At the age of 19, I had not yet known anyone with cancer. No-one in my own family circle had ever been diagnosed with cancer and I had no experience of being alongside people with such a diagnosis. I was truly a complete novice! Yet I clearly remember that shift on my very first ward placement, when I discovered that one of my patients had just been told he had lung cancer. All I wanted to do was to get to him as soon as possible. I remember coming out of the office after the nursing handover as we changed shift, and I watched, perplexed, as the staff nurses hurried by that patient’s bed. It looked to me as if they didn’t want to speak to him. Maybe they didn’t know what to say? Maybe they just had to focus on the drug round and planned to speak to him later? I myself had no idea at all what to say either, but I just felt drawn to that gentleman and I pulled up a chair and told him quite honestly that I had just heard the news of his cancer diagnosis and wanted to see how he was coping and feeling at that time. I knew that I was far too inexperienced to be able to know the answers to any of the questions he might have, but still I wanted to give him the chance to talk. I told him this and it didn’t seem to matter to him. He just needed to talk. He appreciated my honesty. And I realised that ‘having the answers’ is not always that important. People want human connection and honest compassion more than answers.
That incident stayed with me and I reflected on it a great deal. I think I knew at that time that I would one day specialise in caring for people who have life-limiting illnesses. It was what I was meant to do. In fact, I honestly believe that palliative care nursing is not an area you ‘end up working in by accident or by chance’. I believe that it is something you feel called to do; I believe it is a vocation. It certainly is for me. I have now been nursing for 25 years and 17 of these have been with a clear focus on palliative and end of life care.
Similarly, people don’t just ‘end up’ working with homeless people. It is an area that one is either drawn to….or not. I have definitely been drawn to this area. I have worked directly with homeless people in two voluntary capacities over the last five years or so. I have worked as a night-time Street Pastor in Warwickshire and I have also worked as a nurse volunteer at a hostel for homeless people in Worcestershire. Both of these positions brought me into direct contact with homeless people and stirred a deep compassion in me for the very specific struggles they face.
In 2013, near the end of my MSc Advancing Practice studies at Worcester University, it’s no wonder I chose to explore palliative care for homeless people as the subject of my Masters dissertation. Palliative care for marginalised groups has been on the agenda for a few years and I found myself wondering ‘what happens to homeless people who are dying?’ and also ‘what does palliative care for homeless people even look like?’.
I can’t imagine what it must be like to be homeless and dying. Home, to me, represents love and safety and security. And in my work as a palliative care Clinical Nurse Specialist, I regularly support people who choose to die at home. But what about dying people here in the UK who don’t have a home? What happens to them? …..What’s their experience? I knew I would choose to explore this as the focus of my research project. I read many books and articles on the subjects of homelessness and palliative care for homeless people and I eventually decided to explore the perceptions of hostel staff on ‘hostel-based palliative care for homeless people’, as this is something that the Department of Health had been endorsing in 2010, and very little had been written about it.
As part of my project, I spent the next few months interviewing members of staff at homeless hostels across three neighbouring counties, analysing and interpreting their information. In fact, a total of 37 case studies were discussed, involving homeless people with a wide variety of palliative and life-limiting conditions.
The results were fascinating, astounding, heart-warming, enlightening and also in parts, quite disconcerting.
The study clearly revealed that there is still a good deal of work to be done in terms of making high-quality palliative care truly accessible for homeless people. Hostel workers in this study demonstrated remarkable resilience, compassion and creativity in the face of extremely challenging end of life situations, and they genuinely cared about the residents with whom they have built trusting family-type relationships. In addition to this, they already work to promote and advocate dignity and choice, and these findings clearly DO support the Department of Health suggestion that hostel workers are highly appropriate people to support a dying homeless person. However, with enhanced collaborative working, with improved access to (accurate and up-to-date) medical information and with clearer lines of communication between health professionals and hostel workers, homeless people who are dying in the UK would be more likely to have a voice that is heard; to be offered more choices regarding care options, and finally to be treated with the same dignity and respect that the rest of the population has come to expect at the end of life. The following statement by Collier in 2011 sums it up really: There is a need for ‘flexible, boundary-blurring professionals’ to collaborate and plan palliative and end of life care services for this vulnerable, marginalised population.
I am therefore now presenting this research at national conferences, hoping to inform, inspire and encourage those who commission, plan and provide palliative and end of life care services for homeless people in the UK. I gave an oral presentation at the National Hospice UK Conference in Liverpool in October 2015 and I will be presenting again at the Palliative Care Congress in Glasgow in March 2016.
St Richard’s Hospice has already forged links with homeless shelters in the Worcestershire locality and is exploring new and innovative ways of engaging with a wide variety of marginalised groups of society.
Wendy Webb, Clinical Nurse Specialist.
For more detailed information please read Wendy’s in the International Journal of Palliative Nursing in May 2015.