Improving access to palliative care for people who are homeless
22 October 2018 | Caroline Shulman, Briony Hudson, Niamh Brophy
The challenges to accessing palliative care for people who are homeless are complex. Our qualitative research (1) highlighted how many people with advanced ill health do not receive support from palliative care services and remain in homeless hostels as their health deteriorates.
In this blog we provide a summary of some of the issues contributing to inequality in palliative care access, an outline of the training and resources we have developed to support hostel staff and our plans to pilot a model of integrated training and support across the UK over the next two years.
Many people experiencing homelessness have multiple needs, often including a combination of physical health, mental health and addiction issues, frequently stemming from difficult childhood experiences and complex trauma. Many utilise health services in a different manner to people who are housed, with care often being crisis-led. Challenges in accessing health care include fear of being discriminated against, difficulty navigating complicated systems and poorly managed addictions. Previous negative experiences with health care providers may also lead to further mistrust of health care settings or feeling uncomfortable in mainstream services.
Uncertainty in illnesses
Many of the illnesses faced by people experiencing homelessness, such as liver disease, are characterised by much uncertainty, with unpredictable disease trajectories. It is therefore difficult to know when someone could benefit from palliative care, how palliative care could support them and where they might be supported. This uncertainty contributes to difficulty recognising the time when someone may be approaching the end of life, and subsequently few referrals are made to palliative care teams.
Place of care
Given these factors, many people with advanced ill health remain in hostels or temporary accommodation, which may not be in their best interests. Hostel staff are not trained to support people who are very sick and often receive inadequate support from health and social care services.
Palliative care services aim to support people in their home environment, where appropriate and desired. For some people, the hostel may be considered their home. Delivering this service requires the recognition that someone may benefit from palliative care, a referral to the service and the ability of the service to respond.
However, there appears to be both a lack of recognition of the role palliative care could or should play in supporting this group, as well as a lack of well-defined referral pathways to community palliative care services for people experiencing homelessness.
Many palliative care providers are inexperienced in supporting people living in temporary accommodation. Supporting someone in this environment comes with additional challenges, including a lack of resources and difficulties around the safe storage of medications that are not usually experienced in a traditional “home” setting. There are also difficulties around pain relief and medicine management for people who are actively using substances. In addition, if in-patient care is needed, hospices may struggle to support people with addiction or mental health issues on an inpatient basis, due to concerns about the impact of related behaviours on other vulnerable patients and their families.
Innovative and flexible solutions are therefore needed to ensure that everyone can benefit from palliative care support, regardless of their circumstances or where they live.
Recommendations from our research
Given the current lack of alternatives, if people are to remain in hostels as their health deteriorates, the needs identified from this research (2) are:
- Earlier involvement of palliative care services: hostel staff’s concern about a client’s ill health should be a trigger for multiagency planning and support;
- Increased support for hostels in the form of in-reach and access to palliative and primary care specialists;
- Training for hostel staff and for palliative and primary care staff around supporting people whose health is deteriorating who are living in hostels or accessing day centres.
How can we support hostel staff?
Building on these recommendations, we developed and evaluated a two-day training package, informed by the End of Life Care Resource pack developed by St Mungo’s and Marie Curie in 2013 (3), which included the following seven modules:
- Identifying Clients (who may benefit from palliative care)
- Person Centred Care
- Shared Care
- Palliative Care
- Bereavement Care
All frontline staff from two homeless hostels attended the training, which they described as useful and relevant. The section relating to self-care, identifying and addressing their emotional needs in relation to their work, was particularly popular.
Three months after the training we interviewed staff again. They described the beginnings of a shift in how palliative care was conceptualised. Steps were being taken to facilitate multiagency meetings within the hostel to discuss “clients of concern”, with the goal of enabling access to support from other services earlier in a person’s illness. This was really encouraging, but it was clear that standalone training was not enough to give staff the confidence to instigate and maintain multiagency meetings and advocate for better support for their clients and themselves.
We found that training can be useful for improving knowledge, confidence, openness and work-related stress for hostel staff around palliative care for their clients. However, one-off training is not enough – particularly with high staff turnover.
In response we have developed an online toolkit (funded by UCL Innovation and Enterprise) to share resources and information. This toolkit will be online soon at www.homelesspalliativecare.com .
The next steps for this project include piloting the roll out of this training and building communities of support for frontline homelessness and health staff. This will include exploring pathways for embedding training in routine practice, through developing links between local palliative care, primary care and homelessness services. This will include on-going support for staff and the promotion of multidisciplinary working. Through training we hope to facilitate flexibility within the recovery focused approach of services, along with recognition of the need for emotional support for hostel staff. We intend to pilot this model across the UK over the next two years.
- Shulman C, Hudson BF, Low J, Hewett N, Daley J, Davis S, et al. End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care. Palliative Medicine. 2017;0(0):0269216317717101.
- Hudson BF, Shulman C, Low J, Hewett N, Daley J, Davis S, et al. Challenges to discussing palliative care with people experiencing homelessness: a qualitative study. BMJ Open. 2017;7(11).
- Kennedy P, Sarafi C, Greenish W. Homelessness and end of life care – Practical information and tools to support the needs of homeless people who are approaching the end of life, and those who are bereaved London: St Mungos and Marie Curie 2013