Significant changes are needed to improve the coordination of care for homeless people and ensure they have equitable access to palliative care, writes Dr Caroline Shulman. Innovations in London and Canada offer ways forward.
In the UK, the number of A&E visits and hospital admissions are four times higher for homeless people, while primary care services are underused. Homeless people often die young and experience high symptom burden at the end of life, yet palliative care service use is limited. Discussions around advance care planning rarely happen and many unplanned deaths in hospital occur following emergency admissions.
Not surprisingly, there is growing concern that many homeless people are dying in unsupported, unacceptable situations.
With colleagues at the Marie Curie Palliative Care Research Department at University College London, Pathway, St Mungo’s and Coordinate My Care, we recently published research* that has for the first time explored from all perspectives how terminally ill homeless people are supported in the UK when they are approaching the end of life.
Over 18 months, we spoke to homeless people, frontline staff (from hostels, day centres and outreach teams) health and social care, and housing providers in London about the challenges of supporting homeless people with deteriorating health and how to improve care.
Our research uncovered vast inequalities in access to appropriate palliative care, with seriously unwell people often living in hostels that struggle to meet their needs as their health deteriorates.
We observed a real conflict between the recovery-focused nature of many services and the support needs of these often young people with deteriorating health.
We also found that homeless people with advanced ill health rarely receive adequate care and support in the community. This results in repeated unplanned, emergency hospital admissions in the last months, weeks or days of life, which can be very distressing.
Gaps in existing systems
For some homeless people, their hostel is their home and they want to stay in a familiar space, even when they are very sick and dying. Others find hostels too busy and overwhelming when they are ill, and would value a calm and peaceful space.
But hostels are not designed to provide end-of-life care. They don't have the resources, and staff don’t have the palliative care training or input from in-reach services to deliver high-quality, person-centred care to residents.
As a result, huge burdens are placed on staff who do their best to manage with minimal support. Sadly, the lack of facilities providing palliative care, including respite and a place to die in comfort, were the most significant gaps identified.
Part of the problem arises from the unique care needs of homeless people with a terminal illness. Many die young from acute conditions often complicated by mental health problems and/or drug and alcohol issues.
Homeless people do not fit the profile of the majority of care home patients where one of the admission criteria is usually to be over 65 years of age. Behaviours associated with substance misuse also pose a challenge for hospices and care homes, where many residents are frail and vulnerable.
What needs to happen to improve care
Providing adequate support for homeless people as their health deteriorates is complicated and requires an integrated approach between healthcare services and the wider system, such as housing, social services and the charity sector. Hostel workers need additional training and support, and health and social care services, including palliative care specialists, need to be prepared to go into hostels to provide care where the person feels most comfortable.
Homeless people could benefit from a special space tailored to their needs, which could act as a step up from a hostel and a step down from hospital. Having access to services which not only understand the complex needs of homeless people but can also offer adequate 24-hour support for people with serious illnesses, including those who are dying, would be a significant step forward. Such a model already exists in Canada in the form of a shelter-based hospice.
We also found innovative attempts to address this extremely challenging problem in London. The hostel provider St Mungo’s has a palliative care coordinator who provides end-of-life care support and training for staff, and links hostel staff and residents with other services. Part of the care coordinator’s role also includes the development of multidiscipinary working groups to coordinate care for sick residents.
Great changes are needed to improve coordination of care and support for homeless people and to ensure they have equitable access to palliative care.
This call for change was given additional impetus in May when the Academy of Medical Royal Colleges issued a joint statement with the Faculty for Homeless and Inclusion Health calling for more joint working, more inter-disciplinary collaboration, and proper levels of investment in services, to improve healthcare for homeless people.
Dr Caroline Shulman is a GP specialising in homeless and inclusion health for Kings Health Partners and Pathway, and an honorary senior lecturer for the Marie Curie Palliative Care Research Department at UCL. Follow her on Twitter @carolineshulman @MarieCurieEOLC @PathwayUK
*The research, published in Palliative Medicine, was funded by the Oak Foundation and supported by Marie Curie, Pathway and Coordinate My Care.
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