How Not To Cover Medical Ethics

by hilzoy

Here's an article from the Daily Mail with the headline: "Outrage as Church backs calls for severely disabled babies to be killed at birth". And here's the Church of England statement that the article is based on. It's called "The ethics of prolonging life in fetuses and the newborn."

Notice a difference? That's right: the Daily Mail talks about killing babies at birth; the CoE statement talks about prolonging life. Moreover, if you read the CoE statement, it doesn't talk about killing at all. What it does say is this:

"This is not incompatible with accepting that it may in some circumstances be right to choose to withhold or withdraw treatment, knowing that it will possibly, probably or even certainly result in death. To justify such a course of action two conditions would have to be met. First, there would have to be very strong proportionate reasons for overriding the presupposition that life should be maintained. Second, all reasonable alternatives would have to be fully considered so that the possibly lethal act would only be performed with manifest reluctance."

Note that the only "possibly lethal act" under discussion is 'withholding or withdrawing medical treatment'. Withdrawing or withholding treatment is exactly what it sounds like: it means deciding that while you might keep yourself or someone else alive a little longer by medical means, you choose not to. This is something you can only do when the medical treatment is, in fact, keeping the person in question alive; if you're healthy, you're already doing fine in the absence of medical treatment. "Withholding" chemotherapy from someone who doesn't have cancer is not just OK but obligatory; and if for some reason a healthy person had been put on chemotherapy, "withdrawing" it as soon as possible would be a no-brainer.

When someone is ill, we normally think that she can refuse treatment; and, of course, people do this all the time. They decide, for example, that it's not worth undergoing one more bout of chemotherapy for the sake of one more week, or one more month. When a person can't decide for herself, whether because she is unconscious or because she is not competent to decide (as an infant is not), medical treatment can be withdrawn when whoever is charged with making this decision concludes that it is in the person's best interests, either as that person has defined them or (in the case of children and others who have not had the chance to decide for themselves what they value) as seems reasonable to the person charged with making medical decisions for that person. In the case of children, this normally means: when the child has some incurable medical condition, and when the disadvantages of the treatment to the infant outweigh its advantages.

For instance, if you can keep a newborn alive for one extra day by subjecting her to a major operation, that might well not be worth it: an extra day that she will spend first anaesthetized and undergoing major surgery, and then drugged and in pain, is really not worth the cost to the infant: the pain and suffering. Likewise, if an infant has some disease that she will die of before she reaches her first birthday, and which means that she will spend her short life suffering in the hospital, undergoing a series of increasingly desperate medical procedures, you might decide, at some point, that subjecting her to those procedures was just inhumane. Often, the doctors and nurses charged with treating such an infant are torn apart by cases like this, and part of what tears them apart is the thought: this isn't medicine, it's torture.

More controversially, you might decide not to treat her for some unrelated illness: for instance, if she gets pneumonia, you might decide to allow her to die of it rather than living out her remaining few, painful months. This is something that adults sometimes choose to do: I have known people with horrible terminal illnesses who have decided that if they get pneumonia, they do not wish to be treated. In the case of infants, it's done a lot more rarely, since it's easier to take an adult's word for it that she does not want to be treated than to make that decision on behalf of a child. It is virtually never done when the child does not have an underlying condition that dooms her to a short life of suffering. But in the case of an infant who has a condition that will kill them before they become toddlers, and that will cause them to suffer throughout their short lives, it's not at all obvious to me that pneumonia is not a mercy.

The decision to withhold medical treatment is a horrible decision for all involved. But it is completely different from the decision to kill someone (yourself or another person): to take a gun to that person's head and kill her, or inject her with poison, or beat her to death, or open her veins and let her bleed to death. It's just not the same at all, and the Daily Mail is not doing anyone any favors by pretending that it is. Moreover, they seem to have taken some people in (Sister Toldjah: "It was only a matter of time before ‘active euthanasia’ (as the Royal College of Obstetricians and Gynaecology call it) started to catch on, especially considering that partial birth abortions are legal in the UK, ‘justifiable’ on the basis that the mother’s health could be ‘at risk’ if the baby is actually born." In fact, the CoE is opposed to active euthanasia.)

The other controversial bit of the CoE's statement is its refusal to rule out the possibility that the costs of treatment might factor into the decision whether or not to terminate treatment. What they actually say about cost is this:

"Great caution should be exercised in bringing questions of cost into the equation when considering what treatment might be provided. The principle of justice inevitably, means that the potential cost of treatment itself, the longer term costs of healthcare and education and the opportunity cost to the NHS in terms of saving other lives have to be considered.

Nevertheless significant and continuing advances in medical technology have frequently come about through the use of initially expensive and risky techniques. Some developments in life support have become routine as skills and knowledge have grown. Where lives are at stake society should be extremely cautious over concluding too readily that new techniques cannot be afforded. There needs, too to be a recognition that people with disability have as much a right to life as everyone else, and that the ongoing cost of caring for them should be shared, not left solely to the families concerned.

The principle of compassion, for a Christian, is key. There are many instances in the life of Christ where he overrode rule-based systems. There may be occasions where, for a Christian, compassion will override the ‘rule’ that life should inevitably be preserved. Disproportionate treatment for the sake of prolonging life is an example of this. The ever-improving understanding of how and why fetuses and neonates experience pain needs to be taken into account in decisions about treatment."

This is hard for me to read as saying something like: if it gets too expensive to care for someone, pull the plug! It reads more like an acknowledgment that there are some circumstances -- hopefully rare, but theoretically possible -- in which cost might be relevant. Suppose, for instance, that an infant has a terminal illness that will kill her before her first birthday, and that makes her suffer, but that her suffering is not quite severe enough to make you think that it would be best to allow her to die, rather than giving her an operation that would prolong her life by a few months. It's a tough call -- she is suffering, the operation will make her suffer more, and it won't do anything more than postpone her early death -- but you don't think you should withhold treatment.

In a case like this, is it obvious that there is, in principle, no information about the cost of the operation that would make you rethink your decision to go ahead with it? What if the operation would require that the entire GDP of your country for the next ten years be devoted solely to paying for this operation? What if we add in the fact that if your country's entire GDP was used to pay for this operation, no one else would be able to get any medical care at all?

To my mind, the most plausible way to read the CoE's statement is as recognizing that there are some situations, like the one I described, in which it would not be crazy to think that financial considerations could come into play, especially in a system like the UK's, in which medical expenditures basically come out of one pot, so that spending in one area has to be balanced by cuts somewhere else; but as urging extreme caution when taking cost into consideration. In any case, the rest of the position paper makes it clear that this only concerns the decision to give or withhold treatment, not the decision to up and kill people. It's not a nutty view. Too bad the Daily Mail chose to present it as if it was.

Comments

[Jesurgislac]

Hilzoy, to a Brit, the news that the Daily Mail has produced a wildly inaccurate and unbalanced article is kind of like saying that Fox News has run a news item blaming the Democrats for something. There's at least one blog devoted to Daily Mail hate (www.mailwatch.co.uk) and I believe, though I've never checked, that there's a livejournal support community for people whose parents are regular Daily Mail readers and who therefore have to deal with regular doses of crap on their visits home, prefaced by the phrase "I read in the paper that...")

It's a Conservative paper for people who aren't bright enough to read The Times, which in turn is the Conservative paper for people not bright enough to read The Telegraph.

[hilzoy]

Yikes. Serves me right for only recognizing three or four British papers....

Still, worth saying in any case, I think, since people seem to be using the DM to confirm their darkest fears.

[Slartibartfast]

On that scale, where's the Grauniad fall? Or is that sort of thing orthogonal to political leaning?

[Katherine]

I don't actually read the Daily Mail, but I've read the Daily Mail o Matic and feel like I get the gist.

[Slartibartfast]

Props to them for the Qwghlm reference. Think what that'll do for Qwghlmian national pride.

[Jesurgislac]

The Guardian is left-wing, if that was your question?

The Guardian and The Telegraph both have a reputation as papers with some intelligence and balance: both are also upfront about their political allegiance.

The Daily Mail and The Daily Mirror both have the typical reputation of tabloid newspapers - more interested in sensationalising an issue than in discussing it, though the Mail will take the right-wing POV and the Mirror will take the left-wing POV.

On a train trip I once took, I found a copy of the Mail and a copy of the Mirror abandoned on different tables, stole them, took them back to my table, and occupied an interesting hour or so comparing the two.

Ninety percent of the "news" in both tabloids was identical: snippets taken from Reuters and pasted in the paper. The remaining 10% (the front page, editorials, etc) was what gave each paper the political slant, and the rest of either paper (about 50% of it) was dreck and fluff - crap about celebrities, recipes, horoscopes, other rubbish.

[Jesurgislac]

Hilzoy: since people seem to be using the DM to confirm their darkest fears.

That's what they use the Daily Mail for in the UK, too.

That and litter tray liner, wrapping chips, and lighting fires.

[matttbastard]

Best Daily Mail article EVAR.

[dutchmarbel]

We've been there and a step further. Compare this piece about euthanatia for babies with this piece...

That first piece is such a total piece of made-up assumptions and fear mongering connotations that it is hard to respond to, let alone clarify or start a debate.

For what it's worth: I'm in the ca 80% who approve of our euthanatia laws.

I have a lot of anecdotal evidence of the advantages of the system. But a factor that is often overlooked in discussions like this is that I often feel that we have a lot more trust in our doctors (and government) than Americans seem to have. Not in the skills as such, but in their personal commitment, their integrity, their responsibilities.

I'm not saying this is automatically a good thing, it might be a remnant from the Calvinist spirit in the culture. But I think it matters because we don't expect much abuse - whereas adversaries often seem to expect that it will lead to some kind of slaughterfestine.

[Ara]

DM seems to be taking the position that there is no distinction to be made between acts and omissions.

I wonder if they take the same viewpoint in other issues, such as our obligations to give foreign aid.

[Lex]

[[Moreover, they seem to have taken some people in (Sister Toldjah: ... ]]

ST has been taken in so many times it wouldn't surprise me to learn that she's the world's leading owner of bridges and swampland.

[JakeB]

Your discussion of the question of excessive cost reminds me of something I once read about kidnappings, in which it could be important for the family involved not to sacrifice too high a percentage of their assets as ransom. In the midst of such a situation, it is easy to believe that no cost is too great; but if the end result is that the family is bankrupted, there can be very unpleasant long-term emotional consequences for everyone--the other family members who resent losing everything, and the saved one who feels terribly guilty. Such things can also apply in the situation of certain medical care.

[DaveC]

I'm in the err on the side of caution camp.
Possibly relevant passage in this essay:

In the mid-nineteenth century there was a conjunction between two processes, each in themselves enlightened. One was the attempt to spread public health in the cities by sanitation, vaccination, informed diet, better medical services, and improved housing. The other was the work of Charles Darwin in showing how organic life evolved and how the fittest survived. The conjunction produced the science or cult or program of eugenics, the physical betterment of the human race which was akin to the attempt to perfect it intellectually and morally that had been the fatal fallacy of the French Revolution. Eugenics flourished between the 1870s and World War II and was the faith not only of a large part of the medical profession but also of progressive thinkers and propagandists such as H. G. Wells and George Bernard Shaw. In the pursuit of ideally healthy human beings, they were cheerfully prepared to eliminate (that is, sterilize) the mentally unfit, the criminally insane, or even the merely retarded.

From this essay.

Concerned about bias and misleading headlines and or captions in the media?

Join the club!

[john miller]

DaveC: "I'm in the err on the side of caution camp."

Sounds like that puts right alongside hilzoy and the CoE, as well as the vast, vast majority of people. Not exactly sure what relevance the quote you put in your comment has to what is being talked about.

Can't comment on your link as didn't wok for me. If I can get it later, I might. But for what it is worth, I despise any misleading headline, no matter what side it ocmes from. I, like most liberals, believe in an educated public, and misleading headlines, just like misleading political ads (from both sides)tend to work against that concept.

[john miller]

Not only didn't it "wok" for me, it also didn't "work."

[john miller]

Although some nice Mongolian stir fry sounds good right now.

[radish]

I refuse to visit any website that refuses to specify whether it's Inner Qwghlmian or Outer Qwghlmian, but if I had looked at it I would have thought that the David Blunkett policies were hilarious -- definitely better than the Daily Mail headlines.

[Phil]

Hey, the Daily Mail at least has the distinction of appearing in a Beatles song. Take that, Guardian and Times!!

[DaveC]

Older Times Online article via Assistant Village Idiot presents differing viewpoints, despite the headlines:

The college’s submission was also welcomed by John Harris, a member of the government’s Human Genetics Commission and professor of bioethics at Manchester University. “We can terminate for serious foetal abnormality up to term but cannot kill a newborn. What do people think has happened in the passage down the birth canal to make it okay to kill the foetus at one end of the birth canal but not at the other?” he said.

Edna Kennedy of Newcastle upon Tyne, whose son suffered epidermolysis bullosa, said: “In extremely controlled circumstances, where the baby is really suffering, it should be an option for the mother.”

However, John Wyatt, consultant neonatologist at University College London hospital, said: “Intentional killing is not part of medical care.” He added: “The majority of doctors and health professionals believe that once you introduce the possibility of intentional killing into medical practice you change the fundamental nature of medicine. It immediately becomes a subjective decision as to whose life is worthwhile.”

If a doctor can decide whether a life is worth living, “it changes medicine into a form of social engineering where the aim is to maximise the benefit for society and minimise those who are perceived as worthless”.

Simone Aspis of the British Council of Disabled People said: “If we introduced euthanasia for certain conditions it would tell adults with those conditions that they were worth less than other members of society.”

I'm wondering if when "withholding treatment" would be interpreted as "withhold nutrition" in some of these cases. That bothers me, but maybe the subtext I'm picking up on isn't actually there.

In any case,though I think that the clergy should give comfort to adults faced with a terrible tragic dilemma, they should also be advocates for disabled children and warn people about the slippery slope here.

[hilzoy]

DaveC: if terminology is being used in a normal way, then withholding food and water counts as 'withholding treatment' only if the food and water is being delivered by some intrusive bit of medical technology, like a feeding tube. You are allowed to decline a feeding tube, for yourself or someone whose guardian you are, since it's thought to be a medical intervention that (as it happens) delivers food, and as a medical intervention, can be declined. You can also decline, for yourself, to eat or drink (since then someone would have to force you to eat or drink, which is battery, I think, unless it's assault -- I always get them confused). But you cannot decline to have someone under your care given food and drink if they want it, since that's not 'declining treatment' or 'declining to force food down someone's throat when they don't want it'.

Clear-ish?

[DaveC]

I was thinking in terms of the newborns, who can neither ask for nor decline food and water. And it's not clear whether a baby bottle is the same or different than a feeding tube.

[Ara]

DaveC: So, I think we can make a distinction between starving a newborn and denying a newborn treatment, even if the criteria for consent are unclear (as in the case of newborns), and even though they overlap since some cases of feeding are also cases of treatment.

[hilzoy]

DaveC: normally, the difference is whether intrusive technology is used. So: feeding tube counts as treatment (that is also feeding), bottle doesn't. -- The point about being able to consent really matters most in the case of a person who decides not to eat -- since then feeding that person would involve forcing her. When someone isn't capable of deciding one way or the other, though she would eat if fed, you normally can't withhold a bottle, but you can decide to have a feeding tube (or a ventilator) removed. (Possibly the ventilator example helps: there's a big difference between saying that it's OK to unplug a ventilator and saying that you can prevent someone from breathing by other means.)

Philosophers like me can get all interested in precisely what the difference between removing a feeding tube and withholding a bottle is supposed to be. In practice, there's a good reason to be glad that things are done this way (meaning: that it's normally thought to be OK to decide to remove a feeding tube from someone who is not competent to decide, and whose guardian or surrogate thinks it's in that person's best interests.) Namely:

There are a lot of cases in which someone might be faced with the following sort of choice: try a risky operation that has, say, a 60% chance of curing him, but a 40% chance of leaving him as a vegetable, permanently kept alive by a feeding tube. Suppose this person does not want to be kept alive in that condition. If that person could not ask people to remove the feeding tube if the operation went badly, he'd have to choose between {taking the chance of being cured at the risk of being kept alive as a vegetable, which he doesn't want}, and not having the operation, thereby (let's suppose) certainly dying. If he really didn't want to live as a vegetable (say, in a Terri Schiavo-like condition), he might choose not to have the operation to avoid this. This would be a real pity if the operation would actually have worked.

Allowing people to ask for feeding tubes to be removed under certain conditions -- treating feeding tubes as a form of treatment -- allows people faced with choices like this to choose a much better option: trying the operation, and then not being kept alive if it doesn't work out. That means that people won't end up having to decline treatment that might well save them in order to avoid ending up like Terri Schiavo, and that's a good thing, imho.

[Francis]

hil: at common law, battery is an unlawful touching, and assault is attempted battery.

i tried a number of tricks to remember which was which. one that stuck is that the thing you use to break into a castle is a battering ram, not an assaulting ram.

yr friendly neighborhood JD.

[DaveC]

Good case for living wills.

As far as babies are concerned, the CoE had stated earlier,

In February 1998, the General Synod debated a private member's motion on the Warnock Report and carried the following motion:

'This Synod in the light of the commitment of HM Government to proceed to legislation on Human Infertility Services and Embryo Research:

1. reaffirms the General Synod Resolutopn of July 1983, "that all human life, including life developing in the womb, is created by God in his own image and is therefore to be nurtured, supported and protected";

I think that precedent should be carefully considered, especially by the clergy, not that they get final say on the matter.

[Keir]

Mind, the C. of E. is pretty democratic. It covers the ground between High and Low Church types. It is entirely possible for different parts of the Church to take a different line on issues.

There is also the fact that not keeping a baby alive for an extra few months of pain and misery is quite different from, say, injecting them with a poison. Which is why the C. of E. makes a difference between the two.

It also makes the slippery slope argument a bit odd. It's like being against stiff penalties for theft, because then we'll have to have them for cases of negligence in reporting theft.

There is a qualitive difference, not a quantative difference.

Rant:

I think that precedent should be carefully considered, especially by the clergy, not that they get final say on the matter.

Well, I think they do get quite a say: quite aside from the the fact that the head of the C. of E. is Sovereign, the top 26 Bishops are in the House of Lords. They shouldn't, and this is why the House of Lords should be thoroughly reformed, starting by casting out the hereditary Peers, and ending by having proper elections for it.

[Jesurgislac]

Keir: They shouldn't, and this is why the House of Lords should be thoroughly reformed, starting by casting out the hereditary Peers, and ending by having proper elections for it.

Actually, I have an absolutely spiffing idea for reforming the House of Lords, which no one will ever take me up on.

I think it should be filled with National Lottery winners. If you win (say) £3M+ in the National Lottery, an additional bonus/responsibility is a life peerage and the responsibility to sit in the House of Lords. Lottery life peers could claim reasonable expenses, like MPs, for stays in London while the House of Lords is sitting/paying a secretary, and get assistance from civil servants in being informed about the issues in the debates.

As the House of Lords fills up with lottery life peers, the current band of lords legal, temporal, and religious, would be given the boot - appropriately, perhaps also by a lottery.

In this way the upper House would retain the advantages of being filled with people who need own no allegience to any party or business interest. (Of course, the old hereditary peers weren't exactly good examples of that, but this was claimed as being their advantage.)

The current system of political appointees is just about the worst that could be devised.

[Dianne]

What do people think has happened in the passage down the birth canal to make it okay to kill the foetus at one end of the birth canal but not at the other?

Two things that I think happen after passage down the birth canal that might be relevant:

1. The infant is no longer dependent on the body of a second person to survive. A fetus is, by its nature, a quasi-parasitic entity that depends on the mother for its nutrition, protection, etc. An infant is an independent entity directly dependent on no particular person. (Though, of course, a newborn must have help from someone to continue to survive.) Subpoint: after birth, care can be withdrawn by means other than abortion. One can look at abortion as simply the removal of life support systems (ie the placenta, uterus, and gestating mother.)

2. The oxygen content of the infant's blood goes up dramatically as it receives oxygen from the air directly instead of indirectly through the umbilical vein. We know that when adults go into low oxygen situations their cortexes stop functioning very rapidly so that they quickly have no usable conciousness. It seems likely that fetuses do not have concious thoughts prior to exposure to room air. The one caveat is that fetal hemoglobin is much more oxygen avid than adult Hgb, so might allow for cortical activity in a lower oxygen environment, but it seems relatively unlikely. A number of other events occur at birth, ie the closing of the ductus arteriosus (usually), alterations in blood flow, the closing of the umbilical vessels, start of the transition to adult hgb, introduction to massive amounts of new stimulus, etc, but whether any of those are fundamentally important is not immediately clear.

[dutchmarbel]

Ara: we do distinguish between acting and omission, but it is both euthanasia. The latter is called 'passive' and the other 'active' euthanatia. It still means someone is to die due to a human decision and in actual fact there sometimes is a grey area (upping morphine in the last stage of life for instance).

The rules for active euthanatia are very strict. You have to give active permission on the moment itself, so people who are dement, or in a coma, or not clear of brain, are excluded. Babies obviously cannot give that permission. Babies also cannot give permission to stop treatment - and for passive euthanitia you also have to give permission yourself.

With kids the parents can give permission to stop treatment. That doesn't actually mean that that always happen: if the doctors feel that it is in the best intrest of the kid they can decide to relieve the parents temporarily of guardianship. This is for instance what they do in order to vaccinate bible belt children against polio, after we had some devastating epidemics.

There are babies that are born so ill that they will only suffer. Deciding to prematurely end that life is a very hard decision and action will only follow if everybody agrees. The guidelines are:

* Both the child's medical team and independent doctors must agree
* there is no prospect of improvement and the pain cannot be eased
* parents give their consent
* the life must be ended in the correct medical way

[Jesurgislac]

Column in The Guardian by Polly Toynbee, in part responding to the Daily Mail's article.