How to decide a moral dilemma

I was at a Gresham Lecture yesterday, To Die or not to Die (whether ’tis nobler in the mind to suffer the slung arrows of outrageous fortune, or to take arms against a sea of troubles…). The speaker was Sir Allan Ward a judge with a 60 year career behind him who is now retired with time to give interesting talks.

He started by saying how awful the death penalty is and described two of the prisoners he had met in South Africa who had completely crumpled and been destroyed just by the sentence, even before the actual execution. This was moving, but also, in the UK, safely dated, we have gotten rid of the death penalty now because we all agree it’s bad. This was the jumping off point though, he had thought he would never have to deal with life and death issues again, but they do still exist.

The first story was about a 16 year old Jehova’s witness, who, with his parents, didn’t want a life saving blood transfusion as part of his treatment for leukaemia. The doctors did want him to have the life saving blood transfusion so the case came to court. In some ways it seems like a no-brainer to say of course the child should be ‘forced’ to have the blood transfusion, However, Sir Allan went to visit the boy in hospital, made sure the 16 year old understood the risks and issues, and discussed and listened for some hours. He also wanted to make sure that if he judged  that the child should have the treatment, the boy would accept the judgement and not try ripping the tubes out. Indeed he argued that because the decision had come to him, the judge, this was the heavenly equivalent of a sick note that he could hand over to St Peter at the pearly gates to excuse his sin (I’ve deliberately left the quote marks off there). So when he left the hospital and wrote up the brief on Friday night, the appeals court were all ready and set for the appeal. But there wasn’t one. The family’s solicitor, himself a Jehovah’s Witness, said they had planned to appeal because they had thought their opinion would be dismissed, but when their views and values were taken seriously and listened to, even if ultimately the judge didn’t agree, they were satisfied.

However, there was a sober epilogue. The leukaemia returned 10 years later, and as an adult he refused a transfusion and did die. So the judgement gave him a decade, but ultimately didn’t save him. It seems to me that the boy might have felt that an external court could override him as a child, but as an adult man, his path was clearly to stick with the tenets of his religion.

The second story was the longest and concerned conjoined twins. The parents came from a small village in Malta which has an agreement with the NHS that their complex cases can come here for treatment. You probably heard about it at the time, the twins were Jodie and Mary (not their real names).

The twins were joined up around their tummies with their legs sort of stuck out at the sides and grown all wrong, it did look quite bad. Indeed, very understandably, it took the mother days to be able to be in the same room with them and  to touch them.

Jodie was well but Mary was brain damaged. Jodie’s heart was beating for Mary which doctors suggested was equivalent to her little baby heart pumping blood round a 10 foot tall person. The doctors thought they could save Jodie and carry out complex surgery to give her a healthy normal body. Mary would have to die. I did think this moral dilemma was somewhat reduced by the possibility that Jodies heart could fail under the double strain and they could both die. It seems then it’s choice of saving one instead of none. However, in this or another case it might be that Jodies heart would  grow strong and they could both live, though with a limited quality of life and being bed bound.

So the parents thought they should wait things out and if the babies died that was God’s will, while the doctors were sure they could save Jodie. A very cynical person might wonder if some parents might prefer a dead child to a severely handicapped child and might wonder if this influenced the parent’s feeling that Mary should not be sacrificed (though the doctors were confident Jodie would be healthy, the parents were not so sure).

So it came to court. Three days in Sir Allan raised a further point: if the doctors take up a scalpel to separate the twins and save Jody, but knowingly kill Mary, is that murder?

This could have been argued very differently a century ago. Murder involves killing a ‘rational human’ i.e. I guess killing animals is ok. So was Mary a rational human? Her brain damage would, a century ago, have disqualified her as a ‘monstrous birth’. Perhaps it might then have been perfectly ok to let her go quietly, and maybe even to help her along. Nowadays it was quickly agreed that Mary’s brain damage didn’t apply and she definitely counted as a rational human.

So having described this much, I’d like to stop discussing the actual case, take a step back, and say, I think it’s quite right for the state, for the taxpayer, indirectly for us, to take this time and effort and money to discuss these cases and go into the issues. For example, far better to get into the issues of whether the operation is murder or not before hand, so you can figure it out without any doctor having to sit in the dock and wonder if he will wind up in prison (in the end they decided that because Mary was such a drain on Jodie, and could kill her, it was ‘self defence’ for Jody to be separated and the doctors were acting as a proxy for Jody’s self defence). And after all, if the taxpayer spends a fortune in wages, you do get 20-40% of that right back.

Michael Sandal argued at the end of one of his books on ethics, that when you have a knotty, thorny ethical dilemma, perhaps the exact decision you reach is not the most important thing. The whole point of a difficult choice is that there are arguments either way and that perhaps the most important thing is to honour the difficulty with thought, attention, time and effort. You must think carefully every which way, but ultimately there might not be a clearly right or wrong answer. He illustrated this with two men who each had  brother who had committed murder and might do so again. Ultimately one man dobbed his brother in, while the other refused to do so. In the end you could agree with both men.

However, Sir Allan argued this was not exactly the case for Jody and Mary. The question was not what was moral, the question was, what was legal. And he raised this again in a question at the end. Currently assisting suicide is illegal so if someone brings their wife to a Dignitas clinic in Switzerland, this is illegal, even if we all agree the law needs to be changed (and clearly we don’t all agree otherwise we would change it).

I did wonder about all the cases we never hear about because the parents and doctors agree. If the doctors had just gone ahead without any court cases, would they maybe have been up for possible murder (even if Mary’s death turned out to be indirect self defence) or would nobody have thought to raise the issue?

The difference between law and morals also comes out very well in this paper: No Child Left Alone, about mothers and father who leave their children alone. Surprisingly, it is actually readable, even though it’s science! But don’t worry, no children where harmed in the making of this science. The children were only left alone in scenarios that were read and graded by amazon Mechanical Turk (what a brilliant way to get research subjects). The authors, Ashley Thomas et al., conclude that in the US today there is a new moral code and it’s totally immoral to take your eyes off your child for even five minutes, even when the risk of kidnapping/murder is around 0.0007% or 1/1.4 million a year (fairly low) and that when police were called out to bring two lone children home, the kids were more at risk being driven in the car than they had been walking home alone (with the permission of their parents). This even comes up in Patrick Ness’s new novel More Than This. Two brothers are left home alone for a short time, in those few minutes an escaped prisoner pops by and something terrible happens to the younger brother. The parents then spend the next 10 years blaming the older brother, who was eight at the time. The older brother discusses it twice, and both friends are assure him he was not at fault (obviously) but they are entirely happy to throw all the blame on the mother while ignoring the actual person who committed the terrible crime. That was a bit annoying.

The last author of no Child Left Alone, Barbara Sarnecka, concluded that their findings “should caution those who make and enforce the law to distinguish evidence-based and rational assessments of risk to children from intuitive moral judgments about parents — and to avoid investing the latter with the force of law.”  So leaving your children alone in sensible circumstances (not neglect) is now immoral, but should not be made illegal.

Phew that was a lot of thought from one lecture. I’m looking forward to more of these.

1 year cancer survival: is your cancer more important than your hospital?

Nowadays quite a few health statistics are published online. Here I’ve got some graphs on some cancer stats published this year. The stats take a while to collect so we are only just onto the 2014 data (in the perfect world hospitals would submit a months stats the next month so the annual data could be published by the end of February. We are not living in that world yet. Also we wouldn’t get sick in the first place in that world, which is why it would be so easy to submit the stats).

This set of stats is pretty detailed, it lists the number of patients with each of the ‘big 13’ cancers, at  stages 1, 2, 3, 4 or unknown for each CGG  (clinical commissioning group) in England. Stage 1 is early and good, stage 4 is late and bad. The 1 year survival for the ‘big three’ (breast, bowel and lung) has also been published for each CCG (the % of patients diagnosed in 2013 who were still alive at the end of 2014). It’s interesting to compare these two dimensions by graphing early stage of diagnosis (by adding up all the patients diagnosed in 2013 and 2014, except three cancers are new with only one year of data) against 1 year survival for each cancer for each CCG.

compare-early-diagnosis-with-1-year-survival

I find it pretty interesting that three such distinct clusters just fall out of the data.

In the bottom left is lung cancer. This unfortunately has very bad early diagnosis with only 14-37% of patients diagnosed with stage 1 or 2 and equally bad 1 year survival. Of all the patients diagnosed in 2013 only 24-47% where alive at the end of 2014, depending on where in England they were.

Colorectal is intermediate, 30-57% of patients are diagnosed at stage 1 or 2 and 68-85% were still alive at the end of 2014.

Breast is best with 72-96% of patients are diagnosed at stage 1 or 2 and 93-97% were still alive at the end of 2014.

I think it’s interesting because the variation across the two dimensions for all the CCGs (each dot in each group) is smaller than the variation between the different cancers (the space between the groups). So which cancer you get will affect you more than any variation that exists around the country. Bear in mind that differences between CCGs, might be due to something about diagnosis/treatment OR they might be due something about the population. Deprivation definitely plays a role, for example deprived areas have a much lower screening, which will reduce early diagnosis. So do the graphs show variation in treatment or variation in populations? This isn’t exactly about lifestyle factors. If you smoke a lot, your odds of getting lung cancer are higher, but what determines whether you are diagnosed at stage 1 or 4? What determines how long you have after that diagnosis?

While we can’t do a similar graph for any other cancers, as 1 year survival is only published for ‘all’ and ‘the big three’, we can look at early diagnosis for the next ten most common cancers.

The same data is shown two ways. The first graph on the left shows the early diagnosis for each cancer lined up by CCG. The second shows each cancer lined up by percentage.

early-diagnosis-2013-14

Looking at the first graph you can see that there isn’t much of a pattern, a CCG that has early diagnosis in one cancer has late diagnosis of another. Even if you can’t see that by eye, when you measure the correlations the surprising thing is that virtually nothing correlates with anything else. Of all of the 10 cancers shown, early diagnosis in one cancer in one place doesn’t predict early or late diagnosis in any other cancer (there are a few weak, correlations, but we can round that down to ‘nothing’). The next thing, shown more clearly in the second graph where each cancer is lined up in size order, is that while there is quite a range in the percentage of patients diagnosed early each cancer still has it’s own pattern. Melanoma is best then I’ve listed them in early diagnosis order on the graph.

Lots of things go into early diagnosis. Obviously it’s easier to spot stuff happening to your skin than to an organ buried in a bony cage, which is why melanoma is top of the list for early diagnosis and lung is near the bottom (though not in the same graph). So part of it will be your whether or not you have symptoms, then spotting those symptoms, going in to the GP, or screening to catch things before they start to produce symptoms…

Coming up to the end of the blog post, I’d like to close on the answer to all this variation, ideally with a few simple bullet points that would totally fix the problem. But unfortunately I’m all out of simple answers today (get changes in your body checked out? watch out for random bleeding? spend more money on the NHS?) It’s not that I don’t believe in simple answers, I just don’t have one here. Still if I haven’t got any good answers, hopefully it’s at least a good question.

Fancy meeting you here

It’s quite fun when two completely random books you’re reading happen to match up perfectly.

I’ve slowly been reading Edward Tufts’ Envisioning Information. One of the infographics describes “The slow, costly death of Mrs K”. (I wouldn’t have thought it was an infographic as it is also a wall of text).

The Slow, Costly Death of Mrs K__ ICUpsych

The case is described in Clinical Bioethics,  she lies in intensive care, being poked and prodded, so she can lie in comatose suffering for a month never recovering and so far as I can see, with no hope of recovering. None of those treatments prolonged her life meaningfully, or gave her a better death, however she might have defined that.

And this is half of what Atul Gawande’s book, Being Mortal is all about (because the ‘some doctors questioning the practice’ in 1984 evidently didn’t have much influence. Hopefully writing a best selling book questioning the practice will have more luck).

The first half is elderly care, equally fascinating, and very current for our aging populations. However it was the end of life care that I found most fascinating.

Atul highlights the difference good end of life care can make comparing two cancer patients and also his own Dad who had cancer, and how important it is to ask the patient the difficult questions and make it clear if they are up against a rock and a hard place. Not a rock and a cure.

He compares the two surgeons who advised his Dad on the rare spinal tumour that was squashing his spine and causing pain and paralysis. One surgeon advised instant action because he could be paralysed any minute and the surgery could cure him. The other surgeon pointed out that the surgery could equally maim or kill him and that these cancers usually grow quite slowly so he should hold out until the current pain and paralysis was intolerable enough that the risks of the surgery became more acceptable.  And the tumour was slow growing and Dr Gawande had two or three years of good life and good work (very important to him) before the surgery. In hindsight the operation went well and he had some more years after that, but that could never have been guaranteed.

Atul also told the story of two cancer patients, and how hospice care, provided in addition to normal cancer care, can actually prolong life (shown to be the case in the US). Part of the benefit was that the palliative care team could train the patient and their family in simple medical procedures so when the inevitable next step came along, they were prepared, knew what to do, had the medication to hand, and could cope. When the second patient became very breathless, without the hospice care they didn’t have oxygen at home, or the training in what to do, so they rushed into hospital where she was put her on as many machines as possible, leaving it to the family to decide when it was time to unplug her and denying her the the death at home she had wished for.

Atul also describes two such home deaths, of his father and of a patient, where, by fully understanding her wishes, he had carried out a much smaller scale surgery than he might normally have done so she was well enough to go home.

In order to fully understand the patients wishes you need to ask the right questions and Atul spelled out what he learnt (here it is in checklist form).

When you want to open up the conversation say: “I’m worried”. Then ask at each stage

  • “What is your understanding of the situation and it’s potential outcomes?
  • What are your fears and what are your hopes?
  • What are the trade-offs you are willing to make and not willing to make?
  • And what is the course of action that best serves this understanding?”

Sitting here writing/reading a blog you can see that these are incredibly easy questions to write down/read out. Applying them in real life probably takes a bit more practice. Indeed Atul was inspired to make the effort after remembering some pretty gruesome ‘wrong’ decisions made by patients who might have mistakenly thought the huge surgery would ‘save’ them rather than ‘give them back bladder control for the last few weeks of life’.

In Almodovar’s All about my Mother we see the Spanish doctors go through quite a lot of training on how to ask family to donate the organs of their loved ones. The people playing the family members think up lots of difficult, and racist, questions to train the doctors.

These are also questions any family member can ask. One story concerned someone who, despite working in this field nearly couldn’t have this conversation with her own Dad. On the way home she realised her mistake and went back to ask him, ‘what is the most important thing for you now’. He replied that as long as he could watch sport on telly and eat ice-cream, life still had meaning for him. When he was in the middle of surgery and the doctor asked the daughter what they should do, she know what the criteria were. If it goes wrong will he still be able to watch telly and eat ice-cream … ?