Homelessness, substance use and dying with dignity

With multi-agency working coordinated by a dedicated homelessness hospice team who strongly advocated for individualised care, Jane was able to have a dignified ending.

Alison Colclough, St Luke's Hospice 

People experiencing homelessness face many barriers to care including stigma, difficulties with engagement, discrimination and inflexible services. Similar barriers are experienced by people using illicit substances.

When I first met Jane and Tommy they were staying with Jane’s aunt in her upstairs spare box room. Both were in their early 40s, and had been together for 10 years.

They were registered as homeless having left their own flat in another part of the country to “come home”, following Jane’s diagnosis of a very aggressive brain cancer – they felt they would need help from family and assumed they would be rehoused quickly.

The couple were sharing a single bed, and Jane struggled to use the stairs as the cancer had seriously affected her mobility; she also sometimes had seizures. Both were on a methadone prescription, with Tommy still using substances at times.

The issues were obvious - the accommodation was unsuitable and they needed a safe place of their own. Their care also needed to acknowledge the substance use which had mainly taken place in the past, but still happened occasionally.

Nationally, homeless people often fail to access palliative and end of life care. St. Luke’s Hospice has a small service that works with people experiencing homelessness who may have a palliative diagnosis, so they can access the care and support they need.

The hospice homelessness workers have two main roles: to advocate strongly on behalf of the patients they are working with, and to coordinate care to ensure they access all of the services available to them.

After a great deal of work between the hospice worker and the local housing association, Jane and Tommy were offered a ground floor flat. The hospice benefits worker ensured they accessed the correct level of benefit support; she also found a charity that would pay their first month’s rent and go on to provide a specialised chair and other items they could not have managed without.

Because Jane’s mobility was worsening quickly, the specialist therapies team made regular visits which ensured she could stay at home until just before she died.

There were issues with some services. It was difficult getting a GP to visit as they felt the couple were not housebound, even though it was almost impossible for Jane to leave the house without help. There were occasions when professionals made assumptions – such as one thinking Jane was drunk. She never drank alcohol, and the hospice workers had to ask the professional if they would make the same assumption of someone else with brain cancer who wasn’t on a methadone prescription.

As Jane became more dependent on Tommy, he proved to be a wonderful carer, but he could not have managed without the specialist palliative therapies team. Jane also received support from the local district nurse who had worked with patients who used substances. She made sure there was a locked box in the home to store controlled drugs for when they were needed.

Tommy was incredibly dedicated, but as Jane deteriorated it became increasingly difficult for him to care for her at home. This was her preferred place of care, but her condition eventually made this impossible and she agreed to be admitted to the hospice ward.

This had the added difficulty of Tommy’s daily methadone collection being in a different town to the hospice. With his permission, the hospice worker contacted his drugs worker to switch this to a chemist that was nearby. This meant he was able to stay with Jane until she died peacefully at the hospice.

Tommy struggled after Jane’s death, and his use of substances increased. Although the hospice worker stayed in contact for several months afterwards, it became apparent that he wasn’t able to accept the help on offer to him at that time.

The services involved in Jane’s care and Tommy’s support overcame the challenges of finding housing, financial disadvantage, stigma, discrimination and safe prescribing in the presence of methadone. With multi-agency working coordinated by a dedicated homelessness hospice team who strongly advocated for individualised care, Jane was able to have a dignified ending.