Chaplaincy in Hospice and Palliative Care

Karen Murphy, Bob Whorton

• Publisher: Jessica Kingsley Publishers
• Year: 2017
• ISBN:
  9781784503291
• Topic: Theologie & Religion
• Subtopic: Religiöse Beratung

Hospice chaplains have traditionally played a unique part in palliative care, providing human compassion and support to help ease life's final chapter. This book thoughtfully tackles the question at the heart of modern hospice chaplaincy: do chaplains have a distinctive role in an increasingly secular society?

A comprehensive look at why and how this work needs to be done, each chapter will be a rich resource for hospice chaplains and anyone working within a hospice multi-disciplinary team. Taking the form of reflections by chaplains and other professionals, they examine the tension between sacred and secular space, explore how spiritual care works in a changing society, and look at what voice a chaplain has within the hospice team.

Essential reading for chaplains, this insightful book reflects on the important work undertaken by hospice chaplaincies and explains why they continue to be a vital resource for end-of-life care.

Part I

LOCATING THE WORK OF PALLIATIVE CARE CHAPLAINCY

1

THEN AND NOW

Dame Cicely Saunders founded the first modern hospice, St Christopher’s, in Sydenham, London in 1967. As an evangelical Anglican, Christian and spiritual values were at the heart of this venture, and the message to each dying person was ‘You matter’. There have been many developments in palliative care since then, but this is still the essential message of the palliative care movement today: each person is unique in the way they approach death, and each person matters. In the following piece by Richard Clarke, Anglican Archbishop of Armagh and Primate of all Ireland, we hear how his wife was cared for in a hospice in 2009, and what spiritual care means in practice. We start with this account to illustrate the unbroken continuity from the beginnings of the hospice movement until now.

RICHARD CLARKE

Living with personal loss

My personal experience of the hospice movement arose in the summer of 2009, when my wife Linda was a patient in St Brigid’s Hospice on the Curragh of County Kildare during the final days of her earthly life. But even to use the word ‘patient’ seems somehow inappropriate, because neither Linda or I, nor our children (themselves both doctors), could have ever felt that another patient is what she was in the eyes of the hospice staff; to be a patient somehow carries the resonance of being an object – an object of others’ care and medical expertise. None of us felt that Linda was regarded as an object, in those days in the hospice. She was a person who mattered hugely to every member of the staff – the palliative care consultant, the medical, nursing and ancillary staff equally. Their sole concern was clearly to make those final days on earth as good, affirming and positive as they could possibly be, and they had the expertise and commitment to make them so.

I believe that we were all overwhelmed, not only by the unfussy and unstinting care that was given to Linda in those days, but also by something more deeply impressive. It was clear that there were no presuppositions as to what the ‘right way’ for people to face death might be. Every person is unique, and how he or she (together with his or her family) will cope with the certain approach of death will likewise be unique. We never had any feeling that we were part of a process, inside a machine that followed certain predetermined procedures. Part of the philosophy of the modern hospice movement is that every person’s psychological and spiritual understanding of the reality that their earthly life is drawing to a close will be utterly distinctive, and that this will be honoured. It can never be emphasised how much it means to members of the family of anyone approaching death that they too are seen as deserving of dignity and unobtrusive care.

As I reflect on my early days in ministry (before many of the insights of the modern hospice movement had been assimilated in Ireland), I well remember that ‘the hospice’ – wherever in the country it may have been – was regarded as a miserable and depressing place by everyone, and not merely by those who were spending their last days on earth there; they even seemed to be physically dark. It may seem strange for a cleric to make this comment, but there was also an atmosphere of overbearing religiosity that did nothing to give any sense of hope or peace! So much has changed. I am personally full of gratitude for the hospice movement. It is so important, in the world in which we live, that there are those who will make the powerful statement – by their amazing actions of care and love for others – that people matter, as much at the end of their earthly lives as at any other time. People are not commodities on a balance sheet. Every person has infinite value. Let that certainty never be denied.

Looking at the history

Spiritual care is recognised as a necessary part of hospice and palliative care. Chaplains have historically been those with the skills, knowledge and training to encourage and support this aspect of a patient’s care. However, our place at the multi-disciplinary table has been, at times, a fragile one. While in many organisations chaplaincy is truly valued, some challenge spiritual care as essential to a person’s well-being at the end of life. In order to bring chaplains together and to strengthen their work, an Association for Hospice Chaplains (later to become the Association for Hospice and Palliative Care Chaplains – AHPCC) was formed, with its original members meeting for an inaugural session in 1988. The aims and objectives of the organisation were described as follows:

•Provide support and fellowship for chaplains caring for the terminally ill and their relatives.

•Encourage theological discussion and training.

•Provide liaison with the church at large and allied organisations at local and national level, especially on an ecumenical basis.

•Seek to maintain and improve standards, pay and conditions for all in hospice chaplaincy.

There followed an enthusiastic response from those in this specialised field of chaplaincy and by 1990 there were 108 members – chaplains engaged in palliative care across the UK. The remit of the association has widened and developed, so that hospice chaplaincy is represented at national and international groups, taking part in conversations that have shaped the vision of chaplaincy as a professional discipline. The significance of the association cannot be underestimated. Chaplains offer themselves to a multi-disciplinary team as skilled and trained people, working to professional standards and competencies (Association of Hospice and Palliative Care Chaplains National Executive 2003, new edition 2006). Judy Davies shares her reflections from many years of experience in palliative care chaplaincy.

JUDY DAVIES

‘What exactly do you do?’ That question, so often asked of chaplains, doesn’t change; but in other ways the world of hospice chaplaincy is utterly different from the one I entered in 1994. It’s important to acknowledge the changes that have taken place over the intervening years, while not losing sight of what remains fundamental to our role.

The changing landscape

At the time when I was being interviewed for my first part-time chaplaincy post, the independent hospice down the road was using the services of a local vicar, who came in on a voluntary basis to see patients and bring Holy Communion. It seemed there wasn’t much discussion about whether the person was suitable; the hospice work simply came with the parish.

From the earliest days, there was great variety in how hospices employed chaplains, ranging from pioneering institutions like St Christopher’s to small independent charities. However, it’s true to say that chaplains were, in general, Christian, and ordained clergy. This was not surprising, given the Christian roots of chaplaincy in general and the hospice movement in particular; but over the years, healthcare chaplains have increasingly come from a wider variety of religious and philosophical backgrounds. This is a logical development, for there has always been recognition within hospice care that people who do not subscribe to a particular religious faith may still find themselves struggling with existential questions, especially towards the end of their lives. The chaplain has a role to support those of any or no faith, and also to facilitate links with religious or non-religious groups in the community so that, when necessary, appropriate people are contacted to provide spiritual care. It’s perhaps a reflection of this broader perspective that many hospices and some chaplains now prefer to speak of ‘spiritual care leads’, or ‘co-ordinators’, feeling that this description avoids unhelpful assumptions associated with the traditional title of chaplain.

Chaplains as professionals

Hospices have always cherished a holistic view of the person as having emotional, psychological and spiritual, as well as physical, needs. It follows that chaplains should be an integral part of the multi-professional team providing patient care. This hasn’t always been the reality, with some chaplains feeling marginalised and undervalued by their organisations. But, generally, there has been increasing recognition that the chaplain’s role is specialist and wide ranging: not only offering one-to-one spiritual care but also contributing to team meetings and delivering education programmes, managing volunteers, supporting staff and working with palliative care patients and bereaved families in the wider community. Hospice chaplains themselves have been at the forefront of professional development, publishing standards, competencies and codes of conduct, arranging conferences for training and mutual support, and working nationally towards the registration of chaplaincy as a healthcare profession.

Yet professionalisation brings its own problems. In an environment of relentless financial pressures and limited resources chaplains, like other healthcare workers, are expected to measure their activities and demonstrate their effectiveness. But there are aspects of the role that defy measurement, where what is most valuable is to provide a compassionate presence, for patients and carers and for the hospice itself. So chaplains need to have the courage to resist a temptation simply to be ‘busy’ as, paradoxically, it is when they take time to slow down, listen and reflect that they are most useful.

From past to present

If in the past 20 years chaplaincy has undergone great changes, there is no sign that this will lessen in the future. The present healthcare environment is a rapidly changing one. Increasingly, people say that they would prefer to be cared for, and to die, at home. While there will always be a need for in-patient units to provide specialist palliative care for those who require symptom management and care at the end of life, and for day units that offer a range of specialist advice and support, community services are crucial in the delivery of end-of-life care. Hospices have always fostered links with their local communities, and many chaplains these days work largely outside the hospice, linking with volunteers and local groups to support people in their own homes. No doubt there will be further diversification in the role as time goes on.

So, amid all these changes, what remains fundamental to the work of a chaplain? I can only say what is fundamental for me. I don’t much care whether we call ourselves chaplains or spiritual care co-ordinators. What matters is our capacity to listen, empathetically and without judgement, to the stories people share with us; and, to do that, we need to be self-reflective, to engage with our own personal story and understand where it belongs in the broader narrative of our faith or philosophy. I am also convinced that professionalisation can only take us so far. It is vital that we are competent in our work; but sometimes the most profound encounters occur when skills are exhausted, words fail and we have nothing to offer but ourselves. In a healthcare world much concerned with measurement, we safeguard and represent the things which can’t be quantified. For fundamentally we are not asked to do, to fix things, but to be with. Dr Sheila Cassidy (1988, p.5) has written eloquently about this in the context of palliative care:

The spirituality of those who care for the dying must be the spirituality of the companion, of the friend who walks alongside, helping, sharing and sometimes just sitting, empty-handed, when s/he would rather run away. It is the spirituality of presence, of being alongside, watchful, available; of being there.

It’s this insight which inspired the hospice movement and which has always been at the heart of palliative care. If as chaplains we lose sight of this, we lose something precious that is intrinsic to our identity and is perhaps the most important thing that we have to offer.

We have noted that in 2017 St Christopher’s Hospice will celebrate its fiftieth anniversary. This is a significant milestone as those involved through the years reflect on the growing recognition of palliative care. An integral aspect of the development has been the place of chaplaincy and spiritual care within palliative care teams. The changing cultural landscape of the United Kingdom requires us to look at spiritual care very differently as we embrace a rich diversity of beliefs and cultural expressions. Chaplains have always been ready to ‘see the view’ through patients’ eyes and to work within the landscape of the spiritual need of the individual. The stance of the chaplain continues to be one of standing firm to one’s beliefs and convictions while being willing to be alongside those who see things differently. The chaplain will experience daily conversations with those who seek out someone who represents a faith they do not have themselves. A patient recently expressed the following to Karen: ‘It helps me to talk to you even though I don’t share your faith. I respect that you believe in something and that gives me confidence in you.’

Chaplaincy has been a constantly changing profession, adjusting to the new norms of society and embracing the necessity to have the essentials in place to maintain good and safe practice. Chaplains tend not to hark back to ‘the good old days’ but keenly embrace the ongoing challenges. Being a chaplain in palliative care is totally different from 50 years ago when emerging palliative care units began to offer services to patients. Chaplains can be proud of all that has been achieved through the persistence of those who led the way, enabling chaplaincy to be well equipped for the future as a modern and relevant profession to sit at the team table.

References

Association of Hospice and Palliative Care Chaplains National Executive (2003, new edition 2006) Standards for Hospice and Palliative Care Chaplaincy. www.ahpcc.org.uk.

Cassidy, S. (1988) Sharing the Darkness. London: Darton, Longman and Todd.

2

WHAT KIND OF PLACE IS A HOSPICE?

Hospices are strange and beautiful places. When Bob was new to palliative care chaplaincy, he was shocked by his first multi-disciplinary meeting in which dying was spoken of in such an ordinary, matter of fact way: hospices are places of truth where death may be spoken of without embarrassment or fear. As we have seen, spirituality has been key from the very beginning – an honouring of each person’s lived experience and the particular cry of their soul have been central to the ethos. Today, however, a hospice chaplain is embedded in a changing organisation. This is a place which needs to attract donations in...