Interventions 1 Running Head: INTERVENTIONS AND SUPPORTIVE COUNSELLING METHODS Campus Alberta Applied Psychology Letter of Intent A Handbook of Interventions and Supportive Counselling Methods For Facilitating a Good Death Linda Morrell Supervisor: Anne Vernon, PhD February 2007
Interventions 2 Letter of Intent A Handbook of Interventions and Supportive Counselling Methods For Facilitating a Good Death Problem Statement Death is a universal occurrence, but for those who are terminally ill, it takes on a new and urgent meaning. For these individuals, death has become an imminent reality that demands thought and preparation. It has been argued that medical science has taken over the art of dying and that this medicalization of death often precludes terminally ill individuals and their families from achieving what they consider to be a good death (Parker, 2004). Callan s (2001) first-person account of her mother s death from cancer is one example of how the medical profession all too often puts hospital policy ahead of the needs or wishes of the dying individual and their family members. Callan s mother seemed to be coping with her diagnosis of terminal cancer well enough, through a characteristic form of denial. With grace and dignity, and by consistently maintaining that everything is fine, just fine, she was helping both herself and her children find the strength and courage to deal with the reality of the disease and her impending death. This was, however, until a well-meaning doctor insisted that she, as with all his patients, openly acknowledge her imminent death before he would assign her a bed in his ward. The poor woman s defences were shattered and her family watched in horror as the doctor exposed their mother s private illness to everyone in the room. Callan described how everyone in her family died a little that day and she argued that her Mom s right to die a dignified death was taken away from her. This doctor s medicalized policy did not take the needs or wishes of this family into consideration; in fact, it found their needs to be less important than hospital policy (Callan, 2001, p.12).
Interventions 3 Family members who watch helplessly as loved ones suffer may be profoundly affected by the experience (Bourgeois & Johnson, 2004; Kubler-Ross, 1981). However, the experience of dying, for both patients and their loved ones, does not have to be filled with anxiety and sadness. With careful planning, understanding, and guidance, the experience of dying and death can be personalized, unique, and intimate. Knowing that the wishes of their loved one have been met may have a healing, cathartic effect on the bereaved and may lessen the depth of their despair (Emanuel & Emanuel, 1998). Being listened to and provided with what is needed to realize their physical, psychological, and social goals may dramatically improve the experience of dying for both patients and their families. More comprehensive resources are needed to assist patients and their families, caregivers, and health-care providers throughout this process. Project Rationale The purpose of this Campus Alberta Applied Psychology project is to review the literature that addresses the following issues for terminally ill cancer patients (over the age of 18) and their families: (a) What does a good death mean to the dying individual, the loved ones and family of the dying, and the caregivers of the dying and bereaved; (b) what does the dying individual need to achieve a good death; (c) what do the families and loved ones of the dying need to experience a positive end-of-life experience as they assist their loved one to die; (d) what promotes death with dignity for the dying individual; (e) what promotes death with dignity from the loved one s perspective; (f) which specific therapeutic approaches offer the most opportunity for gaining insight into the nature of death and grief; (g) which specific interventions and treatments facilitate positive experiences within the process of dying, for the terminally ill person and their family members; and (h) which specific interventions and treatments facilitate positive experiences after the death of a loved one. By addressing these questions, we may better
Interventions 4 understand the subjective perspectives of those with a terminal illness and be able to help them, their loved ones, and the medical professionals who work with them to achieve a good death. The end product of this project will be a compilation of information and resources related to the various factors and interventions that have been identified as contributing to a positive death experience for individuals who are terminally ill, and their family, friends, and caregivers. The material compiled for this project may eventually serve as the basis for an information and resource handbook made available to patients and their caregivers. It is expected that such a handbook would also be of service to other members of what Kastenbaum (2004) called the death system (i.e., the professionals involved in areas such as healthcare, funeral services, the clergy, and palliative care). Such a handbook would be a valuable addition to the existing literature, for several reasons. First, it would emphasize the importance of identifying and meeting the needs and wishes of the dying person. Second, it would provide a practical guide for loved ones to utilize in what is a time of extreme stress, when they are uncertain of how to help their dying loved ones and themselves. Third, the handbook would serve as a potential resource for medical professionals (and others) when providing aid and comfort to terminally ill individuals and their loved ones. It is hoped that with increased understanding and more available resources, more families can avoid the all-too-frequent trauma that Callan and her family experienced with their mother s dying. Lastly, the material compiled for this project will be aimed at a Canadian audience. Supporting literature Palliative care, which refers to the care and attention given to the physiological, psychosocial, and spiritual aspects of the end of life, has received increased attention in Canada in recent years. According to the Canadian Hospice Palliative Care Association (CHPCA),
Interventions 5 Health Canada established the Secretariat on Palliative and End-of-Life Care in June 2001 for the purpose of coordinating the development of a national strategy on end-of-life care for Canadians (CHPCA, 2003). Another Canadian body, the Quality End-of-Life Care Coalition of Canada (QELCCC), is based on the belief that all Canadians should have the right to die with dignity, without pain, and have the opportunity to be surrounded by their loved ones in a setting of their choosing (QELCCC, 2003). However, at the present time, quality end-of-life care is found primarily in hospice and palliative care (hospital) settings. I believe that given the appropriate resources, this setting can also be created in the comfort of the dying person s home (or wherever they choose) with a focus of care similar to that of hospice, which will allow the patient, family, loved ones, and caregivers the opportunity to achieve a positive end-of-life experience (i.e., a good death). It cannot be stressed enough how a palliative approach can make a positive difference in the experience of death and dying. It offers the opportunity for a gentle death versus one in which suffering is so unbearable, for both the dying individual and those who are witnessing it, that assisted suicide is considered as an alternative (Palliative care, n.d.). The materials complied for this project will reflect the same kinds of goals, assumptions, and resources that are part of hospice care but they will be available to anyone who may benefit from them, inside or outside of an institutional setting. Palliative care is intended for the benefit of, not only the dying, but all members of the family unit. Each person experiences death (their own or that of a loved one) differently, and there is no one-size-fits-all approach to counselling or therapy. Hirai, Morita, and Kashiwagi (2003) argued that each person affected by the dying process (the dying individual himself or herself, family members, and friends) suffers in a unique way and should be individually assessed, then offered specific treatment methods geared to their needs and preferences. For
Interventions 6 example, facing one s mortality, through the death of loved ones or one s own terminal illness, may evoke feelings of terror known as existential anxiety. Hirai and colleagues described three categories of existential suffering: (a) uncertainty-related anxiety (i.e., fear that you cannot control your life in the future); (b) guilt-related suffering (i.e., regret associated with a past relationship); and (c) dependency-related anxiety (i.e., feelings of worthlessness due to increased dependency and loss of functioning). Hirai et al. also identified effective interventions for each type of existential anxiety. For example, many individuals suffering from uncertainty-related anxiety benefit from relaxation therapy and guided imagery. Interventions for those suffering from guilt-related anxiety include cognitive restructuring and life review interviews, and meaning-centered group psychotherapy has been shown to be effective for those suffering from dependency-related meaninglessness. Therapeutic interventions and counselling should be combined with other factors that may contribute to experiencing a good death. Many researchers have concluded that incorporating spiritual factors into the process of death and dying may protect against maladaptive syndromes in those facing death (e.g., Bourgeous & Johnson, 2004; Brietbart, Gibson, Poppito, & Berg, 2004; McClain, Rosenfeld, & Breitbart, 2003). For example, McClain and colleagues described a syndrome they called end-of-life despair, a type of depression characterized by feelings of isolation, guilt, sadness and uncontrolled pain. Patients with this syndrome experience hopelessness, the desire for a quick death, and thoughts of suicide to hasten death. Spiritual counselling may help patients better cope with these feelings. Project Procedures The present project will be conducted using Mertens (1998) nine steps of a literature review. Categories of the literature reviewed may include: (a) factors that work against the
Interventions 7 possibility of experiencing death with dignity (e.g., physical and psychosocial symptoms at the end of life, end-of-life despair, demoralization syndrome); (b) factors that contribute to a good death experience (e.g., spiritual factors, family systems theory); (c) interventions that support the goals of quality of life (e.g., psychosocial interventions, meaning-centred group psychotherapy); and (d) interventions that support those who are left behind (e.g., narrative therapy s remembering practices ). The populations targeted in this review are adult, mentally competent, terminally ill cancer patients and their families and loved ones. Medical professionals and caregivers who work with them may also benefit. The literature selected for this review will only include primary and secondary sources published after 1981. This review will only report on current Western views of death and dying. Literature reviews on cultural diversity in views of death and dying and how to improve that experience would be a good topic for future research. The literature will focus mainly on Canadian content such as available resources for the dying and the loved ones of the dying. It is hoped that this review will provide direction to information for those who are in the throes of preparing for death. Potential Implications of the Project This project will focus on identifying from the existing literature specific interventions, strategies, and resources that may be used to ease suffering, lessen the fear associated with existential anxiety, and help the terminally ill and their loved ones face the prospect of death with dignity and serenity. The target audience for this project is the population of dying individuals and their loved ones. It is also hoped that the material compiled for this project will be helpful to members of various professional groups involved in providing healthcare and social support. Death need not be a feared and uncontrolled event. With understanding, guidance, and
Interventions 8 careful preparation, the event can be a unique and personalized experience for all who are involved in the last step of life s journey.
Interventions 9 References Bourgeois, S., & Johnson, A. (2004). Preparing for dying: Meaningful practices in palliative care [Electronic version]. Omega: Journal of Death Dying, 49, 99-107. Breitbart, W., Gibson, C., Poppito, S., & Berg, A. (2004). Psychotherapeutic interventions at the end of life: A focus on meaning and spirituality [Electronic version]. Canadian Journal of Psychiatry, 49, 366-372. Callan, L. (2001). Mom s fine, just fine. Maclean s, 114, 12. Retrieved August 11, 2006 from http://proquest.umi.com/pqdweb?did=74188523&sid=3 &Fmt=3&clientld=1751&RQT=309&Vname=PQD Emanuel, E. J., & Emanuel, L. L. (1998). The promise of a good death [Electronic version]. Lancet, 351, 1-9. Hirai, K., Morita, T., & Kashiwagi, T. (2003). Professionally perceived effectiveness of psychosocial interventions for existential suffering of terminally ill cancer patients [Electronic version]. Palliative Medicine, 17, 688-694. Kastenbaum, R. J. (2004). Death, society, and human experience. Boston:Pearson. Kubler-Ross, E. (1981). Living with death and dying. New York: Macmillan. McClain, C., Rosenfeld, B., & Breitbart, W. (2003). Effect of spiritual well-being on endof-life despair in terminally-ill cancer patients [Electronic version]. Lancet, 361, 1603-1608. Mertens, D. M. (1998). Research methods in education and psychology. Thousand Oaks, CA: Sage. Palliative care. (n.d.). Retrieved November 30, 2006 from http://www.growthhouse.org/palliat.html
Interventions 10 The Canadian Hospice Palliative Care Association (CHPCA). (2003). Retrieved November 30, 2006, from http://www.chpca.net/home.htm The Quality End-of-Life Care Coalition of Canada (QELCCC). (2003). Retrieved November 30, 2006, from http://www.chpca.net/qelccc.htm