Sunday, 14 December 2014

Broken windows, broken lives

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? 





26 comments:

  1. The economics of elderly care is horribly broken. In Nasty, Very Julian Rathbone has a character who tries to work out how he can make money out of selling thin air, and eventually settles on self-storage. With the greatest respect to geriatric nurses (and less-qualified carers), making money by running care homes isn't that far removed. I remember my sister having a long talk with my grandmother about her finances, when she was about to go into a home; my grandmother was less concerned about selling her house than she was about what would happen to the small amount of savings she'd managed to put by ("my ten hundred"). In the event she was in the home for three or four years, and in that time I should imagine they pretty much got the lot - although her ten hundred may have been below the threshold.

    My own mother had the good fortune to die less than six months after her first stroke - and I mean that in terms of quality of life as well as financially.

    Sorry to end with a theoretical nitpick, but: the reference to 'broken windows' could do with developing. I assume you're thinking Bastiat rather than James Q Wilson, but it's a bit obscure either way.

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    1. I am indeed thinking Bastiat. I had assumed that readers of this blog would be sufficiently familiar with Bastiat's "broken window fallacy" to appreciate the similarity between that and nearly killing someone with a morphine overdose then keeping her alive (though brain-damaged) at the cost of thousands of pounds a year. Her care employs a lot of people and contributes significantly to GDP, but it's not by any stretch of the imagination productive activity.

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    2. It's an apt analogy, sadly. (I don't know how many criminologists read this blog; I may be the only one whose first thought was of the odious Wilson.)

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  2. Is helping someone to die when they have no prospect of being restored to physical and mental health "harmful"?

    After my mother's second stroke - and after she'd been unconscious for a week - the doctor made it quite clear to us that he believed she was in the 'dying stage' and it wasn't his job to hold her back. I was horrified when I saw that he'd gone so far as to have her saline drip removed - and I still hate the thought of her dying thirsty - but overall I don't think he did my mother any harm; far from it.

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  3. Very moving, and you have all my sympathy. I have no easy answer to the moral dilemma you pose, but would warn that it cannot be answered in economic terms (or more generally through utilitarian or consequentialist considerations).

    This is a clear case of negligence. From the chronology you give, there is on the balance of probabilities a causal relation between the negligent care and your mother's condition.

    Your mother has been the victim of a serious legal wrong. The consequences of that wrong should not be borne by the victim's family but by the wrongdoer. Seek legal advice. Proceedings can be conducted on a contingency basis and would almost certainly be settled long before any trial. It is wholly admirable to be stoical in the situation that you find yourselves in, but this does not entail that you should have to shoulder the consequences of the actions for which others have the responsibility.

    All my best to you and your family.

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    1. They would admit negligence, but not the causal link. They already appear to have amended her medical records to cover themselves: her records now show a diagnosis of vascular dementia prior to her admission to Medway Hospital, but she had never seen a doctor, let alone a consultant, about mental deterioration. We only found out about this when my father tried to obtain some care support from his local authority. They queried the absence of any referral to a consultant regarding her mental condition and wanted to know where the care plan was. There isn't one, because there has never been a diagnosis. But proving this is a nightmare, and understandably my father doesn't want the aggravation. Medical professionals are very good at closing ranks..... I thought about blowing the whistle myself - a leak to the press from me would be taken seriously - but decided not to for his sake. But in my view there is not only negligence, but fraud. And I don't care who reads this.

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    2. The denial of the causal link is usual. My advice is still that you should go to a solicitor. This wouldn't require your father to testify in court or anything of that kind. It can be done on a contingency fee basis, they will do the work. If they conclude that the case is not worth pursuing fine, but I would not try to pre-judge that. I am not a medical expert, and know nothing more tha you have said about your mother's case.

      The pain of the circumstances in which you find yourselves in is being exacerbated by the fact that you are the victims of an injustice. The law cannot remove that but it does provide the best avenue for redress available.

      http://www.lawsociety.org.uk/support-services/accreditation/clinical-negligence/

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    3. Thanks. I shall think about it.

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  4. I'm deeply saddened to hear your story, Frances.

    Many years ago, my great aunt was in a similar position. Just before her complete death of mind, she had a crisis of faith. She'd been devoutly Orthodox her whole life, but told me she didn't believe God existed anymore.

    I was a hardline athiest at the time; I'd read the God Delusion and knew I should take this opportunity to 'save' her. But I couldn't do it. I think I told her that "God gave us the tools to solve our own problems".

    She died after a year of nursing.

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  5. A topic that I have been thinking a lot lately, and have come to similar conclusions. Thank you for your candid article.

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  6. "to dispose of an elderly person simply to ensure that his or her descendents could inherit would be an abomination."
    As soneone approaching 'elderly' status I'm not so sure. Much of my life has been dedicated to my family and children. Much of my parent's lives was dedicated to my welfare - and that includes going to war in which some never returned.
    I don't want to be kept alive if I ever sink to a state of having no enjoyment of life, I would rather my family were helped to be set up and secure with our modest family savings.

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  7. A thought-provoking article about a difficult topic. Well-written and thanks for starting the conversation. It brings to mind that documentary about euthanasia and dementia with Sir Terry Pratchett a few years back (the name escapes me). It's truly sad to see people in that state. My grandfather, while no means as extreme a case, also suffered in his last years, and it was very difficult to see someone we loved in that way. Towards the end, all he wanted was to be put out of his misery, but unfortunately, that wasn't an option. As you mention, extending life is not always the right choice, but it's the one that always seems to be made as it's the easiest one.

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  8. Hard cases may make bad laws, but they are a good starting point for solid debate. My sympathies to you and your family, Frances - this is a terrible ordeal. Anyone who has seen loved ones in similar conditions will understand how you can say things like "it would have been better for everyone if she had died in August 2013". If there is such a thing as the sanctity of life, it should not be absolute - irrespective of the quality of that life.

    It is, in a sense, a bit tragic that, if countries like the UK which limp behind the Netherlands, Belgium and Switzerland, each with quite sensible and compassionate euthanasia laws, keep on rejecting this debate, they will eventually be forced to have the debate anyway - only it will not be out of compassion with those who suffer, but because it is forced by pure economic necessity.

    Your "do no harm" point is very pertinent. While a duty to die would go to far for me - I believe people should have the right to choose, but not an obligation - tens of thousands of people are obliged to experience awful suffering, often for an indeterminate amount of time. That harm is serious suffering which is *also* not counted in the GDP. If it were, it may well outweigh the economic cost of long term care big time.

    So indeed, let's start that debate - not for economic reasons, but because we owe it to our loved ones, and to all our fellow human beings. Thanks for raising this in this robust, but sensitive manner.

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  9. Having had a good deal of experience in this field, there are no right answers only the hope that one might arrive at the least worst. It is a field in which the facts are too often less than facts, assumptions are best guesses and where the moral issues are highly complex. Watch out for the carer, all too often they become the one who needs most care.

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  10. Coming as it does from a respected financial blogger, far from being horrified, I think this is a hearteningly interesting post. The realities (the fact of personal politics) struggling behind our public “economics” (our political-economy) too rarely intrude upon abstract argument. And a paucity of public understanding and consequently productive debate is the result IMHO.

    Beyond which: I’m intrigued that you note inheritance a privilege. Is it not more a fortune of birth, more so even than ones health these days, given how schooled we are on the perils/cost of lifestyle choices?

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    1. Pro tip: if a Libertarian starts holding forth about the injustice of tax-funded welfare - whereby the fruits of hard work are confiscated and given to people who have done nothing to deserve it - ask them about inheritance tax. Nine times out of ten they won't see the connection and will tell you earnestly they don't approve of that either.

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  11. Been in a similar situation with my mother (not Alzhiemers, but unconscious) - my father wouldn't allow doctors to mark her records 'DNR' even though there was no hope of recovery outside the miracle my father believed in.

    I came to the conclusion that we wouldn't allow a pet animal to be treated this way - but even if euthanasia of some sort were legal, my father would not have permitted it. For this reason I'm determined to have a 'living will' drawn up to make my wishes clear... I don't want to be 'maintained' when there is no chance of return to a life of at least some quality.

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  12. I believe that my father-in-law will himself to go when the doctors could do no more. He did not want to live with this change in the quality of his life.

    The discussion on elderly care has been going on here and is increasing as more of our parents age. I believe that at some point there will be a choice, not for economic reasons, to ease the pain and suffering.

    I have heard of a new book in this area, Being Mortal by Atul Gawande. There is also a discussion on EconTalk http://www.econtalk.org/archives/2014/11/becky_liddicoat.html

    It is a very difficult time. I pray for God's Blessings for you and your family.

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  13. A touching post and one which I recognise, having a Mother in Law in similar circumstances. Whilst she has asked to die a couple of times having no quality of life with stroke and then early dementia, there is nothing we can do about it. All good wishes to you and yours in this harrowing conundrum.

    Peter

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  14. i dont know if i have an opinion about this yet...my own parents, 92 and 90 years of age, were moved into an extended care facility this summer by my brothers and sister, without consulting me...neither is incompetent, but my mother has had a small stroke and has some difficulty walking, and my father couldn't care for her on his own...they seem alright now, but i don't know what i'd think if they deteriorated past the point of being able to communicate..

    meanwhile, you might benefit from looking at the situation from the point of view of Sylvia Kronstadt, who has embedded herself in a dementia ward and has come to understand that those thought to be impaired were not always so....she writes about it here on her own blog: Wasting away again in our Dementiavilles, which she introduced earlier in a post at The Economic Populist: Darkness at Sunrise: A multinational corporation warehouses dementia patients for $74,000 a year , in which she tells how her own mother came to be there..

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  15. As you reflect on the policy implications, of your personal and family experience of dementia and/or clinical mistakes, you seem to recognise the apparent nonsense of treating care for others as contributing to GDP only if paid for but not when provided voluntarily, altruistically or for love.

    The need to clarify what constitutes economic performance at national level is mirrored by the need to clarify the purpose of publicly provided health care. All to often the goal of health care systems are expressed as "Saving Lives" whereas in reality it is more often about deferring death (after all lives are perishable like fruit and not frozen or immutable).

    Health economists have tried to define a measure to help in policy decisions that uses the concept of QALYS (Quality Adjusted Life Years) but as yet no one has defined any measure for Quality of Death.

    Perhaps - in time - new more comprehensive and just definitions of both GDP and Health Outcomes will be developed. In the meantime thank you for sharing your experience in such a way as to point out the current deficiencies of both.

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  16. The answer to the dilemma lies in understanding how "nurturance" works as a concept and necessity in human minds and this leads to a profound and deep emotional reluctance to take away human life:-

    http://www.wjh.harvard.edu/~kwn/Kosslyn_pdfs/2006Kosslyn_chap_in_EvCogNeuro_SocialProstheticSystems.pdf

    “Evolution is sometimes mistakenly see in terms of survival of the fittest. Such a view ignores nurturance.”

    George Lakoff. “Moral Politics” 1996. Page 134.

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  17. Excellent post, I think there will be lots out there who recognise your questions in this blog. I know I've asked them to myself on a few occasions.

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  18. A moving post about your situation and raising important questions.
    I'd like to add the question: don't we need a better measure than GDP?
    I know economic statistics can never do everything (you mention love as an example) but there's a painful disjunction coming to our nation. Many things need to be done to be a civilised nation, but the people they need to be done for don't have the money. If we fixate on GDP, said things will not be done. But the reality is, nothing much else will be done with the money either.

    (Indeed, one suspects this is a root issue with the world economy as a whole at the moment.)

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  19. as i mentioned earlier, Sylvia Kronstadt has a point of view on those suffering from dementia that's 180 degrees from yours, and she has another long post in the same vein up today...i''ll quote from it, so you see what i mean...
    Your purgatory awaits you, Cream of Wheat included: there is a massive, bloated young man in the lobby who is strapped to his semi-reclined wheelchair, and who writhes and flails constantly, his head thrown back and his eyes seeming to roll in different directions. I am told that most of his brain was destroyed in a car accident, and he has been classified as "unresponsive." As one nurse puts it, "There's nothing upstairs but drool." He has what the insiders call "blunt force dementia," she says. Even so, I don't feel right just ignoring him. So finally, I stop. I lean over and whisper, "Good morning. Do you mind if I touch you?" I put my hand on his shoulder. I think I sense a slight relaxation in him, but I'm not sure. I gently place my hand on his cheek. "Ahhhhhhh!" he cries loudly. "Ohhhhhh!" I take his hand, which is curved around in that cerebral-palsy way, and hold it. He is laughing. In my younger days, I might have been embarrassed by the spectacle I am creating, but now I don't give a damn what anyone thinks. I tousle the young man's hair and whisper into his ear, "I am sorry for you. I'll see you tomorrow." He squirms and grimaces, extending his twisted arms toward me. When I kiss his forehead, he makes the sweetest sound: A little baby's high-pitched squeal..

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    1. I read your previous link. This is more of the same. Very sentimental, and absolutely irrelevant. Of course the way in which some confused people in nursing homes are treated is a disgrace. Of course we write people with dementia off too easily. But I did not write about "people with dementia". I wrote about MY MOTHER - the woman I have known and loved for over half a century.

      The woman I knew was passionate, opinionated, could be very critical and didn't suffer fools gladly. She was always fascinating but not always easy to get along with. The woman with her name and her physical appearance who now lives contentedly in a nursing home is nothing like her. She is lovely: utterly charming, smiles at everyone, never gets upset or angry. Whatever happened to her changed her personality so completely that she is unrecognisable to anyone who knew her before.

      You have missed the point. I have lost my mother, and my father has lost his wife. This post is about a family tragedy.

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