Journal of Applied Hermeneutics September 27, 2012 The Author(s) 2012

The Hidden of Death and Grief

Shelagh McConnell1, Nancy J. Moules1, Graham McCaffrey1, & Shelley Raffin-Bouchal1

Abstract

Western can be described as death-denying and youth-obsessed. Yet this has not always been the case. Only a few ago, death was very much part of life where people died at home with their families members caring for them. A shift occurred, in part, because of the un- precedented advances in medical that the has seen over the past 40 years. Health care professionals now have the knowledge and the to prolong life in ways that were previously not only unattainable, but inconceivable. Regardless, the reality that death eventually come for each of us has not changed; merely our perception of it has. This per- ception is influenced by the hidden nature of death in our . This begs the questions: if death in our culture is something to hide, to conceal, and to keep secret, then what does that say about our ability to express grief? What does this mean for those who face it as part of their cho- sen profession? How might we understand the nature of suffering for those who turn toward the suffering of others? This paper interpretively examines the nature of hidden death and hidden grief in our society.

Keywords death, grief, hermeneutics, hidden, pediatric palliative care nursing

Death is the ugly fact which Nature has to how to talk about death with their family hide, and she hides it well. members. I have also learned about the cul- Alexander Smith ture of hiding death and grief from not only other patients and families in the , Through my* years of practice as an acute but also from my colleagues, friends, and care nurse at a large pediatric hospital, I family members. The expectation that nurses have often been in the presence of dying children and grieving families. I have 1 Faculty of Nursing, of Calgary learned how to care for these children and Corresponding Author: Shelagh McConnell Email: [email protected] 2 McConnell et al. Journal of Applied Hermeneutics 2012 Article 11 and other health care providers are somehow death was at hand, and the door thrown immune to loss and grief intrigues me and open to neighbors and even those pass- has inspired me to examine death and grief ing by in the street. (Callahan, 2009, p. beyond the confines of the hospital and to 104) explore the topic within the larger context of society. Death is no longer perceived to be so close. People do not seem to live with the Western culture can be described as “ancient that [death] is inevitable, an death-denying and youth-obsessed. As a re- immutable and unchangeable fact and hu- sult, people go to great lengths to disguise fate” (Callahan, 2009, p. 104). A shift even the signs of natural aging. One quick occurred, in part, because of the unprece- look at popular and dented advances in medical science that the advertisements will support the truth in that western world has seen over the past 40 statement. The natural process of aging is years. Health care professionals have the hidden and so, too, is the dying process and knowledge and the technology to prolong death itself. Ever more, the elderly are hid- life in ways that were previously not only den in nursing homes; the dying are hidden unattainable, but inconceivable. The reality in and hospices. In fact, Daniel that death will eventually come for each of Callahan, a who has written ex- us has not changed; merely our perception tensively on topics related to ethics and of it has. Advancements in medical science health policy wrote that “The present period and technology have given us a false sense might best be characterized as a revolt of being able to defy death, to avoid it, and against death itself” (Callahan, 2009, p. 106). perhaps even to postpone it indefinitely. William Haseltine, CEO of Human Genome Only a few generations ago, death was , once said that “death is nothing very much part of life. For instance, in Can- but a series of preventable diseases” (Calla- ada in 1926, one in five children would not han, 2009, p. 107, citing Fisher, 1999) which survive to their first birthday ( Can- is absurd, but this statement does highlight ada, 2008). As a result, just about everyone our cultural desire to conquer all diseases. It would have lost a child close to them: son, also draws attention to our cultural expecta- daughter, neice, nephew, or grandchild. By tions around death and dying—the expecta- comparison, today in Canada fewer than one tion that the ultimate goal is to keep people in 100 children die before reaching the age alive at all costs. Increasingly, we see exam- of one (Statistics Canada, 2008). Therefore, ples where “our technology has surpassed today fewer of us are directly affected by the our humanity” (Ferrell, 2006, p. 927). We death of a child. Death was closer; death see instances where patients are kept alive was familiar. Family members cared for through the use of machines and medication their dying loved ones at home. Death was which surely prolong suffering and certainly not a do not prevent the patient’s inevitable death.

private loss but was taken as a blow to The Hidden Nature of Death all those who survived, both family and strangers. Death required public affirma- The word “hidden” means “being out of tion of human solidarity against a harsh sight, not readily apparent, concealed” (Mer- and indifferent nature. It was not to be riam-Webster, 2012). As the word “hidden” hidden: families should be there when is closely related to “conceal” it is also relat- 3 McConnell et al. Journal of Applied Hermeneutics 2012 Article 11 ed to the idea of aletheia, which is the Greek mother literally screamed in emotional ago- word meaning truth-as-unconcealment ny through the entire service and at one (Online Etymology Dictionary, 2012). point actually got into the casket of her dead Aletheia, whose etymological roots are con- child. The image of that haunts me even to- nected to the word Lethe, which literally day. I now wonder if that event was particu- means “forgetfulness, oblivion” (Online Et- larly troubling because of our society’s de- ymology Dictionary, 2012) is also, accord- sire to hide death and grief. Am I merely ing to , a river in Hades. uncomfortable with being denied the protec- Western society has become accustomed to tion and luxury of concealed death and the concealment of death from our lack of grief? knowledge of what goes on behind the scenes of a funeral home, to our euphemistic The Hidden Nature of Grief language when talking about death, to keep- ing our grief out of sight. If death in our culture is something to hide, to conceal, and to keep secret, then what Some may argue that death is not hidden does that say about our ability to express in western culture as our fascination with grief? The message is simply “in a word, death is obvious in popular media: from dear friends, keep your grief to yourself” movies and television to crime and (Callahan, 2009, p. 105). It would seem then even in news reports. Stories of death attract that hidden death is accompanied by hidden interest and attention, yet when it comes to grief. The expression of grief, even by those the death of someone close to us, when it who are identified as the bereaved, is not comes to experiencing a “real” death, this welcomed to be openly displayed for all to fascination is often replaced with not only witness. Furthermore, grief in our society is grief, but also disbelief and a desire to hide expected to have a time limit, despite the from experiencing emotional pain. Western research that would suggest that grief is society increasingly caters to this desire to never overcome, but adapted to (Attig, 1996; hide and to avoid facing the reality of death Moules, Simonson, Prins, Angus, & Bell, and grief. For instance, this is demonstrated 2004; Neimeyer, 2001). It would be impos- in the decreased popularity of open-casket sible for me to recall all the times I have funerals in favour of “soothing ceremonies heard statements such as “My dad died six of remembrance” (Callahan, 2009, p. 103). I months ago and I thought my mom would be have attended many funerals, particularly of doing better by now” or “If her son died children who I came to know through my three years ago, then why is she still not work as a nurse. Frequently, the memorial over it?” As a result, grievers are forced to services for children from traditionally hide their grief - - to keep it a secret. western families have been focused on a “celebration of life” with photos and toys, Despite the expectations of society to but no caskets or urns to be seen. Often at conceal grief, the expression of grief is not these services, those in attendance are always hidden intentionally. Grief has a way somewhat restrained in their outward ex- of evading description (Moules et al., 2004) pression of grief. I have also attended open- as it lacks clarity and is difficult to define casket funerals of children from other cul- just by its very nature (Cowles & Rodgers, tures where handling of the body was com- 1991; Jacob, 1993; Rodgers & Cowles, mon as was the public display of grief. For 1991). The challenge in articulating grief is instance, I attended one funeral where the apparent through the use of metaphors (e.g., 4 McConnell et al. Journal of Applied Hermeneutics 2012 Article 11 describing grief a journey, a neverending overcome by something that demands our fall, or an uninvited houseguest) as well as response (Caputo, 1993). The power of the silences when those suffering talk about obligation is strong enough to override our their experience of grief (Moules et al., desire to run from the room, to cover our 2004). This is the inarticulate nature of grief eyes, to pretend that death has not come to (Moules, Simonson, Fleiszer, Prins, & Glas- call. Despite wanting to close the door and gow, 2007). It would seem then that grief avoid witnessing tremendous pain and suf- itself at times seeks to be concealed. fering, our sense of obligation will often take over and demand our presence. This is The Obligation of Those Who Face Death despite the fact that there may be no tasks to complete, no conversations to have, no Even when our culture encourages us to hide charting to write. death and grief, some people refuse to do so. In fact, they turn towards it. Interestingly, Yet our sense of obligation compels us “to hide” means not only “to conceal” but to remain at the bedside and to simply bear also “to turn away” (Merriam-Webster, witness to what is transpiring. The term 2012). There must be something special “bear witness” means “to testify” and “to about those people who choose to go against authenticate” (Merriam-Webster, 2012). the norm and face death, something different There seems to be an obligation to witness about those who choose to turn toward death times of suffering and death. Etymologically, and not hide from it. the word “witness” is related to the word “” (Online Etymological Dictionary, Some people are attracted to professions 2012) meaning someone who constantly suf- that encounter death because they have a fers (Merriam-Webster, 2012). In the current personal of loss, while others have vernacular, being a martyr is not considered spiritual for wanting to work with to be a particularly good thing; however, if those who are approaching the end of their we consider its use as someone who suffers lives. Having met a variety of professionals with others, the term is particularly appro- who care for the dying, I do not believe priate. there is any one why people do this work. Some nurses, , social work- I would be remiss if I did not also ex- ers, and chaplains devote their life’s work to plore the meaning of “to bear” as I have caring for the dying and the bereaved. Oth- with the word “witness.” The meaning of “to ers work hard at it, but after a few years they bear” is particularly appropriate in the con- move on to other jobs. Nevertheless, what I text of supporting the dying and the be- have experienced and observed when faced reaved: “to support a weight or strain” and, with death and dying is that there is the with this meaning, it is a synonym for “to sense of obligation to the patient and family. suffer.” It would seem that suffering is a “Obligation” means “something one is fundamental part of bearing witness as both bound to do,” a commitment, and a respon- words are linked to the word suffer. Fur- sibility to another (Merriam-Webster, 2012). thermore, the word “bearer” has the histori- Caputo wrote that obligation is a feeling that cal meaning of “one who helps carry a comes over us when others are in need (Ca- corpse to the grave” (Online Etymological puto, 1993). Obligation happens before we Dictionary, 2012). Nurses usually do not enter the room and stand at the patient’s literally carry a corpse to a grave. Neverthe- bedside (Caputo, 1993). We are suddenly less, I do think the work of nurses, and oth- 5 McConnell et al. Journal of Applied Hermeneutics 2012 Article 11 ers who work with the dying, carry the pa- tightly contained in a box in my brain tient and family through the experience by marked “I wish I could forget.” Why is way of the care and presence we provide in that? Why not tell these stories rather than times of suffering and grief. conceal them? Is there a burden to these sto- ries? Does the burden lie in telling stories Interestingly enough, if I take the word that others do not want to hear? As a newly “bear” yet one step further and examine the graduated nurse, I very quickly came to real- homophone “bare” it further enriches the ize that my friends and family were interest- meaning of bearing witness. “Bare” means ed in the cute and uplifting stories about the “lacking appropriate covering” with syno- children I cared for at the hospital. They nyms such as “to uncover, to reveal, to ex- were not, however, interested in the stories pose, to uncloak” (Merriam-Webster, 2012). of death and dying. They did not want to Not only is “bearing witness” the idea of hear about suffering and pain. The burden, authenticating suffering, but also revealing then, is mine to carry—a burden that cannot the suffering through our presence. I have be shared. Even if I wanted to tell some of been a witness to dying and grief, but found my stories, I would not know where to begin. I had neither words of consolation nor ges- Such is the inarticulate nature of grief tures of comfort. I could simply bear witness (Moules et al., 2007). - - to be present, to carry, to authenticate, and to suffer. Yet I have heard families of children who have died tell their stories. What makes The Hidden Nature of Working with the my version of the story inarticulate? I want Dying and the Dead to understand this better. I had the oppor- tunity to interview two of my colleagues on When we witness pain, suffering, dying, and this topic for a research project. One nurse death, we are changed. What does this mean spoke at length about a palliative child with for those who face it as part of their chosen whom she had developed a special bond. profession? How might we understand the The nurse even went so far as to say nature of suffering for those who turn to- “[child’s name] and her family were like ward the suffering of others? Is this experi- family to me.” Then I asked her how she ence of witnessing suffering as complex as reacted when she learned of the child’s the experience of grief itself? death, and she said that she was devastated by the loss and was overcome with sadness. I have spent my nursing career working Then she quickly added, “But I don’t have with the pediatric palliative care population. grief.” Why deny the existence of grief - a While I had once aspired to be one of those universal human experience that is com- nurses who spend their careers caring for pletely appropriate in the face of loss and dying children, I came to realize that this death? Perhaps nurses are not experiencing was not to be my journey. I am not one of grief, but rather something else? If not grief, those nurses. I am no longer able to sit with then what? Or perhaps nurses simply believe the dying and the bereaved. I have been with that the ownership of grief is held by the pa- families in moments of intense grief and suf- tient and family and not by the nursing staff? fering. When I hear others talk of their expe- This notion is consistent with some of the riences with the dying, my own stories begin work of Doka (1989) on disenfranchised to resurface, begin to reveal themselves. My grief. In the case of nurses, they are often own memories of suffering are no longer not seen to be a member of the bereaved 6 McConnell et al. Journal of Applied Hermeneutics 2012 Article 11 family. Therefore, they hesitate to express and foot prints of a dying child. I wanted to grief, thus often forcing them into silence scream at his selfishness, at the unfairness of (Kuhn, 1989). When nurses experience loss parents having to watch their children die, through their work, they often believe that and the failure I felt for not being able to they neither have the right to grieve nor is it protect a child from death - - the ultimate their place to do so (Lev, 1989). Even when human failure. nurses have developed a close relationship to a patient who dies, they are denied the When Grief Refuses to Remain Concealed opportunity to grieve; such is the hidden na- ture of nurses’ grief (Clements & Bradley, We all seem to play a part in this conceal- 2005). ment. Nevertheless, the stories of death, dy- ing, and suffering live within us - - stories There may be something else at play that may be hidden, but are never complete- here. The combination of the inarticulate ly forgotten. We all carry grief. We all live nature of grief and disenfranchised grief with grief, which seems to need to expose would seem sufficient to begin to understand itself every so often. I have worked very the phenomena. Yet I am drawn back to the hard to keep my stories of grief hidden. work of Caputo on obligation. Certainly Even so, they find their way out. Often at there is an overwhelming sense of obligation unexpected times, stories of grief take over to bear witness to death and suffering. How- my vocal cords and make themselves known ever, in the context of nurses’ work, particu- to an unsuspecting audience. Perhaps it is larly in the acute care setting, there are also unnatural for grief to be hidden indefinitely the issues of managing conflicting obliga- for it is not its true nature. Grief likes to ap- tions, responsibilities, and expectations. The pear and disappear as it sees fit. Grief is a pain of turning towards death is intensified trickster. Grief is unpredictable. It hides be- in the chaos of acute care. I vividly remem- tween our words, refusing to be captured, ber a shift when I was assigned three pa- then comes tumbling out unexpectedly at tients: two with treatable illnesses (one with another time. It would seem then that, on a urinary tract infection and the other recov- occasion, grief wants to be let out through ering from a tonsillectomy and adenoidec- our stories. In a sense, grief itself wants its tomy) and one who was actively dying. I burden to be shared. badly wanted to be available to the dying child and her family in those last precious Footnote moments. I wanted to have the time to try to make those moments count. Yet because of *Although this paper is co-authored, it is my obligations to the other two children and written in the first person of the first author: their families, I kept being called away by McConnell. those other responsibilities and compelled to respond to the demands imposed upon me. References In comparison to the needs of the dying child, the demands of the other families Attig, T. (1996). How we grieve: Relearning seemed trivial. One father yelled at me for the world. New York, NY: Oxford being 10 minutes late giving his son Tylenol. 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