Compared with the general population, people experiencing homelessness are twice as likely to have a long-term health condition; yet, they are frequently excluded and overlooked when it comes to healthcare provision (Care Quality Commission (CQC), 2020). People experiencing homelessness also tend to die young, often in their 40s, without access to palliative care support (CQC, 2017). I still find this statistic shocking every time I read it, and it prompted my masters (Webb, 2015) and PhD research (Webb et al, 2020) in this niche subject.
The findings of my doctoral research revealed that homeless people fear needing care more than they fear death itself and so would rather ‘drop dead suddenly’ than receive a palliative diagnosis and need personal care (Webb et al, 2020). However, without a palliative diagnosis, it is difficult for people experiencing homelessness to access traditional palliative care services and support. They tend to fall through the cracks in the system, which means that they often die in hostels or in emergency departments. Worse still, some die in shop doorways and on park benches, alone and with very little dignity. Further, finding it difficult to trust people, those experiencing homelessness need to feel comfortable with caregivers or helpers at the end of life (Webb et al, 2020). They want to be somewhere that they can truly be themselves, where they do not feel judged or misunderstood. Simply put, when approaching the end of life, people experiencing homelessness are more likely to want to be cared for in the familiar hostel setting (Webb et al, 2020).
However, hostel workers report feeling ill equipped to support residents whose health is clearly deteriorating (Webb, 2015). Hostel residents who have advancing ill health, and may even be approaching the end of life, are often between 30 and 50 years of age, have no formal palliative diagnosis and are not considered to be housebound. As such, they usually fail to meet the criteria for district nursing services, and hostel workers are left struggling to access additional care and services for their residents, particularly around personal care, continence issues, skin care, symptom control and psychological support (Webb, 2015).
Meeting the end-of-life care needs of this marginalised population is uniquely challenging and may require collaborative teamwork between community nurses, hostel staff, mental health teams, substance misuse teams and hospice staff (Webb et al, 2018). It will require a creative, courageous, multidisciplinary approach in order to prevent these people from slipping through the gaps in care provision. This approach should have the hostel as the hub of the compassionate community; it should be a multidisciplinary, ‘can-do’ approach that permits some imaginative and necessary rule bending, one that encourages and supports the development of peer support workers (with lived experience of homelessness) who are trained in the basic principles of palliative care support.
Community nurses, with their adaptable and resourceful attitude, are in a pivotal position to drive change and innovation in this area of end-of-life care, and to educate and support hostel staff and peer support workers, thereby making a positive contribution to the care provided to homeless people in their locality who may be approaching the end of life. I invite community nurses to be bold and step up to the challenge. I hope that they are stirred to proactively work towards closing this inequality gap and bring their skills, knowledge, compassion and expertise to bear on this important health and social justice issue.