This is a difficult post for me to write, and there will no doubt be people out there who will be horrified at what I am about to say. But I feel that the hard questions that I shall raise have to be addressed.
In August this year, my mother went into a nursing home. She now has twenty-four hour nursing by specialists in the care of dementia sufferers. It is eyewateringly expensive. And it is being paid for entirely by my father.
This is an appalling tragedy. It is worse than a bereavement. In effect, my father has lost his wife - but he is still paying for her care.
Now, please don't misunderstand. It is not a financial tragedy. My
father reckons he can afford to pay for my mother's care for five years
without having to sell the house that he still lives in. He observed
sadly that the people who will pay are his children and grandchildren,
who will inherit far less than he had hoped. But to me, it is only right
and proper that the savings he accumulated during his working life
should be used to support him and his wife. That money is not ours until
they no longer need it - and if that means there is none left for us,
so be it. Inheritance is a privilege, not a right.
The tragedy is what this situation has done to my family. My father now faces his first Christmas alone. He will go to see my mother, of course, though I know how hard he finds it to see the ruin of the woman that he loved. I, too, will go and see her, as will other members of my family. Indeed my father and I both go and see her about every couple of weeks: but it is difficult to make myself do this, knowing that we can no longer have the sort of conversations we used to have. She was highly intelligent, incredibly well-informed, and had opinions on everything from politics to gardening. All of that is gone: she can barely speak, her memory is shot to pieces and she is unable to concentrate on anything for more than a few seconds. She is also physically disabled, for reasons that I will explain shortly. The woman that we knew and loved is no longer there. But her crippled body, and the little that is left of her mind, live on, and must be cared for.
And therein lies the conundrum. For my mother's care, and the care of elderly people like her, is a significant and growing contribution to GDP and gives employment to a lot of people. In effect, it is a transfer of wealth from the old
to the young, though not the young my parents had intended.
While my (retired) father was her full-time carer, my mother's care contributed little to GDP: but once he had to admit that caring for a disabled and confused elderly woman was beyond him, her care became an economically productive activity. Prior to that, her care had been provided firstly by my father, out of love, and secondly by the NHS, out of taxation. We have no way of measuring love in GDP, and there are those who deny that public sector activity is "productive". Yet it is the same care.
The problem is that this care is fundamentally unproductive, regardless of who does it and whether or not it is counted in GDP. My mother will never be restored to health and activity. Her carers, and her family, are managing decline. Sometimes, when I see her, her mind seems a little better, and there are flashes of the woman I once knew - but this merely raises false hope. She is never coming back.
It could be argued that keeping my mother alive at such expense is a form of the "broken window" fallacy. This sounds harsh, but to explain why I say this in relation to my own mother I need to tell the story of her decline.
My mother has a range of long-standing health issues including heart failure and renal failure. She had been getting increasingly frail physically, though until August 2013 her mind was as sharp as ever. But in August 2013 she had a fall. She broke her hip and her wrist, and was rushed into Medway Hospital. There, they pinned her hip and her wrist back together. After the operation, they put her on a morphine drip for pain relief. My brother, who saw her not long after the operation, said she was well and cheerful. So the following day, I went to see her with my then 15-year-old daughter.
When we arrived, she was unconscious and fitting. The junior doctor on duty explained that she had a morphine overdose. Apparently they had not checked her notes before giving her a morphine drip....people with renal failure cannot clear morphine from their bodies, so it gradually builds up, resulting in an overdose. They gave her medicine to counteract the morphine, of course, but it was touch and go whether she would live or die: if her heart gave out, they would not resuscitate her.
She lived......but from then on, her mind started to deteriorate. Her concentration wandered: she, who had loved to read, started to find reading too tiring. Holding a conversation with her became increasingly difficult as her mind lost focus and her speech slurred. A CT scan done by the hospital revealed that she had had a stroke, but they didn't know when. She never learned to walk again.
Once she came home, she deteriorated fast. She couldn't move around, she couldn't communicate and her sleep was terribly disordered. She needed 24-hour care: my father, who was doing most of it, became increasingly tired and grumpy. Eventually, after best part of a year, he had to admit that he couldn't cope. She was taken into hospital until a nursing home place could be found.
We do not know whether her rapid decline was due to the morphine overdose or whether it would have happened anyway. But it does raise a question.....Arguably, it would have been better for everyone if she had died in August 2013. Yet the doctors did everything in their power to keep her alive and repair the damage that they had (possibly) caused themselves. And her nurses still do.
Our ability to prolong life far outstrips our ability to improve its quality, and an increasing proportion of our economic activity must therefore go towards caring for the frail elderly. But we have not addressed the ethics of keeping people alive for extended periods of time after their minds and personalities have disintegrated. In 2008, Baroness Warnock suggested that people with dementia had a "duty to die". Her remarks were greeted with horror: yet we do need to have this discussion. For in reacting with shock and horror to the very idea of ending someone's life, we are failing to see the human tragedy of dementia.
The tragedy is not so much for the person concerned, although in the early stages many dementia sufferers are fully aware of what is happening to them and some are horrified - as my mother was in the months after her operation, though she now seems happy. But the real, enduring tragedy is for the families: husband and wife torn apart, family relationships destroyed, and yet no closure, no funeral, no ability to say good-bye to the person that they loved, because even though that person is gone the shell is still alive, and must be cared for at increasing expense. We are caught in a trap of endless grief.
I do not want to see my mother die. But it might be better for everyone if she did. I fear for my father, if her life is prolonged: five years of this, and he loses his home. Is this what she would want for him? And what if he becomes ill or frail himself, and needs care? How would he - would WE - afford both her care and his? What of the children who are dependent on us? In diverting resources to such extended elderly care, are we crippling the development of the next generation? Do we have our priorities right?
The Hippocratic Oath that doctors take says "First, do no harm". But what is meant by "harm"? Is keeping someone alive when their mind is gone and they are physically disabled "doing no harm"? Is helping someone to die when they have no prospect of being restored to physical and mental health "harmful"? I do not know. But "harm" surely goes beyond the person being treated: is the cost to their family of no consequence?
I am very aware of the possibility of abuse, which is why in this post I have raised the question of financial cost and inheritance. I suspect the majority of people would have the same view as me, namely that the correct use of savings is the care of the elderly: to dispose of an elderly person simply to ensure that his or her descendents could inherit would be an abomination. But there would no doubt be some for whom money talks. Could there be adequate safeguards against such abuse? I do not know. It is, I suspect, in large measure the reason why we have not so far faced up to the consequences of our ability to prolong life but not restore it.
What I do know is that we have to have this debate. We divert ever greater resources to prolonging life, without considering the emotional cost to families or, indeed, the opportunity cost to society as a whole. Is this what we really want?