Journey into the Spiritual Dimensions of End of Life Care
My personal journey of discovery into the field began a few months ago, with a visit to a children's hospice in Cambridge. I anticipated some personal difficulties with the visit: having children of my own and having worked with severely disabled children whilst at university made me anxious about what I would encounter – and about my response to the work I was about to undertake.
Taking a deep breath, I crossed the threshold and entered the building.
It was not what I had expected.
It wasn't the clinical, hospital-style environment I had presumed, but rather a comforting, beautiful space, with children's artwork scattered on the walls. The staff were open about their work and showed me around the personalised bedrooms, the family care provisions, the play-area and all the various areas used to support the children (such as music and art therapy, and the hydro-pool). I was amazed by the high level of care and love that seeped through every corner of building – it was a life-changing experience.
Since then, I have visited a number of hospices, and I have been continuously amazed by the people I meet, and by the environments I have walked through. My focus has been on the spiritual care provisions within hospices, which has typically lead me to the chaplaincy (or spiritual care) team and allocated sacred spaces (sometimes called the sanctuary, haven or quiet room). These people and places occupy what is often called the space of liminality – an area of human existence when life is in a transitional phase, where we are in an apophatic state of the continuous present. It is a part of the human condition that we all encounter at one time or another, but which is perhaps most prominent when faced with our own mortality.
For me, it is a privilege to meet those who occupy and work in such a space. They are remarkable people, with a depth of compassion that I have not encountered in any other field of work. It is difficult to fully explain these experiences, but I hope that the feeling can be conveyed through the following example – a story that will stick with me forever.
Whilst visiting one hospice, I was fortune to meet a variety of spiritual care leaders, including the Christian vicar and Muslim imam. The imam has sadly passed away now, but his experiences of delivering care to all people, from any faith background, from Islam, to Christianity, to Sikhism and to those with no religious affiliation, has stuck with me. When I met him, he had some serious health considerations, but he was determined to continue his work, for as long as he could. He wanted to be there for people, regardless of their background, to support them during that time: after all, we are all human. He told me a story about one patient who was in the hospice who said that he didn't have any religious affiliation, but was happy to chat. They got talking about all sorts of things, from family, to football – nothing that would definitively tick the "spirituality" box, but topics that the person wanted to discuss. They became fast friends, with the imam visiting him regularly for a cup of tea and a chat about various life experiences. Then, one day the man asked if it would be okay for the imam to perform his funeral. Although he was not a Muslim, the imam said it was an honour to be asked. A few hours later, the man sadly passed away. Without question, the imam helped the family make the funeral arrangements and a week or so later, performed a non-religious funeral ceremony in his memory: as he had requested.
For the imam, the care he provided was not about responding to the needs of a specific faith or belief: it was about responding to the needs of the person. To be there for them, in their time of need and to fulfil their last requests, as best possible.
His story is only one of many that I have heard in every hospice I have visited: every member of staff contributes to this remarkable type of holistic and personalised care that completely focusses on the person's needs and wishes at the end of life. Their level of compassion cannot be underestimated: and it is something that I believe that we can all learn from.
Dr Angela Quartermaine is the Senior Executive Officer for Public Education at the Woolf Institute. Her current work includes supporting and developing resources for End of Life Care.
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