Reflections on illness and end-of-life as social justice issues
“This seminar focuses on the critical analysis of systemic injustice. It will consider the history, meaning, consequences and dynamics of barriers that threaten, preclude or compromise the normal participation of selected vulnerable groups in social, economic and political institutions. It will critically examine concepts such as deviance, dependence, need, social control, and oppression. This critical analysis will form the underpinnings for leadership in the development and implementation of strategies for change.”
Every once in a while I wonder if everyone shouldn't have the chance to take some social work courses, as they help us understand issues that can seem intractable. Social Justice and Social Change was one of those. Taught by Prof. Akin Taiwo, we learned how to ask tough questions about why things are they way they are, and were able to identify the systemic issues that underpin many social problems.
This course required a "self-reflection" paper, and as I often do, I ran end-of-life issues as I've experienced them through my research and hospice placement through the filters, language and concepts provided in the course. While at the end of the day those who experience oppression and discrimination are likely continue to experience it at end-of-life (see the excellent work of Dr. Naheed Dosani, @NaheedD on Twitter), I'm not convinced death and/or the dying represents a category of oppression.
A revised excerpt from Social Justice & Social Change – A Personal Reflection
Prepared for Professor Akin Taiwo, February 9, 2018
In this paper, I question if our bureaucratization, medicalization and segregation of illness and dying as elaborated by Zimmerman & Rodin (2004) results in “othering” those experiencing illness and dying, and if it might constitute a form of oppression. Those who have a terminal diagnosis do seem to be “blocked from opportunities for self-development… excluded from full participation in society, or [are] assigned a second-class citizenship... because of their membership in a particular group…” (Mullaly & West, 2018, pp. 37-38).
Since my hospice placement, I continue to talk with people diagnosed with terminal cancer, and in particular bone metastases, both in and out of the hospice setting. They describe how, upon initial diagnoses, the cancer “community” is divided according to what kind of cancer they have (breast, prostate, lung, brain; each with their own foundations, associations, and fundraising events). They experience a range of reactions from family, friends and the medical community, and the cancer identities available to them are limited to being a “fighter” or a “survivor” -- these are both, however, limiting stereotypes (Dahl, 2018). For the most part, these people with cancer say, they are simply “living with” cancer -- they are neither heroes, nor do they believe they will survive cancer to one day die by other causes. They seek to live each day to the fullest, with as much control as possible -- to enjoy life, not be engaged in a perpetual battle with cancer. The medical focus on illness outside of palliative care seems to work in opposition to this need to focus on strengths and abilities rather than weakness and disability.
To understand oppression, Mullaly and West (2018) provide a framework for interrogating oppressive phenomena at the personal, cultural and structural levels. I can start at the structural level, asking, who benefits from reductive cancer identities? Clearly, administrators, the medical establishment, and pharmaceutical companies profit by encouraging people to believe they can fight and survive cancer. Increasingly doctors say they themselves, if diagnosed with cancer, would not take many of the treatments they offer to patients. They see that the suffering from side effects is great, and life is often barely extended (Periyakoil, V. S., Neri, E., Fong, A., & Kraemer, H., 2014).
It is worth observing that the system of hospice palliative care is less medicalized than institutions such as hospitals, and new arrivals remark that hospice seems more like a home than an institution. In fact, part of the psychosocial work in hospice is to focus on the person outside of their disease. Frequently, hospice residents work to make peace with painful medical journeys that had led them, only belatedly, to a place where they could examine and make peace with mortality and death. Offering more palliative psychosocial support sooner in the disease trajectory would better allow people to consider their options and choose the type of treatment they prefer – life at all costs, or fewer but better days.
On a cultural level, do healthy people benefit from “othering” those with cancer? According to Pharr (1998), the concept of “the Other” is placed upon those who are seen as “abnormal, deviant, inferior, marginalized, not ‘right’...” (p. 57). Othering people with cancer, or the dying, may have a variety of advantages for the healthy. It allows healthy people to defer thinking about their own inevitable infirmity and carry on living life as though it may never end. It may make it easier to make the difficult choice to place the unwell in hospitals and long-term care (LTC) facilities -- itself a decision constrained by economic, racialized and other intersectionalities. Most LTC facilities are owned and operated by for-profit corporations increasingly called to account for their treatment of legally and economically powerless, medically-vulnerable individuals, pointing again to structural issues (e.g. CBC News, 2017). I often heard the terminally ill express their wish not to “be a burden” to their friends and family -- perhaps this represents an internalized devaluing of selfhood because of their terminal status and increased care needs.
Banding together under the rubric of “living with bone metastases,” a group of people living with cancer are experimenting with solidarity online, and wanting to move the discourse of cancer from a medical/technological one, to a discourse of resistance and living well with cancer. Of course, that this is a concern represents a certain kind of privilege, as we can see elsewhere how the access to and experience of medical treatment is subject to individuals’ social location, racialization, as well as geographic location. Tang et. al. demonstrate that “healthcare is not only a clinical space; it is also a social space in which unequal power relations along the intersecting axes of ‘race’ and class are negotiated” (2015, p. 698). I identify myself as an ally of those trying to meet their needs within the current system, and am committed to helping shift the narrative at all levels of oppression.
In my hospice placement there were other examples to reflect upon. For example, Nobe-Ghelani (2017) describes how neoliberalist notions of borders results in people having “differential access to civil, economic, and social rights dependent on the mode of entry, economic status, and country of origin” (p.132). This indeed affects access to hospice. Hospice is fully-funded by government and private donations; offered at no cost to documented Canadian residents.
One resident was an undocumented West Indian migrant I will call George. He had lived in Canada for years, but due to his status was not qualified for hospice. George arrived thanks to the intervention of an activist palliative care physician, who also managed to secure him funding from Ontario Disability Support Program to cover medication. George was not initially open to psychosocial support, and wanted to return to his home. He was not convinced he was going to die.
Because of his lack of trust of hospice, and his particularities, some staff had reacted to George’s admission with fear, stereotyping him as homeless, mentally ill, and criminalized. With the guidance of my anti-oppressive supervisor, I joined in eliciting and listening to his life story, filled with trauma, tragedy and personal triumphs. We learned about what was important to him: access to nature, animals, privacy, and dignity. My supervisor and I modelled curiosity and openness toward, and acceptance of, this resident, which seemed to catch on with the other staff. George died with only hospice staff for comfort. Shifting the discourse around George resulted in an outpouring of emotion and support upon his death. At George's leaving ceremony, the hospice was united in feeling that this resident embodied the ethos of hospice care, and that our practice had been enriched by his presence.
This is just a rough sketch of some of the ways I am incorporating the theoretical frameworks we have used in class into my macro-level thinking, and micro practice, in and around hospice and palliative care social work. It may not entirely hold up to critical reflection, as it is hard to argue that those at end-of-life suffer Pharr’s (1998) criteria of institutional violence (as opposed to neglect or malpractice) or individual violence (though caregiver abuse does happen). I look forward to continuing this line of inquiry.
References & Related Readings
Bishop, A. (2015). Becoming an ally: Breaking the cycle of oppression in people. Fernwood Publishing.
CBC News. (2018, January 31). 3 northeastern Ontario nursing homes, 35 reported cases of abuse. CBC News. Retrieved February 06, 2018, from http://www.cbc.ca/news/canada/sudbury/nursing-home-abuse-northeastern-ontario-1.4512018.
Chochinov, H. M., Hack, T., Hassard, T., Kristjanson, L. J., McClement, S., & Harlos, M. (2005). Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. Journal of clinical oncology, 23(24), 5520-5525.
Curry-Stevens, A., Lee, C., Datta, J., Hill, E., & Edwards, V. (2008). Activist formation in the neoliberal era: A journey with multiple dimensions. Affilia, 23(3), 290-298.
Dahl, E. (2018). Just Breathe: Learning to Live With Bone Mets - Eileen Dahl. Retrieved February 9, 2018, from http://survivornet.ca/survivor-stories/just-breathe-learning-live-bone-mets-eileen-dahl/
Jagannathan, A., & Juvva, S. (2011). Palliative care: An Indian perspective. Oxford textbook of palliative social work, 561-565.
Holland, T. P., & Kilpatrick, A. C. (2009). Working with families: An integrative model by level of need. Pearson Higher Ed.
Periyakoil, V. S., Neri, E., Fong, A., & Kraemer, H. (2014). Do unto others: doctors' personal end-of-life resuscitation preferences and their attitudes toward advance directives. PloS one, 9(5), e98246.
Pharr, S. (1998). The common elements of oppressions. In S. Pharr, Homophobia: A weapon of sexism, (pp. 53-64). Inverness, CA: Chardon Press. Retrieved February 06, 2018, from http://suzannepharr.org/wp/wp-content/uploads/2008/01/homophobiaaweaponofsexismcondensed.pdf
Mullaly, B., West, J. (2018). Challenging Oppression and Confronting Privilege: A Critical Approach to Anti-Oppressive and Anti-Privilege Theory and Practice. (3rd ed.). Don Mills, ON: Oxford University Press.
Smith, C. (2018). Owning privilege, seeing oppression. Retrieved February 06, 2018 from https://www.carolyngibsonsmith.com/diary-of-a-msw-student/2018/2/5/owning-privilege-seeing-oppression. (LINK NO LONGER ACTIVE)
Tang, S. Y., Browne, A. J., Mussell, B., Smye, V. L., & Rodney, P. (2015). ‘Underclassism’and access to healthcare in urban centres. Sociology of health & illness, 37(5), 698-714.
Weisenfluh, S. (2011). Social work and palliative care in hospice. Oxford textbook of palliative social work, 71-78.
White, M. (2007). Maps of narrative practice. WW Norton & Company.
White, M., & Epston, D. (1990). Narrative means to therapeutic ends. WW Norton & Company.
Yalom, I. D. (2010). The gift of therapy. London: Piatkus.
Zerubavel, E. (2016). The five pillars of essentialism: Reification and the social construction of an objective reality. Cultural Sociology, 10(1), 69-76.
Zimmermann, C., & Rodin, G. (2004). The denial of death thesis: sociological critique and implications for palliative care. Palliative medicine, 18(2), 121-128.