Fit for the Future? Healthy Hospices.

'As the environment of care again threatens to fail too many and too often, hospices will need to unite in their thinking and develop a strong voice individually and collectively.'

Dame Clare Tickell

Chair, Commission into the Future of Hospice Care

Dame Cicely Saunders

I've just been reading the report of the Help the Hospices Commission Future Ambitions for Hospice Care: Our Mission and Our Opportunity. A section headed 'Why hospices will need to change' brought home to me just how drastically our society is set to change between now and 2050. This part of the report is really a strong wake up call to us all in the voluntary sector. 

The number of people dying each year will rise steeply from 2016. In England, between 2020 and 2025, it will rise by 4,000 per annum and, between 2030 and 2035, by 8,000 per annum. In 2010 there were 1.4 million over 85's and deaths in this group represented 36% of all deaths. By 2035, there will be 3.5 million over 85's and deaths in this age group will represent over 50% of all deaths. But, even more telling is the statistic that shows that whereas in the 1960's (when the hospice movement really got going) 12% of the population lived alone, by 2033, 40% of all households will be single occupancies. This means that 11.3 million will be living alone and 1.4 million of those who live alone will be 85 or over.

At the other end of the age spectrum, the number of children living with life-limiting conditions is growing dramatically. A study undertaken between 2000 and 2010 indicated that there were double the estimated number of children with such conditions partly due to better survival rates following very premature births and partly due to better treatments for life limiting diseases.

The really good news, of course, is that many of us are living far longer and we are healthier while we live. However it is increasingly true that the end of life, whenever it occurs (but especially if it occurs after 80), is more likely to be beset by multiple illnesses and cognitive impairment. There were 800,000 diagnosed cases of dementia in the UK in 2011; this is due to rise to 1.7 million by 2050. Already hospices are seeing a marked increase not only in the number of patients who suffer from types of dementia but also in the number of primary carers who suffer from early stages of the disease.

The report also highlights the fact that families are less cohesive than in the past and consistent day to day care by relatives is therefore often difficult to organise. More people will be working longer and retiring later and will find it increasingly difficult to care for both elderly relatives and grandchildren. This will increase the vulnerability of many who are very young, very old, ill, frail, confused or cognitively impaired. The report asks where, as a society, do we propose that such people find good, safe, kind care never mind the expert palliative care to deal with complex symptoms?

'How we care for the most vulnerable at the most vulnerable of times is a measure of our compassion as a society and securing this compassion for the future is a vital concern....' writes Dame Clare Tickell, the chair of the Commission.  

This is a challenge to us all when we consider that a very high proportion of hospice and palliative care staff will retire over the next 10-15 years and hospices already report that they are struggling to replace those who leave and to find replacements for volunteers. A significant rise in the need for care is therefore projected at the same time as a diminishing pool of professionals and volunteers who can provide that care. 

The report highlights the need for hospices to work in partnership with other agencies in their locality in order to develop systems of care that will work and so this caused me to wonder what significant contribution churches might make to the future of care for the dying. Traditionally, churches have been profoundly involved in ensuring care for those whose lives are ending. How far is this still true in our death-averse society? here are some suggestions.

Resources 

The  statistics in this report (which mirror the demographic projections available from most government departments and local authorities) strongly suggest that churches should be looking at ways to provide more resources for ministry among the elderly and to focus what resources there are more effectively. This needs to happen at from grass roots level up to national level and the figures in reports like the Help the Hospices Commission report should give us very very serious pause for thought. Perhaps a good starting place for such discussions would be for churches to survey those who provide and benefit from care in their own areas and to nominate people to be responsible for developing plans.

Families

In all our thinking and planning as churches we need to be realistic about the shape of family life. The fiction that most families consist of 2 parents with 2-4 children and 4 grandparents is quite simply that, a fiction. Mid-life individuals and couples who are caring for family members need different patterns of church life from those that have traditionally worked.

Communities

One of the most precious things churches ought to be able to bring to the multidisciplinary table is our experience of community - and by that I mean small and mid-sized communities of prayer, study, fellowship and mutual support. Nearly every church has at least one of two of these. Some of the new church movements do this well and, of course, religious (monks and nuns) have been practising this for centuries. There is a need to apply these insights to old age and to think about how groups of people can form themselves into mutually supportive communities who will undertake the journey of increasing years together.

Memory

What does faith mean if you have dementia - which at its most extreme wipes out memory? What does it mean to be a part of the people of God and yet not to be able to remember their story - or even celebrate your own story? 'Do this in remembrance of me,' is, after all, at the heart of Christian faith. There is something about memory being located, in such instances, in the God who created and remembers us and in the whole community who love and remember us. In such circumstances it is the sacred duty of the community to express care and to be the person's 'memory'; only if this happens can the individual retain any sense of being a cherished human person.

Vocations

Churches are in a great position to promote vocations to end of life care and hospice care. This is urgent and important work. There are many disciplines that contribute to end of life care from finance to medicine, from management to nursing, from the para- medical professions to social work.

The report deals at length with the challenges to be faced. There are also some very positive aspects to the demographic changes ahead. 

Firstly, they provide us with a reminder that we should be celebrating the gift of longer, healthier lives. The quality of life for many of us, well into our 70's and early 80's will be something our grandparents could only have dreamed of. What better way to say 'thank you' for my gift of life and health than to put aside a little bit of energy to ensure that those who are nearing the end of their lives receive the care they need? This can be a pleasure and a joy and might involve us in using our talents in new ways or even discovering new ones. 

Secondly, the changes might point us to see that the hospice movement has much to teach about championing change (the report highlights the fact that it has shown itself to be a very adaptive movement) and about multidisciplinary work. Hospice staffs are highly multidisciplinary teams, well used to co-operative working and with a recognised short timescale between idea and implementation. Members of the different disciplines have, in order to achieve their objectives, to put aside suspicion of the ways other professionals work, to co-operate as much as possible, to overcome communication problems and to refuse to behave hierarchically. 

Thirdly,the changes in the population age profile might prompt us to recover a respect for and an interest in the wisdom of the elderly. In a society in which death is almost the last taboo, this might be the opportunity we all need to allow stories of death to resurface and to shape the way we live our lives for good. The ability to think about and face death does all kinds of positive things to the freedom with which we live our lives - it helps us to overcome fears, it produces compassion, it teaches us to savour the present moment and to value those things that are transitional.  People nearly always remark how much joy and laughter there is in a hospice. 

Lastly, as Dame Clare Tickell points out, this is a wake up call to us all to recover the compassion that most of us hope is at the heart of our society. Compassion means to 'suffer with'. The Greek word that is used of Jesus 'having compassion' expresses a sense of 'gut wrenching'. You see someone's need and it effects you physically so that you are impelled to get up and do something about it. Let us not ignore the predictions of the changing shape of our society until it is too late to reach out effectively to those who are most vulnerable - the sick and the dying.

For further information go to

Help the Hospices Commission

ehospice

Meditation on Forgiveness

I've always found Stephen Cherry's books and insights very helpful. He blogs at Another Angle and I was fascinated by his recent post  The Railwayman - Implications for Forgiveness here   In it, he looks at forgiveness from what I would describe as a 'narrative theology' slant. This avoids the trap of putting all the emphasis on the individual alone, though it emphasises the responsibility of the individual to behave in certain ways perhaps more clearly than many other theologies of forgiveness. He quotes an excerpt from his book Healing Agony - Re-imagining Forgiveness,

'Whether or not you can forgive is not all down to you. Your role is to play your part in the story that unfolds with honesty, integrity, generosity and courage.'

published by Bloomsbury here 

Forgiveness, he argues, is not simply an act of the emotions or the will, it is about the interaction of the individual who has been wronged with the developing situation; as he or she takes their place in the unfolding narrative, they themselves are changed by the situation and they come to hold out opportunities for change to others. Whatever happens at a deep level is achieved by persistent integrity which eventually bears fruit at the intersection of these sometimes complex narratives. So forgiveness is better seen as a process in which the people involved travel a lengthy journey, perhaps beginning from a place where forgiveness seems unimaginable and gradually moving to a place where it becomes something to think about and work for - something that begins to be meaningful and that finally, over time, becomes a reality. The Railwayman offers an example of such a story in which the threads of different lives slowly become interwoven in ways that lead to a place of forgiveness that would have been inconceivable at the start.

Last week, I also came across a blogpost by Marie Fortune on the Faith Trust Institute website here The Institute works to end sexual and domestic violence. Fortune discusses the problem of confusing forgiveness with passivity in the face of evil or injustice. She takes the example of Nelson Mandela's life. In his life, she sees forgiveness lived out as a 'strategy which no doubt required great discipline'. Having refused all offers of conditional release from gaol until the South African government was ready to begin talking about dismantling apartheid, Mandela awaited his moment; once the conditions for justice were beginning to emerge, he moved. Instead of calling for vengeance, he and Desmond Tutu set up the Truth and Reconciliation Commission as a mechanism by which truth about what had happened came, at least in some measure, be revealed.

'Forgiveness is about remembering the past in order to strengthen our efforts not to repeat it.'

Remembering (perhaps in the sense of 're-membering' - seeking to reconstruct the fragmented bits of the past in narrative form) and truth-telling lead to a sense of justice that does not look necessarily to extract recompense but which can set a person free into the release of forgiveness. Even imperfect or incomplete justice can begin to create the conditions that make forgiveness a real possibility. The attempt to speak and hear truth facilitates this.

In Mandela's story, we see forgiveness as a process that involved one man at the same time it involved a whole nation - a highly complex political and personal narrative where forgiveness meant not only giving and receiving at a personal level in ways most of us find hard to imagine, but motivating a nation to do the same. It's too early to say for sure whether the process has been truly successful in allowing whole generations of the South African nation to forgive. There are some who see the current violence in South African society as a warning sign that the truth telling did not penetrate deeply enough into the nation's psyche. There are others who postulate a degree of transference from the need to confront expressions of racial hatred by violence to sexual violence. 

In our society, forgiveness is often trivialised and romanticised. It is always very costly, always calls for discipline, almost always takes far more time than we expect. Preaching on the Suffering Servant (Isaiah 53) in Advent, on the Sunday after Mandela died, I was struck by how closely the persona of the suffering servant fitted Mandela's circumstances.

'A shoot shall come out from the stump of Jesse and a branch shall grow out of his roots." The coming Messiah is described as a tiny, fragile new branch growing out from an old stump - something that could so easily be snapped off and broken. Mandela spent 27 years in various gaols - he could so easily have had his spirit crushed, he might never have recovered his physical strength, he might have become intractably bitter. 'But the spirit of the Lord shall rest upon him - the spirit of wisdom and understanding, the spirit of counsel and might, the spirit of knowledge and fear of the Lord.' Mandela's story is one of sheer discipline over a great deal of time, of profound discernment and of waiting (it must have seemed endless) to grasp the moment for change when it came. It is a story, like the story of ancient Israel and the Suffering Servant, about political storms, exile and seemingly impenetrable disaster upon disaster with an individual caught in the cross current in a way that would destroy most men and women. But Isaiah 53 also has that very strong metaphor of the peaceable kingdom at its heart - the impossible-to-imagine kingdom where leopard and lamb lie down together and the child plays over the hole of the deadly snake. There is something here about forgiveness, reconciliation and the peace that proceeds only being possible through the lives of those who submit to the storms of injustice, unfairness and outrage that life throws at them and those around them absolutely refusing to allow that the storm itself is the whole story. The Servant of the Lord does not 'judge by what his eyes see or decide by what his ears hear but with righteousness he shall judge the poor and decide with equity for the meek of the earth.' Mandela, the Suffering Servant and those of that illustrious company enter so fully into the narrative of their time and circumstances that they are able to let the storm do what it will to bring change both to them and, through them, to their people and time.

I am indebted to Stephen Cherry for his reminder about forgiveness as the story of more than just the individuals who are in conflict. The story of the Suffering Servant is rich ground indeed for understanding the complex processes by which God's Spirit turns situations of grave conflict into opportunities to grow health and peace from the seedbed of painful, challenging, non-vengeful truth-telling. It reminds us that theologies of the atonement should be understood less as explanations for the wrath of God and more as explorations of the way in which evil leads inexorably to death without the costly intervention of God's Spirit in the lives of people committed to truth-telling and peace.    
   

The Twittering Classes

What are the dangers of Twitter? One is certainly that you can spend too much time in a scattered way.  On a bad day, I read 8 or 10 articles recommended on Twitter in the early morning, mostly forget about them by lunch time, and then come home from work with my head full of a jumble of half-formed ideas which it's difficult to pull together in writing because I'm tired and also thinking about Sunday's sermon or a lecture I have to prepare. I suppose, though, that the fact all these loose thoughts have been around in my head while working means that I may have been making connections and bringing to bear the experience of my life and work in the service of what the health service and church now like to call 'reflective practice.' It's important that every discipline and walk of life contributes to online discussion - and when 'discipline' is too grand a word, we may put it like this - we need an understanding of what's 'trending' or at the top of people's minds. Pastoral practice may then want to intrude with a thought or two about what's not at the top of people's agenda, but ought to register somewhere.   

So, I ask myself, 'What is the purpose of twittering?' The answer will be different for everyone. You have to find your own way to use it. I've developed themes (no, not corresponding to hash tags, but themes in my mind to which I am committed and which may not be immediately apparent to other people but which, over time, will come to fruition.) My personal themes are theology, ethics with a slant toward medical ethics, poetry and music, dementia and end of life care, social justice and gender issues. I'm also developing my information-gathering networks and my idea-exchanging networks. 

I haven't yet worked out how to tackle the wealth of political comment on Twitter. It's just too much to digest everyday.

Would welcome thoughts about how to maximise Twitter potential.