What is the meaning of a “good” death? In occupational therapy and occupational science, we are working to develop practice and research in hospice and other settings of care for people who are dying. We have made some progress toward beginning to understand the meaning of occupation in the context of dying and death. In The Meaning of Everyday Occupation, concepts of occupation and death are addressed in at least three chapters.
Chapter 2: Death appears in the story of Dwayne, a homeless man who died on a capitol bench in downtown Madison, Wisconsin in June 2009. As I said in this chapter , “The sense of aloneness in this homeless man’s life is profound.” I drew on the work of occupational therapy scholars Karen Rebeiro, Karen Hammell and Ann Wilcock to think about the need for and sense of belonging that is crucial to health and survival and that seemed to be absent in Dwayne’s life. Did he have both private as well as public spaces in his life, did he have friendships, did he have a place that was physically and emotionally safe, did he have any sense of belonging? How did everyday occupation support or not support this man in his solitary life? Or, are our concerns simply reflections of our own perceptions of how things should be, and for Dwayne, dying on the bench outside the capitol was actually in harmony with how he lived his life? We don’t know this, but was his manner of dying, in fact, a “good death” from Dwayne’s perspective?
Chapter 4: Death appears next in the story of my teenage experience at the visitation held for the mother of one of my good friends. The story touches on my adolescent awkwardness in this situation and my rising awareness of the “threads of difference” that defined the rituals and behaviors in this context as compared to other contexts of my life. I became, during that visitation, consciously aware that I was in a situation that was set apart from the ordinariness of daily life and from what was familiar to me up to that point in time. Faced with the phenomenon of death, we turn to ritualized behaviors, the gathering of friends and family, certain modes of dress, certain modes of speech and demonstrations of emotion in an effort to express the deep differences between a visitation and other events of our lives. In our effort to fulfill cultural expectations for behaviors in the presence of death, we hope to contribute something positive to the situation — we hope to be able to help create a sense of a “good” death, a meaningful death, through the practice of culturally defined and valued patterns of occupation.
Chapter 8: Death is present in this chapter in a discussion about the meaning of occupation surrounding death and dying (Jacques & Hasselkus, 2004). One of my doctoral students, Noralyn Jacques, carried out a 6-month ethnographic study in a residential hospice, seeking to understand the nature of everyday occupation as it is created and experienced by people who are dying and those who care for them. The success of any hospice program has been said to be dependent on how effectively staff can promote what patients and families regard as a “good death”. Both mundane and unique occupations seemed to take on new forms of significance to the residents, families, and caregivers; Jacques states, “The context of dying provides a unique temporal and sociocultural experience, remaking the ‘ordinary’ into ‘extraordinary’ nonrepeatable meaningful events.” Occupations such as simple dinner preparations for a family gathering to say goodbye or watching a favorite television show and playing cards with a granddaughter are framed at the end of life ‘”within the experience of dying.” Jacques concluded that enabling occupation in an end-of-life care environment can help bring about a “good” death experience for all involved in the dying process.
Finally, the stories of death came full circle here in Madison this past December when a homeless man was found dead one morning in a stairwell at a downtown convention center. Just two days before his death, Billy had attended a Capitol Square memorial service for 40 homeless people who died during 2011. The Madison gathering on December 21 was part of a National Homeless Persons’ Memorial Day, an effort to ensure that homeless people don’t die in obscurity. Unlike Dwayne, Billy had been a regular attendee at a homeless services program in a downtown church. His friends said Billy thought of the church as his “home”; he had close buddies in the homeless group, people who mourned his death and breathed a sigh of relief when they were informed that his death was not the result of trauma. One of his closest friends said that he and Billy preferred sleeping outdoors to being in a crowded shelter. Sleeping outdoors on the streets gave the men a sense of independence and of having some territory of their own; he and Billy would bunk down near one another for safety.
It seems that even in the face of the dangers of homelessness, elements of a “good” death can exist — friends who mourn, friends who hope you were not physically accosted, friends who miss you.
Jacques, N.D., & Hasselkus, B.R. (2004). The nature of occupation surrounding dying and death. OTJR: Occupation, Participation and Health, 24, 44-53.