‘Safe Passage: A Global Spiritual Sourcebook for Care at the End of Life’ edited by Mark Lazenby, Ruth McCorkle, and Daniel P. Sulmasy (Oxford University Press, 2014).
This is an ambitious book, and timely as it is published just as some believe we are entering the third wave of palliative care (Cellarius 2014). As the editors themselves recognise in the introduction, the protégés of Saunders, Murray-Parkes, Kübler-Ross, Balfour Mount et al. (the founders of the 20th century palliative care movement) are themselves now retiring. How can we then continue to safeguard the global advances that have been made in this field, not simply in medical expertise and access to opioids, but in maintaining an environment where people can indeed continue to live and grow until they die?
For those of us in the UK who are witnessing this transition, there is concern that some of the founding principles of holistic care that Cicely Saunders advocated as an antidote to the bio-medical model are now under threat because of the importation of the business model into health and social care. That ringing phrase of Saunders’ (1976) ‘You matter because you are you…’ encapsulates the essence of compassionate person-centred care, getting to the heart of the meaning and purpose of this work. Fostering compassionate relationships that help us to identify meaning and purpose in our lives is ultimately what spiritual care (at any time and in any place) is about. However, all this is notoriously hard to quantify and can easily be overlooked by systems that demand we measure care as an output. Therefore a book that highlights the significance of spiritual care at end of life, offering itself as an international resource, should be potentially welcomed as a 21st century counter-blast to the current reductive discourse.
The significance of this work is endorsed by the contributions of key authorities in this field: David Clark, Christina Puchalski, and Mary Vachon are just some of the eminent thinkers and practitioners represented here. Nevertheless, it is aimed not just at professionals who work in end of life care (that is caring for people who are judged to be in the final year of their life) but also the people themselves who are at that stage, as well as families and friends alongside them. It is, the editors’ claim, a book for all of us.
The structure and style of this text is warm and accessible, presenting in the first unit historical perspectives on the development of end of life care from around the world, helping us understand the similarities and differences that have evolved from the legacy of Saunders et al. The second unit offers beautiful and evocatively written case studies that are responded to by expert voices from a range of religious and spiritual traditions, exemplifying different aspects of practice that support a ‘Good Death’. This might be a familiar thanatological term for some readers, but the book seems to deploy it assuming that it will be understood universally everyone will know how the Good Death might be constituted. However, as the book develops, it becomes clear that this concept is implicit in the over-arching metaphor of a ‘safe passage something that can be effected in many ways; for example: transitions from curative to palliative treatment, from palliative to end-of life care and then from dying to dead (or moving to an afterlife). It is therefore pleasing to note that distinctions are made between and within social groups and belief-systems, and offers perspectives from both Sunni and Shi’a divisions within Islam, indigenous narratives from the Marshall Islands, as well as the views of African Independent and Pentecostal Churches.
This diversity offers a salutary reminder of the multiplicity of modes by which spirituality in end of life care may be addressed. At the same time this multi-vocality is set alongside objective clinical and ethical criteria presented at the beginning of each case study. This allows us to meaningfully evaluate spiritual care, saving us from a slide into relativism. So often when discussing this topic with clinicians one is met by statements such as ‘Well, spirituality is different for everybody – it’s all very personal…’. To which the answer is ‘Yes – and no’. The danger of clinicians falling into the trap that spirituality is fundamentally a private language game that cannot be accessed in public contexts is that it can leave the clinician feeling helpless for want of knowing what to say when the situation seems unspeakable. Moreover, it may leave the patient and family hopeless and isolated. This book expertly clarifies the “no”, carefully delineating the ethical, clinical and religious basis for action to be taken by clinicians and for an understanding of that action by lay people.
However. Yes, there is – to my mind – a significant ‘however’ here: in a book that purports to take a global perspective on spirituality, the majority of the contributors come from the U.S., as do the editors, and I believe this has tended to skew the interpretation of ‘spirituality’. A starting point with students of this topic is to attempt a delineation of spirituality and religion, in order to get past the conventional form of ‘spiritual assessment’ as a tick box in which one enters a religious denomination or nothing at all. Those of us in the UK cannot be complacent about this: we need to continue to clarify what is entailed in the spiritual aspect of healthcare and champion its ethical significance.
Over the years I have noted that much that has been published in the States on this topic tends to conflate religion and spirituality, perhaps because in a health system that is dominated by private business, the only viable form of collective resistance to a drive towards the “bottom line” is to appeal to another traditional authority: religious discourses. What falls through this safety net, though, are the forms of spirituality that are experienced and expressed outside of traditions; be they formal religions or indigenous spiritual belief systems. These established paradigms have created scripts and recognisable rituals around the transitions between life and death that may allow us to find an ultimate meaning at those points. This book helps the reader to understand how these meanings can be appropriately supported and attended to. What it fails to address explicitly is the spiritual needs of those people who no longer feel they want or can have access to these traditions. The title of this book ‘Safe Passage’ gives us a clue: yes, it indicates the transition from curative to palliative treatment, or the acknowledgement that you or your loved one is now at the end of their life. But it also strongly implies that spiritual care as aiding ‘safe passage’ entails helping the dying person leave this life for some form of post mortem existence. For those who do not believe in an afterlife, what can spiritual care address in these circumstances?
This is where the ‘…it’s all very personal…’ raises its head again. In educating people about spiritual care, we need to hold onto objective features of what this entails to encourage an evolution of secular language around issues of meaning, purpose, connected-ness, even transcendence, and in the context of clinical and/or ethical practice. If we can work on this, then we are not abandoning people in existential suffering, the dying and those they love, because we cannot name it in religious terms and they may not want to name it as spiritual.
Reviewed by Dr Kate Powis, a lecturer and researcher based at St Helena Hospice, Colchester (UK). She is the leader on a module examining the role of spirituality and compassion in palliative and end of life care as part of a BSc in palliative and end of life care. Students are nursing and allied health professionals drawn from a range of settings. Her own background however is in philosophy and social science, with a particular interest in psychoanalytic perspectives and the role of the humanities in accessing and expressing the “inexpressible”. Other teaching and research interests are: existential issues in facing death, children and bereavement, dementia and the ontology of personhood and the challenges of compassionate care of the vulnerable.
Correspondence to Dr Kate Powis
Cellarius, V. 2014. The Third Wave of Palliative Care. Journal of Palliative Care. Vol. 30 (4) : 287 – 291
Saunders, Cicely. 1976. Care of the Dying: The Problem of Euthanasia. Nursing Times 72, no. 26 003–1005.