Rev. Dr. Matthew Durham is a Roman Catholic priest and experienced hospice palliative care administrator. An alumnus, Fr. Matthew earned an MDiv and a DMin at the Faculty of Theology, and is currently the Executive Director, Hospice Palliative Care and Community Development for SE Health. Formerly, he was the Director of Community Engagement & Advancement at The Hospice of Windsor & Essex County Inc. This article was co-authored with Hana Irving, MA.
Helping the Most Vulnerable at the End of Life
While discussions of how to create a system that supports Canadians who wish to live and age at home have been at the forefront of health care agendas for decades, this discussion has only become more necessary in the midst of the COVID-19 pandemic. Discussions of viral spread, social and physical distancing, the importance of wearing a mask, washing hands, and disinfecting surfaces to prevent infection have become commonplace in households nationwide. At the same time, as a society, we are becoming more aware of the social and economic disparities that have put certain vulnerable populations at greater risk.
Ubiquitous yet largely ignored, in every major city there are thousands of Canadians who are homeless and lacking access to adequate resources to follow public health guidelines about social distancing and hygiene (Jadidzadeh & Kneebone, 2020). Furthermore, people experiencing homelessness are often at greater risk for virus transmission due to crowded living conditions in temporary housing or shelters, or congregate settings, and overall face a 5–10 times greater mortality risk than the general population (Tsai & Wilson, 2020). Those risks only increase for individuals with compromised immune systems or who may be approaching the end of life.
For people experiencing homelessness, access to palliative care has traditionally been a challenge, which has only been exacerbated by the COVID-19 pandemic. Hudson, Shulman and Stone (2017) note that
the delivery of high-quality care in mainstream settings for homeless people is complex for many reasons, including mistrust of health services, isolation, the impact and chaos associated with substance or alcohol misuse and, for some, alcohol-related early cognitive impairment. These factors, alongside the relatively young age at which homeless people may benefit from palliative care, means access to hospice and care homes is currently rare. As a result, homeless people often receive inadequate care and support. (p. 54)
This is a problem that Journey Home Hospice has been addressing for a little more than two years as Toronto’s only hospice serving homeless and vulnerably housed individuals. The hospice, which is a partnership involving Saint Elizabeth Foundation, Hospice Toronto, and Inner City Health Associates, provides 24/7 hospice palliative care, including complementary therapies to patients at the end of their lives, with a typical admission having a prognosis of approximately three months. More than pain and symptom management, Journey Home Hospice also offers formerly homeless patients the opportunity to experience “home,” sometimes for the first time in decades. The small clinical staff, complemented by specially trained volunteers, often become a “found” family for patients who are typically estranged from their loved ones. Volunteers especially fill an important role: reading stories aloud, singing favourite songs, cooking memorable dishes, playing cards, or even watching movies with patients.
Equally important, Journey Home Hospice becomes a place of healing, even as patients approach the end of life: regular meals; a clean, safe place to stay; coordinated pain and symptom management; programs such as art and music therapy, legacy work, and a visiting dog program all help patients to reconnect with their humanity after years of hardship and struggle. The psychosocial and spiritual care program also helps patients reconnect with loved ones if they wish and provides a welcoming space to express their faith or find a connection with their chosen religion.
Every patient who has stayed at Journey Home Hospice comes with a story. As each patient begins to feel at home, they will often share their story with a trusted team member or volunteer, and each life history comes with its own unique heartache. Whether fleeing an abusive family or relationship, struggling to cope with mental health issues and addiction, or facing financial setbacks from a divorce or workplace accident, our patients never intended to be homeless. However, once they found themselves without a permanent address, the struggle to find or maintain employment, save enough money for deposits on a new apartment, or even access social services became almost insurmountable challenges for many.
For many persons who have experienced homelessness, the overwhelming shame and fear associated with appearing “needy and dependent” prevents both men and women from asking for help. This is only compounded by our generally negative view of dependence and aging as a society. A recent study in Montreal found that individuals aged 50–64 were the largest growing demographic of the homeless population, as ageism often made it difficult to find new employment, and age prevented them from accessing social services and support programs designed for older Canadians (Burns, Sussman and Bourgeois-Guérin, 2018).
Journey Home Hospice becomes even more important in this context as a beacon of hope for patients, and as a potential teaching and learning facility on a local, national and international scale. Both from listening to our patients’ experiences and leading research into the factors affecting homelessness, we know that it is largely structural issues that cause and perpetuate homelessness. We are socially conditioned with capitalist values that emphasize individual responsibility, work ethic, and suggest that the only factor that determines success or failure is an individual’s motivation to work towards a goal. In reality, there are political and social factors that shape individuals’ access to opportunities, education, resources, and the necessary support and social services. Poverty and homelessness are closely tied factors that are caused by an inequitable distribution of wealth and opportunity (Murphy and Eghaneyan, 2018).
Our hospice is creating a truly safe space for people who have experienced homelessness, with a specially trained team able to respond to their unique life stories, physical, psychosocial and spiritual needs, as well as to offer care in a flexible environment responsive to the needs of the individual. COVID-19 has demonstrated more than ever that health care solutions in Canada must be innovative and responsive; we are proud that in the midst of this pandemic, not only have we been able to offer patients a safe respite at the end of their lives, we are also expanding to serve more people in the future. Currently, Journey Home Hospice is renovating our existing site to add six more hospice beds and hopes to be open in late 2020.
References:
Burns, V.F., Sussman, T & Bourgeois-Guérin (2018). Later-life homelessness as disenfranchised grief. Canadian Journal on Aging, 37(2), 171–184.
Hudson, B., Shulman, C. & Stone, P. (2017). ‘Nowhere else will take him’ – Palliative care and homelessness. European Journal of Palliative Care (24)2. 54.
Jadidzadeh, A. & Kneebone, R. (August 2020). Homeless shelter flows in Calgary and the potential impact of COVID-19. Canadian Public Policy. S160–S165.
Murphy, E.R. & Eghaneyan, B.H. (2017). Understanding the phenomenon of older adult homelessness in North America: a qualitative interpretive meta-synthesis. British Journal of Social Work, 48, 2361–2380.
Tsai, J. & Wilson, M. (April 2020). COVID-19: a potential public health problem for homeless populations. www.thelancet.com/publichealth (Vol 5). e186–e187.
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