Motivation and stress experienced by staff working with the terminally ill

Concern with needs of dying patients too often leads to neglect of corresponding needs of staff members who work with them. This paper describes how motivation of staff to work with dying patients can effect the job stress they encounter. It is suggested that staff often choose to work with the dying for one of six reasons: accident or convenience, a desire to do the “in thing” or to affiliate with a charismatic leader, intellectual appeal and a desire for mastery over pain and death, a sense of “calling,” previous personal experience, and a suspicion that one might some day develop the disease.

Each motivation may lead to its own particular forms of stress. In addition, constant exposure to the dying can effect one's personal life and relationships with family members and friends. A number of suggestions are given for coping with job stress including: understanding one's own limits, maintaining a balanced personal life, and developing effective support systems on and off the job.     

A sexual bill of rights for dying persons

All people are sexual beings regardless of their age, physical status, or stage in life. This article draws on the experience of two professionals who have counseled numerous dying people and their significant others. It identifies 15 “rights.” For each “right,” a theoretical discussion is given as well as case studies illustrating the acquisition of the “right.” Human sexuality is life affirming. The process of dying can be a growing, life-affirming, sexual experience.     

We covered death today

Death education is passing over the invisible threshold to social acceptance. This “success,” however, brings a new set of risks. Focus in this article is upon the possibility that death education might be manipulated to serve as a more sophisticated form of denial rather than an open and disciplined inquiry into our relationship with mortality. Trends toward narrowing and neutralizing the subject can already be seen. The full scope of death-related issues is often reduced to selected aspects of the dying process. This makes it easier to retain the illusion of control which, in turn, reduces anxiety. The neutralizing process can be seen in the assimilation of death as just one more fact of life. We accept those connotations of death that support the personal and social status quo, but continue to ignore or deny death's most unique implications. It is recommended that the death educator be aware of the social pressures and expectations to deliver a comforting “product” rather than a searching encounter.     

Presenting biological data in a course in death and dying

This article focuses on a current problem in our society: determining when someone has died. This problem is important in an introductory death and dying course. First, because it appears to be a biological or scientific question whose solution depends on empirical methods, it allows us to discuss current technologies and clinical approaches to dying people. In the process of carrying on this discussion, we become aware that what appears to be a factual problem is actually a complex web of empirical and axiological difficulties. This particular problem is valuable in a broader sense because it makes students recognize that problems related to death and dying require decisions based on mixtures of fact and values. Second, extrapolating from the special concerns of those dealing with problems in death and dying, the question of expertise can begin to be seen in a new light. This allows us to emphasize the role of every person in the making of value decisions.

Last, although a variety of problems have this aspect of being at once factual and value laden, this problem is an essential part of a course in death and dying because it is one that many members of our contemporary society may be expected to face themselves. The preliminary reflection on this problem carried out in a course on death and dying thus provides important preparation for people to make an informed decision when and if this distressing question arises in their own lives.     

Creative to the end…and beyond

A well-known children's book author discovers that he is dying and, finding it difficult to talk about his experience, chooses to use his storybook character to help express his innermost feelings about this crisis in his life.

In this article, I present a perspectiue on life and death as seen through the eyes of Little Toot, a popular character in the world of children's literature. Little Toot is the frolicking, adventureous tugboat whose travels on the waterways of the world hue captured the imaginations of children and their parents for three generations. More than an inanimate figure, he is the voice of his author and illutrator, commenting on life as it is and as he wishes it would be.

Hardie Gramatky was in the midst of creating a sequel to Little Toot entitled Little Toot and the Loch Ness Monster when he was diagnosed with inoperable abdominal cancer. Throughout his illness, he continued to work on the drawings, and shortly before his death the story line took final shape in his mind. By then, writing was physically difficult for him, so he dictated what was, in retrospect, a gut reaction to the dying process. The story, rich in symbolism, bears eloquent witness to the end of one person's life.

And the product of this creativity lives on. The story was published and appeared in animation on Shelley Duvall's TV program “Bedtime Stories.” This article affirms the theory that meaningful communication is not limited to erbalization and stads as vivd testinmony thal creativity is not diminished by the dying process.     

The traditional and the technological way to die

The process of dying is that which takes a living organism from a state of life to one of death. This process can be adequately described as part of the process and transformation of organic material. But the act of dying for a human being, just as a human being's process of life, is not something merely biological; it also has an element essential in humans: a social aspect. When a human being meets death, various people are involved: the person who dies who is said to leave, who goes somewhere, and those who remain, who perhaps have to help this first person at a moment when that person might require collaboration. Both the person who dies and those who remain must come to terms, must assimilate, the act of dying. All participants in the process of death have to come to grasp with the reality that by this event one of them abandons his/her place in their social relation network. Associated with this radical abandonment, one comes face to face with a tradition which relates this parting with the ideas of a soul, God and immortality. One also faces how to socially organize the process of death, the direct meeting of man with death, which we call the way of dying, as part of this final event in one's life.     

Dealing with dying patients: Difficulties and strategies in final-year medical students

The study reports on a questionnaire study of final-year medical students' self-reported attitudes to dealing with dying patients. All respondents had some direct clinical experience with dying patients, and reported that such encounters were largely unproblematic. Alleviating patient anxiety and counseling relatives were seen as important aspects of the doctor's role, along with diagnosis, and management of symptoms. “High fear” respondents were more likely to report difficulty in discussing the prognosis with the dying and to experience minor psychological problems.     

Can we talk? on the elusiveness of dialogue

In this article, I write about dialogue on ethical issues in the flied of death and dying. I leave it to others to address the specific ethical issues. My focus is applied ethics in general and especially our manners of speaking about ethical issues. I first consulter an appropriate approach to applied ethics that places great emphasis on narrative and dialogue. I then treat the theme of dialogue itself. The title “Can We Talk?” defines the shape of my treatment of that them. As talk, dialogue has distinctive contour and value. To engage in dialogue, persons must conceive of themselves and behave as a distinctive type of we, and through dialogue they aim to define the kind of we they wish to be. Persons can engage in dialogue only if they avoid personal and social, factors that tend to inhibit or undermine it. The near unavoidability of these inhibitors makes necessary dialogue about ethical issues elusive.     

Terri Schiavo: a disability rights case

The author argues that Terri Schiavo was a “person with a disability” who faced disability discrimination, a view that is consistent with national disability rights groups. The author notes that Schiavo was not “terminally ill” and that feeding tubes should not be considered “medical equipment.” The belief that people with severe disabilities want to die is questioned, since many people who acquire severe disabilities change their minds about suicide, and implications for advance directives are explored. Finally, the author notes that although Terri Schiavo was a disabled woman, women's groups did not take up her cause.     

Living and dying in the Jewish way: secular rights and religious duties

This article compares and contrasts the modern American secular emphasis on individual rights and autonomous decision-making in the “right to die” context with the traditional emphasis on obligation to others and to God found in Orthodox Judaism. The approach of Conservative and Reform Judaism to decision-making about life-sustaining medical treatments also is explicated and used as the basis for posing a variety of questions regarding the proper balance and relative influence of religious and secular values for modern American Jews in grappling with the difficult ethical dilemmas posed by “right to die” scenarios.     

Discretionary death: conditions, dilemmas, and normative regulation

The author examines a major shift in the conceptualization and practices relating to death and dying in Western and other societies with advanced medicine. This shift is the result of socio-technical and cultural developments characterized by but not limited to the routine widespread application of life support technologies in the hospital together with notions of increased patient rights. It has resulted in a class of end-of-life situations, which the author defines as “discretionary death.” The concept of discretionary death underscores the role of contextual and discretionary factors in end-of-life decision-making. The author identifies and discusses the necessary and complex process of norm formation that informs and regulates end-of-life medical practice and establishes societal consensus across society with respect to legitimizing “discretionary death.”     

Thanatology for everyone: Developmental labs and workshops

In an effort to “treat” the growing death concerns of many medical staffs, an experiential death and dying lab was created. Its evolution to meet changing needs is discussed, as well as future potential for work in this area.     

Good death inventory: a measure for evaluating good death from the bereaved family member's perspective

The aim of this study was to develop a measure for evaluating good death from the bereaved family member's perspective, and to examine the validity and reliability of the assessment. A cross-sectional anonymous questionnaire was administered to bereaved family members of cancer patients who had died in a regional cancer center from September 2004 to February 2006. We measured the Good Death Inventory (GDI), Care Evaluation Scale, and an overall care satisfaction scale. A retest was conducted one month after sending the questionnaire. Of the 344 questionnaires sent to bereaved family members, 189 responses were analyzed (57%). A factor analysis of the responses to the GDI identified 10 core domains: “environmental comfort,” “life completion,” “dying in a favorite place,” “maintaining hope and pleasure,” “independence,” “physical and psychological comfort,” “good relationship with medical staff,” “not being a burden to others,” “good relationship with family,” and “being respected as an individual.” Eight optional domains also were identified: “religious and spiritual comfort,” “receiving enough treatment,” “control over the future,” “feeling that one's life is worth living,” “unawareness of death,” “pride and beauty,” “natural death,” and “preparation for death.” The GDI had sufficient concurrent validity with the Care Evaluation Scale and overall care satisfaction, sufficient internal consistency (alpha = 0.74–0.95), and acceptable test–retest reliability (ICC = 0.38–0.72). Finally, we developed a short version of the GDI. The GDI is a valid scale to measure end-of-life care comprehensive outcomes from the bereaved family member's perspective in Japan.     

Advance directives and assisted suicide

Kemper and Murtaugh calculate what they term “lifetime use of nursing home care.” This is a measure of the time spent by the average person in a nursing home over a lifetime. Their conclusion, in qualitative form, is that the risk of entering a nursing home and spending a long time in a nursing home is “substantial” (1).     

The (re)construction of self after the death of a partner to HIV/AIDS

The aim of this study was to explore individuals' self-construals after the loss of a partner from HIV/AIDS for whom they were a caregiver. Seven gay or transsexual bereaved caregivers were interviewed after the death of their partners. The data revealed patterns suggestive of A. Aron and E. N. Aron's (1986) “inclusion of others in the self” (IOS) with partners described as part of participants' identity. Using the metaphor of the IOS, the results illustrate how care-giving became a part of the self as well as aspects of the partner. Upon the death of the partner, the loss resulted in a crisis of meaning due to the loss of the person and relationship that had contributed significance and purpose to life. Regaining meaning involved making sense of both the relationship and the caregiving role.     

Trust,intent, authenticity,and good dying: Beyond the autonomy debates and towards a philosophy of palliative care

At a time when death-and-dying are increasingly thought of as medical events, even to the point where professionals traditionally oriented towards healing are sometimes thought to be responsible for intentionally ending the lives of patients, it is becoming increasingly clear that palliative care is both unique and critically important. In this paper I show the need for clear articulation of the philosophy of this distinctive practice that properly acts with intent towards neither health in a narrowly medical sense nor patient death. I propose four lenses through which a rigorous philosophy of palliative care may be approached: trust, intent, authenticity, and the foundational question of good dying – literally euthanasia. I contend that proper palliative care seeks to cloak (palliare) pain within the context of trusting relationships both as a good in itself and as way of de-cloaking the things that form important components of most people’s narratives of good dying: opportunities to authentically engage with trusted others with the aim of finding some kind of meaning in life and community, even during the process of dying. Furthermore, palliative care is characterized by a non-paternalistic willingness to point outside of itself in order to help patients authentically engage the important existential questions of human mortality via lenses that extend beyond those offered by scientific medicine.     

Pursuit of assisted dying: a pilot study of inquiries made to a national consumer-based organization

Legal developments in assisted dying have focused on assisted suicide for mentally competent, terminally ill adults. Requests for assisted dying are likely to represent broader concerns, but studies have been limited to surveys of specific patient groups or recollections of physicians. To describe the nature of inquiries by a broad range of persons seeking assisted dying, a retrospective review was performed of confidential client memoranda summarizing telephone inquiries regarding assisted dying to a counseling service of a national, not-for-profit, consumer-based organization. The review evaluated the underlying medical condition prompting the inquiry, evidence of patient's decisional capacity, and relationship of caller to the patient. Of 125 assisted suicide calls, 111 with medical illness were analyzed. Among 111 inquiries, 71 (64%) were made by someone other than the person suffering from the illness (“the patient”); 52 (47%) of these were family members, 14 (13%) were friends, and 5 (7%) were professionals. Cancer accounted for 25% of cases, HIV/AIDS and amyotrophic lateral sclerosis (ALS) for 10 and 9%, respectively, other neurological diseases for 23%, and chronic or other medical conditions for approximately 17%. In an additional 10 cases, there was no medical illness. Within the group of callers inquiring on behalf of others, 18 (25%) stated the patient lacked ability to communicate his or her wishes and 7 (10%) stated there was uncertainty. Inquiries about assisted dying represent a broader range of concerns than represented by legal initiatives. More study is needed to determine if enhanced knowledge about alternatives, such as palliative care, reduces requests for assisted dying.     

Coping with mortality: An essay on self-mourning

The idea of “self-mourning” can be extended to shed light on the existential challenge of coping with life in the shadow of death. Coming to terms with personal finiteness and mortality can be understood as a grieving process. Just as grieving the death of another is an extremely complex and multifaceted experience with emotional, physical, spiritual, intellectual, and social impacts challenging the very integrity of the grieving person, so confrontation with and coming to terms with one's own finiteness (self-mourning in the extended sense proposed) has a similar range of impacts and poses a comparable challenge to personal integrity. Just as grieving persons coping with the death of another must work through the tasks of grieving, so persons coping with their own mortality must work through similar tasks. The extended concept of self-mourning illuminates the potentially lifelong struggle to cope with the finiteness, impermanence, uncertainty, and vulnerability that mortality entails. In conclusion, implications of these findings for death education are sketched.