as ending somebody's life, possibly assisted suicide.听 That is the key reason I think that I actually spoke to my colleagues to reinforce that yes what was discussed was okay and legal.

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Bakewell

This is true - Dennis and Tom both have the right to stop using the mask, even though it's keeping them alive.听 Patients across the country exercise this right to stop treatment every day in all sorts of contexts.听 For the palliative care doctor stopping the mask is no different from the requests he gets from some of his lung cancer patients.

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Palliative Care Doctor

I support a number of patients who decide the side effects of chemotherapy outweigh the potential benefits and we continue to manage their symptoms but they know that their cancer will kill them in the end.

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Bakewell

Ethical unease arises because of the period of time over which the refusal takes effect.

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Palliative Care Doctor

The short time relationship between choosing to stop the treatment and dying makes it for some people too real.听 However, the patients who choose not to have dialysis, they may live for one to two months knowing that the choice not to have dialysis has been what's led to their death.听 In the case of motor neurone disease if patients stop the ventilator it's usually a short period of time over minutes to hours.

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Bakewell

And Dennis and Tom are both conscious and able to articulate their wishes to stop treatment.听 They share this with their wives - Mary and Daisy.听 Now to discuss this with me Dr Fiona Randall, who's a consultant in palliative medicine at the Earl Mont Batten Hospice, the Isle of Wight, she's written extensively on philosophy and the ethics of palliative care;听 Rob George, Professor of Palliative Medicine at King's College, London and Guy's and Thomas' Hospitals; and Deborah Bowman, senior lecturer in ethics and law at St George's University in London.

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Let's start Deborah with you and sorting out the law, what is legal?

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Bowman

Well we've already had it explained to us that a capacitous patient can decide at any time that he or she no longer wants treatment.听 What might be helpful is to think a little bit about the law in relation to end of life care and quite likely it's been said that assisted dying or assisted suicide in this country is unlawful.听 However, there are circumstances where it's legitimate to withhold or withdraw treatment.听 And it sounds like that's one of those circumstances that we're talking about today.听 It's often expressed as the difference between, for example, giving somebody a lethal injection or a fatal overdose as compared to withdrawing treatment such as a life support machine or not prescribing an antibiotic for a patient who develops a chest infection.

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Bakewell

Fiona Randall, philosophically both end in death and it's a very fine distinction isn't it?

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Randall

I'm afraid I don't see the distinction as fine in that way because in the cases we've just heard about with Tom and Dennis what they are doing is refusing a treatment which is artificially prolonging their life, that is to me entirely morally different from assisted suicide which is to take a deliberate step with the intention to end your own life by means of taking a lethal medication - intention and cause are quite different.听 In one case the illness is causing death and in a second - assisted suicide - a lethal medication is causing death and that was everyone's intention.听 So to me they're quite different.

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Bakewell

Are you surprised that they're often seen approximating one to the other by just ordinary human beings?

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Randall

No I'm not surprised at all because it requires some thinking through to perceive the difference.

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Bakewell

Rob George, both Tom and Dennis are of sound mind and are making this decision while they appear to be quite able - alive, very much alive - how much does that matter?

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George

They're having interventions which are postponing their death and if you remove the impediments to dying, and the ventilator's an impediment to dying, then actually you're allowing the disease to proceed as it would normally do.听 The fact that someone's very alive is great because it means you can live till the moment you die.听 And for us there's a clear distinction about maintaining quality and maintaining an ability, if possible, to interact with one's surroundings whilst recognising that the physical event of dying is going to be something that happens at some point.听 And in a sense the idea that we are no longer postponing that death is what's happening in these two cases but at the same time we've recognised that additional life has been gained because we've fended off that death with a particular intervention.

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Bakewell

It's a nice concept, isn't it Fiona, that we should live as much as we can until just the very moment of death and it does seem that medicine is tending in that way.听 So their being very alive doesn't contradict any of the decisions?

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Randall

No not at all.听 The fact that they are very alive and can think for themselves and make their own decisions is seen by most people as a bonus.

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Bakewell

Rob George, is it unusual that two people like Tom and Dennis, who have capacity right to the end of their life, is that unusual or do you find that quite common?

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George

It depends upon the diseases that people have.听 If you're looking at somebody with cancer or some systemic disease, which is an overwhelming one, where there may be alterations in consciousness, then you may have somebody process of dying being a gradual withdrawing from the world, which is happening over the time of days, weeks or even months.听 Whereas with these patients it may be a relatively short period and I think that the proximity of the decision no longer to continue to live and the event of the death, when they're close together you then interpret that as what I did caused the death, which of course it didn't.

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Bakewell

Does that have any philosophical significance - the closeness does seem to be relevant doesn't it?

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Randall

It's relevant emotionally but not logically.听 These people die because their breathing function has failed and it can no longer support life.听 The cause of death is the illness - the fact that the patient actually can't breathe.

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Bakewell

Rob.

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George

A very good example that I come across all the time and in senses have experienced myself is that if you give a patient an injection for symptom control or something and they die within a few minutes then it's almost impossible emotionally not to think you caused that death.

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Bakewell

Deborah, the interesting situation, them being so articulate as they are, is that they speak of their quality of life and who judges quality of life?

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Bowman

The person who judges the quality of life is the person involved, if he or she has capacity.听 I would say in a situation like this where you have somebody telling you that their quality of life is such that they don't particularly want to continue, that in itself is sufficient.

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Bakewell

Rob.

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George

I think that's right.听 Of course the fascinating thing is as we all age the goal posts move and the quality of life now that I'm grateful for when I was 21 and playing competitive rugby would have been a life not worth living.听 And the fascinating thing of course is that - because this is perceptual - that can change incredibly rapidly.听 And actually interventions of clinicians like ourselves to help people reframe the experience they're having is an important contribution to helping them with their suffering.

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Bakewell

Good.听 Well let's move on with the story because by now both Tom and Dennis are completely dependent on their ventilator masks and have made clear they want to stop using them.听 The medical team treating them both have individual difficulties with this.听 Tom wants to die at home with his wife Daisy, the palliative care doctor and the specialist nurse will all be present when the mask is removed.听 The doctor discusses with Tom what this involves.

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Palliative Care Doctor

That discussion entailed talking to Tom about the use of sedative medication which reduces anxiety and reduces distress and that we would start this medication in advance of taking the mask off so that he was relaxed and he was not distressed.听 And then when the mask was removed there would be medical and nursing staff on hand should he develop any distress.听 It was making it absolutely clear to Tom that our priority would be keeping him comfortable at the end of life.

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Bakewell

His wife, Daisy, is at his bedside.

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Daisy

It was decided that it would be the Friday.听 The sooner the better really as far as Tom was concerned.听 At this stage we had carers in to wash him, it was like our home was a hospital, but it was better than a hospital because he had so much individual attention.听 We were in and out, by this time we'd managed to get hold of my daughter and she came home, my son was there, he said we're just going to stay now.听 So my son would watch rugby with him, he'd set up his iPad on the bed.听 We have two dogs, they were in and out.听 It was just as comfortable as it could be and he was still writing me notes.听 I've got this one here which says:听 "Have you watered the tomatoes?"听 And just - he was just trying to keep things as normal for us and for him as possible.

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Bakewell

But it is their own GP who conveys his uneasiness with what is happening.

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Daisy

The GP was coming regularly and talking quite a lot to him and then coming and talking to us - my son and daughter were there - and asking our opinion about what was Tom's wishes.听

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Palliative Care Nurse

He was not comfortable with the actual process of withdrawal of ventilation but he also discussed the issues of culture and beliefs and I think he didn't feel comfortable to be actually controlling the situation in relation to taking the ventilator mask off and switching the machine off.

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Daisy

The GP did keep asking him - will you not go into hospital?听 And I think he thought it would be easier because it would be sort of out of his control if he was in hospital and not at home.听 I think he just wanted Tom to slip into a coma and die naturally, he didn't want any interference at all - this was what you gathered from the way he was.

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Palliative Care Doctor

And he sought advice both from his defence union and even from the General Medical Council.听 He was reassured by both of those organisations that this was perfectly acceptable but he still felt, personally, uncomfortable with the idea of being there, of taking the mask off.

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Daisy

It isn't something that any of us wants to happen at all but he has decided that when there's no quality of life - I said he is alive in the other room and he is able to write his notes and communicate with us but that is all that he's able to do and he hated just being so dependent.

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Bakewell

When the moment comes Daisy, who'd been supportive of Tom throughout, finds it almost too much when Tom writes out what he wants to happen.

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Daisy

I knew that I would be there with him in the room and I would be holding him and talking to him but until he actually wrote that down I didn't know that that was what he wanted.听 But yes I was prepared to do it.听 So the consultant said we'll do it together, we'll stand either side of him and we'll both take the ventilator mask off and the machine will be switched off at the same time.

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Bakewell

In contrast Dennis' last days are spent in hospital on a respiratory ward.听 It's spring this year and planning goes ahead with Dennis himself leading the arrangements.听 The palliative care nurse:

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Palliative Care Nurse

We spoke at length about how we would manage his symptoms and how we would start a pump with some medication to calm any anxiety or breathlessness experience down and how we could give him extra top ups of that if and when needed through the process and that we would be with him throughout so we could respond rapidly to his situation.听 We talked about the uniqueness of picking the day that you die, which is very unusual and he talked about that it was very weird.听 He had a very dry sense of humour and said that he didn't believe in God, when you're dead, you're dead but he liked the fact that he could pick his time and have control over it.听 So there was quite a bit of bantering going on around that time, despite the fact it was a very unique situation.

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Bakewell

Again there is discomfit among some of the staff looking after Dennis.

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Palliative Care Nurse

When I approached the ward sister and the staff nurse looking after him to say this is what he's wanting to do and this is what we're going to facilitate he - they were very distressed by the concept that that seemed wrong.听 There was a very big concern that it wasn't legal and that we were going down the route of euthanasia.听 It was the correlation between removal and death that seemed to be frightening people and they did seem genuinely concerned that they would be in trouble and their registration would be at risk and legally we would be in trouble.

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Bakewell

Nonetheless the plans go forward.

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Palliative Care Doctor

Dennis, despite this being an extremely serious and grave situation, maintained an amazing sense of humour and wanted to choose the day that he died on, he even wanted to be specific about the time, so he ordered us to come back at 10.30 on the Thursday morning and not to be late.

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Bakewell

His wife Mary gets the family together.

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Mary

Luckily his parents were able to visit on the Wednesday, his brother and our daughters and the daughters and his brother and myself were with him on Thursday.

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Bakewell

Well now we've heard that medical staff object, so Deborah are medical staff entitled to refuse to be attendant on events like this?

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Bowman

There are some circumstances where medical staff can express a conscientious objection, this isn't one of them but for example The Abortion Act provides that medical staff don't need to be involved in terminations of pregnancy, save for some particular circumstances.听 There is a professional obligation to refer to a colleague if one has a conscientious objection.听 And it would be unusual for conscientious objection to be cited in these sorts of circumstances but that's not to deny that people will feel differently, just as patients feel differently, doctors, nurses and others feel differently.

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Bakewell

How would you deal with it Fiona?

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Randall

There are two things that are important here:听 firstly, everyone's assuming that the act of removing the mask is an act that causes death, what they've lost sight of is that they are simply stopping a treatment - non-invasive ventilation doesn't happen without positive application of the mask, making sure it's fitted and making sure the machine is continuously working.

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Bakewell

But human behaviour, human life, is often ruled by the heart and the impulse and the intuition as much as by logic and how then do you deal with people's anxieties when they are trained medics but nonetheless have this running conscience?

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Randall

Well I think that's the second point, I think that this GP needs help to understand that what you are simply doing is not continuing something which is artificially prolonging this patient's life and as Rob said earlier, is actually putting off death.听 And the other thing that did cross my mind about this GP is if this GP is really uncomfortable with this, even though I'm not sure you can conscientiously object, is the GP the best person to be doing it if he feels so uncomfortable?

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Bakewell

Rob George, we've heard the anxiety that was expressed by medical teams, that they would lose their accreditation and that kind of thing, surely the shadow of Dr Shipman hovers over all this kind of thing - the popular image?

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George

I think that's right.听 There's a great deal of confusion about when you actually physically do something.听 For example, if somebody said listen I don't want to take insulin anymore and you say well you're going to die from the diabetes then aren't you and they say, well I'm just not going to do it and I no longer prescribe the insulin, in other words I don't pick up a pen and write the prescription, that kind of feels like I'm not a moral agent in this at all and indeed you're not a moral agent because the patient's saying keep out of my space.听 What's happening here is the patient's doing exactly the same thing, they're saying do you know what, get out of my space, take this mask off me because my motor neurone disease is now going to kill me and that's a choice that I've taken.听 And the fact that we've had physically to remove the mask, because we've taken a physical action, makes it feel something different and I think the intention is really important here because none of the clinicians here intend that the patient dies, they intend that the patient is no longer interfered with - that's where the intention is.

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Bakewell

Fiona.

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Randall

The professionals concerned are worried about their registration, I think they're expressing the wrong worry, if they actually go on forcing a treatment on a patient who doesn't want it then they will bring their registration into doubt by not complying with the patient's refusal to continue with the treatment.

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Bakewell

Deborah, does the law have something to say about that?

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Bowman

Absolutely, if you continue to treat somebody against their wishes it is an assault or a battery, depending on the way in which the law is interpreted.听 It's very interesting, just picking up on something that Rob was saying, I think actually one of the things that makes this so different as well is that patient can't himself remove the mask, he can only do it with the assistance and support of the clinical team and it's not just about removing the mask, it's about the sedation, it's about supporting the wife, it's all of those other things.听 And therefore there is a sense of involvement and that becomes mixed up with causation.

听

Bakewell

Now both these patients - Tom and Dennis - are having sedation to ease their restlessness.听 Is the sedation likely to bring their death closer?听 Rob.

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George

Most people would say you're sedating somebody they're bound to die quicker.听 The paradox is actually if you sedate somebody they may well live longer.听 By reducing the drive to breathe you often make breathing more efficient and they may well be able to talk and communicate and be comfortable during that period.

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Bakewell

Fiona.

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Randall

Rob has just explained a bit of specialist knowledge, the difficulty is that most doctors won't have that specialist knowledge, so most doctors will then tend to think that if they sedate the patient they will reduce respiratory drive and the patient will in fact die quicker.听 And this of course further increases people's confusion.

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Bakewell

The one thing that both patients do retain - and it's rather eerie - is that they believe they're deciding the day of their own death.

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Randall

Because it's so likely that death will ensue when their request is granted and the treatment is stopped they have a very unusual power to decide which day.听 It's interesting that they both deal with this so very well.

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Bakewell

Rob.

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George

Well there is a sting in the tail here of course because by the fact of no longer interfering with what's going on the process may actually take a lot longer than we anticipate.听 And I recall many, many years ago looking after a patient in whom we were absolutely certain they were going to die, they were on an intensive care unit, ventilated, we stop the ventilation, we stopped the support of the heart and the circulation and the patient settled down, the patient continued to breathe and the patient eventually woke up and went home.

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Bowman

These cases have a name in the ethics, they're called Lazarus cases.

听

Bakewell

Well let's move on with the story because we reach the eve of Tom's final day.听 Tomorrow his mask is going to be removed.听 Unable to use his arms anymore he asks his wife to shave him.听 He's having sedatives to ease his discomfort.听 The palliative care doctor comes round and gives him more sedative.听 Daisy is worrying about removing the mask.

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Daisy

He came into to talk to me and at that stage I said:听 "Do you think I can do this?"听 He said:听 "I think you can.听 You're a strong person and it's the last act of love you can do for him."听 So you have to carry that forward and think that's what you are doing, you're doing it for him.听

听

Bakewell

It's the next day.听 Tom's son and daughter decide not to be present in the room.

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Palliative Care Doctor

It was a Friday afternoon, it was a very nice sunny day and I drove over to the patient's home.听 The GP, myself, the nurse from the community and the nurse from the local hospice - we were all present along with his wife.听 Having had all the discussions with Tom and having it very clearly stated from him that he wanted to go ahead we described to him that we would give him a small dose of a sedative medication and that would make him feel more sleepy.

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Bakewell

The GP is present in the room.听

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Palliative Care Doctor

Although the GP didn't feel he could be actively involved in the process he wanted to be present to support the patient and the family but he needed additional support and that was from myself to lead the administering the sedative and the removing of the mask.

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Bakewell

But the family don't feel supported.

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Daisy

It was almost as if he wasn't there, he was standing back, we were all round the bed and he was standing at the foot and a little bit away.听 He just said how sorry he was but he didn't say anything about the whole procedure really, as if he hadn't wanted to be there but he had to be there because we had to have a GP there.

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Palliative Care Doctor

We gave Tom a small dose of sedative medicine and he did become more drowsy, he did become more sleepy.

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Daisy

He reached for the pen and they thought he was going to write me a romantic little note, so they all left the room and I came out and they looked expectantly and he had written, as it says here:听 "Will you put my teeth in?"听 So we did.

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Palliative Care Doctor

When Tom seemed very settled there was a point where his breathing was very shallow, it was clear at that point that if the mask was switched off the shallow breaths would not sustain his life.听 His wife Daisy removed the mask.听 Tom's breathing slowly became shallower and shallower.

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Daisy

I expected instant I think and it wasn't.听 The doctor explained it would possibly take a few minutes.听 And it was 10 minutes really - a very long 10 minutes.

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Palliative Care Doctor

And it was clear at that point that Tom had died and had had a good death.

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Bakewell

Dennis will die in hospital.听 It's the day before the removal of his mask.

听

Mary

When we walked into the room we didn't even have to ask him the question - he said straightaway if you're asking me the same question then I'm going to say yes, I want the mask taken off and I know that I'm going to die if I take the mask off and I want to do it tomorrow at 10.30.听 So we got here early and sat with him and he seemed very bright and breezy that day and I thought what is happening here, what is going on.听 But he was very calm, quite okay about it.听

听

Palliative Care Nurse

It was a strange day in the sense that as usual we came to work with a sense of knowing something different was going to happen that day but quite clear it was the right thing to be supporting him doing that.听 We got down to the ward and the palliative care doctor, myself and the motor neurone disease specialist nurse and we went into the room to see him.听 His family was there, which was his wife, daughters and his brother.听 The team were a wee bit late arriving.听 He told me off for being late because it was 10.31, which was very typical of Dennis.听 He was very clear that we were to continue on.听 So we spent a bit of time trying to get an intravenous access for him, so that we could give him sedation - topped up quickly if he needed it, so keep him comfortable.听 I remember that being a very difficult thing to do because we were being watched by family, which puts you under pressure.听 And then we gave him an extra kind of dose of sedation to help him get more sleepy and we stood back and waited.

听

Bakewell

Even so it takes quite a while for Dennis to become drowsy.

听

Palliative Care Doctor

I stroked his arm and asked him how he was feeling and he opened his eyes and told us that he was still feeling fine but he was still awake.听 So we waited.

听

Palliative Care Nurse

A few times he shut his eyes, so I went up and bobbed down and kind of touch him and he opened his eyes and then just nodded and then shut his eyes again.听 And then a few minutes later I checked with him how kind of awake he was and he mouthed he was still here, which was very typical of Dennis as well.听 So we then gave him a little bit more medication because he wanted to be more sleepy, which was more successful.

听

Bakewell

After a couple of hours Dennis is drowsy enough for the team to switch off the ventilator and remove the mask.听 They expect his death to follow soon after but as Mary recalls it takes a lot longer.

听

Mary

We sat there for hours, yeah and my younger daughter - she said:听 "Why is this happening, as he's managing to breathe on his own?"听 But they said well he's breathing but he's being medicated, so as not to be struggling for breath and being agitated.听 So it just sort of carried on really.

听

Palliative Care Nurse

Our experience is people die within a few minutes or our longest experience was an hour with taking the mask off.听 But we went way beyond an hour and we were almost kind of entombed in a room not really aware of what was going on on the outside.

听

Mary

My daughters were reminiscing about where we'd been, what we'd been up to, what dad had said and my brother-in-law kept nipping out for a cigarette and then coming back and saying:听 "Is he still here?"听 And I kept saying:听 "Are you supposed to be somewhere else?"听 And one of them had got a child to pick up and they said no, no, it's fine.听 I mean it seems awful to laugh about it but that's how it was.

听

Palliative Care Nurse

We were conscious by about half past two that things were sort of changing.

听

Mary

And then he just went, so mm.

听

Palliative Care Nurse

When he died I felt very overwhelmed and was very tearful and showed my tears.听 There's was lots of hugs in the room but I felt that we'd done our job well and it was something that I was very proud of.

听

Bakewell

Dennis died four months ago.听 The nurses who were uncomfortable about his request turned down the opportunity of a debrief at the hospital.听 Last year NICE developed guidelines recommending the use of these masks to reduce the symptoms of breathlessness in patients with motor neurone disease.听 The palliative care team expect their use will become more common.

听

Palliative Care Doctor

Over the past two years we've been involved in four cases.听 To put that into context:听 over the last 10 years before that I hadn't come across it.

听

Palliative Care Nurse

For those who tolerate the mask it works really well and it definitely buys them quality of life, if not a bit of time as well.听 I think my concern for the future is that we're going to use this mask more and more often to manage symptoms, so more and more people are going to possibly want to have control over when they want the mask taken off because they are going to reach a point when they need it 24/7 and for some people that might be acceptable but for many it won't be.听 And I think as a professional group of people we need to sort of look at why we're not comfortable with it and how we then get comfortable with it because it's not something that's going to go away.

听

Bakewell

Rob George, first of all why did it take so long for Dennis to die?

听

George

Well I think you see both in Tom and Dennis two ends of the spectrum.听 Tom's got very little residual capacity to breathe, so you remove the ventilator and he dies very quickly.听 With Dennis it's different, he's got residual capacity to breathe and indeed what's happened is essentially by removing the ventilation we are just witnessing the closing hours or could have even been days actually of the process of his motor neurone disease.听 So that's proving almost that the sedation is immaterial in the nature of the death, the death is a result of the disease.

听

Bakewell

But in emotional terms Fiona, it's also suggesting to the people who are around his bedside that this is not quite as it was anticipated, is that acceptable Fiona?

听

Randall

Whilst the patients and the families knew that there would come a time when they might not want the mask anymore knowing that intellectually is very different from being able to predict one's own emotional reaction when that time comes.听 And the other thing that everybody would probably have understood or needs to understand is that this mask might have to be removed for other reasons.听 For example, in some patients it causes very painful facial ulceration, so it isn't just that the patient might no longer want the mask, it's that they may in fact be unable to tolerate it.

听

Bakewell

But let me turn to Deborah here because the medical team have expressed concerns and reservations, what is the future - I mean should they be becoming doctors and nurses at all?

听

Bowman

There was a very controversial paper in the British Medical Journal that expressed the view that opinions of conscience have no place in medicine.听 I think the majority disagree with that - doctors are as entitled as anyone else to hold views and those views will differ.听 I think, for me, it's about reflecting on the source of those views but also actually then to think well, how am I going to manage my personal opinions in my professional life and that actually is as much of training and development as learning the physiology and the anatomy.听 I think in good teams you can have a divergence of opinion and there will be opportunities for expression of that.

听

Bakewell

Right well we've heard that this use of this mask for motor neurone disease, which is admittedly a very rare illness, is likely to get more common and therefore of course the dilemma will crop up more frequently.听 So what's the ethical way forward?听 Deborah Bowman.

听

Bowman

I think we have to be brave and honest.听 I think teams have to think pre-emptively about this particular treatment; how it fits into the broader context of withholding and withdrawing treatment and really come up with some very practical guidance and there is some excellent practical guidance already out there on how these situations are managed.听 But being honest, being brave and being respectful in discussions about how to handle this particular situation.

听

Bakewell

Fiona Randall.

听

Randall

With regard to the mask and motor neurone disease, given that motor neurone disease is an uncommon illness, this situation's not going to arise very often, so we need to develop pockets of expertise to deal with the specific situation.听 But more broadly we need to educate healthcare professionals to understand that we are increasingly artificially prolonging life, therefore there is a continuous need to balance the benefit of the life prolonged against the burdens and the risks of the treatment and constantly to review with the patient - is this something that they still want to be continued.

听

Bakewell

Rob George.

听

George

I think that's right because in some senses we assume that duty of care is that we carry on trying to keep somebody alive.听 I think there's a time honoured duty of care is that we stop trying to keep them alive and actually for juniors to understand that their stopping the treatment is not their causing the death, it's the disease that is killing them.听 And then finally of course we can't stage manage death and we've seen that very clearly with Dennis.

听

Bakewell

Let's then listen to the coda to the story.

听

Palliative Care Doctor

To know that you're going to see somebody and know that they're going to die that afternoon is an unusual feeling but it's an immense privilege knowing that you're doing the best you can as a doctor to make sure that they're as comfortable as they possibly can be at the end of life.

听

Bakewell

But for the wives of Tom and Dennis a certain reticence prevails.

听

Daisy

The few people that I have told have been sympathetic and supportive.听 Then recently I told someone who I imagined to be a friend and shock, horror, revulsion, disapproval - everything was written all over her face.听 She just wasn't comfortable with talking to me any longer.

听

Mary

I haven't actually said that the mask was removed and it was arranged really.听 I felt embarrassed that people would think she was instrumental in his death.听 Three months down the line I might be able to.

听

ENDS