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