Alison Colclough, Homelessness Service Lead at St Luke’s Hospice in Cheshire, writes about how they supported Jason, a man with a terminal illness who was experiencing homelessness, to both live well and die well.
People who are homeless and who have substance misuse issues find it difficult and sometimes impossible to access the care and support they need, to enable them to both live well and have a good death.
Homeless single people face some of the youngest deaths; their average life expectancy is 44 years for a man and 42 for a woman. Additionally this group experience a high burden of physical and mental ill health, complicated by a high prevalence of alcohol and drug misuse. Alongside this, perceived discrimination prevents many from accessing health care support.
Jason was 39 when he died of liver failure in 2019. He’d had an alcohol addiction for over 20 years and was a type 1 diabetic. He had been homeless, housed in hostel-style accommodation and eventually a hotel before he died.
Person-centred care
He was referred to the St. Luke’s Homelessness by a hostel. Hostel staff had received training from St. Luke’s, which included the question ‘would you be surprised if this person were to die in the next 12 months?’ and felt he fitted this criteria. The St. Luke’s worker met Jason and they soon established a trusting, therapeutic relationship. Over the next 13 months they got to know each other well, and had discussions around what Jason wanted, both in the earlier part of his illness and the final stages.
St. Luke’s worked alongside Jason to navigate the complexity of health and social care and also to coordinate services. For Jason, the most important thing was to get in and out of hospital as fast as possible when he was admitted for regular abdominal drainage. He was frustrated by waits in accident and emergency, so St. Luke’s liaised closely with the hospital hepatology team and a better pathway was established. The hepatology team were incredibly supportive of Jason and his care, and the hospice and hospital teams found a mutual respect enabling better support for Jason.
Jason was staying in a dry house hostel when he was first referred to the hospice as he had stopped drinking. However, when he started to drink again he had to move to a wet house –accommodation which recognises the choices of individuals to continue to drink. It was imperative that the professionals understood Jason’s choices and remained non-judgemental, while gently continuing to encourage him to seek help when the opportunity arose.
Collaborative working
Unfortunately, the wet house was in another town, meaning his hospital team changed which caused difficulties as they didn’t know him. His St Luke’s worker accompanied him to see his new GP, who offered home visits and direct access to the practice pharmacist when his medication changed. He was placed on the Gold Standard’s Framework register and the District Nurses became involved administering his insulin as he was very forgetful.
At times he was out when the District Nurses called. Rather than discharge him they accepted that this was part of his chaotic nature and would return as planned the next day. This acceptance allowed Jason to receive care that was suitable to him and to the District Nurse team.
He was also referred to a Macmillan nurse who applied for continued health care funding as he was so chaotic with his medications. This was obtained but it was difficult to find a care team who would visit wet house accommodation. His St. Luke’s worker contacted an excellent local care agency who, after discussions with the hospice worker and a very positive home visit from the agency, accepted the referral and a schedule of two, one-hour daily visits. This team proved to be wonderfully person-centred, and the relationship between Jason and the individual carers was fantastic.
Jason needed strong, oral analgesia, and a simple system of a locked box and locked cupboard kept everyone in the wet house safe.
His family remained involved, visiting regularly, and Jason and his mum spoke everyday on the phone. With Jason’s permission the St. Luke’s worker kept her fully informed of any changes.
Dying with dignity
Jason told the St. Luke’s worker that when ‘it was time’, he wished to die in the hospice. He inevitably deteriorated and sadly, when very unwell, was asked to leave the wet house. On leaving here the council placed him in a hotel. His district nurses, carers and St. Luke’s continued to support him there - although it was not easy in this environment. Eventually it became clear that Jason was entering the dying phase. A bed became available at St. Luke’s and he died peacefully with his family around him.
His mum reflected, “It was so dignified and they treated him like a person. I think that was why he liked it there because they treated him so well, they didn’t look at his lifestyle or judge him for that. It made those last few days so special.’’
Jason needed care that was acceptable to him - with hospice input his care fitted with him, rather than the care system expecting Jason to fit to it. Without this approach, his ending would have been very different.
