Matters of Life and Death - not much fun and games

[Griffin NoName]

Over the last few weeks I've been watching a series on TV about Great Ormond Street Hospital which is where the sickest most complex child cases are sent from all over the country (and even internationally as well). What just screams out at me is how futile it all is for many of the babies and children. The programs looked at the ones that needed treatment at the edge of technological capability, so I suppose this reaction was not surprising. Many died, but those that were sent home, most were just a case of time until some other episode brought them back in and each time it would be worse until they die. For those that did go home, albeit temporarily in reality, they were always permanently hooked up to various machinery.

This is hard to say, but I really question the vast expenditure that these attempts to keep the children alive, often prolonging their lives for relatively short times, just because we can*. The doctors and nurses all talked about ethical decisions and quality of life and cost but in my view they are so close to the problems that they cannot judge these clearly.

My main issue is with the NHS and Social Services limiting care for the elderly, and in the case of the NHS refusal of expensive drugs for adults. I don't know the figures for QALYs (Quality of Life Years), but whatever they are I think they have them wrong. I cannot bear the fact that spending on sick adults/teenagers? and the elderly does not take priority over babies/very young children who are totally compromised. I just think we have the balance totally wrong. Yes, making a sick old person's life more bearable is not glamourous but surely they deserve it, rather than forcing tremendously expensive treatment, bringing them back from death time and again, on babies who will in the end not survive.  

*incidentally, I have the same objection to giving cancer drugs to gain an extra month or two, which is commonly done. and this opinion is real to me as it is something I have thought a lot about re. if my breast cancer recurred as secondaries. Oh yes, and I keep meaning to lodge a DNR with my GP for much the same reason

[Aggie]

I tend to agree with you, Griffin, but I don't have a child so it's easier to take an objective (?) stance on the matter.  Rationally, I think I would understand that it's better to let one's child go with grace than to mangle them with major surgery with little prospect of quality of life, but if outcomes were, for example, 30% favourable recovery and 70% marginal quality of life (and 0% survival without surgery)? Very difficult emotionally to decide, but since I occasionally buy lottery tickets, those seem like pretty good odds.

I suppose it's back to the sticking point of where do you draw the line? Who makes the decisions?  I've read of studies that indicate that parents have more grief for much longer if they are given complete responsibility for their decision (USA) vs. when they are guided by honest doctor's assessments (France).  One would think that the parents should be able to make the call, but outcomes for the family seem to be worse. 

[Swatopluk]

Cultures that believe in reincarnation are clearly in advantage there. Japan for example has traditional procedures for dealing with losses of this kind. That also makes the question of abortion far less 'loaded'. If the soul just goes back in line for the next attempt, there is no reason for holding fast against all odds. In the West on the other hand there is nearly always blame put on somebody, especially from religious people.

[Sibling DavidH]

I know a person, P, who's almost a vegetable, cannot speak, doesn't know what's going on, wheelchair bound, many other health problems.  P's facial expression constantly shows great distress, unhappiness and pain.  P has been this way since birth.  For the unhappiness alone, they should have let P die decades ago.  No question of euthanasia, just stop treating one or two conditions.  Many of the older hands involved think this way, but you have to whisper it for fear of official displeasure.

The cost of keeping P going is astronomical. I won't go into details, but these resources given to other more mildly disabled people could make a huge difference.  And so much of this money has been squandered.

Some doctor once said:

Thou shalt not kill, but needst not strive
Officiously to keep alive.

[Swatopluk]

As long as the decision is not made purely on the basis of financial means...

[Sibling DavidH]

As long as the decision is not made purely on the basis of financial means...

When you move in the world of disability, Swato, you can only hope we will always be able to make these choices without having to count the cost.  In fact, that luxurious situation is already coming to an end.

[Griffin NoName]

Actually the cost broadly mirrors the level of incapability. In any case, decisions are always made on QALY's. I think QALY's aren't adequate. An elderly person IMO requires diginity while they die, which may be long and drawn out with no quality of life. QALY tends to fail the elderly because we (society) do not pay  carer's of the elderly enough, or care homes, and their treatment is often abysmal, as can happen to disabled in care homes too. Also, I endorse what David says about better funding for the disabled who are less compromised. Partly, it seems to me, spending on tiny babies and miracle medicine (mostly surgery) is rooted in surgeon's learning from the cutting edge to save more and more badly compromised babies without questioning whether they need to learn. For example, they had a baby with a floppy windpipe, meaning it collapsed and she could not breath. So they tried out experimental methods of helping her breathe, but she had other problems which meant she would have a very short life, hooked up to machinery, and might well never be well enough to leave hospital at all. How many babiies are born with floppy windpipes? I don't know but it must be an incredibly small number. So, do doctors really need to learn how to keep them alive longer? The resolutions they were seeking would not resolve the breathing difficulties, merely stop her dying for a while. It was tragic. Another thing that came out in the program was that doctors prolong babies lives (at enormous cost) to give the parents time to assimilate that their babies are dying. Long before the actual death, it is clear to doctors that this will be the outcome but they don't tell the parents. They sort of lead up to it as certain events happen, and even after it is starkly obvious the parents are kept relatively unaware of the reality. Personally I think it is bonkers. I'd want to know right from the start, not be treated like a marshmallow, and at such enormous financial cost. Listening to the doctors pussy footing around when speaking to the parents was pretty difficult. I wanted to shout at them, for goodness sake., come clean. So who's benefit is this really for?

Aggie, I do have children. I would not want them to go through what the babies in the TV programme were put through without firm assurances they would go on to lead normal lives. No, I don't know where to draw the dividing line, but I am sure we have it drastically wrong at present. All the babies shown were never ever going to be off machines,etc etc etc. One of the things that came out in the program was that doctors make decisions on "well we have spent so much on this child already, we must not lose that, so let's continue", also bonkers IMO.

[Swatopluk]

One problem in the case of babies may also be the fear of the doctors to be held accountable for not seeming to try their utmost to 'save' the child. I think there are few that have the strength to tell parents that it is not really worth the try, especially because using utilitarian rational arguments will almost certainly backfire (not without reason given the increasingly justified suspicion that the machinery is 'needed' for more affluent patients).

[Griffin NoName]

One problem in the case of babies may also be the fear of the doctors to be held accountable for not seeming to try their utmost to 'save' the child. I think there are few that have the strength to tell parents that it is not really worth the try, especially because using utilitarian rational arguments will almost certainly backfire (not without reason given the increasingly justified suspicion that the machinery is 'needed' for more affluent patients).

On the whole I agree. But I do think doctors should be trained to be more realistic about the illness outcomes and trained to be up front with parents. If they were well trained in these areas they would have more strength to tell the parents. I wonder how many hours training go into delivering bad news, and how good that training is? If any!! As for trying their utmost, this should be based in the illness outcomes, not finances, though the finances will tend to follow the illness outcomes. Again, training is all. They need to be trained in how to demonstrate they have tried "enough". From what I know of doctor's training (and my neice is currently training), doctors get litttle or no training in "soft" issues. ie. training in this respect is not moving with the times. It needs to. In terms of the machinery, the equipment is generally baby and child sized.... so only useful for more affluent babies/children and in fact there is no private provision in the UK for sick babies/children in the category I am concerned with - they all end up at Great Ormond Street on the NHS. It's such a specialised area.

[Swatopluk]

I am looking not just on the UK. In the US I would expect 2-class medicine deliberations to be part of the decision process.
I think you rightfully hint at another aspect: The docs don't want to 'lose'. There is an ambition to beat ever stronger odds against them. They will not stop until they can save a rejected fertilized egg and grow a child out of it (only moderate hyperbole). And I do not mean that most of them consciously do it for selfish reasons. More a case of a good thing overdone.

[Griffin NoName]

I am looking not just on the UK. In the US I would expect 2-class medicine deliberations to be part of the decision process.

Ah right. Yes.

I think the way our Public and Private Health services are set up, even with the new changes which hang over us like the Sword of Damacles, the treatment of complex multiple illness babies will remain with the NHS. I doubt if there will be enough profit in them for the private sector. Anything complicated always gets shoved onto the NHS. Of course, the NHS is really being privatised, but (supposedly) still free at the point of service.

I think you rightfully hint at another aspect: The docs don't want to 'lose'. There is an ambition to beat ever stronger odds against them. They will not stop until they can save a rejected fertilized egg and grow a child out of it (only moderate hyperbole). And I do not mean that most of them consciously do it for selfish reasons. More a case of a good thing overdone.

More of the God Delusion

[Swatopluk]

Over here doctors are known as demigods in white (Halbgötter in Weiß).

[Griffin NoName]

What would be the implication if they dressed in a different colour?

[Swatopluk]

I think they changed to that after they learned not to pour too much blood on their garments. Not to forget the invention of effective stain removers. Not sure why surgeons wear green in the operating room, maybe to give the eyes more rest.

[Sibling Zono (anon1mat0)]

I don't like the distinction between 'babies', 'adults' and 'elderly', that is, the same rules should apply in all cases both morally and practically. The general questions of life expectancy after treatment vs before, and quality of life before and after apply.

Cost is a very disagreeable factor, if I'm reasonably healthy I don't want resources going disproportionately to very few cases, but what are the chances that any of us is going to be one of those few cases one day? Fairness is fairness regardless of age, income, or genetic luck I would think.

Swato already mentioned the 'god complex' as a factor, but I would go further: perhaps a particularly specialized treatment of a baby in cases that happen in < 0.00001% of the population seems like a waist today, but certainly the knowledge gained is likely going to improve more patients in the future. We may never know when and how but knowledge is only gained that way, and if the general attitude of physicians were that it is impossible to save someone in this or that case, most diseases wouldn't have treatments today. We may be here today because the physicians of the past two centuries figured out how to save those that couldn't be saved before.

Lastly, the emotional factor is easy to underestimate until it hits us directly. How many parents will take easily the news that their baby is very likely to die because of XYZ condition? Now an adult wouldn't fight to find answers if his/her life was on the line? Remember how Chatty learned as much as she could about her condition? And how when the treatment that could possibly extend her life was denied?

Frankly I don't want to judge that quickly if there is a reason to spend X amount of funds in Y facility because even if I personally am not benefiting from their work perhaps society as a whole is, even if it's not in my life time.