In November last year, we launched a series about palliative care in the context of being ‘homeless’ which may include sleeping on the streets, living in a hostel or ‘sofa surfing’. We looked at the implications of providing palliative care and bereavement care for people who are experiencing homelessness and how the hospice and palliative care community can offer appropriate support.
Today, we hear from Dr Alissa Tedesco, a palliative care resident at the University of Toronto, and Dr Naheed Dosani,lead palliative care physician, Palliative Education and Care for the Homeless (PEACH) Program of the Inner City Health Associates in Toronto, Ontario, Canada. They explain how the inclusion of harm reduction principles into palliative care programmes can help people experiencing homelessness, who use substances, to stand a better chance of accessing palliative care services.
As palliative care providers, we aim to meet people where they’re at during a difficult time in life. We work to get to know our clientsand their social circumstance, what is important for them, their values and goals. We try to provide care that is in alignment with that, with hopes of reducing suffering and improving quality of life. This is not unlike the philosophy behind harm reduction, which is largely based upon client-centeredness – aligning your agenda with your clients’ agenda.
Harm reduction is a set of “strategies and interventions based on public health and human rights aimed at reducing the negative consequences of drug use.” It entails non-judgement and practical interventions and aims to promote safety and enhance connections. Examples include managed alcohol programmes, supervised consumption sites, and safer injection and crack smoking equipment distribution programmes.
Despite some of the parallels in philosophy and the well-recognised barriers to accessing quality palliative care that people who use substances face, we see little integration of harm reduction strategies into mainstream palliative care services. In our practices caring for individuals who are experiencing homelessness, a population with high rates of substance use, we see these disparities amplified. Our clients face discrimination within, and structural barriers to, mainstream palliative care services. Their substance use and the associated stigma prevent them from getting sufficient opioids for pain. Their “behaviours,” zero-tolerance, abstinence and safety policies often mean they can be excluded from care.
So how can we better support individuals with life-limiting illness and substance use disorders? The integration of harm reduction principles and programming is essential, and must be paired with capacity building and education on the complex needs and resilience of this group. At Journey Home Hospice, a four-bed pilot for individuals experiencing homelessness at end of life, and through the PEACH (Palliative Education And Care for the Homeless) Program in Toronto, Canada, this is what we are trying to do. Creating an open and safe environment to discuss drug use, working with case workers and community supports, providing managed alcohol and, within parameters, supporting safe and appropriate substance use on-site. In our experience, this care embodies the essence of quality palliative care, founded on trust, collaboration and person-centeredness.
But what can we do to better support those who do not, or cannot, access palliative care services? A study by McNeil et al (2012) found that harm reduction programmes themselves actually served as a “critical point of entry to and source of end-of-life care and support” for those experiencing homelessness who use substances. So not only is there tremendous potential in incorporating harm reduction principles into palliative care programming, but also that harm reduction programmes can be a means of supporting clients to overcome barriers and increasing access for this marginalised population.
As a palliative care community, we need to do more to better care for individuals with advanced illness and concomitant substance use disorders. We have much to learn from our addictions medicine and harm reduction colleagues on how to achieve this. At the same time, we hold a wealth of expertise on how to recognize and treat the suffering that comes with life-limiting illness, which addiction in itself can be. Fostering connection and enhancing collaboration between these two worlds has vast potential and is essential if we wish address the disparities this population faces.
Links and resources
- Follow Dr Alissa Tedesco on Twitter @AlissaTedesco
- Follow Dr Naheed Dosani on Twitter @NaheedD
- Journey Home Hospice.
- PEACH (Palliative Education And Care for the Homeless) Program.
- What’s a life worth? View Dr Naheed Dosani’s TedX presentation.
- Stajduhar K.I & Mollison A. (2018). Too Little, Too Late: How we fail vulnerable Canadians as they die and what to do about it. University of Victoria Institute on Aging and Lifelong Health; Victoria, British Colombia, Canada. Download a copy here.
Look out for more posts in this series on the EAPC blog including stories from Austria, Canada and the UK. If you would like to share your experience in supporting people experiencing homelessness and/or other marginalised people who need end-of-life care, please contact the editor or view the Contributor’s Guidelines.
#EAPC19 – Global Palliative Care – Shaping the Future. Join us at the 16thEAPC World Congress in Berlin on 23 to 25 May 2019.
Presentations focusing on the palliative care needs of people experiencing homelessness include:
Meet the Expert session: Palliative Care and the Homeless Population: Challenges, Solutions and Lessons from Others
Oral presentation in a free communication session: The Palliative and Long Term Care and Support Needs of People who were Formerly Street Homeless
Poster: Educational Intervention to Promote Staff Confidence and Care Planning for People Experiencing Homelessness with Palliative Care Needs: A Pilot Study.