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Deborah Bowman, Professor of Ethics and Law at St George鈥檚 Hospital in London

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Peter Calverley, Professor of Respiratory Medicine at the University of Liverpool and has published extensively on COPD

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Jonathon Tomlinson, a London GP with an interest in medical ethics

I learn so much from this series about what is happening in the NHS. In the previous series I learnt that intensive care was being used to keep terminally ill people of the Muslim faith alive at the request of their families. Now I learn that oxygen systems are being installed in the homes of smokers even though there is a fire risk. I realise that members of the ethics committees have to be non-judgemental but I wonder if they are being too accommodating. These committees would benefit from having a lay person (not necessarily with voting powers) with an alternative view. Why weren鈥檛 e-cigarettes mentioned as an alternative? Also, as in previous episodes, the question of costs does not feature but costs feature in all other NHS decisions, the latest being the decision by NICE not to fund a breast cancer drug.听听

All over England, Clinical Commissioning Groups are making decisions involving withdrawal or reduction of certain treatments. These decisions are not being put to ethics committees and yet their effect on people will be the same. I see a great anomaly here which needs an explanation.

(Jane)

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I know we are talking about fellow humans here but in my opinion there are no ethical guidelines needed for the subject as you defined the cases, just a Rule. If the situation exists that an individual is going to be persistently selfish, self-centred, aggravating their health condition (not to mention being a threat to others鈥� health), proving a danger to themselves and other people in terms of the risk of fire, draining the finite resources of the NHS and ultimately the Welfare system, there is only one rule that must prevail. Namely, as long as you continue to smoke there is no oxygen supplement in an unsupervised area, particularly the home.

There are associated medical considerations in these dilemmas, but they do not affect what should be the major premise above. First, if these people truly profess by their actions they are, and want to continue being, addicted to smoking (I personally believe that no one who sincerely wishes to not be addicted to a known harmful substance does not have to be), then do you offer even these people the option of withdrawal therapies (patches, hypnosis, etc.,) as a potential way of stopping this self-harming,听with the additional reward to us all that they lessen their demands on the social and medical support over time. Second, does the medical profession ever consider that the addiction may be heightened by mineral deficiencies or other organic disabilities, rather than treat the prevailing condition as an isolated, addiction problem? I firmly believe that the medical profession may be surprised that they will find many addicted smokers have similar mineral traits.

Finally, why do you believe that so many situations have to have ethical analysis which errs on the side of the afflicted? These situations are much more black and white and not a single shade of grey as people must take responsibility for their elected lifestyles.听

(Malcolm Haynes)

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I thought it odd that the discussions all left out the patients鈥� agency and moral responsibility, for instance, in term of the risk to third parties that their smoking habits lead to explosions with potentially dire consequences to those third parties. In effect, the Ethics Cttee seems to treat the patients as patientes without their own agency as agentes. That is to treat them as objects and not as subjects and to remove their status of persons.

(Dan Hanqvist)

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I am currently listening to your discussion on smoking and oxygen.听 I would like to point out that the ethical problem of putting in significant danger all of the people who live anywhere near someone who smokes and also has oxygen.听 This may be family who live in the same house, but in the situation of someone who lives in a flat multiplies by a factor of 10 the number of people who are at risk.听 The risk is of setting the building on fire, carrying significant morbidity and mortality.听

All patients deserve our care, to be valued as a person, to be treated equally and well.

We should not be encouraging debate that suggests patients do not get oxygen because "they do not deserve it" if they smoke.听 Whilst there are other concerns, the overwhelming RISK is of fire, and that risk is to many more people than just the patient.

Addictions are very difficult to treat and the people who struggle with them need our care, and I thank you for pointing this out and discussing the awful way that people feel bad or even "deserving" of the horrible illnesses they are dealing with.听

(Dr Clarke, medical trainee)

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I am absolutely outraged at what I listened to on this program, on the patients in receipt of oxygen whilst continuing to smoke!!!

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I have a severe genetic lung/liver condition known as 'alpha one antitrypsin deficiency' it is little known because it is hidden under the umbrella of COPD , it is inherited condition a gene from either parent, it is actually more alike to CF in nature, we are not treated properly in the UK as we are a small group of people and the drugs we need are denied us. I was 45 yrs old when I was diagnosed and I knew nothing about the disease, I had inherited and neither had my carrier parents as there is no testing in place for babies! All hard to believe but we are blatantly ignored, if you want to discuss 'ethics' then perhaps a devoted program on a1ad and our being denied drugs to sustain us and keep us well with a quality of life might be a good place to start!

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Getting back to this program, I had 22% lung function aged 48! I could not walk, breathe or move, I admitted to smoking due to my ignorance of the disease I had the misfortune to inherit, there was during those 3 first years absolutely no offer of oxygen !! so I am left wondering how your COPD patients have wangled there way to it? Did they lie to the authorities? They denied me oxygen during those bleak years as it was deemed a hazard and for the very reasons you listed in the program so how on earth are these people getting oxygen on cigs???? No mention of this on the hour long episode and nobody questioned this either??? WHY? Did you do your basic research ? I could not believe actually what I was listening too. I quit cigarette's after they gave me 2 yrs left to live, that was the bolt I needed and further rumblings about my being listed for a double lung transplant obviously this was not a option as I was smoking, so basically I was left to 'die' ....I would love to hear your explanation on this, and may I suggest you cover a deadly , lethal disease , little known in the UK where patients are being denied a right to augmentation therapy a therapy afforded the many alpha one sufferers in the West including most European Countries and the America's ...I turned my life around and today I am stable (without the medication needed) and putting in 180% to ward off the transplant room, I am 53 years old ! I have only the middle parts of both my lungs left, the disease eats your lungs from the bottom so we are (basal effected) and very sick people indeed it is听caused via the glyco protein we are unable to release into the body to protect the lungs which is made in the liver, which is why it is first and foremost a liver disease, many suffer from the build up of the protein they cannot release and of course听go on to get cirrhosis of the liver , the defect of the gene is a small hook is it right we are constantly put under the heading of COPD? Again, maybe a question of ethics? 听There are over 3% of people with COPD who are actually alpha one patients but who go undiagnosed and as the disease is not recognised generally by the medical profession I fear this will be allowed to continue. 听I doubt you would wish to cover this but when it comes to 'ethics' and the medical profession Alpha One Antitrypsin is something you could give thought to, is it right to deny a therapy that sustains a young person's life and affords them a quality of life that the many seem to access to who suffer the condition, and the UK continues to deny us the same right??? That is something worthy of discussion surely.

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I would be happy to discuss the 'ethics' of being denied a therapy that can sustain my life and those of us unfortunate enough to inherit a genetic condition instead of listening to a group of people who suffer from disease COPD that they actually inflected on themselves and continue to smugly smoke whilst attaining oxygen therapy and having a hour long program devoted to the 'ethics' of whether it is right to disabled there oxygen??? I sincerely hope you can respond to this, as I was in disbelief听! Our life expectation is around 61 if we are lucky, there is a huge difference between COPD & a genetically inherited liver /lung disease and yet we continue to dangle under a heading without any regard, or recognition it is a total disgrace!

Yours in amazment!

(Kay Anderson)听听

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I happened to hear the episode Treating Patients With Dementia. 听It was very interesting to me and I listened carefully, trying not to get distracted.

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Why would Joan Bakewell relate history in the present tense!? That was irritating.

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Whenever any other participant made comment they naturally used the past tense, of course. The alternation amplified the irritation.

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Trying to be cute, in this way, is just distracting from the subject matter. 听Please advise your team and colleagues.

(Clive Crosse)

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This morning I am listening to the ethics committee, thinking "why is it so confusing?"听 Then I get exasperated and stop listening for some minutes, despite the important purpose and content of the programme.听 I realise听 ignorant Americans who can't use the past tense have infected the 大象传媒. (I first met this habit in the USA in the 1980's - in doggerel descriptions of outdoor expeditions. It must have drifted across slowly, on ocean currents.)

There was a sequence of events;听 by being told them in the present tense the programme crossed the border too often into being听 pretentious nonsense.

Please stop this abuse of the language!!

(Mike)

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"Treating Smokers" 07 Aug 14 - if only you'd brought Snus (non-smoking, virtually harmless tobacco) into the ethical equation

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(David Beattie)

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Thanks for a great episode today. It closely mirrored my own experience as Clinical Lead Consultant for our Home oxygen service.

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Many thanks. I will be making sure my whole team read or listen to the episode.

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(Dr Thomas Daniels)

University Hospital Southampton

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There is a desperate need for a validated and effective risk assessment tool for oxygen and smoking. We are currently working on one (South Central Oxygen group and Univ of Oxford) but it will need to be adopted in guidelines to be effective. It is more important to think through the possible issues before putting in oxygen as withdrawing once started can be difficult. Wales have taken a tough line on this due to house fires and deaths. Moreover, the evidence that oxygen helps those who continue to smoke is very poor to non-existent,

(Dr Richard Russell, Consultant Physician, Editor Int J of COPD)

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I was struck when listening to this programme, as it talked about the tension between prescribing O2 to smokers, that the discussion would have been very different if there was a technological solution to the problem (eg an O2 system that cuts off in the presence of smoke or high ambient O2 concentrations).

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I'd be shocked to discover that a solution like this doesn't already exist (or that it was prohibitively expensive) since it seems fairly simple to "invent". While I can imagine that a foolproof system would be very difficult to produce a system that provided a significant safety enhancement and strong behavioural modification would seem to be very practical.

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Equally smoking alternatives, such as vapourisers (which could be made significantly safer than cigarettes) seemed to be left out of the discussion (maybe these were rolled up into "won't quit").

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It struck me that really there was a QUALY / 拢拢 and "who pays" discussion missing from this debate and I'd be interested to know if there really isn't a technological solution.

(Matt Clarke)

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I listened to this morning's episode about an elderly lady who needs oxygen but smokes and is rather forgetful.

The possibility of starting a serious fire through smoking while using oxygen was highlighted and her own daughter听was very concerned that her mother听might do that and not only perhaps kill herself but her daughter and family as well, who live next door.

The ethics committee decided not to a) deny the oxygen or b) stop her from smoking. The logic seemed to be that, although the lady was sometimes forgetful, she should be allowed to make her own decisions.

This is muddled thinking as the effects of her decision don't just relate to herself but others also. She has no right in my opinion to endanger others. This is the reasoning behind non smoking laws in public places and the committee seems to have totally ignored this logic. The听committee's decision can also be likened to听expecting surgeons to operate on a person with lung cancer who continues to smoke. Sorry, but this is taking "human rights" a step too far.

The lady should have to decide whether to give up smoking or use a surrogate like e-cigs if they are deemed safe to use in this situation. Only then should she be allowed to continue using oxygen.

(Graham Pearce)

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Heard a lot about "managing the problem" but not a lot about ethics or much thought about the connection between cause and effect.听 If no one is really finally responsible for their own decisions, where will it end?听 For example, the participants only briefly touched upon fire hazard to other people.听 So, why not discuss the percentage of flammable material in people's houses and then legislate about it?听 If some of the patients are, in reality, non compos mentos, why not say so?听 Why not arrive at a judgement where a man who smokes and taking oxygen should shave off his beard?听 Why not discuss the ethics of taking money out of other peoples鈥� pockets to pay for such stupidity?

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Your participants seem very concerned to manage the medical procedures, but not much inclined to really face ethics.听 After all, that would mean reaching judgmental conclusions, something which it is clear they are loath to do.

(Howard Libauer)

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I was just listening to your programme about the lady who needs oxygen, but smokes, and the danger of fire.

I have never smoked, but have friends who do, and they say that it keeps them calm in stressful situations. I'm assuming the lady in question is stressed, as she is ill. Could she be given nicotine patches to relieve the stress and also the addiction?

Just a thought!

(Sharon O'Boyle)

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Listened to the feature about COPD. Absolutely no need for this type of feature to use the Historic Present Tense. The use of this artificial, infantile tense caused some very awkward mixing of tenses in the same sentence and should be abandoned. Radio 4 should not resort to Janet and John tenses. 听Otherwise good.

(Chris Le Vann)

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Using the historic present can bring drama to a description of past events, but overuse as Joan Bakewell does (did!) this morning is just plain irritating.听听 To bring drama to a narrative then use of an unusual style - like the historic present relies on surprise.听听 Just occasionally Joan Bakewell brings in a standard past tense which because of the overuse of the present, also loses impact.听听 Please can presenters be asked to restrict the use of this current trend for the historic present to times when drama is required, rather than for 90% of the content.听 I turned off what I found to be a very interesting debate because the irritation became so great it was spoiling the whole programme for me.

(Celia O'Shea)

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Smokeless tobacco is not safe but is medically听 proven to be 90% safer than smoking cigarettes.

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The crazy thing is this tobacco is banned by the EU in Sweden where they have exemption.

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I have been using Swedish Smokeless tobacco for over 7 years it is the only successful product i have used to keep me of cigarettes.听 I have used most of the nicotine replacement therapy.听 I tried cold turkey for years at a time but always went back to smoking. Snus (Swedish smokeless tobacco)

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If die hard smokers in the rest of the EU were given the change to use snus it would save their lungs.

(Tim Haigh)

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

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INSIDE THE ETHICS COMMITTEE

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Programme 4 鈥� Treating Smokers

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TX:听 31.07.14听

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PRESENTER:听 JOAN BAKEWELL

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PRODUCER:听 LORNA STEWART

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Bakewell

Smoking kills. But despite all the advice to give up, some still can鈥檛 beat their addiction. What happens when a smoker develops lung disease? Should a patient鈥檚 smoking ever limit the medical care they are offered?

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Welcome to Inside the Ethics Committee.

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Mark started smoking in his early teens and developed a 鈥榮mokers鈥� cough鈥� even before he and his wife Cathy met鈥�

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Cathy

Well we鈥檝e been married 40 odd year, ain鈥檛 we?

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Mark

Yeah.

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Cathy

And I can never remember you not having some sort of cough.

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Mark

It is true, yeah, yeah, you鈥檙e right.听 It鈥檚 a family complaint ain鈥檛 it bronchitis?

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Cathy

Yeah.

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Mark

So it were bronchitis, you know.听 I suppose once I started smoking it didn鈥檛 do any help with that.听 I wish I鈥檇 a penny for each one I鈥檇 smoked.

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Bakewell

One evening in 1999 Mark has some chest pains.

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Mark

It felt like indigestion, it were a Saturday afternoon and I suffered a while and I thought oh I鈥檒l have a walk up to the shop and get some Rennies.

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Bakewell

But during the night Mark has more worrying pain.

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Cathy

I put the light on, I said I think you ought to go to hospital.听 And I could see that he was quite blue and I realised that he was probably having a heart attack but I didn鈥檛 want to panic him.

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Mark

To be honest I rather fancied I were having one meself.

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Cathy

And drove him to the hospital.

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Mark

She parked the car up, come back and I鈥檓 outside having a [blowing]鈥�

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Cathy

And he said to me 鈥渄on鈥檛 say a word, it might be the last cigarette I ever have鈥�.

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Bakewell

But it isn鈥檛 the last cigarette. Mark is treated for his heart attack, but being in hospital severely tests his addiction.

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Mark

I says I ain鈥檛 stopping here.

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Cathy

But at that time it was a total no smoking policy, there were no way they would let him go and have a 鈥� have a smoke.

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Mark

That were a Sunday morning, wasn鈥檛 it, when I went in and a Wednesday I says I鈥檓 off home.

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Cathy

And we鈥檝e had many a fall out about it since.

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Bakewell

Mark continues to smoke and he鈥檚 diagnosed with angina, pain in the chest caused when blood supply to the heart is restricted by narrowed arteries. Over the following years he suffers badly from breathlessness.听 After a particularly bad attack on holiday he goes to see his GP and is referred for further tests. Both Mark and Cathy fear he has lung cancer.

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Mark

And he says it isn鈥檛 cancer鈥�

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Cathy

But it is advanced emphysema.听 And of course it had advanced to that stage because we hadn鈥檛 realised he had it until then.听 And the prognosis wasn鈥檛 good.

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Bakewell

Emphysema is a form of Chronic Obstructive Pulmonary Disease, COPD as it is known. 听The airflow to Mark鈥檚 lungs is reduced and as a result he can鈥檛 get enough oxygen into his body.听 Mark鈥檚 doctor explains that smoking is the cause and that giving up may give him an extra two years to live. The respiratory nurse tries to persuade him to stop too.

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Respiratory nurse

You can see it in people鈥檚 faces and so to tell people off about their behaviour 鈥� it鈥檚 a complete waste of time and it鈥檚 very counterproductive.听 So for me I try to be as positive as I possibly can but the bottom line is you鈥檙e really trying to get people to stop smoking.

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Bakewell

But Mark continues to smoke. He develops complications. The team try various treatments but they don鈥檛 work. His condition is putting an extra strain on his heart, risking another heart attack or stroke.听 Mark is told again by doctors that he needs to stop smoking but it鈥檚 something he simply can鈥檛 manage.

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Mark

I鈥檇 go crazy without a cigarette, wouldn鈥檛 I?

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Cathy

And sometimes when he鈥檚 actually tried to go cold turkey and stop he鈥檚 finished up sweating and shaking and鈥�

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Mark

Do I seriously?

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Cathy

Yeah and I鈥檝e actually gone up to the shop and bought him some cigarettes because he鈥檚 been鈥�

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Mark

You have done that, you have done that.

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Bakewell

Mark copes reasonably well until the winter of 2012 which is a tough one for him. He suffers two bouts of pneumonia and a serious chest infection. The respiratory team consider whether he should be given oxygen therapy at home.听 This is a machine which pumps concentrated oxygen from the air through a nasal tube. Patients commonly breathe this oxygen for 15 hours a day. The team think this will really help Mark.

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Respiratory nurse

If their oxygen levels are low and we put them on to oxygen therapy they鈥檙e likely to live longer than if we didn鈥檛 put them on to oxygen therapy.听 The other benefits we hope are improvements in sleep quality, improvements in energy levels, rarely improvements in breathlessness.

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Bakewell

For the best possible effect from oxygen therapy the team still want Mark to give up smoking but he just can鈥檛. 听Then when a third attack of pneumonia puts him in hospital Mark is so unwell that he doesn鈥檛 feel like having a cigarette and that continues until he is discharged two weeks later.

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Cathy

And he was really proud that he鈥檇 managed to not smoke and he was determined when he came home that he was going to carry on not smoking.

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Mark

I thought great, great, I鈥檝e cracked it, I鈥檝e cracked it.

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Cathy

But once he got home and he could have one he did.

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Mark

I did yeah.听 You know I did, it were a fortnight wasn鈥檛 it?听 It all went by and by when 鈥� oh I just have one and that one led to two and that two led to鈥�

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Cathy

And then it鈥檚 like the alcoholic 鈥� I鈥檒l be alright I can just have one drink 鈥� but鈥�

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Mark

It鈥檚 just habit ain鈥檛 it.听 I suppose 鈥� I suppose I鈥檓 a junkie.听 It鈥檚 me own fault, at the end of day it鈥檚 me own fault.

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Cathy

No willpower.听 When it comes down to the willpower bit he hasn鈥檛 got it.

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Mark

I just haven鈥檛 got it.听 But I have tried, you can鈥檛 say I haven鈥檛 tried.

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Bakewell

So Mark is smoking again. But should he be given the oxygen therapy if he continues to smoke?

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Joining me to discuss today鈥檚 case is:听 Deborah Bowman, Professor of Ethics and Law at St George鈥檚 University of London;听 Peter Calverley is Professor of Respiratory Medicine at the University of Liverpool and has published extensively on COPD and Jonathon Tomlinson, a London GP with an interest in medical ethics.

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Peter Calverley, what makes a patient with COPD suitable for oxygen therapy?

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Calverley

Patients with COPD are suitable for oxygen when they have a level of oxygen in their blood which is dangerously low and going to produce the sort of adverse of events that you just mentioned 鈥� strain on the heart particularly.听 That level corresponds, roughly speaking, to living at very high altitude.听 We know that there鈥檚 limits to the height that human beings can live and the limiting factor tends to be the level of oxygen in your blood.听 So patients with bad COPD, and it sounds like Mark鈥檚 one of them, is somebody who effectively is living at the height of the Andes or the Himalayas in his everyday life at sea level.听 You give oxygen to try and compensate for that.听 By giving extra oxygen in a fairly simple way, using an oxygen concentrator machine, you can then find that you can raise the level of oxygen in the blood to a more normal level and affect some of the problems of COPD.

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Bakewell

Now do people who continue to smoke benefit from oxygen therapy?

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Calverley

This is extremely contentious and the data is really very variable.听 A long time ago when I was much younger I did some of the original research which showed that oxygen was beneficial for patients with COPD but we had patients who were smoking at that time and some of the beneficial effects were blocked if they continued to smoke.听 However, continued smoking definitely will worsen the gentleman鈥檚 underlying COPD, will make him more likely to have flare ups of his chest, which could lead him to go into hospital.听 So there鈥檚 lots and lots of good reasons for him stopping smoking, apart from any impact on oxygen treatment.

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Bakewell

But there will be some benefit, though less, from him having鈥�

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Calverley

This appears to be likely to be the case.

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Bakewell

Well we鈥檝e heard from Mark how very difficult he finds it to give up.听 He鈥檚 tried patches, he鈥檚 tried gum, he鈥檚 tried electronic cigarettes, he simply can鈥檛 do it.听 So Jonathan, what can be done to help people to give up?

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Tomlinson

Well most people find it very difficult to give up without any help at all and the human relationships involved in stopping smoking are extremely important, so simply prescribing gum or patches or tablets on its own has been shown to be far less effective than involving a specialist nurse or somebody else to help you stop smoking.听 And I鈥檓 not clear from this case that he鈥檚 had that kind of one to one intervention to really help him.

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Bakewell

What you say strikes a chord with me because I鈥檓 an ex-smoker and I managed to give up but in partnership with someone else who was giving up.听 I quite understand that need for support 鈥� psychological support.

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Tomlinson

Yeah absolutely and a lot of people who have COPD, especially if it鈥檚 severe, up to 90% of them also suffer from depression.听 So in some ways if you鈥檙e not recognising that or you鈥檙e simply dealing with smoking, which may be a symptom of some underlying unmet need or problem, issues to do with shame are also important and very, very rarely discussed.

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Bakewell

Now we鈥檝e heard that Mark, after his heart attack, Mark was diagnosed with COPD, even though he鈥檇 had many of the symptoms before, but he鈥檇 鈥� he hadn鈥檛 gone for help, what stops smokers asking for help?

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Tomlinson

Well shame is a big issue, so people with smoking related diseases like COPD and lung cancer suffer because they think they鈥檝e brought it upon themselves, so they deserve to be sick, so there鈥檚 no point 鈥� it鈥檚 just the smoking, I deserved it anyway.听 And they tend to be very hard on themselves.听 I had a young man with severe COPD, he鈥檚 in his 40s, also an alcoholic, has smoked crack and he said to me 鈥� Doc, I don鈥檛 know why you鈥檙e wasting all this time and money on me, I鈥檝e done this to myself, I deserve it.听 And if you have the courage and the time to have those kind of conversations with patients it鈥檚 shocking how often they do say those kind of things.

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Bakewell

Right, well now we bring Deborah into the conversation because we鈥檙e going to discuss the moral dimensions of this.听 Do people deserve help?

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Bowman

Absolutely I think people deserve help, I think the language of entitlement, deserving, responsibility, is really problematic.听 If we start questioning people鈥檚 entitlement to healthcare, for which they have paid, and smokers may well have paid more because they pay tax on cigarettes, actually we are in an awful pickle because there are all sorts of things that people do that are 鈥渂ad鈥� for their health.听 I think the question is not whether he deserves care because he is a smoker but whether the risks and benefits of him being a smoker outweigh the potential value of prescribing oxygen to him.

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Bakewell

So we agree and I鈥檓 sure you鈥檒l agree Jonathan that people deserve treatment, would you say so Peter?

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Calverley

I think so, I also think it鈥檚 very easy to blame people for problems which society has helped bring to them.听 When this gentleman started smoking it was the social norm, I鈥檒l bet when you did that was true as well鈥�

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Bakewell

It was indeed.

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Calverley

And so people follow those social norms.听 They also react to the immediate social and personal gratifications of cigarettes without considering the long term consequences 鈥� that is human nature, you cannot penalise people for that, it鈥檚 very unfair.

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Bakewell

But Deborah I鈥檓 concerned that people listening to this programme will say no, no people who are persistent smokers must take responsibility for self-inflicted injuries and they don鈥檛 deserve treatment.

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Bowman

It鈥檚 the rhetoric one hears commonly but I think the role of the ethical clinician is to counter that rhetoric and to challenge this idea of the deserving sick and the undeserving sick.听 I also think that we鈥檙e, all of us, very prone to saying other people are not entitled to x, y or z without ever thinking about ourselves 鈥� we are all potentially burdensome on the NHS and actually it becomes incredibly problematic to make other people the problem, I would challenge that rhetoric.

听

Calverley

I think it is a matter of how much Mark needs the oxygen and in fact technically there are gradations of need, you can calculate likely the worse you are the lower your levels of oxygen the greater the benefit will be to you and that might be a factor to take into account.听 The other thing to remember with his smoking is that this is predominantly in somebody like this a problem of physical addiction 鈥� he got sweaty when he stopped smoking 鈥� and even if he comes off smoking once he may well relapse in the future and need further support.听 So part of his management is going to be looking at that as well.

听

Bakewell

And Jonathan.

听

Tomlinson

You鈥檇 also have to consider the costs of treating the complications that might arise if he doesn鈥檛 have his oxygen.听 What if, as a result, he ends up with heart failure or ends up in hospital 鈥� that might be far more expensive than keeping the oxygen going.

听

Bakewell

Good, well let鈥檚 take up Mark鈥檚 story again.

听

Despite his continued smoking, the team decides to give him home oxygen therapy.听 Smoking with such damaged lungs is far from ideal, but there is reason to be hopeful.

听

Respiratory nurse

When we assessed his oxygenation on oxygen his oxygen levels were better, so we knew that whilst he was using the oxygen therapy we were getting the desired effect.

听

Cathy

It makes him feel generally weller.

听

Mark

Yeah, yeah a general wellbeing.

听

Cathy

Better appetite, energy levels 鈥� he seems to have more go in him, more energy and can do more.

听

Bakewell

But oxygen therapy also carries risks. Let's consider James who has COPD and, like Mark, continues to smoke. He has been smoking for 40 years since he was a teenager.

听

James

Sometimes I could smoke 60 a day.听 It doesn鈥檛 do me any good and then you wake up the next day and oh it鈥檚 horrible but the first thing you do is have another.

听

Bakewell

In 2007 after two heart attacks James is eventually forced to give up work. His health continues to worsen and five years later in the winter of 2012 he鈥檚 in hospital with severe breathing problems.

听

James

Out of the five beds in a small ward I knew two of the other people and that鈥檚 only 18 months ago and they鈥檝e both died since then of COPD.听 So it got me thinking is it going to happen to me and how it frightens you.

听

Bakewell

James knows he should give up smoking but he can鈥檛.

听

James听听

I won鈥檛 stop smoking. I know that now, I know I won鈥檛, there鈥檚 no sense in saying things if I鈥檓 not going to keep to it.听 I have tried, I鈥檝e had patches, I鈥檝e had all sorts but I can鈥檛 stick to them.

听

Bakewell

When James feels stressed he finds a cigarette and a cup of tea calms him. And there are moments when James really needs to feel calm. His breathlessness gives him terrible panic attacks.

听

James

I woke up and I just thought I cannot breathe, I cannot breathe and it was just sheer terror going through me.听 It was like you were falling off a building and you鈥檇 nothing to stop you, you were drowning 鈥� can鈥檛 get air, can鈥檛 get air.听 It鈥檚 a horrible thing, it鈥檚 as if somebody choking you.听 And I just know I wouldn鈥檛 wish a panic attack on anybody, it鈥檚 horrible.

听

Bakewell

After several more hospitalisations, James is prescribed home oxygen therapy.

听

James

It鈥檚 brilliant. It鈥檚 like if you hold your breath for so long and then 鈥� it鈥檚 like on a cold frosty morning you can almost feel it in your throat, that鈥檚 what it feels like for me a lot of the time now.听 I mean I wear this 24 hours a day most of the time.听 I鈥檓 alright sitting and reading with it off but if I鈥檓 doing any sort of movement, even going to the toilet, it鈥檚 鈥� I need it and I鈥檝e come to rely on it now and if I didn鈥檛 have it 鈥� well who knows.

听

Bakewell

When oxygen is installed at a patient鈥檚 home it鈥檚 standard practice for the fire service to visit. They check to see that smoke detectors have been fitted and that there are accessible escape routes. But for oxygen use there are other specific hazards to look for.

听

Fire Service听

In terms of oxygen use particularly it would be signs of unsafe smoking, possibly unsafe cooking, making sure that the oxygen was stored somewhere where there were no emission sources and certainly with oxygen users we鈥檇 be very firm about smoking whilst you are using your oxygen 鈥� it is an absolute no, no, even clothes can absorb oxygen.听 So if somebody鈥檚 visiting the property we would like to let the householder know that actually when that person leaves that they may have oxygen on their clothes and they want to be out in the open sir for a little while and certainly don鈥檛 want to be lighting a cigarette immediately as they leave because there鈥檚 a chance that could ignite the clothing.

听

Bakewell

James鈥� smoking is a big concern.听 The importance of not smoking in the same room as the oxygen machine, or whilst he is wearing his tubing is impressed on him.

听

James

Definitely, yeah, I was told plus I鈥檇 done a fire fighting course a few years ago and I knew the hazards of pure oxygen.

听

Fire Service

Oxygen itself isn鈥檛 a flammable material but it speeds up burning of flammable products.听 It increases the heat of the fire, it makes the fire burn more brightly essentially and hotter.听 So that鈥檚 why we鈥檙e very concerned about it because the damage that the fire could do could happen more quickly and be more severe than if oxygen wasn鈥檛 present.

听

Bakewell

But despite the warnings and his fire fighters鈥� course in the merchant navy, James forgets鈥�.听 with disastrous results.

听

James

On the day in question I鈥檇 been drinking all day, I鈥檇 probably had a bit of a let down for something, and I was smoking that day and I was taking me oxygen off me 鈥� because I was putting it on me chair and I was going into the bathroom without it but this time, which was about 10 o鈥檆lock at night, I just rolled a cig and I picked it up and I was going out through the kitchen, I still had me oxygen on 鈥� excuse me 鈥� put the cig in and I lit it and as soon as I struck the lighter I knew exactly what I鈥檇 done and it just went whoosh.

听

Bakewell

The consultant plastic surgeon who was on call at the time of James鈥� accident.

听

Plastic Surgeon

Flash burns, where things haven鈥檛 necessarily caught alight but there鈥檚 been an explosion, a flash and then you get a burn, you鈥檙e getting a patient who has already got a problem before they come to you, they鈥檙e not entirely fit and healthy, and their problem is respiratory related, lung related, and the injury is in that area.

听

James

The nose clip, if you see these things on telly, they鈥檝e got a plastic tube that goes up each nostril for about half an inch and it was 鈥� that鈥檚 where the oxygen comes out, so obviously with me having a cig in me mouth and lighting it that鈥檚 where it caught fire.

听

Plastic Surgeon

If the nasal speculae, if they ignite, you get two jets of flame, not only are you going to get the local effect of the temperature of the thermal burn but also the plastic starts to melt as well, so you鈥檝e got toxins that will be breathed in.听 So a significant injury from a very small area.听 We鈥檝e got some images of him here, which were taken I think a couple of days down the line, which quite clearly show the area that was burnt.听 You can also see on this image that he鈥檚 got a beard and it is thought that the oxygen will saturate into hair and into clothing, so that may have also been a component that those areas will have burnt more because there鈥檚 hair with oxygen within it.

听

James

It burnt the top of me eyebrow, it burnt me eyebrow off, eyelid, up inside my nose on the left side was worse and outside there鈥檚 a little bit of me nose missing there.听 It was just a mess.

听

Bakewell

Incredibly, despite the severity of his injuries, James doesn鈥檛 rush to hospital. He feels too ashamed.

听

James

I think I cried because I was that sick about meself for doing it, so stupid.听 I went to bed but I was in pain, I couldn鈥檛 sleep and then in the morning I didn鈥檛 answer me phone, I didn鈥檛 answer me doorbell, I just stayed on me own that day, didn鈥檛 speak to anybody or see anybody, didn鈥檛 want to.

听

Bakewell

James finally goes to hospital, stays a weekend then returns home. 听Over the following weeks his face heals well and his beard regrows. One good thing is that having spent 27 years in the merchant navy, James鈥� training kicked in and he had responded quickly.

听

James

It just happened that quick, milliseconds, I managed to pull it off, in the sink which had some water in it and I just sponging all over and I rubbed it hard on me face.

听

Plastic Surgeon

Luckily he knew what first aid to put in place for his burn and did the appropriate things which I鈥檓 sure saved him from a much worse injury.听 The worst I鈥檝e ever seen was a number of years ago in a gentleman who got a significant burn of his palette which you could see through his mouth, unfortunately he died.

听

Bakewell

Right, well let鈥檚 come back to our panel, discussing these issues.听 Whose responsibility is it?听 James said how guilty he felt and that鈥檚 why he didn鈥檛 go to hospital, so Deborah, how far is he actually responsible?

听

Bowman

I think there is a difference between him having 鈥渃aused鈥� what happened and being morally responsible.听 And the reason I think that is I guess I would question how far moral responsibility is going to take us in helping James.听 We already know that he feels immensely ashamed, he feels foolish, he鈥檚 delayed accessing treatment and I think he knows what he did 鈥渃aused鈥� what happened but I don鈥檛 think the language of moral responsibility is helpful.听 And I actually don鈥檛 鈥� I don鈥檛 think it鈥檚 within our gift to attribute blame to him, it seems a very odd response to me.

听

Bakewell

But it is again a popular response 鈥� he鈥檚 only himself to blame.听 It鈥檚 easy to say.

听

Bowman

It is very easy to say and of course there鈥檚 a factorial truth in it, in the sense that what he did led to a fire that injured him.听 But I guess my question would be 鈥� why is that helpful in making ethical decisions and responding ethically to James?听 It doesn鈥檛 seem to me that it is, it feels rather that a bit of compassion might be in order here.

听

Bakewell

Jonathan?

听

Tomlinson

I think his use of the word shame is incredibly potent here and it follows on from the previous discussion.听 So shame is internalised, it鈥檚 feeling that you are a bad person, not simply that you鈥檝e done a stupid thing, but you鈥檙e a stupid person and people respond to shame in a number of ways but one way is to isolate yourself, so to hide away so that nobody else can see how awful you are, which he did, so he didn鈥檛 go to hospital, he didn鈥檛 want anyone to see how 鈥� what a stupid person he was and what a terrible thing he鈥檇 done.听 But the other thing they do is they tend to continue self-harming behaviours, so they鈥檙e more likely to continue to smoke or to continue to drink or to try and cover up the feelings of shame and guilt by doing more dangerous things.听 So although we may feel that he is morally responsible by contributing to his symptoms of shame we鈥檙e quite likely not only to make him feel worse but to make the problems that caused this fire in the first place more likely to happen then for him not to seek help, possibly not to call the fire brigade if he then sets his sofa on fire and so on, it would be disastrous.

听

Bakewell

But Peter it is a medical issue isn鈥檛 it, medical men have put this oxygen in his home, would you feel guilty?

听

Calverley

I think I would feel guilty.听 I think I would feel frustrated.听 I suspect I might not be quite as rationally compassionate as my colleagues because to an extent he鈥檚 developed behaviour which is very typical of people who are dependent on any form of substance 鈥� alcohol, illegal drugs 鈥� in the sense that he does things to gratify these dependency and he doesn鈥檛 think through or appreciate the consequences of it.听 But he did definitely cause this particular episode.听 It is possible, as has been suggested, not to use oxygen all the time, to take it off, to 鈥� if you are going to have your cigarette you might as well minimise the risk.听 So he was obviously doing that most of the time but for some reason or another鈥�

听

Bakewell

Well he鈥檇 been drinking.

听

Calverley

He鈥檇 been drinking, I think that鈥檚 probably the likeliest reason.听 Is that the fault of the people who gave him the treatment advising him not to do any of those things?听 I鈥檓 not really sure that it is.

听

Bakewell

But the medical team have put in a risk, the oxygen, into his home and somehow they haven鈥檛 managed it successfully have they?

听

Calverley

That鈥檚 true, I don鈥檛 think we have information on the best way to manage these things.听 He has already had an assessment from the fire service, he has already been given advice about how to use the treatment and what not to do with the treatment.听 The only other way of managing it is not to give him any treatment and the balance of moral judgements based on our earlier conversations was that that might not be in his best longer term interest, so it is always going to be a balance.

听

Bakewell

Can doctors remove oxygen therapy once it鈥檚 been installed Jonathan?

听

Tomlinson

Yes, yeah well the studies that have been done with this, so there was one study where they tried a withdrawal of oxygen and I think 46 out of 47 patients they were able to do this.听 And only鈥�

听

Bakewell

Without increasing鈥�

听

Tomlinson

Without series problems.听 Now about a third to a half of them had to start again but you were able to do at least a trial of withdrawal of long term oxygen therapy.听 So one thing we know from the literature is that we very often don鈥檛 try this 鈥� this was part of a trial 鈥� but it鈥檚 not standard practice, so certainly trying to withdraw it is something that ought to be done.听 The second thing is 鈥� and he gave a very vivid description of how terrifying it was when he doesn鈥檛 have the oxygen 鈥� we do know that the feeling of not being able to breathe is extremely frightening but we don鈥檛 know that it鈥檚 the oxygen that makes the difference. So there鈥檚 something important and symbolic about the security of wearing oxygen that goes above and beyond simply the oxygen.

听

Bakewell

You鈥檙e nodding Peter.

听

Tomlinson

And there鈥檚 also鈥�

听

Calverley

Very strong.听 It may be a placebo effect but when you have the level of problems James has anything you do that helps is welcome.

听

Bakewell

Okay, well how are doctors and the medical team going to give people assistance to deal with this issue?听 Deborah?

听

Bowman

I think one of the things that strikes me is that for as long as it becomes about oxygen or no oxygen we鈥檙e not necessarily going to be addressing many of the underlying things that are playing into this, you know, all the things that Jonathan mentioned about the depression, the isolation etc.听 He鈥檚 had huge health problems.听 There were those sorts of issues and I don鈥檛 now 鈥� I don鈥檛 have a sense from what we鈥檝e heard whether somebody somewhere is supporting him with those issues in a non-judgemental ongoing way and if they鈥檙e not the oxygen is a small part of a much bigger, much more complex picture and we鈥檙e never going to be able to fix the problem by just fixing the oxygen issue.

听

Bakewell

No but there are practical matters that are done 鈥� I mean leaflets are issued, aren鈥檛 they, by the fire people and by the medical people 鈥� do this, do that.听 Of course he has to sit down and read instructions, so what do you make of that situation Jonathan insofar as you can speculate about it?

听

Tomlinson

Well we know that not everybody who should have written information about safe use of oxygen gets it and their understanding isn鈥檛 checked and it needs to be checked repeatedly because people forget or they develop other ideas.听 The second thing is that the tubing that鈥檚 used to deliver oxygen produces a gas called vinyl chloride, which is highly flammable and there are some patents, which I discovered whilst trying to do some research for this programme, for much less flammable tubing.听 And we know, for example, when you鈥檝e got nasal oxygen delivery, as they described, it soaks into the beard or your clothes but also bathes your head, so you could kind of describe to the patient 鈥� imagine your head is surrounded by a cloud of flammable oxygen.听 And there was one study of patients who set fire to themselves and a lot of them set fire to themselves not through smoking but either from trying to smoke 鈥� light somebody else鈥檚 cigarette or light a pilot light or light a candle, from a spark, from something else 鈥� so it鈥檚 not just smokers.听 And one way, I suppose, if we鈥檙e going to be imaginative you could use a nebuliser where you can see the gas because it looks like a literal cloud, perhaps if you tried that through some nasal prongs and the patient could see this cloud of steam around their head and imagine that you鈥檙e walking around with this around your head and that might set fire.听 So there were lots of things I think you could do.

听

Bakewell

Do you think his oxygen should be removed Peter?

听

Calverley

I would certainly discuss that with him at that stage.听 But the issue is not 鈥� I鈥檓 going to take your oxygen away because you鈥檙e a bad person and you set fire to yourself 鈥� but it would be in my judgement there is sufficient risk of this happening again.听 So that any potential extension of your life from oxygen will be mitigated because it鈥檒l be shortened by you doing something terrible which you cannot necessarily be responsible for but which puts you at risk.听 I think it鈥檚 an individual decision but I鈥檇 at least have that conversation.

听

Bakewell

And Deborah what would you do?

听

Bowman

Yes I mean I agree there鈥檚 got to be a conversation, this is a terrible thing that鈥檚 happened, and that conversation may mean that those risks can鈥檛 be managed but Jonathan鈥檚 suggested ways in which they might be mitigated.听 It may mean that you review more regularly, it may mean a whole host of things but there has to be a conversation.

听

Bakewell

Well let鈥檚 get back to the theme, but this time to another story.听 The team caring for patients with COPD have a real problem when it comes to patients like Jenny. Jenny is 80 and was diagnosed with COPD 10 years ago. She has had oxygen at home for the last eight of those years and has continued to smoke. But the situation has changed and Jenny is getting older and more forgetful. Both the respiratory team and her daughter, Emily, are concerned.

听

Emily

She does take her oxygen pipe into the kitchen where she smokes and there鈥檚 many a time I have to say to her mum, you鈥檝e got your oxygen on, take your oxygen off.

听

Respiratory nurse

That鈥檚 a worry for us but this lady has been oxygen therapy for a long time, she understands the risk, she understands the need for her oxygen therapy, she believes she鈥檚 making every effort not to smoke and she simply forgets and that鈥檚 very difficult to manage.

听

Bakewell

Emily, who lives in the house next door and is her mother鈥檚 carer, is concerned not only for her mother, but also for her own and others鈥� safety.

听

Emily

It鈥檚 not just her own place she鈥檒l be taking out, it鈥檒l be mine as well, with being joined on to her, you know.听 It鈥檚 a constant worry and I do 鈥� I go to bed on a night and I lay in bed on a night and I鈥檓 thinking oh you know is everything going to be alright the next morning.

听

Bakewell

Jenny is not very mobile and it is very difficult for her to follow the specific advice that the medical team give her.

听

Respiratory Nurse

The way to minimise the risk is to switch the machine off and leave the room.听 And if a patient is mobile, such that they stand from their chair and walk three steps to the commode and three steps to the bed, and that鈥檚 all they do then risk minimisation by saying leave the home and stand at the backdoor is just not an option.

听

Bakewell

Jenny鈥檚 mobility problems are also a potential danger for her neighbours, including her daughter. If a fire was to happen, reacting quickly would be vital. The fire officer:

听

Fire Service

If you can be alerted to a fire quickly you鈥檙e very likely to survive the fire.听 In the case of people who are immobile, possibly with poor breathing, they鈥檙e going to be more susceptible to smoke inhalation.听 So the alarm may not be raised as quickly as me seeing the fire.

听

Emily

She鈥檚 not very quick on her feet and me dad鈥檚 just been registered blind as well.听 So they would have difficulties in getting out of the house.

听

Bakewell

Emily persists in trying to persuade her mother to stop smoking.

听

Emily

We have had lots and lots of arguments over it.听 I will not fetch her cigarettes but she鈥檚 that strong willed, is me mum, she would get the oxygen and she would ring for a taxi and she would go out and get them herself.听 She would not do without the cigs.听 Of course me daughter-in-law smokes so she will fetch them in.

听

Bakewell

And now Jenny has started to be secretive about her habit

听

Emily

I take her for her appointments and the doctors will say 鈥� how many are you smoking now 鈥� and she tries to tell little white lies, she鈥檒l say 鈥� I only smoke about five.听 I鈥檒l say 鈥� no you don鈥檛 mum 鈥� and I have to tell them how much she smokes.听 But then she鈥檚 got to the stage now where she鈥檚 actually hiding them, so I don鈥檛 actually see where the cigs are.听 I know she鈥檚 got them in the house but she won鈥檛 have them on show.

听

Bakewell

Emily and the team are increasingly worried about the fire risk. One option is to remove the oxygen entirely from Jenny and deny her treatment.听 Naturally Emily isn鈥檛 keen.

听

Emily

The oxygen has improved her life and without it she wouldn鈥檛 last very long I don鈥檛 think.听 No she depends on the oxygen now.

听

Bakewell

Is it ethical to withhold oxygen from patients like Jenny?听 Or just those who are at even more severe fire risk than she is? The respiratory team approach their hospital鈥檚 clinical ethics committee.

听

And we resume our discussion about this enormous complex issue.听 Jonathan, what would be your response 鈥� is it the physician鈥檚 job to take account of the surrounding circumstances like this?

听

Tomlinson

It certainly is as a GP and very often you find yourself being the person that speaks to all the family members and you might want to have them with individuals or as a family group, so the discussions are out in the open.听 You鈥檇 also want to explore what different people think the oxygen is doing, in what way is the oxygen helping and is it the oxygen or the depriving her of oxygen that would result in her dying or would it be something else, like the smoking for example.

听

Bakewell

But what about the social responsibilities to people other than Jenny?听 We want Jenny to be better, we want her to have the treatment Deborah, but what about the benefits to her outweigh the risks do they?

听

Bowman

There are situations where this is a tension between your duty of care to an individual patient and a wider responsibility.听 So a good example is confidentiality where if you believe there to be a real and serious risk of harm, to identifiable people then you can, you are entitled to breach confidentiality.听 It鈥檚 quite unusual to be thinking about it in this sort of context and what one would normally do is think about where your duty comes from and how 鈥� to what extent it鈥檚 in conflict with your duty to Jenny herself, the nature of the risk and I don鈥檛 know enough about the nature of the risk to know whether it is real and serious because it sounded to me like she was living in quite a high risk environment anyway 鈥� she鈥檚 a forgetful smoker with limited mobility 鈥� I鈥檓 not a specialist but that sounds quite risky.听 So the extent to which the prescription of oxygen is exacerbating what is already a risky environment.听 And then really whether intervening by withholding oxygen is your only option or whether there are other options, for example talking to everybody else who鈥檚 involved.

听

Bakewell

Well now Peter we want your clinical judgement on whether it would be justified to withdraw the oxygen because of the surrounding risks in this case.

听

Calverley

I think that this is an extension of something I said earlier on about risks versus benefits to the individual.听 Having oxygen in this sense is not an absolute good.听 This lady鈥檚 used oxygen for a very long period of time so one of the things which I鈥檇 want to do is establish that she still actually meets the standard criteria, which we鈥檝e identified, for somebody who鈥檒l get a material physical benefit, not an emotional one, not a psychological one, but a material physical benefit from using oxygen in the way that she鈥檚 currently using it.听 And if she鈥檚 not then it would be very reasonable to negotiate withdrawing her oxygen, which is possible, and is now being done more often and reassuring her that her chest has actually improved somewhat and perhaps looking at other ways of supporting her that give her some sense of comfort without exposing her and those around her to an increased risk.听 I think that the risk in this sense is an imponderable but it is one that鈥檚 very concerning and is at the very least having an impact on her daughter鈥檚 wellbeing because she鈥檚 lying awake in bed at night concerned for her own family.听 You have to try and take a wider view 鈥� putting the patient centre stage 鈥� but looking at the impact on all the concerned parties.

听

Bakewell

So this is the point at which we ask if you were the ethics committee what would you advise.听 Deborah.

听

Bowman

I would review the treatment that she is having but I would do it on the basis of it being in her interest to have that review rather than on the basis of it being a threat to withdraw treatment.

听

Bakewell

Jonathan.

听

Tomlinson

I would make sure that all of her related health condition, including her mental health conditions, are adequately treated and be sure that we鈥檙e not using the oxygen to compensate for something else.

听

Bakewell

And Peter.

听

Calverley

I would reassess her need for oxygen and I would be minded to look to withdrawing it.

听

Bakewell

Thank you all very much.

听

So what did the ethics committee advise in cases like Jenny鈥檚? The chair of the actual ethics committee.

听

Chair

We did think that this would have to be managed on a case by case basis.听 Each case is very different from any other in terms of the housing, the environment, the particular person鈥檚 dispositions, their dependency on nicotine, the people who live in the house with them, other sources of support, how successful any attempt to stop smoking鈥檚 going to be, that they鈥檙e all 鈥� they鈥檙e unique, each case is unique and should be treated in that way.

听

Bakewell

After long discussion the team came to their conclusion.

听

Respiratory Nurse

The conclusion from the ethics committee was that we weren鈥檛 in a position to withdraw a therapy that a patient had consented to if we agreed that the patient had capacity to take that risk.听 So in other words to make an informed choice about therapy, understanding the risk to their personal safety and the safety of anyone else in their home.

听

Bakewell

The team feels that whilst Jenny is forgetful she is able to make decisions and should keep her oxygen machine.

听

Respiratory nurse

We haven鈥檛 seriously considered withdrawing oxygen for that lady because in every other respect she appears to have capacity, she simply has an occasional memory lapse which we鈥檙e all guilty of.听 She鈥檚 occasionally forgetting, the way anyone might occasionally forget to close their back door or leave their purse at home, it鈥檚 a normal thing but unfortunately for her that occasional forgetfulness comes with a significantly higher risk than forgetfulness in the average person.

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Bakewell

For Emily it鈥檚 bittersweet. Whilst she wants her mum to have the oxygen she needs, she also worries about the dangers.

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Emily

I think about it every day.听 It鈥檚 always on back of me mind 鈥� what if, you know, a spark from the lighter catches the oxygen or anything, you know it is a worry.

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Bakewell

Mark and James would love to be free of the cigarettes. They both continue to see their health worsening as a result of their condition. 听Mark had one of his legs amputated at the start of this year and James now has trouble uncurling his fingers. But for the moment oxygen and cigarettes are risks they are both still willing to take.

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Mark

If somebody could give me a happy pill I could take and that were it 鈥� no more smoking 鈥� I鈥檇 take it straightaway, no doubt about it, you know.

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James

That one little stupid mistake which never will happen again 鈥� I can safely say that because I realise I鈥檝e been lucky, I鈥檝e been given a chance.听 I got the benefit of doubt.

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ENDS