We spoke to Trinity Clinical Nurse Specialist, Jo Harray, and Medical Consultant, Amy Hawkins, about the unique needs of people who are homeless and in need of palliative and end of life care, and how Trinity is working to improve the care they have access to when they need it.

Amy – The challenges to supporting someone who is homeless can begin before we meet them. It’s our job to support our patients’ social, psychological, and medical needs but the needs of people who are homeless can be especially complex. Life expectancy is significantly shorter for homeless people and it can be harder to predict the course of the conditions they die from. This means it can be hard for both health care professionals and keyworkers to know when someone is approaching the end of their life.

Jo – When a patient is homeless, there are unique social and logistical challenges. For example, patients living in hostels often don’t have space for much equipment in their room, or they share a communal bathroom. Many people don’t have access to a phone or a place where they can make a private phone call. Literacy levels can be low so printed information is not always helpful. The logistics of a person’s eventual physical decline, even in terms of just walking to the bathroom, or receiving a call from their CNS, is much more difficult to manage.

Amy - Then there is the added complexity of substance misuse (including drugs and alcohol). It can be particularly challenging if someone is dying and needs injectable medicines in their home environment which may be shared with people with substance use disorders.

Jo - Psychologically too, there is often a greater need because of people’s history when they are homeless. Perhaps when they have tried to get support in the past, they have had bad experiences and felt labelled or judged for example. That sort of experience can make someone dislike or distrust health care professionals. So, for us to be involved is a positive step, but sometimes you’re swimming in the dark because patients are reluctant to have investigations done. We’ll still work alongside the GP, but we’re not always sure what we’re dealing with.

On top of that, the reasons that someone is homeless might have roots in mental health or perhaps addiction. There are also studies that show a link between traumatic brain injury and homelessness, so it’s usual for people to be dealing with something secondary too."

Amy - Trying to build trust, especially if someone has had negative experiences in the past, can be challenging. And it’s even harder if people don’t have a network of family and friends to support them.

My approach is to just keep going back every time I’m in the hostel. I pop my head in and ask how they’re doing, even if I’m visiting someone else. I think it helps to build up that consistency and presence. I also have to remind myself that I never know everything about someone’s history and that sometimes hospital teams haven’t told a patient their condition is serious and that they could die. I’m careful not to push too much but to provide an open space where I can answer and ask questions. Jo

Most of our homeless patients are referred to us through a hostel. Sometimes they are in their 60s or 70s with a 40-year history of homelessness. If they have been living in a hostel for a long time, they class it as their home and often don’t want to go anywhere else, so we tend to see more people in hostels than in hospital or Trinity’s inpatient unit.

What more can be done to improve?

Jo - We have worked hard to have good relationships with keyworkers at the hostels we work closely with. These relationships and the training and education we offer has led to referrals, which is great because it means more people can benefit from our care.

A lot of our work around homelessness is supporting hostel staff with education and training and providing the expertise of a multi-disciplinary team (MDT).

We have recently been talking about bereavement support too because often they’ve had close relationships with these people for a very long time so it’s important to recognise that.

Amy – Thanks to good education and training we are making inroads with some hostels, but we want to do more so we can reach people in need at others. People who are living on the streets or ‘sofa-surfing’ informally are far more difficult to reach. 

Over the years the traditional model of hospice care has adapted to encompass conditions such as dementia and frailty. And in the past year alone, all of us have been challenged to evolve our models of care. So, there is precedent for challenging the fixed idea of how things should be done.

We need to begin with recognising the unique needs of this group and building relationships and trust, not only with homeless people, but also staff and keyworkers supporting them. For example, the fact that people know Jo in the hostels she works in and that they will approach her and trust her really helps.

Jo – I have a real compassion for these people who have had difficult lives and on top of that have often not been treated as well as they should have been in health care settings in the past.

Like everyone, they are entitled to respect and have a right to specialist palliative care – and by that, I mean the whole MDT.

They need access to all of the professional support – from therapies, to psychological and medical care. Some people with long term illnesses can be considered “non-compliant” if for example they have an alcohol-related disease, but don’t stop drinking. It shouldn’t make them ineligible for services and it shouldn’t mean they are given a label and denied access to care. It’s important we work together as an MDT to support these men – and it generally is men that we see at Trinity – to give them a good death.

Amy – As health care professionals we often make assumptions about someone’s level of engagement with their care. Just because someone doesn’t like going into hospital or fears having an MRI scan doesn’t mean they won’t potentially benefit from psychological or nursing support. This is why individualised care is so important - not making assumptions about someone’s needs based on the fact they’re homeless, getting to know the person and trying to unpick what they need and how we can best support them.

If you are working in a hostel or any other setting with patients receiving palliative or end of life care, you can order any of our information materials online here, or find out more about current education and training opportunities here.