On the BBC’s Moral Maze this evening, the question of elective ventilation was discussed at some length. (For those who missed it, the program is still available here). There were several striking features of that discussion, but one argument that stood out was the argument against elective ventilation based on the importance of respecting the autonomy of patients, and the absence of consent, This has been the basis of previous ethical concerns about Elective Ventilation.
But actually, it seems to me that the consent/autonomy argument is completely upside down.* Patient autonomy provides one of the strongest arguments in favour of elective ventilation. So strong, in fact, that the proposed form of Elective Ventilation should arguably not be ‘elective’. It is morally obligatory that we embrace Elective Ventilation.
Why should this be the case? It is based on a simple, and intuitively plausible idea:
Before doctors allow me to die in hospital because I am critically ill, I want doctors to first check the facts and be sure that it is not in my best interests to provide or to continue life-saving treatment. If that means continuing treatment for a short period of time to be sure – then they should absolutely do that.
But, secondly and importantly, before doctors allow me to die, if there is the possibility that my organs could be used to save or support the life of other people, I want them to check to see if that is something that I would have wanted. If that means continuing treatment for a short period of time to be sure – they should absolutely do that too.
Let’s be clear then about the form of Elective Ventilation that has been endorsed by NICE, and that I am talking about.
Elective Ventilation (EV): The provision or continuation of life-sustaining treatment for a patient who would otherwise be allowed to die, until such time as their wishes about organ donation (if they expressed any) can be determined.
And let us be clear about the alternative, the way that decisions are currently managed.
Status Quo Ventilation** (SQV): The discontinuation or non-provision of life-sustaining treatment for a patient as soon as it is genuinely believed that it provides no medical benefit, regardless of whether their wishes about organ donation are known.
The reason for thinking that patient autonomy provides a decisive argument in favour of Elective Ventilation is that both policies potentially go against patient wishes. So, EV goes against the wishes of someone who does not want to donate their organs, and would not want life-sustaining treatment continued in order to allow that to occur. But SQV also goes against the wishes of patients. It goes against the wishes of all patients who would have wanted to donate, and who would not have wanted their organs to go to waste. It might be thought then, that the argument reaches an impasse, that autonomy doesn’t help us resolve the debate in either direction.
We could perhaps resolve the autonomy argument in a democratic way. If we have good reason to think that more people’s choices would be infringed by SQV than by EV, then we should choose a policy of EV. There is good reason to think that in many countries, including the UK, that most people support organ donation, and would want to donate their organs, even if they are not officially on the register. This favours EV.
A second way of resolving the argument is to point to the harm of disrespecting the patient’s choices. It is not always equally wrong to go against someone’s wishes. If we adopt EV, some patients will have life support continued or provided for a period of perhaps a few hours, or at most a day longer than they would otherwise. As long as they are not in pain (and there is good reason to think that such a patient would and should be given appropriate pain relief and sedation), there is little that they have lost by this delay. Their decision not to donate will then be respected and they will be allowed to die in controlled circumstances in intensive care, with their family having had a chance to come to terms with their illness. But if we continue our policy of SQV, some patients will have lost the opportunity to donate their organs. Their organs, which could have saved the lives of up to 7 others, will be buried or burned. Their wish, their desire to make something good out of their dying, and to give some benefit from organs that can be of no further use to themselves – will be ignored.
But here we reach another widely accepted principle of autonomy. It is important not to go against someone’s wishes if they are known. But it is also important not to foreclose someone’s options, and prevent them from having a choice – where their wishes are unknown, and where it is possible and feasible to determine their wishes. Here is a simple, and perhaps trivial example. I am waiting at a restaurant for a friend to arrive for a meal. The waiter comes up and wants to take our orders. If I know that my friend is vegetarian, I should certainly not order him a meat dish – that would go against his wishes. What if I do not know which meal my friend would like to eat? Should I order for him? The simple and straightforward answer is that if I can, I should try to make it possible for him to choose. Perhaps I give my friend a call on his phone, or perhaps I ask the waiter to wait a little longer for the friend to arrive. Respecting people’s choices means sometimes making it possible for them to choose.
There is a lot of attention to patient choice and autonomy when we are talking about organ donation. But sometimes these arguments miss the point entirely. If we want to respect patients’ choices, we should respect their wish not to donate, or to donate. We should make sure that doctors do not foreclose patient choices because this is something that is important to many people, and should be important, and because if their organs go to waste it represents a significant lost opportunity for them to do something that is morally praiseworthy. Elective Ventilation should not be something that doctors can elect to do if they feel like it, or if they remember to do it. It should be the norm.
Reminder:
Call For Papers: the Journal of Medical Ethics is going to have a mini-symposium on Elective Ventilation later this year. Papers on any aspect of the ethics of Elective Ventilation are welcome.
*Part of the reason for the confusion in the Moral Maze program is that there were two proposals that were being discussed – opt-out consent for organ donation, and elective ventilation. There was a lot of movement in the program from one proposal to the other. There may well be good reasons for adopting opt-out consent. (See Tom Douglas’ previous post on this topic, or Ben Saunders recent feature article in the Journal of Medical Ethics). But those reasons are not necessarily the same as those that apply to elective ventilation, and we might embrace one policy, but not the other.
**I am inclined to call this policy “Wasteful Ventilation”, but let us avoid begging too many questions in our terminology
Edit 25/2/12
The BMJ featured this blog, and elective ventilation in their podcast this week
This is clearly a difficult area. I have no ethical difficulty with admitting a patient to intensive care for elective ventilation provided I know in advance that this is consistent with their wishes – ie the patient is on the organ donor register or has previously expressed a strong desire to donate their organs AND understands that elective ventilation may form part of this process. This may not apply to everyone who is currently on the organ donor register as we do not currently undertake elective ventilation and it is a bold assumption that people who have consented to organ donation after brain or circulatory death will also consent to having their dying process prolonged.
Where I have particular ethical difficulties is with the cohort of patients who have not previously expressed a strong desire to donate. Some of these may wish to do so but have been too indolent to do anything to register their desires, some may have no very strong feelings and others will be actively opposed. 'Offering' elective ventilation to ALL patients who may be potential donors risks exposing a significant number of patients to a prolonged death in a high-tech environment whose preference would have been to die quietly at their own pace in a more peaceful location. There are already significant concerns about the quality of care offered to end-of-life patients in acute hospitals. Most of the complaints pertain to over-medicalisation of the process and a deficiency of care and compassion. It is difficult to see how introducing elective ventilation will improve this.
One of the key issues here is that the waiting list for
Thanks Jon for your comment, it is great to have the insights of someone who works at the coalface in this area.
You are right that some people may indeed have a preference to be allowed to die quietly without all the palaver of intensive care and ventilation. You are also right that we should, where feasible avoid overmedicalising death. But the patients that we are talking about – those who deteriorate suddenly, without forewarning, and without a chance to talk to them or their family beforehand, already, typically, have significant medical intervention prior to their death.
And although those who work in intensive care may worry about becoming the default location for dying within the hospital, I don't think that it is an accurate description of death within intensive care to say that it is characterised by a deficit of care and compassion. On the contrary, I think that those of us who work in intensive care, like you and I, work very hard to make sure that those who die there do so with dignity and caring at the end of their life.
Some will see elective ventilation as intensification, and medicalisation of death. But we already do these things (intubation, ventilation, cannulation, organ support) for patients in order to give them a chance (sometimes only a small chance) of longer survival. Elective ventilation is about providing or continuing those same treatments for another, (but also important) reason: to give those who want to, the chance to donate their organs after death.
AFTER LISTENING, in bed TO THE DEBATE ON MORAL MAZE ON SAT NIGHT 18thFEB, I WAS SO DISTURBED THAT I GOT UP, READ YR ARTICLE AND AS INVITED WROTE A COMMENT. At Ipm today19th I note that my comment has not been published. WHY? At 84yrs old this urgently concerns me!!
I don’t see your comment in our deleted comments box, so it sounds like there was an error in transmission in this case. But please be aware that we get twice as many spam comments as we do real ones, so we have to be quite aggressive in screening comments.
You might want to indicate what you mean by "elective ventilation" earlier on – until I got to the word "patient" I was trying to figure out why you needed to get more air into voting places.
Haha! Thanks Julia, as euphemisms go, it is pretty obscure. You will find a link to my previous post on this topic (which explains in more detail the term) from the link in the first sentence.
Hi Dominic, I have written something over on my blog in response, you might want to have a look at it. I am largely in agreement but argue that elective ventilation is consistent with the spirit of an opt-out organ donor register and not with a opt-in system. As a democratic society we should first focus on changing this.
It is here: http://www.nathanemmerich.org.uk/blog/elective-ventilation-and.html
The subsequent post about the metaphysics/ epistemology of death might also be interesting, but I am afraid in that post I do go on somewhat…
Thanks Nathan. Your post outlines the 'democratic' argument for elective ventilation being the default – most people want to donate, therefore most people's wishes will be respected by a policy that provides elective ventilation until patients' wishes are known. But, as I note above, even in a society where those who would want to donate are in the minority there is an autonomy based argument for making obligatory ventilation the default – elective ventilation makes it possible for people to choose to donate, as well as to choose not to donate. Status Quo Ventilation respects only (or preferentially) those who do not wish to donate.
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