Our chaplain and spiritual care lead at the hospice is Andrew and he has kindly written a brief blog about what spiritual care in the hospice entails. He has also included some useful questions and phrases one can use to explore with patients, about what really matters to them in life and in death.
Since the recovery of the Hospice tradition, chaplaincy has played a significant role in palliative care. Whilst much has changed over the last 60 years with regards to organised religion in the wider UK society, a recognition that there is a spiritual dimension to human (well) being is an essential component to genuine hospice care. Foundational to the revival of palliative care was the ‘Total Pain / Total Care’ model with the quadrilateral of physical, social, psychological and spiritual dimensions. Undoubtedly simplistic, this is nevertheless a useful starting point in understanding care needs at the end of life, especially if we regard them not so much as discrete features but as a combination of what makes us human.
Modern chaplaincy stresses the distinction between religion and spirituality. Official bodies such as WHO, NHS and Hospice UK are clear that everybody has a spirituality, and some people express this through religion. A succinct, universal definition of spirituality is impossible and not necessary but the concept includes amongst:
what gives our lives ultimate meaning
our deepest essence, our inner life and our core values
connections to others, the ground of our being and to bigger stories
what energises and animate us and gives us purpose
notions of beauty, wonder, joy, transcendence and interiority
words such as hope, comfort, faith, peace, love, forgiveness and worth are part of the spirituality lexicon
belief in a Deity is not a requirement for recognising the spiritual element in people
A document from NHS Scotland states helpfully:
‘Spiritual care …. responds to the needs of the human spirit when faced with trauma, sadness, ill health ... it includes the need for meaning, self-worth, self-expression…it begins with human contact connection, compassionate relationship and moves in whatever direction the patient requires’. (NHS Scotland 2009)
When facing the task of dying well these factors can have great significance and it follows that spiritual care is of vital importance in a Hospice context. A chaplain can be regarded as the specialist in spiritual care but everyone has a role in providing it, not least in recognising this dimension to care and being prepared to listen to patients as they explore this aspect of their lives following appropriate prompting.
Hospices emphasise that dying is so much more than a medical event. We could image and scan someone down to their smallest molecular parts and even dissect their remains in minute detail and be no closer to understanding the essence of a person. Rather, encountering the knowable mystery that is a person, is at the heart of palliative care and acknowledging a spiritual dimension helps us to achieve this broader, more holistic, understanding of end of life. Spiritual care also encourages hospice staff to greater self-awareness. If everyone has spirituality then that includes healthcare staff and if we are to work well in a hospice, then it is important to encourage self-reflection as to our own beliefs, values, motivations and the story(ies) we live by. As part of this process spiritual care encourages the recognition of mortality. Not just the universality of death but the limitations that come with living – our frailty, our finitude, the restrictions on what we can control – these are to be accommodated rather than denied. Chaplains are well placed to encourage this kind of reflection.
Good spiritual care at its simplest is about enabling conversations about what matters most to a person as they live and die with their diagnosis. This isn’t always easy and in a death avoidant society we have to be wary of displacement activities or collusion with patients – such as focusing too much on medical matters. Various tools have been developed to open up these conversations- such as FICA, HOPE and PC-7. These are of value but it is possible to facilitate these important conversations by asking simple questions such as, ‘where have you found joy in your life, ‘what brings you comfort’, ‘for what are you thankful’, ‘is there any unfinished business to attend to’, ‘any need for forgiveness’. It is remarkable how open people can be with hospice staff and the greatest of privileges to hear people share what matters to them as they discuss these questions. It is not unusual for patients, when they feel it is safe to do so, to raise their own questions such as, ‘Why is this happening to me?’, ‘Isn’t this unfair!?’ and ‘what have I done to deserve this?’ Such questions are not easily answered, if at all, but it is important to allow space for them to be expressed and explored.
There are instances when patients experience spiritual pain or existential distress. This can occur when life has lost all meaning, when isolation has become overwhelming or there is a real fear of dying. It can also arise when previously deeply held beliefs no longer give comfort or a once cherished faith seems hollow. This can be very difficult for health care staff to deal with, not least as we can feel ineffectual and there is the temptation to seek refuge in a focus on medical needs. However, with a little courage we can ‘own’ our limitations and still offer accompaniment as a person walks through the darkest valley. This keeps open the possibility of reconnection and re integration on the other side of the disconnection and disintegration a patient is experiencing. It cannot be overemphasised that in our desire to fix situations, to be useful, that listening well is tremendously important. Listening IS an intervention. Listening IS doing.
Having made a distinction between spirituality and religion it is important to recognise that for some people their organised belief system is vital to them as end of life approaches. It is important to establish if there are any beliefs that are important to a patient and essential we try and meet these needs. Chaplaincy is key in this but in a multi-faith society all staff ought to have a basic understanding of rituals and practices. ‘Multi-faith resource for healthcare Staff’ produced by NHS Scotland is a good resource though of course patients and their loved ones are the best source as to what is important.
As a profession Chaplaincy has developed in recent decades. It is recognised and regulated as an allied health profession with a number of professional bodies such as the College of Health Care Chaplains and most relevant for hospice work, the Association of Hospice and Palliative Care Chaplains. Furthermore there are a number of training courses from certificate to masters level that further enhance standards and competencies.
However by way of concluding this short piece , the essence of good chaplaincy and spiritual care goes beyond knowledge and skills to concern a quality of personal presence, about, ‘who they are in themselves and their ability to offer their presence – their being-with –which may in itself help a dying person to be hopeful’. (Spiritual care at the end of Life’ S Nolan p111)
‘NHS Chaplaincy Guidelines 2015 – promoting Excellence in Pastoral, Spiritual & Religious Care’ (NHS England)
HOPE model for spiritual assessment - Anandarajah and Hight 2001
FICA model for spiritual assessment - By Dr Christina Pulchalski 1996
Development of the PC-7, a Quantiﬁable Assessment of Spiritual Concerns of Patients Receiving Palliative Care Near the End of Life. - Fitchett et al, 2019
Multi-Faith Resource for Healthcare Staff – NHS Scotland. Accessed via www.nes.scot.nhs.uk
Spiritual Care at the End of Life. The Chaplain as a ‘Hopeful Presence’. Nolan S, Jessica Kingsley Publishing, 2012