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 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 … ?