People experiencing homelessness experience some of the worst health outcomes in society and frequently die young. They face many barriers in accessing services which can be connected to previous traumatic experiences, poor mental health and/or substance misuse. Many people experiencing homelessness die unsupported in undignified situations. Advance care planning and the involvement of palliative care services is rare.
Palliative care is not just care and support at the very end of life. It can occur alongside active treatment and should be considered for anyone with a life limiting condition. A palliative approach aims to improve the quality of life and death for individuals by supporting their physical, emotional, social and spiritual needs holistically.
Pathway Fellows Dr Caroline Shulman and Dr Briony Hudson have developed a programme of research and implementation work over a number of years exploring challenges to palliative care access and routes and mechanisms to address these unmet needs.
In collaboration with St Mungo’s, Marie Curie, University College London and Coordinate My Care, and supported by Julian Daley, a Care Navigator for Pathway, the team spoke to a range of professionals, frontline staff and people living in hostels or attending day centres. They identified a range of challenges and barriers preventing people experiencing homelessness from receiving high quality palliative care.
“It was really important that we talked to everyone about this. Not just doctors and nurses and people working in hostels, but to people who’ve lived on the streets and in hostels, who know what it’s really like.”
Julian, Care Navigator and homelessness Expert by Experience
The research highlighted inequalities in palliative care and the growing concern that many people experiencing homelessness are dying in unsupported, unacceptable situations. Key barriers to high quality trauma informed care and support at the end of life for homeless people included:
Lack of choices and services
There is a lack of choice around trauma-informed places of care that will support people experiencing homelessness who have high levels of health and care needs, including places they can be supported until the end of their lives. This is a particular problem if they are too young for a care home and/or have addictions or mental health problems. This often means people with significant health problems remain in hostels or temporary accommodation as their health deteriorates.
Frontline homelessness staff often unsupported
Hostel and other frontline homelessness workers are trained to help people move out of homelessness. This might include supporting people to engage with health and addiction services, around living independently, or with preparation for employment. It is not their role to provide the intimate personal care that many seriously ill people require, such as washing and dressing or dispensing medicines. However, many hostel staff are presently having to support people with high needs, without adequate support from health and social services.
Uncertainty of when to involve palliative care services
For many illnesses that are common among people experiencing homelessness (such as liver disease), knowing when someone is approaching the end of their life can be hard. The last weeks, months or even years of someone’s life may be punctuated by episodes of severe rapid deterioration resulting in a hospital admission, followed by some degree of recovery. It can therefore be difficult to know when the end of life is approaching. Drug or alcohol use and limited contact with health care services can make it harder still. Many people experiencing homelessness may benefit from palliative care, but this is often not considered currently, particularly if they have a condition from which they could potentially recover.
Fear of discussing death
People from all professional groups found it difficult to talk about death and future care preferences with people experiencing homeless. This was partly because of the young age of the people involved. Professionals also feared triggering or re-traumatising people who were already vulnerable or using substances to self-medicate. They worried that people might lose hope of recovery or feel that they had been given up on. They were also concerned that discussing death could increase drug or alcohol use, if people turned to those substances to cope.
As a result of this initial work, the researchers made four key recommendations that could help improve support for people experiencing homelessness with advanced ill health.
Recommendation: Parallel Planning
In the context of uncertainty and considering the importance of not removing hope, the approach of ‘Parallel Planning’ – ‘hoping for the best but planning for the worst’ – can be helpful when supporting someone to think about their preferences for the present and future. The goal of conversations using this approach is to explore what ‘living well’ means to that individual and consider what would help them to have the best possible quality of life for as long as possible. In view of past trauma, this needs to be done extremely sensitively, often starting with an exploration of their insights into their illness. The content of the discussion should be led by the person.
This toolkit provides some resources that could be helpful in opening up conversations about preferences for future care.
Homeless Palliative Care Toolkit
Recommendation: Work together, multi-agency meetings to support care planning
In order to provide responsive, trauma-informed person-centred care towards the end of life, professionals of all disciplines working with people experiencing homelessness need to work together.
One way of achieving this is establishing regular review meetings to discuss people whose health is deteriorating or who frontline homelessness staff are concerned about. Frontline hostel or outreach workers may know their clients best but often need support from other professionals. The meetings could be attended by representatives from a range of services as well as the person’s key worker.
Within these meetings ways to support the person in line with their wishes could be discussed, leading to shared understanding and realistic parallel plans.
Recommendation: Reach out, increase in-reach into hostels and day centres
Many people affected by homelessness with advanced ill health remain in hostels. Until alternative places of care are available, greater in-reach into hostels from health and social care services is needed to support both hostel staff and residents. In reach into hostels could help with:
- Identifying people whose health is a concern
- Having conversations with residents about their health and about what living well means to them
- Supporting the development of care plans
- Optimising pain relief and other symptom control
- Increasing access to social services package of care and NHS Continuing health care funding
- Training for front line staff
- Bereavement support for staff and residents
Recommendation: need for greater provision, access and choice
There remains a need for a range of options including a bespoke service providing 24-hour support for people who are homeless and dealing with serious health problems, for which we need to continue to advocate.
Learning from putting some of this into practice
Subsequent work linked community palliative care teams with hostels. In this work, palliative care nurses and social workers received 2-day training around some of the factors around homelessness and supporting people with multiple and complex needs. Following this training, these palliative care professionals undertook regular in-reach into the hostels (one day a month) in which they provided support and training to hostel staff and discussed, and where relevant, met with individuals that the hostel staff were concerned about. They provided additional support around advocating for support from other professionals including adult social care, and concerning equipment such as hospital beds. This resulted in more people who could benefit from palliative care support being identified, with an increase in referrals into palliative care and other services, increased frontline staff knowledge and confidence about what they should expect from services, improved staff support and morale, and planned death within the hostel where that was someone’s wish.
Join our National Network
In partnership with Marie Curie and York University, we are running a free, online network that meets monthly, to bring professionals from all disciplines and people with lived experience together, to share what is needed to improve access to high quality palliative care for people experiencing homelessness.
This network is an opportunity to:
- learn from each other
- share best practice, research, challenges and successes, and
- connect with others with similar passion for improving care for people who may benefit from palliative care support
Click here to hear about and connect with a number of regional projects around the country working on palliative care and homelessness.
Developing interprofessional communities of practice
The team are also working on other ways to increase multi-professional multiagency support for this population as outlined below.
Intervention to optiMise Palliative caRe for peOple with liVed Experience of homelessness (IMPROVE)
IMPROVE is an intervention used to develop locally owned communities of practice to support an improvement in palliative care support for people experiencing homelessness. It was jointly funded by NHSE, the Oak Foundation and Marie Curie. Facilitators (who attend two half-day trainings) use an online platform containing videos and facilitation guides to chair eight sessions. The sessions are designed to bring together people from a range of professional backgrounds who are working within the same locality, to share learning, experience and discuss challenges, in order to enhance the provision of high-quality care to people experiencing homelessness who have advanced ill health.
To express an interest in the training and see the latest session dates, click here. You can also email homelesspalliativecare@mariecurie.org.uk with any questions.