Sunday, 26 January 2014

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.

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.

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.

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.

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.

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

ehospice UK

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