Tenderness with Life
Frances Dawbarn FAITH MAGAZINE March - April 2016
Tenderness with Life
As I have listened to debates and arguments about assisted suicide – many have been reasonable, measured and well considered – something has occurred to me. It is the meaning of the expression, the ‘right’ to die. Death is not a right – it is a certainty! We are all going to do it. Everything living, which has lived, and which will live, must undergo change and die. Only God is eternal and unchanging. Our profession is to die; our whole life journey a preparation for this final truth. ‘Thou owest God a death,’ says Prince Hal to Falsta . Simply put, but searingly and inescapably true. ‘To die’, he says, “is common as to live”. The ‘right’ to die actually means, if we’re brutally honest, that some people are seeking the legal ‘right’ to kill another human being.
Death is as natural as birth. Each one of us is journeying towards the inevitability of death, yet it is the one thing we fear to discuss or contemplate. Instead of understanding, as James le Fanu writes, that ‘the implications of mortality are intrinsic to a proper grasp of the human experience’, we choose to sanitise the things of death, including the language we use to describe it (in Last Things, Tablet, 29 November 2014, p.28).
Those who support the idea of assisted suicide are, very often, relatives of a terminally-ill individual whose suffering they wish would end. Allow me to state my position clearly: like most people I live with questions about suffering, especially when it comes to the young, and I am not immune to the ‘why me?’ or ‘why him or her?’ moments. It is not unnatural to wish suffering to end. It is a natural response to a heart-breaking situation and no blame attaches to those who wish for it. I have wished for it myself when I nursed very ill patients, or when loved ones of my own neared the end of life. But praying for suffering to end is substantially and morally different from ending suffering by taking life.
As a society we struggle with contradictory attitudes fed by fear, confusion and ignorance. On the one hand, while desperately trying to cheat, postpone or delay death we seek the right to speed up the process when things get tough. On the other, doctors are trained to believe that death is a failure and that they must battle heroically to prolong life at all costs. The inevitability of death is denied, the medical profession fears accusations of negligence and litigation and elderly or terminally-ill people are subjected to rigours of surgery, or other debilitating therapies, simply because it can be done.
I believe this is a travesty of the physician’s duty of care. Because something can be done does it mean that it should be done? We must learn that there are times when certain courses of action are inappropriate, even cruel. Atul Gawande has written about ‘the callousness, inhumanity and extraordinary suffering’ inflicted on the severely ill, ‘with only a sliver’s chance of benefit. The doctors themselves are not cruel but the narrowness of their focus on what can be done rather than what should be done makes their actions so.’
The same applies to ‘assisted suicide’. It can be done and, at the moment, with little risk of prosecution for those who ‘assist’. But should it be done? There is a world of difference between assisted suicide and gentle non-intervention and the introduction of palliative care when death is close. Allowing nature to take its course in the most humane and dignified way possible is not negligence, and it is certainly not murder. In hospices it is still referred to as TLC: ‘Tender Loving Care’.
We are addressing the wrong issue. Instead of seeking to legalise assisted suicide, we urgently need to change our hard-wired attitude to death and, crucially, improve the provision for end-of-life care.
Offering proper care
Sheila Hollins, crossbencher in the House of Lords and professor of the psychiatry of learning disability at St George’s Hospital in London, recently wrote:
‘... It is an inappropriate response to give people the option to ask their doctor to help them end their own life [simply] because current care is not universally good enough... I want to improve end-of-life care by improving the availability of palliative care – not just medical care, [but] including mental-health care [and] better social and spiritual support’ (Tablet, 15 November 2014).
There are difficult problems which must be addressed: the number of elderly people in our country is increasing. Many are lonely and forgotten. Some in this situation, or facing its gradual onset, are frightened into believing that being killed is better than loneliness, pain and increasing dependency on others. Can we honestly say that we are doing enough about such fears?
There are also younger people with an illness which gradually robs them of independence and dignity. Others face the consequences of a devastating life-changing accident. Some in despair may seek assisted suicide: simply saying this is wrong doesn’t resolve their dilemma or relieve their distress.
Look at Stephen Hawking and his achievements. He is unusually gifted, but is also an example and a wakeup call. While applauding his courage and determination, we must think about helping others like him, so that they, too, can nd new hope and a new beginning.
Spiritual support is crucial to building and reinforcing a sense of purpose and self- worth. Persuading someone in this situation that we are more than physical beings – that we have souls and, as children of God, are loved – is tough. To be convincing, we must meet God half way! Faith-based belief that assisted suicide is wrong has to be accompanied by practical help for people who are close to despair. We have intelligence, abilities and talents which we can develop – in ways perhaps we never thought possible – when our bodies let us down. A young American after a catastrophic accident faced life in a wheelchair, unable to do anything for himself. He was 6" 2', intelligent, athletic and healthy. After a huge struggle with himself, during which he contemplated suicide, he turned his energies from his helpless body to his highly intelligent mind. Because of him, in 1974, a law was passed in Massachusetts requiring public buildings to be accessible to the physically handicapped. Two years later, in 1976, he died. He was 37, and he was my husband. His work enhanced the lives of countless people. In Britain, many have been helped by the Independent Living Fund (ILF): there is a danger that this could be restricted if local authorities choose to spend the money on other things: talk to your MP to ask that the funds be ring-fenced for the disabled.
We need to look properly at end-of-life care, dispel myths and o er hope. Hospices are places where however much, or little, time is left, life comes rst; not places where you just wait to die. They are not gloomy places where everyone speaks in subdued whispers with long faces. On the contrary. There are, of course, very sad times – how could there not be? But there is as much laughter and fun in a hospice as there is anywhere else. Perhaps this is because we have recognised that dying is part of life and that life is for living.
There are misconceptions about the use of pain relief, in particular the use of morphine. Often, these are based on the misuse of opiates, which has given them a bad name. But, appropriately used, opiates have an important role to play in controlling pain and allowing terminally ill patients to regain quality of life. Morphine comes in many forms: tablets, liquid, injections and patches for use at home after visiting a hospice for symptom management. Morphine and other drugs can also be administered via an automatic syringe delivering a constant, controlled pain relief over a 12- or 24-hour period. Sheila Hollins notes:
‘Recently, a home carer told me that the family of a man dying of cancer would not allow him to have morphine because they were afraid it might kill him; they did not believe the GP, who said it would help him. Meanwhile, a nurse told me that her dying mother was refused morphine by her GP because she said it was against the law. But it is not against
the law and it does not kill you when the doctor or nurse carefully gives you just enough to relieve your pain, an amount that may gradually need to be increased.’
Some people believe that once morphine arrives the end is very close, and sometimes that is true. Inevitably there will come a moment when a dying patient receives a last injection. It is never given maliciously or arbitrarily. It is not given to kill, nor is that the intended outcome. In the nature of dying, however, there is a last moment for everything: the last visit home, the last drive into the countryside, the last conversation, the last smile, the last injection.
Many patients have a lot of living to do before that moment comes. They visit a hospice for various reasons, some in Day Care Units. Therapies include massage, aromatherapy, symptom-review with medical staff, social gatherings. A midday meal is shared, games and quizzes are organised, some patients are helped into a bath or enjoy having their hair done. There is time for quiet chatting, enjoying music or a walk in the gardens. Friendships blossom. Some Day Care patients visit for months or even years.
And there are many reasons why people are in-patients. Some come to give families a rest, to review and treat symptoms and adjust treatment. Many stay for about a week, and can then return home or in some cases even to work, for a while.
People’s final months or weeks can be precious. Sometimes difficult family dynamics are resolved: family feuds ended, peace found after years of bitterness. Hospices also provide time – to become reconciled to the reality of death, to let go of life gradually. Each person can meet the stages of dying in her or his own way. I nursed patients physically ravaged by disease who nevertheless died spiritually serene and at peace. Patients’ religious beliefs, and non-beliefs, are always respected. Spiritual anguish is as much a part of suffering as physical pain and may be considerably worse. It can have devastating effects and consequences. Finding ways to help is as important as giving the right physical care. Sadly, there are times when a hospice struggles to help: agitation and physical, emotional or spiritual distress is intractable and simply will not respond to intervention. This is terribly distressing for all concerned, including the nursing and medical sta who are dedicated to alleviating suffering.
When death comes, hospice staff concentrate on the family, supporting them through the first difficult days and weeks. Many come back to visit. Some become volunteers, or Friends of the Hospice. No one is killed in a hospice. In the midst of death, hospices cherish life.
No quick- fix
Hospice care for the dying should, in a civilised society, be provided as standard for all who need it. There are positive steps we can take to counter the increasingly loud but desperate voice of the ‘right to die’ lobby.
Attitudes must change: we must break down the barriers we have constructed between us and the reality of our death. We must help people facing physical dependency, and give good end-of-life care for all who need it.
Talk to people about hospices – explain that there is an alternative to assisted suicide. Hospices are poorly funded and need help. Much encouraging work is being done – for example, using hospice care as a model, palliative care training is now offered in many nursing homes and in special units in general hospitals. This is good; it is an improvement, but is still not enough.
A final word from a very inspiring terminally-ill patient: ‘Life is very precious and I have learned to appreciate every day as it comes, some good, some not so good. I can be completely honest, with myself and with others. I can make my peace, build bridges and mend fences. We are all dying. I’m just doing it a bit sooner than I thought I would. I have no fear. The hospice gives us a little bit of heaven on earth.’
Frances Dawbarn has a PhD in the History of Medicine, and is a qualified nurse with professional and personal experience of caring for the dying.