Social Science & Medicine 75 (2012) 217e 217e224
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Social Science & Medicine j o u r n a l h o m e p a g e : w w w . e l s e v i e r . co co m / l o c a t e / s o c s ci ci m e d
Acceptance of dying: A discourse analysis of palliative care literature Camilla Zimmermann University of Toronto, 610 University Ave., 16-712, Toronto, Ontario, Canada M5G 2M9
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Article history: Available online 29 March 2012
The subject of death denial in the West has been examined extensively in the sociological literature. However, there has not been a similar examination of its opposite , the acceptance of death. In this study, I use the qualitative method of discourse analysis to examine the use of the term acceptance of dying in the palliative care literature from 1970 to 2001. A Medline search was performed by combining the text words accept or acceptance with the subject headings terminal care or palliative care or hospice hospice care , and restricting restricting the search search to English English language language articles in clinical clinical journals discussing discussing acceptance of death in adults. The 40 articles were coded and analysed using a critical discourse analysis method. method. This paper focuses focuses on the theme theme of acceptance acceptance as integral integral to palliativ palliative e care, which had subthemes of acceptance as a goal of care, personal acceptance of healthcare workers, and acceptance as a facilitator of care. For patients and families, death acceptance acceptance is a goal that they can be helped to attain; for palliative care staff, acceptance of dying is a personal quality that is a precondition for effective practice. Acceptance not only facilitates the dying process for the patient and family, but also renders care easier. easier. The analysis analysis investig investigates ates the interte intertextual xtuality ity of these these themes themes with each other other and with previous texts. From a Foucauldian perspective, I suggest that the discourse on acceptance of dying represents a productive power, which disciplines patients through apparent psychological and spiritual grati�cation, and encourages participation in a certain way to die. 2012 Elsevier Ltd. All rights reserved. “
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Keywords: Acceptance Death Dying Palliative Palliative care Terminal Terminal care Hospice Discourse analysis
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Introduction
The contemporary Western attitude towards death has generally ally been been charac character terise ised d as one of denial denial (Aries, (Aries, 197 1974 4; Callahan, 2000;; Emanuel & Emanuel, 1998; 2000 1998; Gorer, 1980). 1980). This characterization has generated debate regarding the validity of the denial of death thesis (Kellehear, 1984; 1984; Zimmermann & Rodin, 2004) 2004) and whether or not we are or ever were a death-denying society (Seale, 1998; 1998; Walter, 1991). 1991). In oth other er public publicati ations ons,, the lens lens was was shifted to include investigation not only of the concept of death denial, but also of the discourse surrounding this subject and the reason reasonss for the exist existenc ence e of this this discou discourse rse (Armstrong, ( Armstrong, 1987; 1987; Zimmermann, 2004, 2004, 2007 2007). ). However, there has not been a similar investigation of the opposite of death denial: the acceptance of death and dying. This is the subject that I will address in this paper, using the method of discourse analysis to analyse how the term acceptance is used used regar regardi ding ng death death and dying in the clinical clinical palliative care literature. Discourse analysis is a method that has been approached from severa severall differ different ent the theor oreti etical cal orient orientati ations ons within within a number number of “
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0277-9536/$ e 0277-9536/$ e see front matter 2012 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2012.02.047 doi:10.1016/j.socscimed.2012.02.047
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disciplines (van (van Dijk, Dijk, 199 1991 1; Fairclo Fairclough, ugh, 1990 1990;; Parker Parker,, 1992 1992;; Potter & Wetherell, Wether ell, 1987 1987). ). The speci �c method that I will be using is critical discours discourse e analysis, analysis, as described described by Par Parker ker (1 (1992) 992),, whic which h is base based d on the poststru poststructur cturalist alist theories theories of Foucault Foucault (Foucault, ( Foucault, 19 1972 72,, 1977, 1977, 1979). 1979 ). In this this method method,, disco discours urses es provide provide framework frameworkss for debating debating the value value of one way of talkin talking g about about realit reality y over over other other ways (Parker Parker,, 1992 1992,, p. 5). More than just ways of speaking, discourses are syste systems ms of tho though ughtt and ways ways of carving carving our reality reality.. They They are struc structur tures es of knowle knowledg dge e that that in�uence uence system systemss of practi practices ces (Chambon, 1999, 1999, p. 57). Discourse analysis is concerned with the analysis of texts, which can be broadly de �ned as any form that can be given an interpretative gloss (Parker, 1992, 1992, p. 6); in my texts are journal journal articles. However However,, although although I am analysis analysis the texts analysing individual journal articles, my focus is not on what that individual author was thinking or meaning at the time the article was written. Rather, I am interested in the structures of knowledge that are represen represented ted by these individua individuall statement statements, s, which become become a discourse only in their relation to each other and to broader institutions and ideologies. Similarly, my aim is not to characterize the many different attitudes to death that are possible and that exist, over and above those of acceptance and denial, nor even to discu discuss ss whe whethe therr death death accep acceptan tance ce is possi possible ble or desir desirabl able. e. In focussing on acceptance, my speci�c aim is to examine in detail “
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how this term is used, or put to use in the palliative care literature, and how this may relate to broader social structures and practices. In previous papers, I examined the use of the term denial in the palliative care literature from 1970 to 2001 (Zimmermann, 2004, 2007). Two dominant themes were elucidated: denial as a psychological coping mechanism and denial as an obstacle to palliative care. In the � rst theme (Zimmermann, 2004), denial was represented as an unconscious psychological state that was normal and healthy when terminal illness was � rst diagnosed, but became maladaptive and pathological when it persisted beyond a certain span of time. I suggested that the de�nition of death denial as an individual psychological coping mechanism may allow for the labelling of patients who resist participation in the planning of their death. In the next paper (Zimmermann, 2007), I demonstrated how the label of denial was put to use by presenting the theme of denial as an obstacle to palliative care. Denial was perceived to be standing in the way of several components of palliative care: open discussion of dying, dying at home, advance care planning, symptom management and stopping futile treatments. I suggested that rather than being an obstacle, death denial e and indeed its very conceptualisation as an obstacle e may be seen as a construction that is instrumental to uphold a certain way to die represented by contemporary palliative care. In this paper, I examine the use of the opposite of denial : the term acceptance . Because discourses are historically situated e changing and developing in relation to their social environment e I have limited the search to the same period that I examined in my previous work on denial (1970e2001), which represents the �rst three decades of the development of hospice and palliative care. “
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presuppose other discourses (Parker, 1992, p.13) e notonly within the acceptance search, but also with the texts in the denial search, and in relation to broader systems of knowledge.
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Results
Three dominant themes emerged in the analysis: acceptance as integral to the practice of palliative care; positive characteristics of the acceptant patient; and acceptance of natural death. In this paper I will provide a detailed analysis of the �rst theme, which portrayed the acceptance of death as integral to palliative care, tied up in its clinical practice and in its philosophy. Not only was the acceptance of dying seen as a goal or psychological destination for patients and families, but the acceptance of the legitimacy of death (Kennie, 1983) was also regarded as a necessary, unifying aspect of health care workers practising palliative care. These two subthemes are discussed below, as is the related subtheme of acceptance as a facilitator for palliative care. The themes of positive characteristics of the acceptant patient and acceptance of natural death will be addressed in a subsequent publication. “
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Acceptance as a psychological goal
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The theme of acceptance as a psychological goal has intertextuality with the themes of denial as a defence mechanism and of denial as temporary (Zimmermann, 2004). In the latter themes it was assumed that denial may be functional in the initial process of coping with a terminal illness, but that with time and counselling patients could be helped to overcome this denial. The interplay of these arguments is apparent in the following passage from an article retrieved in both the denial and the acceptance searches:
Methods
Following the method for the previous discourse analysis on denial of death (Zimmermann, 2004, 2007), a Medline search (1970e2001) was performed by combining the text words accept or acceptance with the subject headings terminal care or palliative care or hospice care and restricting the search to English language articles. This search retrieved 180 articles, which were further restricted to those in clinical journals discussing acceptance of death in adults. Articles that discussed acceptance of chemotherapy, mechanical ventilation or other treatment, acceptance of support groups or other therapy, or self-acceptance, without explicit mention of the acceptance of death, were excluded. Articles that speci�cally discussed acceptance of euthanasia, rather than of death and dying in general, were also excluded. After applying these inclusion and exclusion criteria, there remained 40 articles (7 of which had also been retrieved in the denial search), for which the references are listed in the Appendix. The articles appeared in hospice/palliative care journals (9/40), medical journals (16/40), nursing journals (10/40), psychiatry journals (2/40), a social work journal (1/40), a physiotherapy journal (1/40) and a multidisciplinary journal (1/40; Patient Education and Counselling ). The retrieved articles were coded according to the method described by Potter and Wetherell (1987). The articles were closely read and themes or bodies of instances (Potter & Wetherell,1987, p. 167) related to the meaning and usage of the term acceptance were identi�ed. Categories of themes were collected by photocopying all the relevant pages containing a certain theme and placing them in their own �le. The pages in each �le were then analysed in greater detail, following Parker s (1992) criteria for distinguishing discourses. The connotations, allusions and implications which the texts evoke were explored, with particular attention to intertextuality, or how the texts embed, entail and
Dying people often experience a range of strong emotions denial, anger, bargaining and depression - before coming to accept the near prospect of their death. By offering support and being prepared to listen, nurses can help patients and their families express their feelings and possibly proceed onto acceptance (Claxton, 1993, p. 206).
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The article, entitled Paving the way to acceptance is explicitly based on Kübler-Ross s stages of dying (Kübler-Ross, 1969). Acceptance is a goal that can possibly be reached through the open expression of feelings facilitated by counselling. Several other articles also made reference to Kübler-Ross s stages of dying: it was stated that the physician who can recognise these stages may more easily respond to the needs and questions of a terminally ill patient (Guthrie, 1979, p. 13); that the role of the physician (.) needs a full understanding of the various adaptive stages involved in facing death, from initial denial to ultimate acceptance (Friel, 1982, p. 767); and that Kübler-Ross s conceptualisation serves to reinforce the concept of a process with different and, at times, identi�able stages (Fowler, 1994, pp. 196e197). In another article the stages were conceptualised slightly differently from those conceived by Kübler-Ross: “
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The mental state of a patient in the terminal stage of cancer changes step by step from denial of cancer, hope for a new treatment for cancer, suspicion of medical treatment, uneasiness regarding their future life, irritation, depression and acceptance or despair (Oyama, 1997, p. 150). In this article, the �nal outcome can be either acceptance or despair, demonstrating intertextuality with Erikson s description of the �nal identity crisis in old age as one of ego integrity versus despair (Erikson, 1950, pp. 268e269). According to Erikson, the person who has achieved ego integrity is satis �ed with life and ’
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accepts responsibility for its successes and failures; in general, this individual will accept impending death. Conversely, despair ensues for those who are not satis�ed with their lives, but realise that time is now too short for the attempt to start another life and try out other roads to integrity (Erikson, 1950, p. 269). Kübler-Ross also describes acceptance as an existence without fear or despair (Kübler-Ross, 1969, p. 120). The interplay between these and other stage theories of dying and their conceptualisation of acceptance will be further commented on in the Discussion. “
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patients and relatives openly accept cancer diagnosis and prognosis (Hunt,1992, p. 1298). In a study which was published as two papers, both of which were retrieved in the acceptance search, semistructured interviews were conducted with patients and health professionals (nurses and social workers) working in palliative care to elicit concepts of a good death (Low & Payne, 1996; Payne, Langley-Evans, & Hilier, 1996). Health professionals perceived a good death as controlling the patients physical symptoms and psychologically preparing them. Conversely, not dealing with patients fears and a patient s non-acceptance of death were identi�ed as factors related to a bad death (Low & Payne, 1996, p. 237). In the second paper, (Payne et al., 1996) perceptions of good and bad deaths were compared among patients and health care professionals. Of note, while lack of acceptance was identi�ed as one of the characteristics of a bad death according to the palliative care staff, it was not speci�cally mentioned by patients themselves. Conversely, dying suddenly was identi�ed as an element of the good death for patients but not for palliative care staff. This difference in perception of the importance of acceptance was explicitly addressed in a paper written by a social worker, but from her perspective as the caregiver of her terminally-ill husband (Wasow, 1984). In this essay, the author contrasts the peaceful images of dying portrayed by medical writers with the much gloomier (Wasow, 1984, p. 265) accounts of patients and relatives writing about their personal experiences. She questions the value of conveying acceptance, acknowledging that when confronted with the loss of someone dear, it can be dif �cult to accept positive ideas about dying put forth by others (p. 265). Thus, the concept of acceptance of dying as valued (Winland-Brown, 1998, p. 38), may be of greater relevance for professional caregivers than for patients and family members. “
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The experience proved bene�cial for the patient and enriching for the analyst. The patient was able to contain, work through and integrate the meaning and consequences of her disease, make reparations to her objects, and accept death with dignity (Minerbo, 1998, p. 83). The acceptance of death is the ultimate goal of the therapeutic interaction between physician and patient, with the analyst providing the medium by which this occurs. Similarly, another article describes the privilege of clinicians caring for the dying in enabling them to take that �nal step in acceptance and peace (Carwein, 1986, p. 57). Acceptance was deemed to be important for families as well as patients. In an article on initiating hospice care, it was stated: Just being there, explaining, teaching and preparing the family to accept the inevitable end will improve the family s ability to cope with the demands of caring for their loved one at home (Morris & Christie, 1995, p. 23). In an article entitled Care of the family when the patient is dying it was stated: Families need effective communication to help cope with and accept a terminal prognosis (Bascom & Tolle, 1995, p. 296). In yet another paper it was suggested that clinicians should recognize that family support and contact between the dying patient and family facilitate decision-making and acceptance of death (Danis, 1998, p. 110). Thus the palliative care clinician had a clear role in guiding not only patients but also their families, towards the psychological destination of acceptance. “
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Measuring acceptance Several articles referred to the measurement or judging of acceptance. Interestingly, in all of these papers, there was no direct input from the patient or relative whose acceptance was being evaluated; rather, the researcher observed unobtrusively the behaviour and interactions of the person being judged . In one article, the effects of death education under home hospice care (Kawagoe & Kawagoe, 2000, p. 37) were analysed for sixteen patients who died at home in Japan: “
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The acceptance of death by the patients was judgedaccording to the way they spent their remaining time, to their attitudes and to their hope for a life after death. Fourteen of 15 patients appeared to accept their own death. (...) As the goal of death education in home hospice care is the acceptance of death by both patient and family, our methods of death education appear to be effective (Kawagoe & Kawagoe, 2000, p. 37).
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Conveying acceptance: the clinician s role The clinician s role was not only one of recognizing and understanding that there are psychological stages that dying patients go through; there was also a teaching (Morris & Christie, 1995), facilitating (Danis, 1998), helping (Claxton, 1993) or enabling (Carwein, 1986) role for palliative care practitioners in the process of acceptance of dying. Here it was clear that the goal for dying patients is the gradual acceptance of death (Rousseau, 1995, p. 832) and that the palliative care clinician could facilitate this process. In one study published in the Journal of Holistic Nursing , oncology, parish and hospice nurses were surveyed to explore what nursing interventions they implement to enhance the spirituality of clients and how they learnt about these interventions (Sellers & Haag, 1998, p. 338). Listed among the most frequently identi�ed nursing interventions was conveying acceptance (p. 338). This was also apparent in an article in a psychoanalytic journal where the author recounts her experience with a patient who contracted cancer during the course of several years of analysis. When the patient could no longer leave the home the analysis was continued by telephone. The author reports:
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Acceptance as an element of the good death In keeping with acceptance as a goal of care, it was also regarded as an element of the good death . In one paper, conversations of nurses on a symptom control team with patients and relatives were audiotaped to de �ne elements of scripts that they used as a basis for their work, which implicitly or explicitly constituted attainment of good deaths for the patients and rewarding outcomes for the nurses (Hunt, 1992, p. 1298). One of these scripts was that “
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There is an assumption that patients and families need to be educated about death, and that the goal of this education is acceptance. Acceptance is judged according to criteria determined by the investigators. In another paper, the criteria for this judgement were not speci�ed; rather, the patient s psychosocial problems were explored shortly after admission, when a relationship between the staff and the patient was established and the patient was willing to disclose his problems (Sham & Wee,1994, p. 282). The results were documented as follows: “
While 53 (17.7%) patients were calm and assessed to be in the stage of acceptance on admission to the hospice, 44 patients expressed a lot of self-pity. They felt worthless and hopeless and were unable to �nd meaning in the �nal days of their life (p. 284).
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Acceptance was measured in two other papers, this time among patients and relatives in a home hospice setting. One paper assessed the contribution of acceptance to the quality of life of the patient (Hinton, 1994); the other, entitled The progress of awareness and acceptance of dying in cancer patients and their caring relatives (Hinton, 1999) documented the progression of acceptance, as assessed during eight weekly and then biweekly semistructured interviews. Consider the quotations below:
Several articles discussed the importance of the acceptance of the legitimacy of death (Kennie, 1983, p. 770), the ability to acknowledge the reality of death (Davies, 1980, p. 337), or the willingness to accept mortality and view death as the logical conclusion of life (Friel, 1982, p. 770). Acceptance of death in this context was regarded as an attitude that could be taught and learnt. In one article entitled Training physicians to care for the dying itis stated:
Various proportions [of patients] coped by optimism, �ghting their disease, partial suppression or denial, but 50% reached positive acceptance. Relatives were more aware and accepting (Hinton, 1994, p. 183).
It is hoped that such training will teach physicians to accept death as inevitable, to recognize and acknowledge the state of dying and, �nally, to understand that appropriate care includes appropriate death, which is one arrived at with minimal suffering, with minimal social and emotional impoverishment, with preservation or restoration of important relationships and with resolution of residual con�icts (Bulkin & Luskashok, 1991, p. 10).
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Acceptance usually increased, with 51% of patients and 69% of relatives becoming nearly/fully accepting. Many individuals diverged from the average progress of awareness and acceptance. 18% of patients and 24% of relatives showed �uctuating or falling acceptance (Hinton, 1999, p. 19). In the � rst passage the use of the word reached implies that acceptance is a goal or destination which is worked towards and arrived at; in the second passage its progress is measured chronologically. There is a dichotomy created between various ways of coping and the reaching the positive endpoint of acceptance. In these two studies, as in the others, acceptance was not measured by openly interviewing patients and family members. Rather: “
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The degree of acceptance was estimated in those aware that the disease might be fatal, based on any statements about their coming to terms with this prospect - or the opposite. (...) Ratings were made unobtrusively during the interview on a 1-9 linear analogue scale without interrupting rapport (Hinton, 1999, p. 21). Rather than treating acceptance as a subjective phenomenon to be explained by those experiencing it, it is documented stealthily by the interviewer. The justi�cation given for the treatment of denial as an objective diagnosis is that it is a defence mechanism, which must operate unconsciously in order to be effective in reducing anxiety (Hall, 1954, p. 90) and therefore cannot be accurately perceived by the patient. In the case of acceptance of dying, however, there is no similar historical psychoanalytic reason that it should be treated as a label imposed from the outside. The clinical imperative to diagnose likely in�uenced this treatment of acceptance. Keeping in mind how acceptance is treated for patients and families, we will now examine how it was framed for professionals working with the terminally ill. “
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Here, rather than being placed at the endpoint of a series of stages, as it was for patients, physicians acceptance of death is considered a necessary �rst step in the delivery of appropriate care for the dying, which includes an appropriate death. Another article (Rooda, Clements, & Jordan, 1999) correlated nurses negative attitudes towards death ( Fear of Death and Death Avoidance ) with negative attitudes towards caring for dying patients, and positive attitudes towards death ( Approach Acceptance and Neutral Acceptance ) with positive attitudes towards caring for the dying. Both attitudes to death and attitudes towards caring for dying patients were measured by multi-item questionnaires completed by the nurses themselves. Approach Acceptance was de�ned as the extent to which a person views death as the entry point to a happy afterlife and Neutral Acceptance was de�ned as the extent to which a person accepts death as a reality in a neutral way (i.e. neither welcoming nor fearing death) (p. 1685). The authors conclude: ’
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While the articles considered above discussedacceptance on the part of patients and family members, other articles emphasised the importance of acceptance of dying on the part of health care personnel working with the dying. In these articles, acceptance of death by health care workers was regarded not only as desirable but also as tightly intertwined with the philosophy of palliative care. In order to be able to direct patients and families towards acceptance, the health care worker would �rst need to have accepted death, both as a personal reality and as a reality for his or her patients. In the case of health care workers, acceptance was treated neither as a goal to be worked towards, nor as the endpoint of a series of stages. Rather it was regarded as an attitude towards death in the abstract, which could be taught , or as a subjective state that could be achieved by self-re�ection. “
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Professionals who are responsible for designing educational programs focussed on nurses attitudes toward caring for terminally ill patients may want to include an assessment of death attitudes and interventions aimed at decreasing negative attitudes and increasing positive attitudes toward death in such programs (Rooda et al., 1999, p. 1683). ’
Once again, acceptance of death is treated as an attitude that is learnable in an educational setting. Of note, the data were gathered by self-completed questionnaires, rather than by means of an interview by a third party who then decided whether or not death was accepted. For physicians and nurses, acceptance of dying was treated as a personal matter but one with important consequences for the successful delivery of palliative care. In one review article, it was stated: “
Personal acceptance of death by health care workers
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Palliative care ... requires a personal acceptance of death and an acknowledgement that dying does not denote a failure to provide good medical care but, rather, calls for an acquiescence that curative treatment is no longer feasible (Rousseau, 1995, p. 779, italics added). Here the acceptance of death by physicians on an individual level is linked to their ability to acknowledge dying on the part of their patients without feeling that they have failed them. In another study, family physicians whoincludedpalliative care as part of their practice were interviewed in order to examine factors that in�uenced this decision.
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The overriding theme was a common philosophy of palliative care focussing on acceptance of death, whole person care,
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compassion, communication and teamwork. (...) Participants argued compellingly for transferring the philosophy of palliative care to the overall practice of medicine (Brown, Sangster, & Swift, 1998, p. 1028).
of acceptance is included explicitly as an obstacle to the provision of care by nurses, as are families misunderstandings, requests for technical treatment and anger. Helps , on the other hand, are related to themes associated with the acceptance of dying: families acceptance of the prognosis and dying with dignity areboth listed as helps , which not only make dying easier for the patient and his or her family, but also facilitate care of the dying patient by the nursing staff. Several other articles explicitlyacknowledged that acceptance of death makes the process of caring for the dying easier for palliative carestaff. In one article examining the relationship between truthful communication with terminal cancer patients about their disease and patients psychological well-being, it was stated: ’
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The importance of acceptance is further elaborated on:
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One key aspect of their philosophy was acceptance of death. Participants recognized death as an important part of the life cycle. Working through their own feelings around death and dying was paramount (p. 1030). Keeping in mind that the objective of the article was to examine factors that in�uence family physicians decisions to practice palliative care (p. 1028) it is a powerful � nding that their common philosophy had acceptance of dying as a key aspect. For these physicians, the acceptance of death was of central importance not only generally, as an important part of the life cycle but also for themselves and for the overall practice of medicine . The preceding subsections have discussed the conceptualisation of acceptance of dying as being integral to the practice of palliative care, both as a psychological goal forpatients and their families, and as a unifying ideology for practitioners of palliative care. The next section will shed light on a possible reason why the acceptance of death is deemed to be so important. “
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Patients who accept their condition can formulate realistic demands in accordance with their situation, making the task of the staff much easier and in turn favouring satisfactory consensus with respect to treatment and the objective of hospitalization (Bishara, Loew, Forest, Fabre, & Rapin, 1997, p. 20).
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In another article written by an internist specializing in critical care medicine, entitled Help your patients families accept the inevitable , �ve categories of families are described: the hostile family, the guilt-racked family, the hear-no-evil family , the divided family and, lastly, the accepting family. This last category is described as follows: “
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Reaching agreement with this sort of family should be relatively easy. They are accustomed to relying on the doctor s judgement. And even with their limited knowledge of medicine, they realize that Grandma isn t doing well,and the last thing they want to do is prolong her agony (Reisman, 1989, p. 183).
Acceptance as a facilitator in the provision of end-of-life care “
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The close relationship between acceptance as a goal in care and acceptance as helpful in the provision of end-of-life care is exempli�ed in this statement:
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And in another article it is explicitly stated:
We stress the role of hospital staff and general practitioners in helping patients accept a terminal prognosis, so that better planned care can proceed (Seale & Kelly,1997, p. 93, italics added). Here the reason given that patients should accept that they are dying is so that they can plan for the future. The use of the word proceed is interesting in that it refers to going forward with carrying out a process. The process of managing individuals and their deaths is impeded if they are not ready to accept that they are dying. The ultimate goal is better-planned care, and acceptance is a precondition for the achievement of this goal. Another article sheds a different light on the acceptance of dying, examining its helpfulness on the giving rather than the receiving end of care. The article, published in the American Journal of Critical Care examined critical care nurses perceptions of obstacles and helpful behaviours [also referred to as helps ] in providing end-of-life care to dying patients (Kirchhoff & Beckstrand, 2000, p. 96). Here the focus was explicitly on the nurse rather on the patient; nurses were asked what impeded or facilitated their care for patients. “
To some degree, self-interest can also determine attitude formation. For example, a caregiver may �nd her job easier when she deals with a calm, accepting patient who requires little effort (Murray & Neilson, 1994, p. 34). A colleague of these authors is quoted as having said:
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Mrs. X is a wonderful patient.She is a Christian who believes in an afterlife where she will be onewithChrist. She accepts deathwith faith that a better world lies beyond. Her family shares that belief andhas a calm, acceptingattitude. Shemakes myjob soeasythat I look forward to visiting her. (Murray & Neilson, 1994, p. 35). ‘
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Six of the top ten obstacles were related to issues with patients families that make care at the end of life more dif �cult, such as the family s not fully understanding the meaning of life support, not accepting the patient s poor prognosis, requesting more technical treatment than the patients wished and being angry. ... Most helps were ways to make dying easier for patients and patients families, such as agreement among physicians about care, dying with dignity, and families acceptance of the prognosis (Kirchhoff & Beckstrand, 2000, p. 96).
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Thus, while some articles emphasise that acceptance helps to promote an easier death for the patient and family, others demonstratethe ease of care thatthis acceptance generates forpalliative care providers themselves. The tension and overlap between these two outcomes of acceptance will be addressed in the Discussion. “
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Discussion
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The binary opposition of acceptance and denial of dying is presented explicitly by psychiatrist Avery Weisman: denial cannot be diagnosed without at least an implicit assessment of acceptance. Denial and acceptance are always counterpoised, so that the significance of one is automatically drawn from the appraisal of the other (Weisman, 1972, p. 79). This dichotomy was apparent in the intertextuality between the current acceptance search and the previous denial search (Zimmermann, 2004, 2007). While denial was regarded as a transitional psychological state, the acceptance of death and dying was integral to palliative care: a psychological goal for patients and families, and a central, unifying aspect of the philosophy of palliative care for health care workers. While denial “
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Although this article was not retrieved in the denial search, it contributes to the narrative elaborated in the denial results of denial as an obstacle to proper patient care (Zimmermann, 2007), drawing an explicit dichotomy between helps and obstacles. Lack “
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was seen as an obstacle to care, acceptance was conceived as a facilitator in the provision of end-of-life care by health care workers, with accepting patients being easier to manage and provide better planned care for. These discourses on acceptance and denial stand at opposite poles of the same discourse: together, they both presuppose and contribute to the construction of a larger discourse on a correct way to die , which is closely linked with changes in the practice of medicine and idealised in the construct of the good death . The necessity of planning for the future,of discussing endof-life decisions such as where to die, whether or not to resuscitate, whether or not to feed, whether or not to hydrate, creates an imperative for patients to openly discuss and accept that they are dying. The model of aware dying (Glaser & Strauss, 1965) is not only a modern psychological ideal; it is a medical necessity of a system that relies on open discussion for the ef �cient management of the dying person. The acceptant patient is favoured because this attitude is concordant with institutional practices and makes dying easier not only for the patient and family, but for those caring for the dying and for the systems supporting these practices. A brief review of the history of hospice is necessary in order to further place these themes in their historical context. The hospice movement was conceived between 1957 and 1967 (Clark, 1998), and developed a global in�uence over the following three decades (Clark, 2002). St. Christopher s Hospice, the world s �rst hospice and the epicentre of the movement (Clark, 1998, p. 43), was founded by Cicely Saunders in 1967 and directed by her until 1985. Other key �gures e all in�uenced by Saunders e were Canadian Balfour Mount, who coined the term palliative care and opened the Royal Victoria Palliative Care Unit in 1975; Florence Wald, Yale Dean of Nursing, who founded the � rst American hospice program in 1974; and Elizabeth Kübler-Ross, who in addition to publishing On Death and Dying in 1969, lobbied in favour of the Medicare Hospice Bene�t in the United States, which was eventually established in 1982. The in�uence of Cicely Saunders as founder of the hospice movement was paramount. In addition to being trained as a nurse, social worker and physician, Saunders was also deeply religious, with a strong Christian faith. Thus she personi �ed the interdisciplinary, whole-person , bio-psychosocial-spiritual care of the dying that was central to her philosophy. Thetendency to conceptualise adjustment to dying as occurring in stages has psychological roots, (Kübler-Ross, 1969; Pattison, 1977) although it was subsequently taken up in the clinical literature on patient-clinician communication (Buckman, 1998). The stage of acceptance is last in all the stage formulations; reaching this stage requires psychological work, so that the intrinsic fear and denial of death may be overcome. Accordingto Kübler-Ross (1969), the stage of acceptance shouldnot be mistaken fora happystage. It is almostvoid of all feelings (p.113). It is the end of a process of gradual separation (decathexis) where there is no longer a two-way communication (pp. 119e120). Pattison (1977) describes the terminal phase where itis possible to give up one s grappling with life, and an acceptable regression occurs where the self gradually returns to the state of nonself. Both of these formulations bear resemblance to disengagement theory(Cumming & Henry,1961), whereageingentails a gradual withdrawal of the self from societal interactions, which is functional for leave-taking (Marshall, 1980, pp. 80e82). Throughout the 1980 s and 90 s therewere many critiquesof thestageconcept andof KüblerRoss s work (Charmaz, 1980; Littlewood, 1993; Marshall, 1980), and Buckman, whowas an oncologistrather than a psychologist, included a caveat that acceptance is not an essential state provided that the patient is not distressed, is communicating normally, and is making decisions normally , for example, concerning treatment or social arrangements (Buckman,1998, p.146). This caveat is in keepingwith the results of this paper: acceptance is not essential as long the patient s lack thereof does not interfere with care; its function is not “
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only psychological, but extends into the practical realm of medical decision-making. Acceptance has been conceived as a task that is not only psychological and functional, but also religious and/or spiritual. Indeed the theme regarding personal acceptance of palliative care staff e the necessity of � rst having accepted in order to enable and facilitate acceptance in others e resembles missionary work rather than medical work. This is not surprising given the Christian origins of the hospice movement (Garces-Foley, 2006). Cicely Saunders felt strongly that her work in palliative care was a calling that had both medical and spiritual dimensions. In a letter written in 1960 to a church consultant, she wrote: . in this work the medical and spiritual are inextricably mingled. I long to bring patients to know theLord andto do somethingtowards helping many of them to hear of Him before they die, but I also long to raise the standards of terminal care throughout the country from a medical point of view. (cited in Clark, 2001, p. 356). This blending of the medical and the spiritual, exempli�ed in Saunders concept of total pain (Clark, 1999), remains a central component in contemporary palliative care (Sinclair, Raf �n, Pereira, & Guebert, 2006). Aside from its obvious association with interdisciplinary care of the whole patient, this blendallows the constructionof a moral foundationfor practical concerns. The goal of acceptance is generally represented as better for the patient and family, enabling a peaceful death. However, care of the acceptant patient is easier not only spiritually and psychologically, butalso medicallyand socially; notonlyfor thepatient and family, but also for the professionals who provide care for them. The Christian charisma of early hospice development has often been counterpoised with the modern bureaucracy that hospice is said to have succumbed to. Bradshaw (1996) blames the routinisation and bureaucratization of hospices on the loss of the original Christian charisma of hospice, observing that the original Christian calling for palliative care, exempli�ed in the Christian origins of the hospice movement and the strong Christian faith of Cicely Saunders, has been lost. For Bradshaw, the religious faith that upheld the ideas of hospice has been replaced by a secular spirituality,hospice workers who had a calling are replaced by careerists whosee palliativecare as just a job , and death is nolongera truth to be confronted but a process to be managed (Bradshaw, 1996, p. 418). However, James and Field (1992) have pointed out that from a Weberian perspective, routinisation is a necessary and inevitable development in movements which are to survive their initial charismatic leadership (p. 1373). I would argue further, from a Foucauldian perspective (Foucault, 1977, 1979), that the Christian charismatic appeal to accept one s death cannot be separated from, and indeed facilitates, the bureaucratic imperative to manage the dying. There was never a time when death was not a problem to be managed ; however, the manner inwhich it exists as a problem and the way its management occurs is historically and culturally contingent and re�ects contemporary power relations. Power, as conceptualised by Foucault, is not only able to suppress discourse but also able to produce it (Lupton, 2003). This incitement to discourse (Armstrong, 1987; Foucault, 1977) e speaking about dying e is a necessity for the modern planned death. The acceptance-denial dichotomy is an important component of this discourse, represented on one pole by the negative label of denial, and on the other by the spiritual charisma of acceptance. The good death exempli�ed by hospice care is often portrayed as having arisen in reaction to a medicalised, isolated death (Elias, 1982; Kübler-Ross, 1969; Sudnow, 1967). However, as McNamara, Waddell, and Colvin (1994) have pointed out in their examination of the good death ideal in UK hospices, the hospice environment provides for a different mode of socialisation to dying, which bene�ts not only the individuals involved, but also the organisations that maintain the service. Similarly, Hart, Sainsbur, and Short “
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(1998) pointed out that the ideology of the good death legitimates a newform of social control over dying people; their choices are powerfully shaped and controlled to this end (p. 75). And Timmermans (2005) describes how hospice staff broker this death through active management of both the physical condition of the patient and the actions and expectations of the dying and their relatives (p. 998). I suggest that this control is achieved not only by hospice staff, but also by patients and families themselves, who are important participants in the power structure. Through the process of accepting impending deathe either their owndeath or the death of the family member they are caring for e they are made subjects of a larger discourse on dying, which is in conformity with the requirements of modern health care systems. Thus the imperative to accept death, tightly connected with the quest of hospice and palliative care to relieve physical, psychological, social and spiritual suffering, also cannot be separated from the institutions of hospice and palliative care and the structure of broader health care systems. For it is through the acceptance of death itself and of the state of dying that death can be managed and controlled. The discourse on acceptance and the denial-acceptance dichotomy sustain an ideal of a preferred way to die. This way to die, which represents a public interest in the dying process and its management, is supported by the discourse of a personal spiritual quest for death acceptance on the part of the dying and their families. Consistent with Foucault s conception of power as disciplining rather than only coercive (Foucault,1979), dying individuals and their families are made to see themselves as individuals who deny death, and as being capable of transformation through acceptance, with help from empathic health care workers. The players appear to be caught in a disciplinary web, where acceptance is rewarded and resistance results in the label of denial and an offer of psychological assistance (Zimmermann, 2004, 2007). Is there a way out of this web? The discourse on euthanasia e a weighty topic worthy of separate investigation e would seem to stand in radical opposition to the ideals of the hospice movement (Pereira et al., 2008), although there are also signs of its possible incorporation into this movement (Addington-Hall & Karlsen, 2005; Seale & Addington-Hall, 1995). As well, the expansion of palliative care outside the traditional domain of cancer into non-cancer diagnoses, where death is not as easily predicted (Chattoo & Atkin, 2009; Seamark, Seamark, & Halpin, 2007), andearlier into the course of the illness (Temel et al., 2010), will both re�ect and in�uence discourses on the correct attitude to death. In the end, however, discourse cannot stand outside itself (Armstrong, 1987, p. 656), and its meandering path can be traced to the institutions it supports, the ideologies it creates and the power relations it reproduces. The societal management of death will continue to rely on available ideals for its support; whether the acceptance-denial dichotomy will remain relevant will only be apparent with time. “
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Acknowledgements
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Appendix: Articles included in discourse analysis
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Bascom, P., & Tolle, S. (1995). Care of the family when the patient is dying. Western Journal of Medicine, 163(3), 292e296. Bishara, E., Loew, F., Forest, M., Fabre, J., & Rapin, C. (1997). Is there a relationship between psychological well-being and patient-carers consensus? A clinical pilot study. Journal of Palliative Care, 13 (4), 14e22. Brown, J., Sangster, M., & Swift, J. (1998). Factors in �uencing palliative care. Qualitative study of family physicians practices. Canadian Family Physician, 44, 1028e1034. Bulkin, W., & Luskashok, H. (1991). Training physicians to care for the dying. American Journal of Hospice and Palliative Care, 8(2), 10e15. Burgess, D. (1994). Denial and terminal illness. American Journal of Hospice and Palliative Care, 11(2), 46e48. Carwein, V. (1986). Home hospice care in Britain and the United States. Caring, 5(10), 54e57. Claxton, J. (1993). Paving the way to acceptance. Psychological adaptation to death and dying in cancer. Professional Nurse, 8 (4), 206e211. Danis, M. (1998). Improving end-of-life care in the intensive care unit: what s to be learned from outcomes research? New Horizons, 6 (1), 110e118. Davies, B. (1980). Physiotherapy in the care of the dying. Physiotherapy Canada, 32(6), 337e342. Donnely, S. (1999). Folklore associated with dying in the west of Ireland. Palliative Medicine, 13(1), 57e62. Fowler, J. (1994). Welcome focus on a key relationship. Using Peplau s model in palliative care. Professional Nurse, 10 (3), 194e197. Friel, P. (1982). Death and dying. Annals of Internal Medicine, 97 (5), 767e771. Guthrie, D. (1979). The hospice movement e Dr. Kübler-Ross: a positive acceptance of death. Bulletin of the American College of Surgeons, 64 (4), 12e13. Heim, E., Augustiny, K., Schaffner, L., & Valach, L. (1993). Coping with breast cancer over time and situation. Journal of Psychosomatic Research, 37 (5), 523e542. Hinton, J. (1994). Can home care maintain an acceptable quality of life for patients with terminal cancer and their relatives? Palliative Medicine, 8(3), 183e196. Hinton, J. (1999). The progress of awareness and acceptance of dying assessed in cancer patients and their caring relatives. Palliative Medicine, 13(1), 19e35. Hughes, N., & Neal, R. (2000). Adults with terminal illness: a literature review of their needs and wishes for food. Journal of Advanced Nursing, 32 (5), 1101e1107. Hunt, M. (1992). Scripts for dying at home e displayed in nurses , patients and relatives talk. Journal of advanced Nursing, 17 (11), 1297e1302. Kawagoe, H., & Kawagoe, K. (2000). Death education in home hospice care in Japan. Journal of Palliative Care, 16 (3), 37e45. Kennie, D. (1983). Good health care for the aged. The Journal of the American Medical Association, 249(6), 770e773. ’
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Kirchhoff, K., & Beckstrand, R. (2000). Critical care nurses perceptions of obstacles and helpful behaviors in providing end-of-life care to dying patients. American Journal of Critical Care, 9(2), 96e105. Low, J., & Payne, S. (1996). The good and bad death perceptions of health professional working in palliative care. European Journal of Cancer Care (English Language Edition), 5(4), 237e241. McHue, J. (1995). The naturalness of dying. The Journal of the American Medical Association, 273 (13), 1039e1043. Minerbo, V. (1998). The patient without a couch: an analysis of a patient with terminal cancer. International Journal of Psycho-Analysis, 79 (Pt 1), 83e93. Morris, R., & Christie, K. (1995). Initiating hospice care. Why, when and how. Home Healthcare Nurse, 13(5), 21e26. Murray, M., & Neilson, L. (1994). Denial: coping or cop out? Canadian Nurse, 90(2), 33e35. Oyama, H. (1997). Virtual reality for the palliative care of cancer. Studies in Health Technology & Informatics, 44 , 87e94. Payne, S., Langley-Evans, A., & Hilier, R. (1996). Perceptions of a good death : a comparative study of the views of hospice staff and patients. Palliative Medicine, 10(4), 307e312. Reisman, R. (1989). Help your patients families accept the inevitable. Medical Economics, 66 (8), 178e180, 182e4. Rooda, L., Clements, R., & Jordan, M. (1999). Nurses attitudes toward death and caring for dying patients. Oncology Nursing Forum, 26 (10), 1683e1687. Rousseau, P. (1995). Hospice and palliative care. Disease-A-Month, 41 (12), 779e842. Seale, C., & Kelly, M. (1997). A comparison of hospice and hospital care for people who die: views of the surviving spouse. Palliative Medicine, 11(2), 93e100. Sellers, S., & Haag, B. (1998). Spiritual nursing interventions. Journal of Holistic Nursing, 16 (3), 338e354. Sham, M., & Wee, B. (1994). The � rst year of an independent hospice in Hong Kong. Annals of the Academy of Medicine, Singapore, 23 (2), 282e286. Stern, S., & Orlowski, J. (1992). DNR or CPR e the choice is ours. Critical Care Medicine, 20(9), 1263e1272. Taylor, C. (1994). Ministering to persons who face death. Practical guidance for caregivers of persons making end-of-life treatment decisions. Health Progress, 75(4), 58e62. Thorpe, G. (1993). Enabling more dying people to remain at home. British Medical Journal, 307 (6909), 915e918. Wasow, M. (1984). Get out of my potato patch: a biased view of death and dying. Health & Social Work, 9 (4), 261e267. Winland-Brown, J. (1998). Death, denial and defeat: older patients and advance directives. Advanced Practice Nursing Quarterly, 4 (2), 36e40. Zylicz, Z. (2000). Ethical considerations in the treatment of pain in a hospice environment. Patient Education and Counseling, 41(1), 47e53.
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