Twice a week I do a ward round at our local nursing home. All of my patients there have profound dementia, and none of them recognise me from one visit to the next. Most of them are doubly incontinent and many of them are unable to communicate and are bed bound. And in that place I find the very best of human compassion and care; real, genuine dignity. I completely understand why families feel unable to care for their loved ones when they reach this stage of life and these kind of care facilities, although imperfect, are of huge value.
But, I believe we need to have an emotive conversation about advanced care planning, living wills and how to allow people to die in a compassionate way without needing to kill them. Most of my patients in this particular home have had at least one urinary tract infection and a chest infection in the last year. Our current default position as medics is to treat the infection and keep the person alive. And I want to ask some tough questions: – For what? For how long? Why? Isn’t there a difference between living and being kept alive?
Now, please hear me. I am not saying that people with dementia are worthless and we should just let them die. Indeed my lovely Nanna has vascular dementia, but she is truly happy and doing very well. I recently went to see her for a weekend. On the first night I took her out to dinner with my family. The very next day she had forgotten all about it, though she still knew who I was! I’m not suggesting that next time she gets a chest infection, we shouldn’t bother treating her. I am saying that every human life is precious, and each person should be honoured and loved. But there comes a point when we have to ask if our ability to sustain life becomes more inhumane than genuinely loving.
Although most of our patients in nursing homes have a ‘Do Not Attempt CPR’ order (because not one of them would survive such an attempt and it would be an horrific ordeal to put them, their family or staff through it), we actively keep them alive when they have an infection. It has caused me to personally reflect that I will make a living will that if I develop dementia one day, and become doubly incontinent, bed bound and unaware who my family are, I will not want to be treated with antibiotics. I would like to be kept comfortable and let the natural consequences of an infection overwhelm my immune system and allow me to die in peace.
I understand that this either takes a living will or should involve team decisions with doctors, nursing staff and where possible the family of the person or next of kin.
We are keeping literally thousands of people alive in this country every year who would be able to die peacefully, without the need for euthanasia if we took our ‘healing hands’ out of the way and allowed compassionate hands to nurse them into the grave. We have every drug we need to keep people comfortable. We have the most amazingly caring staff to treat them with dignity. Are we afraid of letting go? Are we scared of what is on the other side of death? Whatever our reasons, we have to ask if our current management of our elderly citizens with end-stage dementia is kind or compassionate or indeed sustainable.