Palliative Care and Homelessness

What is palliative care?

Palliative care is holistic support for people with advanced or life limiting illnesses, focusing on comfort, dignity, and quality of life. It addresses people’s physical, emotional, psychological, social, spiritual, and cultural needs while also supporting families and carers. Palliative care can be provided at different stages of illness, and can occur alongside active treatment. It can sometimes be provided over long periods, and includes clear communication and planning aiming to respect a person’s wishes and choices.

There is often a misconception that palliative care is just for people with cancers, but palliative care can be relevant for anyone with long term conditions. In homelessness services we often see people with a number of different conditions, including frailty at an early age, advanced liver disease, kidney disease or respiratory disease often complicated by substance misuse. Due to barriers to accessing health care and complexity of need, there is often a delay in getting a diagnosis or accessing treatment. This combined with the young age of this population means that palliative care is often not considered when it could be of huge benefit.

End of life care

End-of-life care is a key part of palliative care for people and is for the final phase of life, usually when curative treatments have stopped. Its focus is on helping individuals live as comfortably as possible and die with dignity.

Why is palliative care relevant for the homelessness sector?

People experiencing homelessness often have significantly poorer health, face higher rates of chronic and life-limiting conditions, and on average die 30 years younger than the general population. Many individuals have limited access to consistent healthcare, meaning illnesses are often advanced by the time they are diagnosed. This means that discussions about what's important and what living well means to someone should be woven into support offered to people experiencing homelessness. Over time, palliative and end of life care can then form part of these discussions.

For homelessness services, understanding palliative care helps staff recognise when someone may need additional support, advocate effectively, and ensure individuals are not excluded from appropriate care.

Homelessness services are grounded in recovery, stability, and rebuilding lives. Yet the reality is that there is a significant prevalence of advanced ill health and premature deaths within the communities we support. While it may feel uncomfortable or even counter-intuitive to acknowledge, and some may see palliative care in conflict with the recovery model, it is a necessary and compassionate response to the realities faced by the sector.

How can homelessness services identify individuals who may require palliative care services?

• Open up conversations with individuals about their health and review this periodically, particularly when you notice changes, or following an admission to hospital.
• If you are concerned about an individual, explore their insights around what they understand about their health and illness and discuss your concerns with the wider members of the multidisciplinary team as soon as possible. A concern about an individual’s deteriorating health should act as a trigger for action, rather than waiting for a palliative or terminal diagnosis.

There are some useful tools that can be helpful in identifying when someone may benefit from palliative care. Below are some signs that may indicate an individual is becoming more unwell and should trigger a discussion with their health care provider, based on the SPICT4ALL tool. However, these signs may also point to other, possibly unrelated, illnesses, and does not mean this person is approaching the end of their life:

• Losing weight (unintentionally)
• General physical decline – coming weaker or frail
• Two or more unplanned hospital admissions in the past 6 months
• Withdrawal from social activities
• Someone who is alcohol dependent not wanting a drink (for reason other than a change in their motivation)
• Tiring more easily, or becoming more breathless than usual
• Becoming more reliant on others to do the things they usually do
• Swollen abdomen, particularly if this is new or worsening
• A change in their behaviour or personality.

For more guidance and tools on identifying individuals of concern, visit this chapter of the Homeless Palliative Care Toolkit. This toolkit was developed through a collaboration between Pathway, Marie Curie, UCL and St Mungo’s.

How can homelessness services support individuals to access palliative care?

• Explore concerns early on with a multi-agency team: support individuals to access appropriate services by promptly alerting healthcare professionals to any early signs of declining health. This enables a clearer understanding of their current needs and creates an opportunity to plan for future care, which may ultimately involve more specialised palliative care support.
• Plan ahead to manage potential barriers and challenges: considering an individual’s future care needs, alongside current needs, can be done before a referral to palliative care support.
• Contact the specialist palliative care service in your area: explore what support is available locally – invite someone from the specialist palliative care team in your area to a team meeting to learn about their service, and for them to understand the people accessing your service. Consider setting up regular multi-agency meetings.
• Help individuals with referrals to GPs and community palliative care teams: accompany them to appointments if possible, advocating for flexibility of care based on the individual’s needs.
• Support advance care planning, at the person’s own pace: explore wishes around treatment, hospital admissions, and end of life care.
• Think about parallel planning: Involving palliative care doesn’t mean we are giving up on someone and a helpful concept is hoping for the best while planning for the rest.

For more guidance and tools on supporting individual’s palliative and end of life care, visit this chapter of the Homeless Palliative Care Toolkit. Information on the importance of multi-disciplinary care can also be found in this chapter of the Toolkit.

How can staff open up conversations with individuals about deteriorating health?

Many of us, including staff and people accessing services will struggle to talk about death and end-of-life care wishes. The Homeless Palliative Care Toolkit has a range of tools and resources that can support in interactions with individuals about what matters to them as their health deteriorates, including tools to help initiate the more difficult conversations.

Top tips for holding difficult conversations:

• Use open-ended questions (that cannot be answered by a simple ‘yes’ or ‘no’)
• Actively listen – bring your attention fully to what the person is saying
• Find a quiet, suitable environment when opening up conversations, and allow yourself enough time without distractions
• Focus on what the individual thinks, feels, and wants in that moment in time – whether this is future aspirations or current concerns
• Be yourself – while some aspects of a conversation may be hard, you don’t need to change the way you ordinarily interact with the individual
• Respect an individual’s wishes to not discuss or address certain issues.

What support should be offered to staff when they have experienced the death of someone accessing services?

Not everyone processes death in the same way so a variety of options should be considered:

• Practical adjustments to workload in the days that follow a death
• Group debriefs or reflective practice
• One-to-one check-ins or psychologically-informed supervisions
• Access to specialist emotional support e.g., counselling or an Employee Assistance Programme

It is important to consider the impact a death may have on other people accessing the service. Some practical suggestions are:

• Include people in the practical arrangement following a death, e.g., funeral, memorials
• Ensure individuals can access some 1-2-1 support as early as possible following a death to provide a space to talk about how they are coping – this could be as simple as ‘checking in’ with people
• Ensure those closest to the individual who has died are notified first.
• Consider as a team how to acknowledge an individual’s death. For example, placing a memorial book and a photograph of them in a communal area of the service, once everyone has been notified.

For more information and tools on supporting individuals through a bereavement, visit this chapter of the Toolkit.

Further information and resources

• Listen to our podcast episode on palliative care and homelessness
• Use the Homelessness Palliative Care Toolkit – contains resources, tools, and activity worksheets to help in planning and providing person centred, multiagency care for people experiencing homelessness.
• Marie Curie has a range of downloadable resources for people living with a terminal illness, and their family, friends and carers.
• Homeless Link resources on how to hold conversations about health.