Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.Rainer Maria Rilke
One No Longer Dies at Home
Throughout the centuries, death and dying have taken place in the context of the home and community in which the dying person’s life was lived—among family, friends, and neighbors. About a hundred years ago, this gradually started to change and it can be argued, at least in Western societies, that death has moved out of the home. For most of the population, the process of dying and the actual moment of death currently take place in the contexts of hospitals, nursing homes, and hospices. End-of-life care has become an acknowledged discipline within mainstream medicine and thus predominantly the art of professionals who are dealing with death at work (Ariès, 1976).
This shift, whereby the initiative for care of the dying has been passed from community, family, and friends to professionals, is accompanied by a growing expectation that end-of-life care professionals should tend not only to the physical, but also to the psychological and spiritual needs of the patient (Kearney, 2000; WHO, 2016). Consequently, facilitating processes that used to take place in the home, initiated by the family, now engender an expectation of “use of self ” (Froggett, Ramvi, & Davies, 2014) on the part of the professional. One might say this is a personal investment, required and constitutive in all relational-intense professions. Yet, there are reasons to question whether not encounters with death and dying actualize the personal in the professional in particular ways that call for further investigation.
Literature, both prose (Frankl, 1964; Kubler-Ross, 1973; Noyes, 1980; Van Laarhoven, Schilderman, Vissers, Verhagen, & Prins, 2010; Yalom, 1998, 2008) and fiction (Tolstoy, 1989; Gustafsson, 1981; Skelton, 2003), testifies to how encountering one’s own imminent death , or realizing one’s own mortality due to near-death experiences, can inform or alter a human being’s understanding of self and life. From this, a case can be made suggesting that death informs life, sometimes in subtle and profound ways (Baumeister, 1986, 189–207; Becker, 1973; Kiser, 2015; Snyder & Forsyth, 1991). The present study explores whether daily encounters with the death of others, as part of one’s professional work, may offer comparable experiences and similarly profound impacts.
Questions of Social Importance
Studies indicate that health professionals in end-of-life care are subject not only to meaningful encounters with dying patients and their relatives, but also to emotional and existential stress. There is an implicit risk of experiencing burnout (Candrian, 2014; Kalicińska, Chylińska, & Wilczek-Różyczka, 2012; Martins Pereira, Fonseca, & Sofia Carvalho, 2011; Van Mol, Kompanje, Benoit, Bakker, & Nijkamp, 2015) that might make the professionals consider leaving their jobs (Cummings, 2011), or encourage them to distance themselves emotionally (Menzies-Lyth, 1988), or leave them in emotional states that affect their ability to recognize the emotional and existential needs of the patient (Agledahl, Førde, & Wifstad, 2011). How the above reactions may relate to what is particular to end-of-life care , namely encountering death at work, is a most relevant, yet largely unaddressed, question.
An exploration of the potential impact upon the professional of encountering death is important to society. First, because the population is growing older with an accompanying rise in the prevalence of cancer (Engeland, Bjørge, & Brunborg, 2015; Kaasa, 2008). Hence, there will likely be an increasing need for health professionals willing to make their living in the “boundary” zone between life and death . Second, because understanding the impact of encountering death on the professional is crucial when considering what measures are required to prepare, sustain, and develop the end-of-life care professionals; such measures must be grounded on empirically based knowledge.
Following the above, there is one pressing question that must be subject to empirical investigation namely: How, if at all, do daily encounters with the death of patients inform the personal and professional self-understanding of the end-of-life care professional?
The aim of this study is to pursue this question and contribute to empirically based knowledge of how encounters with dying patients might inform the health professional’s understanding of his/her personal self and professional role. Empirical investigation will examine whether and how daily encounters with the death of patients inform the personal and professional self-understanding of the end-of-life care professional and how the informant’s past and present social contexts inform individual existential and emotional processes. I will use an existential-psychosocial approach , understood as simultaneous focus on the mandatory basic conditions and psychosocial constitutions of the subject, to pursue the following research question: How do encounters with the death of others inform the health professionals’ understanding of themselves as well as their professional role?
In order to investigate the research question, two accompanying, interrelated, questions serve to frame the enquiry. The first underscores the hermeneutic phenomenological character of the endeavor and the interest for the experiencing professional. This is not limited to focusing on what is told, but also on the manner of telling: How do health professionals describe and reflect upon encounters with patients and families who are confronted with their own death ? The second, like the first, is an explication of the contextualist position of the study, outlined in the next chapter, namely: How do discourses present in the social contexts in which the health professional is situated inform both the experiences at the boundary between life and death and the narration of the same?
I will elaborate and discuss these questions in the following chapters. The point made here is that the questions imply two interrelated hypotheses that can and will be subject to empirical investigation, namely that the descriptions and understandings of the health professionals implicate both subjective dispositions and contextual factors. This dual aspect and challenge—to try to grasp both the inner experience and the prevailing context—place this study within the larger emergent field of psychosocial studies (Clarke, Hahn, & Hoggett, 2008; Froggett, 2002; Hollway & Jefferson, 2000; Ramvi, 2007), which will be introduced more thoroughly below.
Professional Contexts in Focus
The study relates to the medical disciplines of palliative care and acute care . According to the WHO, “Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and treatment of pain and other problems, physical, psychosocial and spiritual ” (WHO, 2016). Acute care , on the other hand, is about providing emergency services and general medical and surgical treatment for acute disorders rather than long-term residential care for chronic or long-term illness. Acute care is provided as pre-hospital care, in emergency rooms and different kinds of intensive care units (general, pediatric, cardiac, etc.).
The main reason for choosing to locate my research in these particular contexts is that both have as a constitutive element, to a larger degree than other medical fields, professional encounters with patients faced with their own death . At the same time, they are quite different in character. In acute care , the focus is primarily on saving lives. When there is a shift toward end-of-life care , the health professionals will most often relate to family members, not the sedated patient. In the palliative unit, the focus is more on end-of-life care than curative care , and the health professionals relate more often directly to the patient. Each se...