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Inside The Ethics Committee Series 6 - Mentally Ill and Refusing Surgery
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Series 7, Withdrawing Treatment
Can conscious patients stop treatment, even when this will directly lead to their deaths?
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As a university lecturer I run a law and medical ethics module and I would love to be able to download podcasts of 'Inside the Ethics Committee' for my students to listen to. Simply directing them to the website has no effect at all! I wonder if this might be possible? t the moment I only seem to be able to listen to it with no download facility. This is a fantastic programme that I'd love to use to add depth to various elements of my course.
Many thanks
Helen James.
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It would be helpful if the presenter understood the difference between 'consent' and 'informed consent'.
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I just wanted to correct Joan Bakewell's assertion that advance decisions are the same as advance directives. In fact they are different in law. An advance decision is the decision to refuse specific medical treatment and is legally binding. It can be verbal, but if it is to refuse life sustaining treatment then it has to be written, signed and witnessed. Advance directives are 'wish lists' of preferred treatment. They are not legally binding but must be taken into account. I hope this clarifies matters.
It was good to hear discussion of 'best interests' being more than just medical considerations
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Inside the Ethics Committee (broadcast 20th July 2010) was the best programme I've heard this year. Outstanding.
Thank you.
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Thank you for an interesting piece but it had no ethical dimension only a legal one.
I was involved in just this type of decision in the 1970s and what struck me then was the irrational confusion between the laws on mental and physical illnesses. I see the same questions still occur.
If the law allowed enforced treatment for health problems where the professionals decided in the best long term interests of the patient, then John would have been forced to have both the chemical tranquilliser treatment and the throat surgery and no ethical dilemma would have arisen.
If the law however disallowed enforced treatment for health problems then John would have not have been forced to have either the surgery or the chemical tranquilliser treatment and again no ethical dilemma would have arisen.
The ethical dilemma therefore only arose because the two sets of law governing the situation were in conflict. One of them allowed professional judgment followed by enforced treatment but the other did not, despite both issues having a serious effect on John’s health.
It was only that legal discontinuity between the various health legislations that had led to this particular dilemma so it was plainly not an ethical one but only a legal one caused by an arbitrary distinction between a health problem caused by a neurological or chemical abnormality and a health problem caused by abnormal cell division (cancer). Quite why one should warrant enforced intervention by law and the other not, is just an irrationality of the legal system and has nothing whatsoever to do with morals or ethics.
I note in passing that the law allows enforced treatment for what may have been temporary insanity but disallowed enforced treatment for the life threatening cancer! That legal priority choice might well be worth an ethical discussion on the BBC Law in Inaction perhaps?
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A fascinating programme, but so many issues to take in. It would be helpful to be able to download a written record of the programme in order to think about it at leisure. Reading through the discussion would facilitate reflection and recall more helpfully than listening to a repeat (if that is indeed available).
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2nd time this programme has discussed Mental Capacity Act-well done, awareness raising is still vital 3 years on from it coming into force.
One issue only touched on though is the issue of 'diagnostic' test element and the fact that the legal/functional asessment of capacity is linked to an almost Kantian form of rationality that bares little resemblence to the way we all make decisions. As someone currently without a 'disturbance or impairment of the mind...' I can make irrational, illogical decisions with impunity but those with diagnosed mental ill health or learning disabilities, for example, must still jump through additional hoops.
I am aware in myprofessional practice of vulnerable people being refused treatment, tenancies etc because of professional misreading or poor practice in relation to the Act and its statutory principles.
Well done to r4 for this programme but WHY NO PODCAST?!
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I was surprised that not one of the three participants was willing to provide a conclusive decision despite having being told that they had received all the information. Happily the patient was in a suitable condition to confirm his previous answer.
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Excellent programme. Why can't a podcast be put into the Medical Matters strand?
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Back again having now heard this in full having only caught part of the programme while driving this morning. It was quite suspenseful. I was unimpressed with the panel, as they seemed to keep questioning the established facts of the case rather than engaging with them. None of them made a definite recommendation: surely the essence of the test of capacity in this case was, did the patient accept the unusually clear diagnosis and prognosis? If not, he lacked capacity. If he did accept that refusing treatment would lead to his death, he could have expressed a valid wish to refuse surgery that professionals should have respected, but on the contrary, he seemed to believe when unwell that the proposed surgery was in fact an attempt to kill him. The panel kept hedging and treating a clearly incapacitated decision as if it might be a capacitated one. I was even less impressed with the Trust's lawyers. The suggestion about an Advanced Directive seemed to be solely about resisting criticism and to be cynical and coercive. The surgeon and the psychiatrist worked well together and were flexible, available and not too stiff to change their views. I wish all clinicians were that effective in making capacity decisions. I couldn't see what was wrong with the letter to the patient. Yes, it was stark but frankly, the patient's choices were brutally limited by his illness. The programme could have mentioned the Court of Protection as the competent body to decide Best Interests in knotty cases. Brilliant to hear from the patient, clearly still glad to be with us despite nervous lawyers and soggy ethicists!
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While I assume that "John"'s was a hypothetical case, used to illustrate the ethical dilemma, various questions occurred to me whilst listening to the programme. First, how did he come to have the health condition (the cancer) in the first place? Was he a heavy smoker? It is a sad fact that many psychiatric patients* become heavy smokers, because a combination of their mood and their medication means that their horizons shrink, apathy and lethargy set in, and they frequently overeat (or fail to eat) or smoke heavily. They frequently have poor teeth as well, as many psychoactive drugs can reduce saliva production, contributing to damaged teeth and gums. (Of course, some of these drugs can also contribute to increased weight.) I've worked with both psychiatric patients and mentally handicapped adults* so I know that these are a risk. Why aren't their key workers and doctors vigilant as to their general health and lifestyle? It's scandalous that their physical health is allowed to deteriorate until such a medical crisis occurs as the one illustrated in your programme. It's ironic that the "best interests" argument is brought in at such a late stage! Engagement with the patient and advice on a healthier lifestyle earlier on wouldn't go amiss, I'm sure.
I found it rather distressing that it all ultimately boiled to legal questions and definitons. Here was a real (?) person, with fears, hopes, needs, and opinions just like me. It's understandable for a person to feel panicky - paranoid, even - if s/he finds her/himself in the midst of a drama/dilemma that must be resolved within a very short time.
I look forward to further programmes in your series, and to listening on the iplayer to the afternoon play which unfortunately I missed. I'm a mature postgraduate student, and I studied Bioethics intensively as part of my course.
* I know the terminology I've used isn't PC. But I find the PC alternatives "mental health issues" and "learning difficulties" or "learning disabilities" mealy mouthed in the extreme, as well as inaccurate. Let's call a spade a spade. One can do so without intending any offence. My younger son has an IQ of 150 and a degree, but he was diagnosed with learning disabilities, i.e. dyslexia and dyspraxia. Mentally handicapped people are often very good learners and can copy behaviour.
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I find this programme fascinating, and this subject particularly so as I am a laryngectomee. I was given the full operation in 1986 when I was 42, and as I had had an emergency trachiotomy, was just very glad to be breathing so gave my consent. At the time I didn't really consider all the consequences and sometimes regret my decision to go ahead as the operation is completely life changing. It is almost impossible to work afterwards or so I found as no-one wanted a woman with a funny voice who breathed through a hole in their neck in their office. You become a social pariah because people find it difficult to understand what you are saying, particularly in noisy surroundings. Also, you become a dependant on your spouse because you cannot work and cannot claim Disability Allowance as you aren't considered disabled. Luckily for me my husband has kept me, most husbands disappear but I feel sorry for the people who have no-one. We are not given any financial support or counselling, or even sympathy, as we are considered to have done it to ourselves by smoking and drinking. There are other causes, mine was an addiction to nasal sprays, still my own fault of course, but it doesn't help to be labelled.
I hope the patient is still feeling positive and hasn't changed his mind but, as the surgeon said, many people do refuse the operation because of the consequences of it. Fortunately, there are not likely to be many more full laryngectomee operations performed because this cancer is now diagnosed very quickly and sometimes only a small part of the larynx can be removed and/or radiotherapy is greatly improved.
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Surely an important point was missed. The psychiatrist was trying to get the level of medication 'right' to stabilize the patient's mental state, but another way of looking at that might have been that he was trying to get the medication to a level at which the patient would become compliant - and agree to whatever was suggested.
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This comment was removed because the moderators found it broke the House Rules.
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Thanks for an interesting discussion. I did think that there was not nearly enough information given either by the sound of it to John or to the panel about what the likely reality of the operation's effects and consequences might be. Would it have been less difficult if the surgeons proposing the operation had given much more detailed information about what John could possibly expect to happen - maybe even trying to put him in touch with people who had had a similar operation if that was possible or a support group if there is one for people who have had this surgery? In the event it appears that John was able to speak with a new voicebox and it sounds like he was happy he had gone ahead. It feels like allowing a situation to have occurred where he did not have the operation and died would not have been the right outcome at all and there might have been a risk that the wrong choice was made due to the absence of better understanding and information about the effects of the operation.
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comment: 20-7-2010
Inside the ethics committee (20-7-2010)
I managed to hear only part of the broadcast, but it struck me that at no point was it made clear whether the post-operative opportunities were adequately explained to John:
use of Sign Language
artificial voice ( not perhaps as "mannered" as Professor Hawking's )
computer-aided "predictive" word processor.
etc
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I retired 2 years ago as legal services manager at a mental health trust.
The part of my job I enjoyed the most was frequent contact from clinicians with ethical issues such as this.I had undertaken extensive training in health law but was not a qualified soilicitor. Perhaps this allowed me to have more frank discussions with clinicians than solicitors. Clinicians are really looking for concrete advice rather than sitting on the fence as your contributors tended to.I found that I tended to draw on my long experience as a manager as often the law was clear,but didn't help resolve the dilemma.
However, I really enjoyed the programme,but was surprised at the terminology used by supposed experts.
The term "advanced directive" should never be used by anyone in these circumstances as it has no legal validity. The Mental Capacity Act permits an advance decision to refuse treatment which is legally binding if correctly made ;or an advance statement which is an indication of a patient's wishes, but is not legally binding.I fail to understand why the trust's solicitors recommended that the patient make an "advance directive" consenting to the treatment as a patient cannot compel a clinician to provide treatment. A simple consent form would have had the same validity,particularly if details of the info given to the patient and the discussion were recorded in the notes
I also personally find irritating the use of the American term "informed consent". I prefer "valid consent".
I did not hear it made clear that the ultimate decision on treatment lies with the clinician who is undertaking the procedure. This applies both to the assessment of capacity and best interests. Others involved contribute to the decision,including the patient even if he/she lacks capacity.
I agree with other contributors that the impact of the treatment was not fully explored. For example,would the decision have been any different if the patient depended on his voice eg an opera singer?
My experience was that clinicians in acute trusts had limited awareness of the law relating to people with mental illness or learning disabilities. I was aware of instances where relatives of an adult lacking capacity or parents of an adult with learning disabilities or even a consultant psychiatrist were asked to "consent" to treatment.
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To listeners asking about podcasts of the programme - I'm sorry the series is not being podcast. Transcripts will be available not long after the transmission.
Today's Case Notes will be uploaded as a podcast in the Medical Matters podcast slot.
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It is practically impossible for a surgeon to inform a patient who is about to have such a life changing operation as a full laryngectomee just how it is going to affect their life. The surgeon's most important aims are to reduce pain and save lives. However, the patient is told what will happen and sometimes introduced to other people who have been through the operation. Also there are support groups for laryngectomees in most hospitals which are very helpful and Speech Therapists and ENT nurses are wonderful with their patients and often act as counsellors.
John had a valve fitted which pushes air through into his oesophogus when he presses a button fitted on his stoma/trachiotomy. He had a pretty good 'voice' which is caused by air flowing back through the hiatis valve on top of the stomach, which it is necessary to break, and which then of course causes a hiatis hernia. When my operation was done in 1986 it was rare to have a valve and one was expected to learn to 'burp' and get voice without one. Most older heavy drinkers and smokers have already broken the valve and automatically burp which gives them voice. I, unfortunately, took 6 months to break the valve and get the hang of it so was 6 months without speach at all. I am lucky, most people, except the hard of hearing can understand me and think I just have a sore throat, but not everyone does.
It's a very difficult operation and I cannot see how any surgeon could possibly make an ethical decision to force someone to go through with it, except that it gives you life, which of course is always precious. I would also add that many people can smoke and drink, and us nasal sprays, all their lives and never get cancer, like people who sunbathe don't always get skin cancer. Unfortunately some people are more prone to cancers than others, and when people started smoking in the 50's and 60's no-one realised just how dangerous it was.
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I listened to this programme with growing disbelief. Isn't this exactly what is wrong with the handfed, taxpayer funded, government non job idiots we overpay today.
Right from the outset a blind man on a galloping horse could see this poor man was crying out for help and all he could rely on in his moment of need was a soppy lot of hand wringing fence sitters who would find it hard to commit to the notion that night follows day.
When one of the over educated half wits declared that sometimes allowing the man to die may be the correct decision I nearly swerved off the road so that I could find a wall to hit my head against. Surely the concept of doing everything possible to keep this poor sole alive and address the mental issues that tortured his mind cared for later. That should have been at the forefront and not a matter for high brow discussion about wether he would continue to give his consent or not, it seemed to a lot of listeners that the panel were more afraid of litigation than making the obvious decision. If this is ethics, give me the animal kingdom any day, there seems to be a distinct lack of common sense and moral backbone on the health service today the so called panel should hang their overeducated heads in shame.
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I do medical assessments for capacity to consent and for best interests for the Official Solicitor. I would like to congratulate the programme makers on an accurate, fair and representative portrayal, though of a case which was resolved before getting to the Court of Protection.
Not all cases are as dramatic as this one [fortunately!] but the issues are the same.
One factor which does come up regularly, which clients see as unfair, is that one needs a higher level of capacity to consent to the more risky option, rather than to the less risky one. So the client may say 'why will you let me accept the operation, but not refuse it?'. There is an asymmetry here.
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Just following on from Paul Weighell's post. The Mental Health Act is not capacity based, unlike the Mental Capacity Act. Parliament had the opportunity to go for capacity based mental health legislation but rejected this option. One cannot give surgery of the type in the programme under the Mental Health Act. But when the court is making decisions about care, supervision, protection and support, there is sometimes a dilemma about which Act to use.
See recent GJ case [Mr Justice Charles] for review of law on treating physical and mental disorders. Moreover, the civil courts [unlike the criminal courts] cannot make an order under the Mental Health Act. All the court can do is to order an Approved Mental Health Professional to carry out an assessment but cannot determine the outcome of that assessment [Surrey CC v MB 2007].
The Mental Capacity Act, unlike the Mental Health Act, cannot be used for the protection of others.
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Gareth, the chip can be surgically removed from your shoulder.
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It was quite clear that he would never be forced onto the technically demanding operative route prior to his symptoms becoming so bad that he would plead for something to be done. The clinical team adopted the pragmatic plan, not suggested by the ethicists, of jacking up the dose of major tranquilliser until he demonstrated that he was 'better' by giving the right answer: consenting to the operation. It is likely that this was indeed the right answer.
Had the ethicists been in charge, they would still have been arguing about the Unbearable Lightness of Being and whether we are all figments of a cosmic imagination, when the patient rolled up to A&E with inability to breathe, on a Friday afternoon long after the ethicists had gone home to prepare for a gruelling weekend pondering whether on the one hand he would be better off with the operation, but on the other he wouldn't. Meanwhile, someone has to actually deal with the patient.
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