The Greatest Taboo

Death and ageing are often described as the remaining taboos of our age – twin foes that we will do everything in our power to escape while knowing that they must surely come to us in the end. The current debate on assisted dying, however, leads me to believe there is an even greater taboo that troubles us in our modern, technological world – the question of suffering.

Suffering has defined much of human history, but it is only in the last hundred years that we have made significant inroads into finding ways to tackle it; with the advent of innovations such as vaccination; antibiotics; safe, anaesthetised surgery and effective pain relief, we have made great strides in the relief or prevention of suffering. In so reducing our regular encounters with this old enemy, however, I wonder if we are now less equipped to cope with it when we see it face to face.

Theologians, writers and poets all have a great deal to say about suffering. As Shelley put it:

Most wretched men
Are cradled into poetry by wrong:
They learn in suffering what they teach in song.

In her commentary on the assisted dying debate back in Iona Heath reminds us of the words of the French author Emmanuel Carrère who said:

As a rule…one must live lucidly, experiencing everything that happens, even suffering.

Not all are so romantic. Somerset Maugham, for instance laments:

It is not true that suffering ennobles the character; happiness does that sometimes, but suffering, for the most part, makes men petty and vindictive.

Whatever their conclusions, however, at least these writers have something to say about suffering – something that I fear we have lost the ability to do in modern healthcare. Everything we do in medicine is about the relief of suffering – and rightly so, we should be doing all we can to both prevent and relieve the suffering we encounter; but where we cannot achieve relief, we also seem to lack the narrative to help our patients come to terms with their situation. The inability to deal with the cause of suffering is seen as failure, often responded to with ever more desperate technological attempts to tackle the problem; another tablet that just might work, more chemotherapy, further surgery – the promise of relief preventing any real admission that medicine has run out of answers. As Heath puts it, medicine all too often offers ‘a technological solution to an existential problem.’

That there are calls for assisted dying to be legalised is certainly evidence that the fear of death can be outweighed by the greater fear of suffering. Some argue that palliative medicine is so developed that all suffering in terminal care can be relieved, but while such care can indeed be excellent, this seems arrogant and insulting to those who continue to suffer despite doctors’ best efforts. Not all suffering is related to bodily symptoms – mental anguish and fear can be just as hard to bear, and medicine rarely has the answers to the less physiological burdens we have to carry.

As doctors we have a rich language to call on for the relief of suffering: diagnose; treat; control; palliate; cure and so on, but where is our vocabulary for the suffering which we cannot resolve? Words like endure and persevere are not medical words, and you will rarely hear doctors use them – to tell someone they must simply put up with their distress seems uncaring, and leaves the doctor’s inadequacies too exposed; we would rather skirt around the issue and talk about more treatment. Is it any wonder, then, that some people ask for the ultimate treatment for the relief of suffering – assisted dying?

To hear the plight of someone who wants to choose assisted dying and not to be moved is to have a heart of stone; it is entirely understandable. Yet I have also seen the very best of what it means to be human arise directly from the pit of suffering: remarkable courage; relationships restored as years of unresolved bitterness are finally forced to a head, leading to resolution and forgiveness; great acts of love, sacrifice and kindness. Not all is rosy, of course, and at times illness will only unearth the mire hidden just below the surface, but this is the stuff of life with both its joys and its messiness.

I would like to help my patient’s journey through the suffering they have to endure rather than give them drugs to find a permanent way of escaping it. Do I have the right to tell my patients how much they should suffer? Of course not. Have I suffered enough in my own life to even know what I am talking about? No, I have witnessed a great deal of suffering, but personally only been subject to it in small measures thus far, if someone says therefore I have not earned the right to talk about this then I will not quarrel with them. Do I think suffering is ever justifiable on the grounds that good will come out of it? Certainly not, and I will continue to spend my days trying to relieve it. But I am constantly surprised by the great beauty that can arise from suffering, and I can’t help thinking that if assisted dying becomes legal and routine in this country then we will lose some of our humanity in the process.

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 – Locked in to a body, or locked in to a system?

Quick PostThe moving case of Tony Nicklinson was reported in the news this week. He has Locked-in Syndrome, and is paralysed from the neck down, unable to speak and fully dependent on care for all his needs – but mentally alert and able to communicate eloquently, if painfully slowly, by blinking. He has asked the courts for the right to die, something he cannot do for himself.

What was fascinating to me was the fact that he wants to have this right – but does not want to use it yet. This is a powerful testimony to the remarkable strength of the human spirit. I remain deeply concerned about the effects on our society should euthanasia be legalised, but I have to concede that maybe, for Tony Nicklinson, the reality of being locked-in to his body is easier to bear than the hopelessness he feels by having no control over his destiny.

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.