Homeless people are dying without dignity | Caroline Shulman
The number of people sleeping on London’s streets has doubled since 2010. Figures released last week showed that 2,700 people were sleeping on London’s streets in the last quarter.
Rough sleeping is the side of homelessness that we see on a daily basis, but homelessness extends far beyond this. It includes people who are living in hostels, squatting or sofa surfing. Our research, released on 4 July, has, for the first time, explored in detail how terminally ill homeless people are supported when they are approaching the end of their lives.
Over 18 months we spoke to homeless people and to frontline staff working across health, housing and homeless services in London. We found vast inequalities in access to appropriate care, with seriously unwell people often living in hostels that struggle to meet their needs as their health deteriorates. The result is often repeated unplanned and emergency hospital admissions in the last months, weeks or days of life. This can be very distressing, particularly for people who fear hospitals.
Hostels are supposed to provide temporary accommodation - they are not designed to meet the needs of seriously or terminally ill residents. As a result, huge burdens are placed on hostel staff who do their best to manage with minimal support and very limited resources.
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Part of the problem arises from the unique care requirements that arise from being terminally ill and homeless. Many homeless people die young from conditions such as advanced liver disease, often complicated by mental health problems and/or drug and alcohol issues. But where hospices and care homes tend to house residents who are frail and vulnerable, behaviours associated with substance misuse pose a challenge, so they are not generally given access to these services.
As a result, we found that many terminally ill homeless people are living in homeless hostels where huge burdens are placed on hostel staff who do their best to manage with minimal support and very limited resources.
So where should homeless people with terminal illnesses be cared for?
The answer is not simply moving these residents. When providing end of life care the patient’s wishes are paramount. For some homeless people, their hostel is their home, and they want to stay in this familiar space, even when they are very sick and dying. Instead, hostel workers need additional training and support, and health and social care services need to be prepared to go into hostels to provide care where the person feels most comfortable. This might include social services providing personal care, such as for people who are incontinent or unable to wash themselves, and medical professionals, including palliative care specialists, providing support to the hostel staff and residents around medical and emotional issues. It’s a complex issue and there are legal issues - for example around storing and giving medicines, especially in a hostel where many other residents have an opiate addiction - but innovation is needed.
In other cases some homeless people find hostels too busy and overwhelming when they are ill, and would value a calm and peaceful space. Many hospices struggle to care for people with drug and alcohol issues, whose behaviour can be challenging. These patients may need a specialist space. It could also help the many homeless people who need extra care after leaving hospital after serious illness. Pathway has helped one hospital to hold a pilot, which really helped patients.
Homeless charity St Mungo’s is piloting a scheme tackling this issue. Niamh Brophy, is their newly appointed dedicated palliative care coordinator. She says that this new role allows residents with serious health concerns the opportunity to choose their treatment, the chance to reconnect with loved ones, and the possibility to die in a dignified, comfortable way in a place of their choosing.
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Everyone has a right to appropriate care and support at the end of their lives. For people who are homeless, this is not yet a reality, but these are the types of solutions which will help us to overcome that.
Dr Caroline Shulman is a GP specialising in homeless and inclusion health for Kings Health Partners and Pathway, and a honorary senior lecturer for the Marie Curie palliative care research department at UCL.
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