The topic I was prompted to write about this week was tricky, because we all, including me, find it one that is hard to discuss; dying well, not living badly. It was the NHS Corridor Care headlines and the detail that went with them that got me here.
Don’t get me wrong, no one should be cared for in a corridor, but in reality, with declining beds decade after decade, a growing population and that population living longer but sicker, it was unavoidable.
I won’t bore you with the politics of all this but rather want to focus on the latter part of that equation. We are all living longer than when the NHS was introduced, by decades, but that life for many isn’t a good one; it is one of sickness, disability and medical intervention.
There are a few reasons for this; yes, our nutrition and sanitation have improved, fewer of us die of infectious diseases and medical interventions have enabled us to survive things that would have previously killed us and often quickly. If we can get people to hospital quickly enough when they have a heart attack, more often than not they will live where they would have died. And that’s great. If somebody gets thyroid cancer and we catch it early and cut it out, they will likely live a normal life. HIV can now be treated so that sufferers live a normal life; this is all brilliant. So where does it go wrong?
There were so many heartbreaking stories this week of people with advanced dementia sitting in a hospital corridor, bewildered, confused and scared. Why are they there? Not to treat the dementia, but usually to treat an infection or a fall (often caused by an infection). Some of them died in those corridors. Is that how they wanted to spend their last days (although this is a less important point, in my opinion)? The point is that we have lost sight of what a good death is or even that there could be one.
Too often, as a GP, I am being asked by relatives of 95-year-olds to send them to a memory clinic because they are showing signs of memory loss. I have to have a delicate and difficult conversation with the relatives about what intervention they really want us to do with someone who has outlived most people and the average life expectancy.
What does the 95-year-old really want? Or the 72-year-old who has multiple issues arising from blocked arteries, diabetes, high blood pressure and heart failure and is already bed-bound. Being shipped by hospital porters and transported back and forth to the hospital for more tests, more scans, and more surgeries to amputate the other foot so that they can lie in bed for another year with multiple antibiotics along the way to treat the inevitable infections until eventually, the antibiotics don’t work. Is that a life that you would want to live? Lots of people do, and more often than not, we, the GP, mainly speak to the nominated relative who is valiantly fighting for the next intervention.
We have lost sight of what a good death is or even that there could be one, writes Dr Renee Hoenderkamp
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I think we have forgotten that bodies age, dying is a natural part of living, some people have better genes than others, and some have led healthier lives. We have become so used to medical intervention that we have come to believe that there is always an answer to the next ailment.
The result of this is we see the elderly who have multiple ageing diseases on 10,20,30 different tablets a day, having just another round of chemo, and one more surgery when in reality their life is so medicalised that it is miserable.
I watched a man have two years of chemotherapy that destroyed his ability to enjoy life in any way whatsoever, who then died in agony, having done nothing but suffer for two years and avoid all friends and relatives for fear of catching an infection! Would it not have been better to have six months of the good life that he could have used to fulfil some life dreams: go out, see friends and die a better death? Yes, with pain relief, but not with nausea, joint pain, skin irritation and mouth ulcers of the chemo that in hindsight gave him nothing.
Atul Gawande, in his excellent book Being Mortal, describes a patient who was terminal and had one more spinal surgery that destroyed him and ultimately killed him. Would he have lived a better life and death had he turned down that last medical intervention? So how do we breach this vast chasm of what people expect, what the patient wants and what the family wants?
Well, firstly, I am going to say to the family, it’s not about what you want, not at all. So, however uncomfortable it might make you feel, however much you want, understandably, to keep your loved one with you, it’s not your decision and your feelings must not come into it, as harsh as that sounds and as hard as it is. Then, it’s important to have honest, open and regular conversations with our nearest and dearest about dying and dying well when they are mentally and physically able to have that conversation. What do they really want?
If they get dementia, how long do they want medical input to keep them alive, to treat that pneumonia that is the natural end unless treated? When do they want us to stop calling 999? So, I get back to hospital corridors and actually just hospitals.
Seventy per cent of the public want to die at home, but only 23 per cent do. Partly, this is due to the postcode lottery of good, timely and responsive palliative care, but also due in no small part to the intervention of relatives. This is why we need to open up the conversations about how and when we want to die (make no mistake, I am not advocating for assisted suicide, but I am fully supporting a managed natural death).
And there is a very good chance that most end-of-life patients in those corridors and on the wards would prefer to be at home surrounded by friends, family or even just the four walls that they know. We also need this to be a public discussion about living a healthy life in order to live a healthy old age. Bodies age, things begin to fail, joints hurt, and we are not immortal. That’s natural. Despite all of the medical advances of the last century, there appears to be a finite lifespan for a human, even those in excellent health.
Surely it would be better to live a shorter but more fulfilled and healthy, active life than to live an extra 20 years crippled by pain, infection and the resultant medical intervention that often adds to the burden of suffering and multiple medications that lead to side effects and then more medication to treat the side effects. As I end this, feeling sad, I want to be clear: I am not excusing or accepting corridor care, it just made me think about what we are doing when it comes to living a good life and death.