I Lost my Mother Years Ago

‘I lost my mother years ago.’ It’s an odd thing to say about someone who is still living and breathing, but when faced with the advanced stages of dementia it can be the reality people have to live with. There is a point in the journey when communication becomes nearly impossible, the affected person stops recognising even their closest family and those who care about them really feel that the person they have loved is no longer there. Such a conclusion is understandable, but it raises all sorts of questions about the meaning of personhood in the 21st century.

The feeling of having lost someone is certainly not an uncommon experience. Ian Botham was so overwhelmed by it that he took the difficult decision to avoid visiting his father in the last 6 months of his father’s illness with dementia – fearing that his positive memories would be distorted by seeing his Dad in his final days. I can’t possibly judge Sir Ian for this decision, but I am deeply sad for him and can’t help wondering if his memories won’t be distorted anyway; our imagination has a disturbing habit of filling in the gaps in our experience.

It is interesting to me that we rarely hear someone talk of losing a relative to cancer until after their actual death. While cancer is an equally devastating illness, there is somehow something more acceptable about dying from cancer than dying from dementia – we still see the person inside the body no matter how ravaged it may be, as long as the mind is still working; in fact, even when the mind finally succumbs to cancer we seem less affected by this because it started in the body. The way Western culture places the intellect above all else must have a significant part to play here – I’m not sure the same would be true for all cultures and it would be interesting to know how dementia is treated in cultures that differ significantly in this area. Maybe stigma and fear have a large part to play also – I know that there was a time when dying from cancer was far from acceptable, when talking about cancer was taboo and a diagnosis somehow a cause of shame; this was before my time as a doctor and is so far from my experience that I can hardly imagine it, but there are echoes of the same in dementia, and I suspect these barriers will prove even harder to break down.

When have we ever heard the parents of a highly disabled child talk about losing their child while they are still alive? Through the link our practice has with a children’s hospice I talk frequently with parents whose children are no more able to communicate with their family than would a person in the late stages of dementia. There is grief and sorrow and pain for sure, but never a sense that their child is no longer a person or that only an empty shell of a body has been left alive. Of course, children are innately easy to love, but I don’t think it is a lack of love for the elderly that is at work here, or simple ageism; there seems to be something uniquely challenging about losing what we once had when it comes to our intellect.

The issue raises important questions: who am I, when I have forgotten who I am? In what way can I still be a father if I have forgotten that I have children? The cartoonist Tony Husband had to face all these questions as he watched his father die from dementia, an episode of his life that he recorded in cartoon form and which was published in full by The Daily mail. The cartoons are poignant, but not sentimental, and although the headline writers talk about dementia ‘stealing away his father’, Husband himself never describes things in this way. He simply tells the story of what happened, with both gentle humour and deep sorrow, leading to one moment right at the end of his father’s life, after any sense of meaningful communication with his Dad appeared to have gone forever, when out of the blue and in a rare moment of wakefulness, his Dad said to him: ‘Take care, son.’

Perhaps a mother can still be a mother simply because her son knows that he is her son. If our personhood is defined by whom we have loved in our lives (and there are far worse ways to ascribe meaning to our existence), then maybe it is sufficient that we are defined by those who love us, even when we have lost the capacity to show love in return. This love might even find new ways of expression: a father with dementia might be willing to hold his daughter’s hand, having previously been too inhibited to do so; a mother might come alive when the piano starts playing and sing with her children for the first time in many years; bitter memories of past wrongs may be lost alongside those memories we would rather keep, allowing the restoration of relationships as barriers are removed.

In a society that defines its members primarily on the basis of what work they do, how successful they are and how much money they earn, we should not be surprised that we lack the cultural aptitude to cope with dementia. However, if we can redefine what we mean by personhood in a way that is fully inclusive of a person with dementia, we may be more equipped to deal with this illness and perhaps all find a better way to live along the way.

Turning People into Patients

The NHS England campaign ‘The Earlier the Better’ truly baffles me. I have read through the advice to patients, and the document explaining its purpose and justification – I remain perplexed, puzzled by how on earth anyone could think this would help and by the reversal of years of public health information encompassed within its message.

The earlier the better is a seductive strapline in healthcare – and it works well for some conditions, such as meningitis or a heart attack – but it is a peculiar mantra to apply with such a blanket approach. For instance, one of the key pieces of advice this campaign delivers is that if you have a cold you should tell your family, or speak to a pharmacist before it gets worse – the earlier the better. Really? Haven’t we spent years trying to teach people that colds will get better on their own, don’t need treatment and cannot be treated anyway? How, exactly, can a pharmacist help to ‘stop it getting worse’? Sure, they can help with symptom relief for a self-limiting illness, but where is the need to urge people to go early for symptom relief? ‘Fed up with your cold, why not see a pharmacist?’ might have been a more realistic campaign slogan.

The aim of the campaign, apparently, is to reduce winter pressures on the NHS – in particular trying to prevent the elderly from ending up in hospital with respiratory illness. There is nothing a pharmacist can issue without a prescription that will prevent an elderly person developing a secondary pneumonia when they have a viral illness – so the best they can do is suggest someone sees their GP to consider antibiotics. There is a point where timely use of antibiotics might prevent a hospital admission, but even here the earlier the better is simply not true. Treat every cold in the over 65s with antibiotics and the harms of over-using such drugs will outweigh the small number of pneumonias you prevent – a health message that every cold needs prompt action is simply misleading and could be harmful.

For a long while I have been concerned that, as a nation, we have lost our nerve when it comes to assessing our own health. I am confronted by this whenever I see a child bouncing around my surgery room, afflicted by a cold but clearly not unwell, and am asked to ‘check them out, just in case’; or someone is brought to me within an hour of a minor injury or the lightest bump to the head for the same reason. I don’t mind doing this, but I wonder how we could better empower people to assess their own health and feel more confident in their ability to tell when seeing a doctor will be helpful, and when they are absolutely fine on their own. However we do this I’m quite sure that this campaign, with its emphasis on seeking advice from a health professional as soon as you feel even vaguely unwell, is not the way.

What is more, the campaign is mind-numbingly simplistic in its understanding of the causative factors leading to poor health, especially in the elderly. Take the advice on keeping warm, for instance. Of course cold weather is a significant factor in morbidity and mortality in the elderly, but are we really to believe that the major factor influencing the impact of cold weather on the elderly is that no-one has ever suggested they wrap up warm? Might not fuel poverty, social isolation, loneliness and mental health problems have a little more to do with it? And as for eating well as a way to stay healthy – do we really want to insult the over 65s by suggesting that they haven’t lived long enough to work that one out for themselves?

The problem with this campaign is that while the health advice is relatively innocuous, the message that will stick will be the strapline. People who were perfectly happy to care for themselves will see their pharmacist ‘just in case’; pharmacists, good as they are will refer some of these people to their GP ‘just in case’, and another person with a self-limiting illness will have been turned into a patient, and will go home with the belief that they needed to see a doctor, and a little less empowered to care for themselves the next time.

This post was initially published in Pulse magazine (free registration required)

The Burden of the Elderly

Baroness Warnock must have known that she was brewing up a storm when she suggested that people with dementia may have a moral ‘duty to die’ because of the burden they place on their families and the state. One wonders why she did it – not for the publicity, surely? The most compelling argument against legalised euthanasia is the concern that vulnerable elderly people will feel obliged to consider ending their own lives out of worry about being a nuisance – whatever Baroness Warnock’s motivations, it is quite chilling to see it argued in print that they would have an ethical obligation to do so.

If the criterion for ending your life is that your continued existence carries too great a price for family and state to pay for, then it is a small step to apply these principles to the young as well as the elderly. After all, the main difference between a young, severely disabled person and an elderly severely disabled person is that the younger person will require care for far longer. The argument then starts to resemble the ideology of eugenics – Europe has been there once in the last hundred years, and once is quite enough.

There is no doubt that people with advanced dementia are a burden on their families and the state – they require a lot of care and support, we would be blind to the reality of the situation to argue otherwise. The key question, though, is this: should humanity be about avoiding carrying burdens in the pursuit of individual happiness, or is our humanity both defined and enriched by the fact that we choose to carry one another’s burdens?

You only have to talk to some of those who care for a loved one with dementia to know two things: caring for someone with dementia can be tough, and many thousands of carers would tell you that it is a burden that they gladly and willingly carry for as long as it takes. We should not romanticise the role of a carer, though. For many it is too much to juggle the needs of an elderly parent with dementia with the requirement to earn a living, care for the children and still find time to eat and sleep. People need help to do this. They need a society that is willing to step up to the plate, pay its taxes and prioritise the care of the weak and vulnerable as a key measure of civilisation. We need a government that doesn’t just berate families for allowing their elderly to become isolated, but creates an environment where those of working age are more able to achieve sufficient slack in their lives to be able to care.

Ultimately it depends on whether we see the weak and the vulnerable as an annoying drain on national resources, or the very stuff that society is there for; the grit in the oyster that creates a pearl as humanity finds its purest form of expression in the care of the vulnerable; the antidote to our sanitised, celebrity-driven culture that seeks to avoid suffering at all cost, and a reminder that how we care for one another is how our society should be judged.

Quick Post – Top Tips to Prevent a Fall: A Truly Twittering Collaboration

At first glance it is easy to dismiss Twitter as being the domain of people with both too much time on their hands and hot air in their mouths, but that would be to ignore some of the fabulous collaborative work that can take place when like-minded people are connected together.

It is hard to see how anything other than Twitter could have connected an Occupational Therapist from Leeds with the Chair of the Royal College of General Practitioners in London. Even the fact that they fall either side of the great spelling divide that separates the Clares and Claires of this world, could not prevent Claire OT (@claireOT) from getting together with Clare Gerada (@clarercgo) to produce an excellent, elegantly simple guide to preventing falls in the elderly. If this issue affects you in any way, they are happy for it to be shared and it is well worth a look:

10-Top-Tips-for-Falls-Prevention

The right to choose is important, but whose choice is it?

Well, I didn’t watch Sir Terry Pratchett’s programme Choosing to die this week. I thought about it, and then, if I’m honest, I bottled it. If you missed it, the programme followed a man with motor neurone disease who went to the Swiss clinic Dignitas in order to end his life. I knew it would be emotionally draining, and I guess my tanks were a little too dry on a Monday evening to face it.

I did listen to the Today Programme on the radio on Tuesday morning, though. I’ll be up-front here before I go any further: I do not think euthanasia should be legalised in this country. There, I’ve said it – and with nearly 11 000 people registered at our practice I I’m bound to have offended someone, although I am sure we can all agree that this is an important area, and one that stirs deep passions and emotions.

As is so often the case with debates on the radio, I found myself more in sympathy with the person I should have been disagreeing with, and irritated by the advocate who was meant to be ‘on my side.’ Arguing in favour of the programme, and from a pro-choice perspective, was a gracious, empathic woman who was facing her own terminal illness with cancer. Her adversary was a right reverend someone or other who, I am afraid to say, came across as supercilious, sweepingly dismissive of there being any merit in the programme, and patronising as he tried to give his fellow interviewee wishy-washy advice concerning her own illness and future death. Hummph! Maybe I’m being unfair now too, but the exchange of comments I listened to made me deeply sad, and more than a little angry.

I did actually agree with some of what he was saying. I do believe there is something quite sacred about life, and that we are not just a jumble of chemicals, I do believe that palliative care can offer most people enormous hope and comfort even in the face of death, I do believe that there is such a thing as a good death, which can be achieved naturally, and I have seen enormous good and healing come to a family through the uncomfortable and unasked for vehicle of deep suffering. The problem is, just because I believe these things does not mean I can put my views on to someone else who does not believe them. For someone who believes we are no more than chemicals it is perfectly logical to argue that they should have the right to choose when to stop their own collection of molecules from functioning together, and to end their life. For every example of a good death, someone could find me an example where death was traumatic for all involved, and maybe controlling it through euthanasia would have made for a better death after all. It is hard to argue against such beliefs, and when you hear the story of another human being who, looking in the eyes of suffering and death and after much soul-searching, has decided they want to control the end of their life, it is hard to feel anything at all but compassion.

And so why do I remain opposed to legal euthanasia? It is all to do with choices. Society would be much easier if our choices were made in isolation, but then it would not be society. Your choice to smoke in a restaurant excludes my choice to breathe clean air when I dine out; my choice to drive as fast as I like in our streets excludes your choice to live in safety. If it were just the choice of an individual I could find no case for barring them from the right to choose to die, but this one right will affect the choices of so many others. There is the choice of family and friends who might not understand the wish of a loved one to depart – although many understand full well and approve of the decision, but some, inevitably will struggle. There is the choice of doctors and nurses, who will have to bring their own personal beliefs to play and may struggle with the ethics of getting involved – although safeguards could probably be brought in to protect professionals.

The choice I am most worried about is the choice of the elderly, the weak and the vulnerable who would not normally even consider euthanasia. If it becomes legalised then what about them? I think of an elderly patient who has died now. She was developing dementia and was worried about being a burden on her family. She never talked about euthanasia: She wasn’t afraid of her own suffering, and she didn’t want to die; she was only worried about being a burden. At the moment the law protects her from having to think about euthanasia, and so she did not need to consider it. But what if it was legal? I am worried that then she would have had a way, in her mind, of stopping her family worrying about her, and that she would have asked me about it for their sakes. Maybe a time would come when I would even be required to ask her outright, to give her all the options: It has happened in Holland. We can put safeguards in, we can make sure two doctors agree with the decision, that only certain terminal conditions are eligible, that a patient must have mental capacity – although the slippery slope here is a very real danger. What we can’t do is to stop elderly or vulnerable people considering euthanasia for all the wrong reasons – and there is an awful lot of elderly and vulnerable people out there.