If you continue without changing your settings, we’ll assume you’re happy to receive all cookies from the BMA website. Find out more about cookies
When you visit any web site, it may store or retrieve information on your browser, mostly in the form of cookies. This information might be about you, your preferences or your device and is mostly used to make the site work as you expect it to. The information does not usually directly identify you, but it can give you a more personalised web experience.
Because we respect your right to privacy, you can choose not to allow some types of cookies. Click on the different category headings to find out more and change our default settings. However, blocking some types of cookies may impact your experience of the site and the services we are able to offer.
These cookies are necessary for the website to function and cannot be switched off in our systems. They are usually only set in response to actions made by you which amount to a request for services, such as setting your privacy preferences, logging in or filling in forms.
You can set your browser to block or alert you about these cookies, but some parts of the site will not then work. These cookies do not store any personally identifiable information.
These cookies are required
These cookies allow us to know which pages are the most and least popular and see how visitors move around the site. All information we collect is anonymous unless you actively provide personal information to us.
If you do not allow these cookies we will not know when you have visited our site, and will not be able to monitor its performance.
These cookies allow a website to remember choices you make (such as your user name, language or the region you're in) and tailor the website to provide enhanced features and content for you.
For example, they can be used to remember certain log-in details, changes you've made to text size, font and other parts of pages that you can customise. They may also be used to provide services you've asked for such as watching a video or commenting on a blog. These cookies may be used to ensure that all our services and communications are relevant to you. The information these cookies collect cannot track your browsing activity on other websites.
Without these cookies, a website cannot remember choices you've previously made or personalise your browsing experience meaning you would have to reset these for every visit. In addition, some functionality may not be available if this category is switched off.
Our websites sometimes integrate with other companies’ sites. For example, we integrate with social networking sites such as Twitter and Facebook, to make it easier for you to share what you have read. These sites place their own cookies on your browser as a result of us including their icons and ‘like’ or ‘share’ buttons on our sites.
In mainstream medicine, the goal is to extend life: often patients will sacrifice the quality of their existence today for the chance of gaining time later. Healthcare professionals are rightfully trained to treat first and ask questions later. But what about missed opportunities earlier on in the illness trajectory, when possible future scenarios could have been explained?
'It's not that I'm afraid to die. I just don't want to be there when it happens' said Woody Allen. He perhaps pinpointed what many of us fear, deep down. The fear of the unknown, but also a sense that we lose control. I frequently ask medical, nursing but also art college students to imagine themselves in their dying moments, and I task them with commenting on what they see and hear. Many find themselves in a clinical setting although some picture watching a sunset from a warm beach, friends surrounding them, and an ice cold Pina Colada at the ready. In order to realise such a vision we have to take control, and talk about our dying moments, which is something we’re often not comfortable doing.
It is a different way of thinking about it, but isn’t every breath we take worth investing in, regardless of where we are on the tape measure that represents our life? This is where healthcare needs to feel its own pulse, and come up with a new approach. We spend a lot of energy on tests, investigations and hospital stays in the last year of life. Perhaps more time should be spent talking about not doing a test or not giving a chemical treatment that may in fact lead to deterioration and death more quickly, if unlucky. Many relatives and carers of patients who have died, tell me that had they known it was the last year, they would have done more to challenge the seemingly endless onslaught of tests, treatments and hospital visits. Instead, they would have gone for many more days at home or enjoyed the beautiful outdoors here in Wales. But in the end, they just went with the flow of 'what the doctor ordered'.
The topics we tend to bring up in palliative care (and we are a frank talking lot) include what treatments you would accept and which are less acceptable to you, the individual. But it is not just down to palliative care, and in fact GPs, hospital doctors and community nurses will be talking about this sort of thing daily and are the front line of palliative care. It’s called advance or anticipatory care planning. We have created an information website in Wales with explanatory videos about advance decisions to reduce treatment and it has only recently been launched by the end of life charity Dying Matters in Wales (Byw Nawr): http://advancecareplan.org.uk/
For instance, if you, as an individual with cancer that has spread to other organs in the body, knew that an intervention called CPR (Cardiopulmonary Resuscitation) is only successful in less than 2% of patients, then you may choose to opt out in future. Equally, you may feel you would consider doctors giving you CPR, despite its very low success rate and risk of pain and damage to internal organs and the brain. Everyone is different.
This is why we set up information sites for patients, carers and healthcare professionals on what CPR involves, what its benefits are and what the drawbacks can be. I engaged in a frank conversation with a patient of mine recently on this topic. After discussion, he asked me to fill in a Do Not Attempt CPR form for him to take home, so that no one would attempt this should he deteriorate quickly. He saw it as a safety measure, a protection from default medical care that preserves a heartbeat at all cost. But he wanted me to make mention on the form that he wanted his chemotherapy to go ahead. Filling in the form and taking it home has not made him worse off. In fact he is doing rather well. But his wishes are plain to see.
The website we created is open access and can be accessed here www.talkcpr.wales
Dr Mark Taubert, Consultant in Palliative Care and BMA/BMJ Clinical Teacher of the Year 2017
From your blog:
'The fear of the unknown, but also a sense that we lose control.'
I've seen phrases like 'giving patients a sense of control' – always raises my hackles: either we have actual control, or we don't – this 'a sense of control' is for me a deeply unhelpful phrase in healthcare. Assist patients to control what they can control, but if you are NOT doing that, 'giving patients a SENSE OF' control covers to my mind 'a multitude of sins'!
'Many relatives and carers of patients who have died, tell me that had they known it was the last year, they would have done more to challenge the seemingly endless onslaught of tests, treatments and hospital visits' - see the tweet!
'After discussion, he asked me to fill in a Do Not Attempt CPR form for him to take home, so that no one would attempt this should he deteriorate quickly.' - probably necessary: but it shouldn't be because his own ADRT refusing CPR SHOULD work better!
FOOTNOTE - the above is going on Twitter (I had written the above for Twitter before I found the 'leave a comment' here). Posted on Twitter at twitter.com/.../866943439937695744
You never explicitly asked me for my name - Mike Stone (Michael H Stone for BMJ purposes) because I don't like to post anonymously.
I'm assuming Mark might read the comments here - there was a 'stages of a Twitter User' I saw yesterday, and I'm currently between 'AHA!' and 'Obsession'. If I get to 'obsession' - and in particular if I get stuck at obsession - I'll be blaming you, as you got me involved with Twitter! My mind is already in bad-enough shape, without adding 'a Twitter obsession'!
More significantly, it isn't just talking about CPR: it is, in fact, 'talking about your [likely] death, and what you think [before you get there - so you might change your mind] you would want to happen. It is ALSO - crucially [and I think Mark will have figured this out by now - we have discussed some of this stuff recently] - about 'how you control what actually happens to you'. Which is a different issue - it is an issue which is both a legal one in terms of decision-making and decision-makers (all of which is in essence contained within the Mental Capacity Act - and much of what the MCA says is subject of quite heated 'dispute' between various parties), and also a 'mindset one': the mindset one is essentially about 'control' (the MCA to me implies that 'the patient has been given control' but 'the NHS' still likes 'to have the professionals in control'.
These are deeply problematic issues - they need something beyond 'achieving the conversations' which is a necessary step: although we could thrash out the 'control' issues at the same time as we try to improve the conversations. couldn't we?!
I'm putting this here, because then when I point at it, people will doubtless read Mark's piece as well [or, quite possibly, instead of this comment].
Mark clearly isn't all that happy with:
'But in the end, they just went with the flow of 'what the doctor ordered'.'
Once upon a time - that time ended before the year 2000 for the UK, but we are not sure exactly when (see 'Montgomery') - there was a 'doctor knows best' attitude not only about the clinical aspects of treatment (where that is still the situation legally), but also for the 'consent issues'. Our law has moved on - consent is now based firmly on 'the patient's perspective'. The simplest situation can be described as 'an informed capacitous patient makes his or her own decision', and the trickier situation is the 'best-interests decision-making during incapacity'.
Both of those, very much depend on 'the individuality of the particular patient'. So the concept of 'a typical patient' can now only be used, when designing service provision within healthcare - you cannot apply any idea of 'the typical patient' to individuals. as Mr Justice MacDonald made clear in an exemplary explanation of his ruling when a woman was refusing kidney dialysis:
'others in society may consider C's decision to be unreasonable, illogical or even immoral within the context of the sanctity accorded to life by society in general. None of this however is evidence of a lack of capacity ... C has capacity to decide whether or not to accept treatment [so] C is entitled to make her own decision on that question based on the things that are important to her, in keeping with her own personality and system of values and without conforming to society's expectation of what constitutes the 'normal' decision in this situation (if such a thing exists). As a capacitous individual C is, in respect of her own body and mind, sovereign.'
The challenge for working clinicians, is that it then becomes very tricky to decide whether a patient has lost mental capacity because of some sort of 'mental disorder' (Mr Justice MacDonald also mentions that in his ruling: 'Having found that C is not a person unable to make a decision for herself for the purposes of s 3(1) it is not necessary for me to go on to consider the so called 'diagnostic test'. It is right to record that, as I observed at the conclusion of the hearing, had I been satisfied that C was unable to use and weigh information in the manner contended for by the Trust, I believe I would have had difficulty in deciding that this inability was, on the balance of probabilities, because of an impairment of, or a disturbance in the functioning of, the mind or brain ... more importantly, with regard to the question of causation, and in particular whether what was being seen might be the operation of a personality disorder or simply the thought processes of a strong willed, stubborn individual with unpalatable and highly egocentric views the evidence was likewise somewhat equivocal.').
The challenge for working clinicians of best-interests, is multiple. Although many people disagree with me (so far) the reality is:
a) section 4(6) of the MCA, the only real guidance about 'the meaning of best interests', clearly is based on 'understanding the individual as a person'. The logic is obvious - it is the family and friends of the patient, who understand the patient as an individual, who should be able to consider section 4(6), and therefore best interests as a whole, than the clinicians. Logically - if we set aside 'issues around trust' and concerns about 'emotion' - it would seem that the clinicians should provide clinical information to 'those close to the patient', and it is those family and friends who should then figure out 'what would be in the patient's best interests'. The professionals seem to deeply dislike that logic - nevertheless, the logic is sound.
b) the MCA doesn't explain how disputes can be resolved without applying for a court ruling - and court rulings are not things which we should be doing routinely, for obvious reasons. If you adopt my a), it becomes a little complex if the family/friends are not all in agreement. Suppose there is a comatose mother after a car crash, and her only two close family/friends are two daughters. The clinical situation is 'laid out' and one says 'I feel sure my mum would want to be treated' but the other says 'I feel sure my mum would refuse that treatment, if she could'. Each daughter can, I think, claim to have defensibly complied with section 4(9) of the MCA. But, I doubt that any of the clinicians could. However, this isn't necessarily an impasse: there is a 'default assumption towards preservation of life' in law/MCA unless that is removed by compliance with 4(9)' There, one daughter should do nothing to promote the treatment, the other daughter must advocate for the treatment, and I think all of the clinicians must be in favour of the treatment (because individually, none of them can claim to understand enough to have satisfied 4(9)). This is quite tricky - especially if we move it to the mother at home, the two daughters as family carers, and the treatment in question being CPR.
c) the MCA describes a set of separations: patients are either capacitous or incapacitous with respect to a particular decision at a particular time; there is a person with legal authority over best-interests decision-making or there is not (as the MCA only gives such authority to welfare attorneys and court deputies, usually there is not a person with legal powers over best-interests decision-making), etc. The MCA involves a lot of 'collaboration' but it does NOT amount to 'shared decision-making'.
d) The MCA runs very much in the opposite direction to 'safeguarding' and it is not an easy fit with any model which is based on 'achieving good outcomes'. See:
e) despite d), clinicians still have 'safeguarding' and 'never events' thrust at them, even if they are personally willing to accept the patient autonomy (even if that autonomy amounts to self-destruction) present in our current 'consent law': this makes life potentially very difficult for working clinicians.
There is also something else about Informed Consent (as it happens, touched on by Mo in this Tuesday's episode of Holby City). While doctors describe the risks of potential treatment, those risks once described are considered by the patient: so it is for the patient, before consenting or refusing an offered treatment, to consider which risks [and benefits] to accept. I have an ongoing issue with this re written Advance Decisions refusing CPR when the patient is at home: my position is 'I wouldn't have written it, unless I wanted you to follow it' - but 999 paramedics seem to 'want to check beyond the ADRT's prima facie validity' which, for an ADRT refusing CPR, defeats its purpose.
Mark - and many other doctors - write well about many things for end-of-life: but we need to sort out the legal issues, and to sort out how exactly family carers fit in for EoL at home, and clinicians such as Mark seem to write about those issues far less frequently.
Kate Masters has just tweeted twitter.com/.../867667863573757952
'I don't know what that answer is but at least if I am ever faced with this I will know my rights (in some cases better than the medics!)'
and I tweeted back:
''Love' 'in some cases better than the medics' - but your rights will not work, if the medics don't understand/apply them, will they?!'
This needs thrashing out - Mark is I think correct with his 'He saw it as a safety measure, a protection from default medical care that preserves a heartbeat at all cost' but our law has moved on, in essence to 'what would this particular patient have wanted - if he could tell you, would he want you to preserve his life or not?'.
The challenge, is to get the clinicians to fall into line with the law (whatever the law is - whether you want it changing or not - it is 'where it is', and it cannot be 'sanity' to have a law which implies a particular type of behaviour, while working clinicians are exhibiting a different type of behaviour).
Typed without much proof-reading - so apologies for any mistakes.
<a href="spunksoft.com/.../>clinical sas training in Hyderabad"</a>