'A Poor Do,' my Grandfather Would Have Said

Over thirty years ago now, my introduction to nursing was as a nursing auxilliary on a psycho-geriatric ward. We used to work 13 hour night shifts and I grew to love the patients - we spent more time with them than with our own families. Many were such characters that I remember them to this day. There was one who had owned a pub and who used to call 'time gentlemen please' whenever he wanted to get rid of unwelcome nurses or visitors at his bedside. Then there was one who had fled from Russia in the wake of the 1917 revolution and who used to enthrall us with tales of life in St Petersburg - some of which, I suspect, were grossly exaggerated but nevertheless gave a wonderful flavour of a long-lost culture. Many of our patients had physical and mental frailties that they coped with bravely - more bravely than I think I could. Some hardly ever had visitors.

I think the saddest article I have read this week (in The Times) was one that drew attention to the fact that many over 75's in Britain say they feel intensely lonely. Jeremy Hunt, the health minister, has launched a project to help councils, health services and social care agencies map isolation among the very elderly and  improve services so that people do not suffer from 'social disconnection' - a rather grand title for feeling abandoned and very lonely.

It is often said that you can judge how civilized a society is by its attitude to its oldest members. While I am sure that the majority of people respect and love their older relatives and friends, do we in fact do enough for them in our ever busier lives? What most older people need is time. Even carers now have such tight schedules that it is difficult for them to spend time 'just talking'. Apparently more than half of those over 75 live alone and about a tenth of them report very profound levels of isolation. One in five have contact with family or neighbours less than once a week. Loneliness effects a person's physical as well as mental health and the research suggests that not having any company can lead to higher levels of heart disease, stroke and dementia. It also leads to loss of confidence so that a person can spiral into a state of mind where they just can't motivate themselves to go out and meet people.

The article, by Rosemary Bennett, the Times' Social Affairs Correspondent, with its picture of an elderly lady looking absolutely desolate, frankly made me feel like crying. I can't imagine many things worse than simply not having anyone to go to with your problems and successes, no one to off-load to after an upsetting experience, no one to laugh with or to make you feel that you are understood and appreciated. One elderly person I talked to recently said how difficult she found clinic appointments. She would look forward to having a morning out with people to talk to but then find that although she was asked a lot of questions she came away feeling that there had been no real two-way comminucation which made her feel even more alone. 

What can we do? I know that many churches have teas and events for older people. One church runs 'holidays at home' for people who need a summer holiday but can't go very far. I know that here in my own village, people do look out for neighbours who live alone or need help. Apparently there is now a Campaign to End Loneliness and it is good that the government is drawing attention to the problem. However, I suspect the real answer is that we need to reveiw our attitude to older people. They are the members of our society who have the long-term narrative, they are often the ones who have learned to live with paradox and disappointment and yet somehow make sense of life. They have a perspective we can ill afford to ignore. Time spent with an older person is probably one of the most important things you can do. And even when communication may be difficult because of deafness or confusion it still matters that the gift of time has been given. 

When Winston Churchill had his 75th birthday a photographer said to him, 'Sir, I hope that I will also take your picture on your 100th birthday.' Churchill answered, 'I don't see why you shouldn't, young man. You look reasonably fit and healthy!'  Many of us are living into our 90's and 100's these days. The final 25 years of life should not be lived in loneliness. These years can be a time to cultivate a sense of fun and, in the best possible way, to help others not to take themselves too seriously! They can be a time to share wisdom and memories and to make new friends too. We had a lady in my last parish who, at 92, used to tell catarpillar jokes and play the mouth organ at church events. The children absolutely loved her. Another lady used to come to everything and just sit and smile at everybody. She never said much, even in a discussion group, but everybody missed her when she wasn't there.

If you want to do something to help (or do it through your church) or if you are feeling lonely, visit

http://www.campaigntoendloneliness.org.uk

Or speak to your local Vicar or minister - lurk at the church door or give them a call.

The Fourth Age - Life Long Learning

We are used to hearing about the Third Age but lately we are beginning to hear about Four Stages of life. People are living to be much older and many are active into their 60's and 70's in ways they were not previously - I was speaking to one man on Sunday who is still working aged 78. It's also true that many people are progressing into their 80's and 
90's and looking for ways to find friendship and to go on engaging in the adventure of life, even where physical health, sight, hearing or mobility has deteriorated to some degree. The writer Ann Morisy puts it like this, 'For the first time in human history, our map of life consists of not three stages, but four. The suddenness with which this new shape to our lives has come about makes it unsurprising that we fumble for ways of making sense of this apparent gift of extra years.'  

Apparently anyone reaching 65 (which, for most people, used to represent the age of retirement or beyond) can expect an average of 15 years' further active life. This general expectation of a greatly extended period at the end of life is a relatively new phenomenon. I can remember my grandparents commenting on every obituary they read in the Times where the deceased had had more than his or her 'three score years and ten' - it was unusual.

So what are the distinctive qualities and tasks of the Fourth Stage of life? Carl Jung lived to be 87. His psychological theory placed great emphasis on the need for a person to pass through the process of individuation which often occurs in later life, certainly after mid-life. By means of this process, poeple work through earlier internal conflicts and losses to become more themselves. James Fowler noted that, in the final stage of life, people often discover how to become more comfortable living with paradox, recognising that two truths that appear to conflict can be accepted and 'lived' together so they make a larger picture of what truth is - 'I loved my parent/my parent was sometimes unkind to me'  can come to be understood in the wider context, 'My parent had a difficult life/my life has been valuable despite the wounds/I can both love my parent and acknowledge that they were unkind'. Teresa of Avila and John of the Cross both portray the spiritual life as a succession of stages or 'rooms' through which we move, coming to stages where there is much perplexity, stages of comparative peace and stages where there is a deep yearning to discover more or to plumb the depths of our own psyche in order to look at the hidden places.

What are the implications of this for the churches?

Fear Should Not Be An Outcome

Many of us have been distressed by the news that Mr Tony Nicklinson, who suffered from Locked-in Syndrome, died from the refusal of fluids and pneumonia just days after a High Court decision that he could not be helped to die by doctors. Lord Justice Toulson and Justices Royce and Macur ruled that he could not enlist medical help to die, 'voluntary euthanasia is murder, however understandable the motives may be.' The Bishop of Bristol, Mike Hill, said that they were 'surely right not to allow Mr Nicklinson the right to die with the assistance of a doctor' because, as the British legal system is based on case law, such a ruling would have opened the way for the assisted death of other much more vulnerable groups. 'It is reported that many vulnerable and elderly people suffer abuse at the hands of their relatives.'

As readers of this blog will know, I have very grave reservations about any change in our current laws to allow assisted suicide. However, I do think that Mr Nicklinson's case and the case of another man which was heard alongside his raise all the questions about end of life care in a particularly sharp way. Let's consider both ends of the spectrum in the debate. Mr Nicklinson is reported as having described his life as a 'living nightmare' and as having said that, after the appeal court's ruling, he was left 'devastated and frightened'. We are not, in this particular case, consigning someone to a situation which they find to any degree tolerable. For those who care on a day to day basis, it is a distressing and morally undermining situation to be forced to sustain life; it raises questions about compassion in a civilized society. To allow someone to get to the point where they feel they have no recourse but to refuse food and die in fear does not seem humane to most of us. At the other end of the spectrum, the Bishop of Bristol is right. There are many people who are unable to speak for or defend themselves who would be vulnerable to other people's pressure to end their life once the legal penalty for anyone who does so is reduced. Perhaps we find this hard to believe. I picked up a copy of Good Housekeeping in the dentist's waiting room recently. In it, Jane Worroll describes how her mother, suffering from dementia, was ill treated in a care home. As her mother became more and more unhappy and withdrew into herself, Worroll had suspicions that she was being maltreated and finally caught the abuse on a hidden camera which she left in her mother's room. The shocking thing in this story is that this was a situation where all the outward signs were that 'this sort of thing could never happen here'. Moved to another home, her mother gradually regained some zest for life. How many other such elderly people are there with no near family who, if the law changed, would become the focus of suggestions about ending their life early?

As medical science finds ever more ways to ensure that life is preserved even when a person cannot perform for themselves such basic functions as breathing, eating, excreting and communicating, we are going to see more and more of these cases.  My question is why we are not doing more mid-ground work? These issues need to be tackled from both ends by the legal and therapeutic communities. Are there ways in law to ensure that relatives or medical practitioners who engage in conversations about a person's thoughts about ending their life and who decide to give assistance when asked to do so are treated with a degree of leniency? I think this in fact happens, but could there be much clearer guidelines about what charges and legal processes will be faced and about suspended sentences in such cases? Are there ways for medics and carers to be enabled to have these very difficult conversations about the end of life with those who have progressive, debilitating conditions and who wish to instigate such conversations much sooner, at much greater depth and to keep the situation under review? Death almost always involves some mental or physical suffering on the part of those who die and those who support and care for them. We cannot eradicate that. Lay people (in the medical sense) tend to believe that modern medicine can deal with every kind of mental distress and physical pain. This is simply not the case, though much more can be done than sometimes is done. Is there not some middle ground where lawyers and carers can give patients more freedom to explore what is best for them and relatives a quicker and more accurate response to questions about the penalty for their actions? Dragging such cases through to appeal with all the publicity that is involved does not appear an appropriate way to deal with these cases. They seem to call for the same kind of specialisation, body of experience and sensitivity of handling that the family courts have developed over time. 

Jane Worroll's story makes me think that education about caring for the elderly is something which should be much more widely available. We run parenting classes because we recognize that bringing children up is demanding and not everyone is a 'natural parent'. Understanding the aging process, caring for those with dementia and doing this alongside work or other family responsibilites is not something that everyone can learn to do without help. As a greater proportion of the population is involved in caring for older relatives, health and social services, churches and voluntary organisations need to give more thought to this. Attitudes to the elderly and an appreciation of ageing should be something that schools tackle in a positive light as well.

I must pay tribute to Mr Nicklinson and his family for the very courageous way they have brought this dilemma to the public's attention and to Jane Worroll for her persistence in bringing to light the truth of her mother's situation.

Bereavement Support

This promises to be a really excellent study day with the Just 'B' team. Just 'B' is the fairly recently created bereavement support service run by St Michael's hospice that offers anyone suffering as a result of someone's death a safe place to express their feelings.

 To book,  e mail

education@stmichaleshospice.org

To contact Just 'B' to ask about their services, e mail  info@justb.org.uk

Volunteering Opportunities

Did you know that the Alzheimer's Society is always looking for people who would like to volunteer? The Society offers a great range of support to sufferers and their carers and could not do so without the dedication of large numbers of volunteers. The kind of things they contribute varies greatly. Help is needed with fund raising, administration, maintaining information sites and libraries, providing transport and organising social events. Befriending someone with dementia, giving 2 or 3 hours a week to be with them, can mean that they can can continue a hobby or interest and that their carer can also have a break to do something that allows them to get out and find refreshment. Volunteers say it's fun and there's something for everyone no matter what your gifts. There is a proper induction programme, on-going training, one-to-one or group-based support and expenses are re-imbursed.

There are around 4,800 people with dementia of one kind or another in the Ripon,  Harrogate and Craven areas alone, two thirds of whom live in the community. By 2025 there will be over 1 million people with the disease in Britain and is is essential that adequate support and expertise in caring is built up over the next few years.

If you think you might be able to help, please contact

The Volunteering officer, Alzheimer's Society, Low Mill Units, Phoenix Business Park, Ripon HG4 1NSP  01765 690900  ripon@alzheimer's.org.uk

The national Alzheimers Society website also has a wealth of really useful information. If you go to the bottom of the home page and enter your postcode, you can find an excellent list of all the services in the Richmond and Hambleton and the Ripon and Harrogate areas.

 http://alzheimers.org.uk

Buckets of Inspiration

Since working on a haematology unit thirty years ago where most of our patients had leukaemia, myeloma or lymphoma, I've always taken an interest in the Leukaemia Research Society which does cutting edge research into blood cancers. So I was really inspired to come across a blog called 'Alice's Bucket List'. Alice is 16, lives in Ulverston in Cumbria and and suffers from Hodgkin's Lymphoma. She writes that she doesn't seem to be winning the battle with her cancer. A bucket list is what she decided to make for herself - a list of things she wants to do 'before she kicks the bucket'. She says some of them will just always remain dreams, but others she has already achieved. Top of her list is her desire to get everyone eligible to join a bone marrow register. Her blog is heart warming and inspirational. Do have a read and go onto the links to the various bone marrow registers which she gives.

http://alicepyne.blogspot.com/

You have to be between 18 and 49 to join the British bone marrow register. A bone marrow transplant can restore someone who suffers from a blood cancer to full, long lasting health, but the marrow of donor and recipient has to be extremely carefully matched. If you are a regular blood donor, you can ask about joining the register at your next donor session. Or you can apply to join online. Bone marrow donation can be done in one of two ways - the first does not even require a general anaesthetic and neither requires surgery. The marrow is either taken from the general blood circulation or from the hip bone under a general anaesthetic. 

Unfortunately, I'm too old to donate marrow, but I wish I could help Alice make one of her dreams come true. Bone marrow transplant is still a pretty radical procedure, but it transforms the lives of many very sick people of all ages from children to quite elderly and the gift can be given so simply. 

The British Bone Marrow Registry

http://www.nhsbt.nhs.uk/bonemarrow

And PS! Another unsung service that many of our military personnel give is the regular donation of blood and marrow to specialist haematology units. Because they all know their blood group, they often fulfil a valuable role in being willing to supply white cells, platelets and other blood products for patients with rare blood groups. 

Assisted Suicide

The rather official sounding Commission on Assisted Dying was set up by a group of campaigners. Funded by Sir Terry Pratchett and chaired by Lord Falconer, a barrister and former Justice Minister, it has taken evidence from 1,300 sources during a year long enquiry. Its critics claim that it did not start from a neutral point, however, and was biased toward a change in the law. Unsurprisingly, its findings are that the law should be altered to allow assisted suicide under certain very strict conditions

• the person must be terminally ill and judged to have less than a year to live
• two indepenedent doctors must agree
• the person must be over 18 and of sound mind
• the person must be able to demonstrate that suicide is a voluntary decision on their part.

You can read more about the Commission's recommendations and reactions to them on
http://www.bbc.co.uk/news/health-16410118

All very difficult yet fairly predictable, I think. The aspect of the argument that seems to have been overlooked in most of the reports I've listened to today is this: to allow assisted suicide is not something that affects only the individuals who are faced with a very, very difficult choice about whether to end their own lives. If we change the law to allow assisted suicide, people will be needed to organise the means of suicide and, probably, institutions will arise whose business it is to make suicide possible. Who will these people be? Will doctors, nurses and pharmacists take on the preparation of suicide drugs as part of their everyday work? Once the preparation of such drugs is allowed, it will only be a small step to the plea for someone to administer them in cases where the dying person cannot do this for themselves. This changes society's entire relationship with the medical and health care professions and is in danger of diminishing the trust we would feel able to put in any institution, such as a hospice or nursing home, which decided to adopt assisted suicide as an option for its patients. (You can image, 25 years down the line, protocols where staff have to ask the question, 'Would you like to discuss suicide?')

Much of the argument today has been based around the perceived and strongly articulated need of individuals either to be able to take their own lives or to have the law back up their own firmly held conviction that suicide is, or ought to be, an avoidable tragedy. I believe that people in both groups should be enabled to explore, honestly, their own position and that counselling and support should be available for those who want to think about suicide, without any penalty in law for the counsellor or supporter. However, to suggest the legalisation of the act of helping someone to die, even by their own express wish, is a step too far. It is being suggested by the Commission without a thorough survey of the effect this will undoubtedly have on our attitude to health care professionals, and to elderly and vulnerable people who often don't have much of a voice in these debates. How would we monitor and police counsellors and supporters, some of whom may turn out not to be as impartial as they appear? (And believe me, such cases would very quickly arise.) As part of the debate, I would like to see much more research done on the question of how we allow doctors not to strive officiously to prolong life and how this is discussed with patients.

This afternoon I am going to a meeting to prepare for a seminar on intervention in terminal care. How much is care allowed to intervene in the dying process - should it be allowed to and at what stages? How involved are patients in decisions? And what is the cost to the person of non-intervention or intervention? What are the boundaries of hospice care?

This is an agonizing dilemma for many caught up in progressive illnesses and for their carers and the professionals looking after them. But please let us approach the question from a wider base. It is true that sometimes the 'good' that individuals desire and the 'good' that we all, as a society, need to preserve the life and safety of the many (including the most vulnerable) can be contradictory. To place death under the gift of human agents and to welcome that as a 'good' for society is a radical departure from most ethical and religious philosophies, codes and teachings.  

There are some very good rapid response comments on the British Medical Journal website which show where many doctors' thinking is on this

http://www.bmj.com/search/assisted%2520suicide 
  

Radiance; a book review

Dan W. Hardy's last book (co-authored and published posthumously by his daughter, Deborah Hardy Ford, the Jewish philosopher, Peter Ochs and his son-in-law, the Regius professor of Divinity at Cambridge University, David Ford) is well worth consideration. Wording A Radiance; Parting Conversations on God and the Church, SCM Press 2010, is remarkable because it records the conversations of a dying theologian with a psychotherapist, a Jewish philosopher and a Christian theologian. The conversations grew out of a pilgrimage to the Holy Land and the book sets out some of Dan's last thoughts on God and on ecclesiology. It is not an easy read. As anyone who knew Dan will realise, he had a way of inventing new theological terms which he then explored from every possible angle and used to throw light on concepts which brought together theology with other disciplines. 

In this book, he speaks a lot about 'abduction', a term he takes from his beloved Samuel Taylor Coleridge to refer to our capacity to be drawn by light and to see more than our perception without this light would allow. This process is associated by Coleridge, always, with God. It produces something akin to Hooker's 'divinely infused rationality' though Coleridge applies the term to moral, affective and somatic aspects of human life as well as to rational and cognitive ones.

Dan, in his pilgrimage to the Holy Land and in his mind (he had a brain tumour), is seeing light and seeing with eyes that lead him away from self engagement to attention to God and others. This leads him to reflect on both the church and the way in which society comes together. He talks about 'measurement' - a way of speaking about human attraction towards God (or lack of it), seeing Jesus' physical presence in Palestine, the scriptures and the eucharist as means of measuring the power of abduction in the world. This is heavy stuff, not easy to grasp per se, but additionally difficult because there is a real sense that Dan was running out of time to say  all that he desired. The insights come thick and fast and are densely packed. The book (partly written by Dan and partly by his three co-authors) brings together personal narrative, a mature and distinct approach to theology and a mystical sense of the relationship between life and death, or at least of the sensibility of someone who is caught between the two.

Transcendence, Ripon Cathedral
The Eucharist; a means of attraction Godwards

To those of us who learned some of our systematic theology at Dan's lectures on ecclesiology, all this will come as no surprise.  The book is very recognisably Dan at work, in full flow, asking, 'What is is that grows a good, whole human being and a good society?' and finding the answer in his own abuction Godwards.

Friendship

I have just returned from a few days in Aberystwyth where we held my mother's funeral. Mum was in her late 80's and had not lived in Aber since 2004 yet there were over 50 people at her funeral, all with memories to share. I have been so touched by the number of people who have sent messages with memories of both my parents. It was very consoling to return to the place where I grew up and to find that Mum and Dad are remembered and indeed talked about. It set me thinking about the gift of friendship. Mum made friends throughout her life (even in her 80's  she made friends in Nottingham who continued to write to her when we moved up to Yorkshire) and she was still in touch with people from almost every period of her life, going right back to school days.

I was struck by the importance of friendship in old age. So many very elderly people become isolated by circumstance or by loss of hearing, sight, mobility or mental powers. There is often that difficult decision - do you move to be near your children or do you stay where your friends are? And when there is perhaps more time than ever to write and e mail, failing sight or poor memory intrude. Others have no family, no-one with whom they share the memories of youth and middle age.

It was her chapel and friends from church who enabled Mum to stay in her own home in Aber as long as she did - visiting, sharing meals, offering lifts, gardening, taking her to concerts and services, helping with reading and, when she finally did move away, faithfully keeping in touch. Some were older than she was, others much younger. I wonder, do we take enough time to give both the moral and the practical support that elderly members of our communities need? And do we expect to find friendship with those who are much older than us?  

  

Does the Church Make a Difference?

The appointments of our new Rural Officer (Andy Rylands) and a new chaplain for St Michael's Hospice, Harrogate (Revd Dr Jonathan Bowers) were marked by services of Commissioning (at Bolton on Swale, for Andy) and Licensing (at Christ Church Harrogate, for Jonathan), this week. Both were long anticipated and joyful occasions. Reflecting on a very busy week I realise that, since Monday, I have  met medics and representatives of voluntary bodies such as the Royal Agricultural Benevolent Institution (RABI), the Great Yorkshire Show, a university college council and the Citizen's Advice Beareau. I've also agreed to do a role play with NYCC's emergency planning team (I may regret that!) and done an evening's voluntary teaching for a nearby college. Many clergy and many members of our churches would have had a similar range of meetings and projects throughout their week. This demonstrates very practically that the church has been doing  the Big Society for a long time before the government thought it up!, As Archbishop Sentamu reminded us when the first talk of the Big Society was heard, last year, Christians have been doing the Big Society for approximately 2,000 years (as have people of many faiths).

Andy's role is very much about our 'Big Society' commitment to the countryside and rural communities at a time when issues in food, farming, world markets, sustainable living and a shrinking public sector are all putting more and more pressure on small, sometimes remote though resilient communities and willing volunteers within them (who probably don't even think of themselves as 'volunteers' though they support their neighbours in all sorts of ways). Andy's background with the Yorkshire Dales National Park, his track record in identifying issues and forming partnerships and his theological interests will be put to great use in helping the rural churches serve their communities and in communicating the challenges of rural living to the national church and the various policy-making bodies. He will be out and about meeting people and getting 'inducted' over the coming weeks. For more information see

http://www.riponleeds.anglican.org/press_290.html (for an introduction to Andy)
http://www.riponleeds.anglican.org/news-353.html (for news about his Commissioning at Bolton on Swale)

Jonathan's role at the Hospice is, I believe, very much about showing a compassion that bears influence beyond the walls of the hospice. He will work with the other staff to be there for those whose life is nearing its end and to ensure that their unique story is honoured, the pain eased, peace, reconciliation, acceptance and hope discovered. Jonathan brings much practical and academic experience which will be used in and beyond the immediate hospice as St Michael's seeks to reach more and more people who need care near the end of life. Or to be there for anyone who has suffered a bereavement through the Just B counselling service. At his licensing, last night, we reflected that one of the things a hospice does is to symbolize the importance of compassion in a society which is often too busy, too self-obsessed and too risk-averse to value and provide the simple things the dying need - time, attention, kindness, a chance to still contribute and hope for this life and beyond.

'For the love of God is broader
than the measure of our mind,
and the heart of the eternal
is most wonderfully kind.'

See http://www.saintmichaelshospice.org/

Sometimes we, in the church, get it right in terms of service in our communities, sometimes we get it badly wrong. Sometimes people notice, sometimes they don't, but there we are...and there we have been for a long time ...and there we hope to be, involved in service inspired by Christ's example for a long time to come.

Good wishes to our new Rural Officer and our new hospice chaplain at the start of their ministries in the archdeaonry and diocese!

September Conference

www.simeoncentre.co.uk

The Simeon Centre is a centre for prayer and spirituality at Ridley Hall Theological College in Cambridge. This event looks interesting for those involved in end of life care and associated issues - and accommodation at Ridley is good value. It's right in the middle of the city of Cambridge with plenty of opportunity for sight seeing!

Visit http://www.ridley.cam.ac.uk/  

Assisted Dying.

Last night, Debbie Purdy spoke at the Legal, Medical, Clerical dinner in Harrogate. Debbie suffers from MS and campaigns for freedom from prosecution for relatives who help a loved one, at their request, to an assisted suicide. 92 people in Britain have helped a relative travel abroad to die and some have been charged on their return though as yet none have been prosecuted. Debbie views this as a matter of life and is, herself, full of life, asserting that she can only live her life fully if she knows that, should her pain become unbearble, she can ask for help to end her life and know that her husband will not be prosecuted or end up serving a prison sentence. She feels that, without this assurance, she would have to end her life before she wants to in order to be able to take it without physical assistance from her husband who may then be prosecuted. Most of us cannot even begin to imagine being in this position. Everyone who heard her speak was, I think, both struck by her wonderful liveliness and zest for living and moved by the poignancy of her plight. In 2009 Debbie took her case to the law lords and it was refered for appeal. The result? That the Director of Public Prosecutions was required to publish the facts and the circumstances that would be taken into account in the decision whether or not to prosecute someone for assisting a person in an act of suicide. As the law stands, anyone who is found guilty of 'aiding, abetting, counselling or procuring' the suicide of another can be sentenced to up to 14 years in prison.

Debbie's argument is that, because the suicide rate is relatively high among those with progressive debilitating diseases, more lives would be saved by removing prosecution for, particularly, counselling in connection with suicide. She claims that at present doctors, health care professionals and clergy are too constrained by the law and many will not even talk to patients about suicide. She believes therefore that people end their own lives who could in fact be reached and helped by counselling and an honest discussion about suicide. She pianted a vivid picture of the silence that meets those in great pain and fear about their desire to do something to relieve the intolerable situation they find themselves in.

There was an interesting discussion after her talk. This is an ethical dilemma which is truly beyond human wisdom to fathom. It is seemingly impossible to find a law that both protects from intolerable pain and protects from exploitation and abuse of the vulnerable. It is also very difficult to know when an individual has reached an irrevocable decision - there are huge risks of minds being changed and mistakes being made about someone's intentions. Even when there is something like a living will, it is often far from clear when a person has reached the point at which it should be enacted.

Like Debbie, like all of us, I am influenced by my own experience. I nursed for 9 years and I remember patients who clearly wanted to end their lives and who told relatives and staff that they could no longer bear the pain they were in on a daily basis for weeks and months. I know that in a few cases medicine does not have the capacity to control pain. I have suffered from a very painful condition (endometriosis) myself which can temporarily reduce you to feeling that you would do absolutely anything to escape the pain. But I also remember people who begged not to be rescusitated or who said they wanted to die and clearly meant it, only to move to another point in their disease where they fervently thanked God (or the medical staff) that they had not died. I have seen that people with chronic progressive disease, people with accute (very severe but not permanent) disease and frail and very ill elderly people have different vulnerabilities and need different kinds of help, care and protection. And who is to make judgements in all these cases? It seems to me that wherever the law comes down on the spectrum of preserving life at all costs or allowing or assisting death, mistakes will be made. We will not get it right in every case. Medics already have a variety of approaches to the impossibly difficult delineations  between not preserving life and allowing or assisting death. 
  
What I found very insightful in Debbie's talk was her insistance that doctors, nurses, counsellors, lawyers and clergy must be able to have honest conversations with patients about intolerable pain and other symptoms, about what suicide would involve and about how their disease will progress. There must be freedom to explore whatever the person wants to explore without fear of being reported and prosecuted. Some doctors seem to do this anyway. Others avoid the difficult area of what suicide would mean and the dreaded area of 'too much pain' because of where it might lead. Yet Debbie pointed out that being able to talk about these things was sometimes precisely what enabled people to want to live rather than die. I also agreed with Debbie that clarity in law about what is and what isn't going to lead to prosecution for relatives is important.

However, I think that the law has to maintain the utmost vigilance and there has to be the possibility of prosecution for any kind of coercion towards suicide. I also do not want to see the law changed in any way that requires medical staff to assist death directly; the notion that a doctor or nurse might under certain (even very controlled) circumstances deliberately end life changes the entire patient/medic relationship. It puts health care professionals in the position of making impossible judgements and puts patients in the position of not being able to trust the motives of those who should unconditionally be caring for them. Palliative care and more research into how to avoid prolonging life when this is not wanted seem to me to offer a way forward. However, even as I write this, I can think of patients I have nursed whose conditions and whose suffering make me question what I write. 

I come down in my own judgement in a place where the law errs on the side of stringent protection of life but is exercised in a way that allows for the greatest possible compassion and leniency for those who have been caught up in these terribly difficult places. There must also be extensive training and support for professionals who find themselves having to accompany patients on these kinds of journeys.Twenty five years after leaving nursing, I still have the names and fates of patients etched on my memory because they didn't have a good or easy ending no matter what we tried. Patients, relatives and staff have to be able to talk honestly to someone and even say, 'Perhaps we made a mistake, perhaps we didn't get it right, perhaps you didn't get it right for me,' and to know that there is humane understanding and forgiveness for the extreme places they find themselves in from time to time. 

A very sobering topic and not easy to know how to write about (or even whether to write). But Debbie communicated a love of life and her whole demeanour was that of someone living the gift of her life to the absolute fullest extent possible. And her message was, I think,  'please talk about it.'