Continuing our series about palliative care in the context of being ‘homeless’ which may include sleeping on the streets, living in a hostel or ‘sofa surfing’. We look at the implications of providing palliative care and bereavement care for people who are homeless and how the hospice and palliative care community can offer appropriate support.
This week’s contribution comes from Wendy Ann Webb, an Advanced Nurse Practitioner in Worcester and a volunteer nurse at Birmingham City Mission for people experiencing homelessness in Birmingham, UK. Now applying her experiences to her PhD, she explains the background to a longer research article published in the International Journal of Palliative Nursing.
“If you’ve got faith, you’d be fine, but if you haven’t … then you’re in trouble.” (Homeless PhD research participant who says he has NO faith).
Having worked for many years as a palliative care nurse, I fully appreciate the importance of holistic, person-centred care; care that considers the specific priorities and unique concerns of the individual. Palliative care seeks to prevent and relieve pain and suffering; whether physical, psychosocial or spiritual (World Health Organization, 2018). As such, spiritual care, which addresses highly subjective, existential issues such as purpose, relationships, vision, belief, hopes and fears, coping and making sense of suffering, is an integral component of holistic palliative care.
Now as a Doctoral student in year three of my PhD research exploring end-of-life priorities within the UK homeless population, I am intrigued by early PhD findings. Spiritual concerns (including questions of faith and life after death, and broader issues of forgiveness, meaning, reconciliation, and coping) appear to be important for the people experiencing homelessness who participated in this study, sharing what matters to them at end of life. While a few participants said that they had no spiritual beliefs and no faith or religious affiliation, the vast majority expressed belief in God or a higher being. Several shared stories of spiritually significant experiences and many openly talked about the comfort that their spiritual beliefs or their faith provides.
Feeling marginalised and judged by society, one homeless participant told me that ‘God doesn’t turn away people.’ Another told me, with an obvious sense of relief, ‘God forgives even evil people don’t he really?’ Still another participant, whilst talking about his daily struggles on the streets, simply stated ‘you have to believe in summat [something] …’
I look forward to sharing the deeper findings of my research in the coming year. However, these early PhD findings prompted a narrative literature review of what is already known about the spiritual concerns of people experiencing homelessness at the end of life. This review was published in September 2018 and can be accessed here.
I am currently working specifically with people experiencing homelessness. I am employed in a paid capacity as an Advanced Nurse Practitioner within General Practice, and in a voluntary capacity with Birmingham City Mission, where I run a clinic offering footbaths to Birmingham’s homeless community. However, I will always be a palliative care nurse at heart, and providing holistic, person-centred care has always been my priority. As such, evidence of spiritual and psycho-social distress within my patients has always concerned me. In fact, years ago, as a student nurse, I made a conscious decision not to shy away from the excruciatingly difficult questions that dying patients sometimes ask; the questions that are almost always impossible to answer. Questions that, nonetheless, need to be voiced. These are the deeply existential questions that often just ‘hang there’ unanswered, bearing witness to the distress that the patient is feeling. Sometimes the questions reveal confusion, sometimes deep despair, sometimes glimmers of hope. They always point to what matters deeply to the patient at that time.
I have learnt from experience that such questions – the ‘why is this happening to me?’ type questions, or the ‘Nurse, am I dying?’ questions whispered during the small hours of the night shift – are difficult to hear. It requires a certain level of courage and humility to sit with another human being who is voicing such deep existential distress. Yet, I consider that it is so important to do so. If a patient gathers the courage to voice their pain, we at least owe them the dignity of being heard and of having their distress, pain or confusion acknowledged.
I have often witnessed kindly colleagues brush over the difficult, unanswerable question with a platitude or even a light-hearted joke. This is usually a well-meaning attempt to lighten the mood and bring hope where there is distress or despair. However, I find that such responses usually thwart what might have been a quietly cathartic moment of sharing humanity; a moment of deep compassion.
I have come to realise that most of the time, patients don’t want or expect answers to their questions, they just want human compassion: someone to be alongside them as they try and make sense of what is on their mind and in their heart. Often, we simply need the courage and humility to sit and listen.
World Health Organization (2018), Palliative Care Factsheet. Available at: http://www.who.int/news-room/fact-sheets/detail/palliative-care (Accessed 13 November 2018).
Read the full article in the International Journal of Palliative Nursing
This post relates to a longer article, ‘The spiritual concerns of people experiencing homelessness at the end of life’ by Wendy Ann Webb, Theresa Mitchell, Paul Snelling and Brian Nyatanga, published in the International Journal of Palliative Nursing, 2018 September 2:24 (9): 428-435. doi:10.12968/ijpn.2018.24.9.428.
Follow Wendy Ann Webb’s work on Twitter or ResearchGate.
- Twitter handle: @HomelessEOLC
- ResearchGate: https://www.researchgate.net/profile/Wendy_Webb
- Read an earlier post from Wendy Ann Webb on the EAPC blog.
Look out for more posts in this series on the EAPC blog. We hope to publish more posts about Palliative Care and Homelessness in the future so please look out for announcements.