Death is not a solution for dementia.
This week I’ve been asked to take part in an online discussion with the RSA about assisted dying. It’s in the light of the legislation that is being debated in the Scottish parliament right now.
I am very careful what I say about this because I once said in the public domain that governments might find it useful if older people died quicker, and it was reported as if I was recommending a cull of older people. For the avoidance of doubt, my words were reported out of context. I was trying say that the governments have failed to make preparation for the predictable aging of the population. They’ve not prepared for our health and social care needs. If we are ill or frail, we lie about in hospital waiting for care packages. They don’t know what to do with us. They would be better off without us, in one sense. Unfortunately, Age Scotland came out what appeared to me to be habitual torpor and started shouting in the media that I’d frightened old people. Shouting at me instead of shouting at the enemies of old people seems a bit silly. I’ve been awarded achievement awards for caring about older people and have a positive reputation in this area which is more than the excitable people in their press department have got. Four years on I still get hostile mail from people who believed the media who picked up their line from Age Scotland. I have the advantage of freedom from following anyone’s line and I can criticise the government as much as I like without posing any threat to my income. But I digress.
Debate about assisted dying
“I am very careful what I say about this because I once said in the public domain that governments might find it useful if older people died quicker, and it was reported as if I was recommending a cull of older people. For the avoidance of doubt, my words were reported out of context.”
Let’s return to this debate about assisted dying. I think it’s a dangerous idea in respect of dementia, even though I understand why people with MND feel they need it. I fear that many older people given the choice will choose assisted dying to get out of the unplanned mess that is the current health and social care crisis. This will not be the ultra-high net worth people who can buy their way out. It won’t be the low-income people who have a lower percentage chance of reaching old age in any case. It will be the dilemma of the middle affluent. These are the people who say they worked all their lives to buy a house and build up a nest egg to leave to their children, but who are going to have to spend it on their own care in the last few years of life. Suggesting that having a long-term illness like dementia opens the door to assisted dying is opening a terrible dangerous temptation right in front of us.
About thirty-five years ago I took part in a BBC radio programme where I was talking to an older lady in a care home in the south of England. It even got picked on the “Pick of the Week” radio roundup. The BBC found her and asked me to go and talk to her because I worked as the Ethics adviser for the RCN. The RCN nurse members had just voted at their Congress against the legalisation of assisted dying. Let’s call the lady Agnes. I took Agnes a bunch of flowers when I went to see her in her care home. Agnes was a widow, who lived alone with her 40-year-old son, Bill. She described him as being a bit useless, which sounds unkind, and she explained that he’d never been able to keep a job. She said he didn’t have a learning disability or anything, but Bill somehow was not able to cope. With the benefit of hindsight, I wonder if he had high functioning autism, which we didn’t talk about in those days.
Anyway, poor old Bill. He had his mother’s house to live in and his benefits. If Agnes was going to a care home, she’d have to sell the house from under him to pay for it. She had a good idea of where he’d end up without that security and she wanted to die quick and leave her house and money to him, to keep him safe after she’d gone. It was an earth-shattering conversation for me as I realised, indeed, she needed to die to keep him safe. Any mother would die to keep their child safe.
The economic burden of dementia
The cost of paying for your care at home or living in a care home has not decreased in the ensuing decades. Many families are facing the shock that expected inheritance is not coming their way now but going to pay for care. They kind of assumed that their parents were going to get free cradle to grave care. And the parents kind of assumed that they’d have something to leave the children and grandchildren. The economic burden of dementia in this country is more than the cost of cancer, heart disease and stroke put together. The financial and health damage it does to family carers is almost immeasurable. Are you telling me that if assisted dying was available that statistic would be ignored? Even debating it will be putting the idea in someone’s head.
What has happened in other countries? Well in a famous case in the Netherlands a woman Mrs A made an advance directive that when her dementia got so bad that she couldn’t say it any more, she’d like to have euthanasia (a different thing, but related). When the day came, her family had to hold her down to have it administered because in her “confused” state of dementia she wanted to live. Do you give her what she wants, or what she used to say she thought she would want? The logical way to avoid that is to get assisted dying before you are really bad, but that of course means missing out a good bit of your life. Sometimes the person with dementia is carefree and enjoying the bucket list for a while. It’s not all dreadful at first, and to kill yourself while things are OK, in case you resist being killed in an imagined future that you currently don’t value is a bit of a thought. In another point, in the discussion about the suffering of the dying, I wanted more comment on the effect for the rest of their life on the the nurses, doctors and family members who have done and will be doing this kind of work.
In another recent RSA debate I heard a geriatrician saying that in countries where the legislation allows this the care of older people has actually improved. I find that hard to believe. Especially as the care village that he named as the exemplar of Netherlands excellence has a few question marks hanging over it, not least due to questions of affordability. I don’t share his confidence.
I look forward to the debate. A good result would be if the new legislation which some people think is now inevitable, had an exclusion clause for dementia. If nothing else, that would bring more clearly into the public domain the truth that the financial burden of this disease falls on the family, not the state, and they’d often rather not pay. But someone needs to. I think I’ll suggest this to the politicians involved. Because from what I can see, the Alzheimer Scotland and Age Scotland people didn’t respond to the public consultation. Hmmm.
