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.

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.

Organs by Passport

Some cases stick with you over the years. I remember a young woman who was left fighting for her life as a result of viral myocarditis. That someone previously fit and in the prime of her life could be struck down with such speed was a shock to this (then) fresh-faced young doctor; how her family coped with the awful truth that a heart transplant was the only way to save her, I will never know.

Imagine the same case happening in 2014. Intensive care, a young life, tubes, lines, drugs – 21st century medicine doing its best and running out of options. The difference is that the young woman in question is here on holiday, lives outside the EU, and Jeremy Hunt’s proposal to clamp down on ‘health tourism’ has found its way onto the statute books. The rules have changed for organ transplants – those without a right to remain in the country are excluded. A heart transplant is her only hope – but she is deemed unworthy, a health tourist who came to these shores to exploit our free health service. She should have known that she would develop viral myocarditis while on holiday and stayed in her own country where she had a right to care.

By a strange coincidence the young man who lies in the bed next to her is also here on holiday, and from the same country. Like his fellow country-woman, he had no idea of the tragedy that awaited him – he never saw the car coming, the resident-with-the-right-to-remain who was driving too fast. His family is in a side room, having that conversation – being told the news that his brain is dead and beyond any hope of repair, only his healthy, vibrant organs remain; would they like to consider organ donation?

 

This article was originally published in Pulse GP magazine (free registration required).

Is the Tide Turning in the End-of-Life Care Debate?

In response to my article on the Liverpool Care Pathway published in The Guardian on Tuesday, I received the following message on Twitter:

Your article on the LCP was wonderful. Needed that, have been called a murderer, angel of death, Beverley Allitt today

The message was from a Staff Nurse who works on a cancer ward. Within those deeply upsetting 140 characters is the reason I felt such a stong need to write the article, and why I am so grateful to The Guardian for publishing it. Her words are shocking enough, but what would make them truly tragic is if she, and hundreds of nurses like her on receiving such abuse, look at their slim pay packets at the end of the month and start to wonder if it’s all worth it.

I have never known such anger among health professionals as has been created by the aggressive media attack on end-of-life care. At last doctors have started to find their voice in the last week, and started fighting back. On Sunday, Max Pemberton – resident medical columnist at The Telegraph – painted a picture of the future where doctors and nurses will be frightened to take an active part in a person’s death, and of the increase in suffering that would be the inevitable consequence:

I know what the repercussions of the recent media frenzy will be and, frankly, I dread them.

The wonderful Kate Granger, who as a terminally ill cancer patient and doctor who has cared for many patients as they are dying must surely have more right to have her voice heard than most, wrote a moving blog on the subject the same day. Kate knows that she is on her GP’s ‘End of Life Care Register’, and is glad of it. She is clear about what she wants for her future:

When my time comes I really hope my care will follow the standardised LCP approach. I fully believe it improves care at the very end of life and results in more ‘good deaths’ with comfortable patients not undergoing futile painful interventions and well-informed, emotionally supported relatives, making the grieving process that little bit easier.

And on Tuesday, Dr Bee Wee, President for the Association of Palliative Medicine of Great Britain and Ireland, published a very measured analysis of the situation in The Spectator:

This is a good opportunity to step back and look at the care we provide for dying patients, without necessarily defending or attacking the LCP, which is only part of the bigger picture of end of life care.

She is right, of course. The medical profession does need to learn from where the LCP has not been properly implemented, and poor communication with patients and relatives should not be allowed to continue. I am not starry-eyed about my profession – I know that there are doctors who communicate poorly, and others who seem not to care. I also know that the time pressures that come from being over-stretched on hospital wards can put even the most caring doctors and nurses to the test, and that ‘compassion fatigue’ is something encountered with sufficient frequency to be a familiar foe. However, I will not concede that doctors are out to murder their patients, or that young men and women go into a career in nursing in order to cause harm.

The stakes are high in this debate. The attack on doctors and nurses has been directed at both the good and the bad, and the collateral damage will have a profound effect on morale. Trust between doctors and their patients is being seriously undermined, and there is a very great danger that we will throw away many of the great strides forward that have been made in palliative care in this country, to the detriment of the patients of the future. If the tide has turned in the last week towards a more balanced debate in the press this is greatly to be welcomed. We can only hope that it is not too late, and that the politicians and policy-makers are still listening.

End of Life Care Pathway – Giving the Time to Choose What Matters

The Daily Mail reporter Steve Doughty has written no fewer than 8 articles since the beginning of October attacking End of Life Care planning and the Liverpool Care Pathway. Two of the more inflammatory examples can be found here and here, and the latest post has been published today.

Karen Jones has written this Guest Post as a response to those articles. Karen is one of the GPs at Binscombe and is the lead in the practice for Palliative Care. She also works for The Beacon Centre as a GP with a Special Interest in Palliative Care, and was the lead GP when we started working with Christopher’s Children’s Hospice, part of Shooting Star Chase.

Here is her post:

We are always told that there are only two certainties in life: Dying and paying tax. Nowadays, the latter seems to be a matter of contention, but we are certainly all going to die. It was with great sadness that I read the recent articles on the End of Life Care Pathway – as doctors, once again, were slated for trying to do the right thing. This is not a new initiative. The Gold Standards Framework has been used by GPs as a framework to identify and improve the care of patients for several years now. It has been, I would say, revolutionary in the way we approach and manage the care of our dying patients in terms of planning and co-ordination.

I have often thought ‘what constitutes a good death?’ For me personally I would like time to say goodbye to my loved ones; I would want to have my affairs in order and feel that I had prepared my husband and children for life without me. I would prefer to be at home at the end but know that sometimes this is not achievable, and I would definitely want my symptoms to be as well controlled as possible, by a knowledgeable and caring team who had time for me and my carers. A tall ask I know, but I think this is what we should all want for ourselves and our relatives, and it is what, as a health team, we try to deliver. We can’t always achieve this but we should aim for high standards.

So how is this achievable? Well, really by preparation – and this is the point of End of Life Care registers. It is only by trying to identify patients who seem to be approaching the last year of their lives that doctors and other members of the team can start to explore peoples’ wishes. We, of course, cannot predict precisely when people are going to die, but only a few of the deaths in our practice are completely unexpected. We know that a quarter of the deaths each year are from cancer. The rest are usually in frail elderly patients or people with long term conditions who have been slowly getting worse. These people, I think, get a raw deal because of the variable nature and progress of their conditions. We are often anxious about initiating discussions about end of life care in case we upset them. The End of Life care register is a way to highlight these patients and encourage us to do this. And yes we do need to be sensitive and have excellent communication skills and it can be very daunting for us, but we all need to start trying to talk about death so that we can express our wishes. We are not talking about withdrawing ‘life saving’ treatment – indeed people sometimes choose to have all treatment possible right to the end – but others get tired of numerous hospital admissions and are ready to say ‘that’s enough’ and we need to be able to support them and plan for this. The alternatives to planning and making our wishes known are the risk of uncoordinated care out of hours; emergency admissions which are distressing for patients; relatives and staff who don’t know patients’ real wishes; and more deaths in hospital, which is fine if this is where patients want to be at the end of their lives, but not if they don’t.

Palliative care is about helping people live well until they die, but we all need to be honest with each other so that people can prepare for this. As a doctor I feel really privileged to have been able to help people achieve a peaceful death in their preferred place of care, and I believe that any initiatives that help us plan and prepare for this, including End of Life Care registers should be encouraged.

Dying

 

 

 

 

 

 

 

 

 

 

 

 

Lutz-R. Frank via Compfight

It would be great to hear what other people think about this important issue. If you have any views on Karen’s post, or the articles in The Daily Mail please consider leaving a comment. Thank you.

 

Guest Post: Raising Awareness of Organ Donation; Real People, Real Lives

Guest Blog: This post has been written by Dr Karen Jones, another of the GPs at Binscombe Medical Centre.

I am writing this from a very personal standpoint. Today my niece and her dad – my brother – are in London to appear on Daybreak to talk about organ donation. Holly is 19 and suffers from cystic fibrosis. You can see her very measured appeal for organ donation on You Tube and Daybreak on ITV player. Cystic fibrosis is a genetic condition that affects mucous production and causes thickening of secretions. This is especially a problem in the lungs, causing recurrent chest infections, and the pancreas, leading to malabsorption because the pancreatic enzymes which help to digest food can’t be released into the gut. Holly needs new lungs. Her appeal is for us all to think about donation, because until we start talking about this on an individual and societal level, people like Holly will continue to die waiting for organs. In 2006 The Organ Donation Taskforce was established to look at issues around organ donation. They looked at all aspects of organ donation, and in 2008 made 14 recommendations which, if implemented, they felt would increase the rate of organ donation by 50% in 5 years. So far it has increased by just over 30%, we will see at the end of 2013 whether their target has been achieved. Apart from all the organisational aspects of organ donation and retrieval, they also looked at changing the way individuals could donate organs, and it is this very personal aspect that I want to concentrate on.

Various options are available to us as a society, and some members of our family feel that a ‘hard’ opt out system is the way forward. Wales are currently looking at adopting this system. This would mean that doctors could remove the organs of any adult who had died and who had not registered to opt out of donation as an individual or as part of a group who collectively choose to opt out. This would be regardless of what the relatives felt. A slightly different approach is a ‘soft’ opt out system where the above applies, but also the relatives views are taken into account if they offer them OR the relatives views are actively sought for those who die and have not opted out. In the United Kingdom we have a ‘soft’ opt in system whereby doctors can remove organs from a dead person if they have registered to allow this, but doctors may choose not to do this if they receive opposition from the relatives. A ‘hard’ opt in system would not allow the relatives to oppose organ removal.

So how do we feel about this? My own opinion is that we need to increase awareness of the issues. However painful it is to have these conversations about dying and our wishes at that time, it is even more painful when faced with a loved one on a life support machine in hospital, trying to fathom out whether they would want to donate their organs at such a harrowing time. I think the medical profession needs to deal with these situations with sensitivity and uphold the wishes of the deceased, but also listen to the relatives. Usually if people have strongly expressed their desire to be organ donors, then relatives should respect this no matter how difficult this may be for them. Should we have an ‘opt out’ system? Spain has a ‘soft’ opt out system and have increased the numbers of organs donated, but they have also improved other areas in the whole pathway of organ donation and it is probably this that has improved the donation rates – for example they have a designated organ donation nurse in every hospital. My concern is that with an opt out system we are presuming consent for donation. It may be that people do not understand, don’t get round to opting out, have learning difficulties or are chaotic in the way they live – can we presume that they have made a decision to leave their organs when they die? Consent to me is an active decision, and I think that people who have chosen to donate their organs have made a positive choice to help others with the amazing gift of themselves. Maybe we will be debating this again soon as a society, I think as individuals we need to have made up our minds and, more importantly, told our nearest and dearest – so that if the time comes when they are facing such a decision, they can honour our wishes and something can be gained from their loss.

Miscarriage and Stillbirth – a Chance to Say Goodbye

There are so many good people out there, doing excellent things in our society, that it is rare to find someone engaged in something truly unique – but every so often you do come across a person, or an organisation, that has started something new and is meeting a need in society that has previously been ignored. Usually this comes about because someone has found themselves to be in need, looked around and found nothing out there – at which point most of us complain for a bit, suggest someone should do something, and then get on with our lives. When that person is full of drive, energy and determination, however, they might just rise to the challenge, fill the void and come up with something special.

Zoe and Andy Clark-Coates are just such people, and have turned the personal tragedy of recurrent miscarriage into a remarkable charity called Saying Goodbye. They have kept their remit simple, with their aim being to arrange remembrance services for couples who have lost a baby either in pregnancy or early years, but are not short of ambition – the services are held nationally, and in some of the grandest cathedrals in the land.

There is no shortage of testimony from couples who have found these services hugely beneficial as they come to terms with their own bereavement, and it is interesting to consider why there might be such a need for these shared experiences of grief. In part, I am sure it is because of the success of modern medicine. The death of a child is such a rare event in Western society nowadays – a cause for celebration for society as a whole, but a source of isolation for those who do still suffer the tragedy of losing a child. In times gone by the grief felt by those who lost a child would have been no less acute, but they would have been surrounded by family and neighbours who understood and who could share their pain. The services organised by Saying Goodbye hope to give people the opportunity:

‘To just stand in a room with hundreds of other people who have all been through a similar experience, knowing everyone is there to support one another, will be such a powerful moment, and we hope it will be life changing to many

Another, perhaps more complex, reason why these services will be significant is the uncertain status of miscarriage in our society. There is no ambivalence surrounding stillbirth – women suffering from this much rarer event are afforded the full legal and emotional status of one suffering a major bereavement, and few would argue that it is not a more significant trauma than a miscarriage in the first three months of pregnancy – but where does that leave those who do suffer miscarriage? Are they allowed to grieve? Their loss is afforded no legal status – there is no death certificate and no burial – the child they have lost is often euphemistically referred to as “the products of conception”, and society frequently expects a rapid return to normal life. Early pregnancy has an ambivalent status in our culture, as we struggle to hold two contrasting values. On the one hand we do try to acknowledge the weight of loss suffered in a miscarriage, while on the other we place a high value on the freedom of choice when it comes to the decision to continue with a pregnancy and the role of termination. There is an inherent tension between these two positions which society is unlikely to resolve, and I suspect it is easier for our collective conscience if it is miscarriage that loses out. Services of legitimised remembrance in the awe-inspiring setting of a cathedral may help to redress this imbalance.

The services are open to people of any faith, or no faith at all, and the intention is to be as inclusive as possible. They won’t be for everyone – people are naturally resilient, and when sorrow occurs most of us find our own way to come to terms with what has happened. For many couples who lose a baby in pregnancy they will have worked their own way through their grief and will not feel a need to revisit their loss. One thing I have learnt about grief, however, is that there is a danger in both too much grieving and too little – and that the ‘right’ amount of grieving is different for every person. Too little opportunity to grieve shackles us to the past and we are afraid to move on for fear of leaving some of ourself behind, while if we focus too much on the process of bereavement we may forget that we have both a present and a future. For those who are on the painful journey of bereavement there are no easy answers and no shortcuts, but for some the services organised by Saying Goodbye may provide some life-giving refreshment along the way.

To find out more about Saying Goodbye, visit their website: www.sayinggoodbye.org, or follow them on Twitter: @SayingGoodbyeUK

Who’s Afraid of the Big Bad C?

There is a numbers game called 21, where two players count up in steps of 1, 2 or 3 with each trying to force the other to call the number 21 – I hear that sometimes drinking is involved. Doctors and their patients often play a similar game, only with words rather than numbers, and without the usual inebriation.

A typical opening gambit from the patient might be: “I’m sure it’s nothing to worry about, doctor,” which is a gentle thrust easily countered by: “Is there anything you are concerned it could be?” This usually finds its mark and the doctor is home and dry, but a determined patient might stubbornly pass the baton once more like this: “Do you think it’s serious, doctor?”, and the physician is undone – the C word must now be used. Not the vulgar C word that might excite a Censorship Board, but the genuinely offensive version that we are truly afraid of. The C word that has the power to turn our world upside-down: Cancer – because it’s always cancer that lurks in the background of these conversations.

I am sure there are individuals who can take it in their stride, but there is no doubt that as a society we are terrified of cancer, and will go to remarkable lengths to try to avoid it. And rightly so, it kills people – we should indeed see it as our enemy and combat it wherever we can – but what is it that gives cancer such a unique status in our society? After all, it is not the only condition associated with significant mortality.

The extraordinary potential for cancer to impact a person’s life was powerfully described by Emma Gilbey Keller in her article for The Guardian on 27th April, as she eloquently detailed her own 40 day journey with the disease – from first detection of abnormal cells by mammography, through bilateral mastectomy, ITU, infection and eventual recovery. Harrowing. Her own word, and the only one that is suitable. Anyone involved in health care should read her article and then have some time alone to think. It certainly got me thinking.

If the only thing that is bad about cancer is that it kills people, then I should be delighted for her – she certainly won’t die from breast cancer now. Her oncologist was clearly pleased – pronouncing the all clear 5 days after the operation, another triumph, another life saved. So why did the article leave me feeling sickened and angry at the doctors who did this to her? Maybe there is much more to cancer than death – and is death inevitable anyway? Emma Gilbey Keller’s cancer was detected by screening and was the earliest type of breast cancer, known as Ductal Carcinoma In Situ, or DCIS. Under the microscope DCIS looks like cancer, and so doctors have given it this exalted title, but in real life it is disingenuous to brand it that way. When I hear the word cancer I think of something that will inevitably spread and kill if left untreated. DCIS is more likely to go away on its own as our immune system sorts it out. Estimates are difficult, but between 14% and 53% are thought to develop into an invasive cancer over a period of 10 years. The problem is that the treatment for DCIS is largely the same as for a true cancer – surgery and radiotherapy.

The day you are told you have cancer is likely to burn its way into your memory with the clarity usually reserved for your wedding, the birth of your child or a national disaster like 9/11. So what would I fear if I were to be diagnosed? Death, yes, but far more than that. Loss of control would be top of my list. Knowing that life was suddenly put on hold – whatever I had planned for the next however many weeks will have to be shelved. And the expectation for this is high – doctors get very annoyed if you suggest delaying treatment until after your holiday, or some important deadline at work. Cancel everything, they will demand, your life is at stake.

Then there is telling everyone – and the inevitable talk that will follow. Well meant, I’m sure, but can I bear the idea of people saying: “Have you heard?” and “He’s being so brave.” How do you tell people? Will they know what to say to me? Do I want this label? Do I have a choice?

Finally there is the treatment. Surgery – that’s going to hurt! And not surgery that will give you something in return, a new lease of life like a cataract operation or a new hip. Surgery for a breast cancer, or a prostate cancer picked up on screening will not make you feel any better – you weren’t feeling ill in the first place. And radiotherapy, chemotherapy, whatever they suggest – side effects, nausea, tiredness, depression, the list goes on. Risks carried with every part of it, but eclipsed by the drive to get rid of this thing that I can’t even see. Emma Gilbey Keller said risk was the reason she had to do it – she couldn’t take the risk of doing nothing. I don’t blame her for one moment, but when you think about the risks she did take in order to eliminate that one risk; the definite, palpable pain she went through in order to prevent something that might, or might not, happen sometime in the future; the permanent changes to her body (remodelling, her plastic surgeon arrogantly called it)…well it certainly gets you thinking.

The biggest harm associated with cancer screening is the fact that there will inevitably be some people who are treated needlessly, as their ‘cancer’ will never actually make them ill. When the only treatment doctors can offer them is as aggressive as it is for cancers like breast or prostate cancer, the medical profession needs to acknowledge that in trying to cure someone of this disease, it will inflict on them much of the pain and misery associated with the very condition it is trying to prevent. And when doctors dare to use a word as powerful and emotive as the Big C, they must be very careful that they are not coercing people to look for cancers that no-one knows how to treat – and very cautious if radical treatment is the only option they have to offer if they find something.

Courage in Dying

I was deeply saddened last month by the need to attend the funeral of a dear friend who had taken his own life. The service was handled with great sensitivity by both the minister and my friend’s family. There was no attempt to hide the tragedy of what had happened, while still allowing us all to remember the warmth of the friendship we had lost. And yet.

And yet you couldn’t help thinking that had he died of cancer we would have all felt very differently as we remembered his life. It didn’t seem fair that because he had been dealt the hand of depression, rather than a more obviously physical illness, we would think more of the means of his death than his battle with his illness. Had he died of cancer we would have talked of his brave fight against the disease; had his killer been meningitis we would have railed against an illness that could so tragically and indiscriminately take such a young life. As it was depression that killed him, it was hard to think other than with regret that no-one had managed to stop him.

Of course, I would have wanted to stop him if I could. I would have wanted to tell him that the despair and overwhelming sense of worthlessness that he felt were not the truth, but part of an illness. I would have wanted to stand by him and remind him gently that if he just stood there long enough, if he could go through the mundane cycle of waking, eating and sleeping enough times, then hope would start to glimmer in his life once again, as I know it would. But I was not there. He chose, with the private dignity that he always prized when it came to his illness, to keep his true feelings to himself – to remove himself from those who loved him, and to face his pain alone. A tragic choice, but a brave one nevertheless.

Many people suffering from depression will think of suicide at some stage. Thankfully, far fewer will actually consider doing anything. Often people will tell me they are ‘far too much of a coward to actually try to kill themselves.’ Hooray for cowards I say! But there is something here – there is a great stigma against suicide in our society, an underlying shame that someone ‘gave up’, an under-current of feeling that there is something cowardly about not being able to continue with this life. As a doctor I will always do everything in my power to prevent suicide, but I refuse to remember my friend in shame, even in the manner of his death, or to consider that there was anything cowardly in his actions. Which requires more courage – to die of cancer in your own home surrounded by your family and supported by good medical care, or to be so destroyed by the ravages of Churchill’s Black Dog (the term that he famously applied to his own depression) that you have to face death alone?

The 16th Century French Essayist, Michel de Montaigne, writes about the importance of the manner of our death in his essay That no man shall be called happy until after his death. He quotes the Greek General Epaminondas who, “when asked which of the three he thought the best, Chabrias, Ephicrates, or himself, answered: ‘No one can decide that question till he has seen us all die.'” Death is such a taboo subject in our post-modern world that we no longer talk about a ‘noble’ death as the Greeks or the Tudors used to. What is fascinating to me is that our perception of what constitutes a worthy death has changed just as much as our ability to speak about it. Montaigne quotes many examples of good deaths in his essay – not least Scipio, the father-in-law of the Roman military leader Pompey who ‘by a worthy death…redeemed the bad name that had dogged him up to his last day.’ And how did Scipio die? He committed suicide.

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.