Books
Battin, M. P., Rhodes, R., & Silvers, A. (Eds.). (1998). Physician assisted suicide: Expanding the debate. New York: Routledge.
This text is a cross-disciplinary collection of essays from physicians , social scientists, theologians, lawyers and economists. By offering views from a wide range of disciplines, this book draws attention to a variety of questions to be addressed in the debate about physician-assisted suicide.
Chochinov, H. M., & Breitbart, W. (2000). Handbook of psychiatry in palliative medicine. New York: Oxford University Press.
Recognizing the variety of emotional challenges faced by those approaching death is critical in the care of dying patients. This text offers a thorough overview of psychiatric complications of terminal illness including such topics as the role of psychiatry in terminal care, diagnosis and management of depression, suicide in the terminally ill, pain management, suffering and psychotherapeutic interventions. The text also discusses new directions for psychosocial palliative care research.
Emanuel, L. L. (Ed.). (1998). Regulating how we die: The ethical, medical, and legal issues surrounding physician-assisted suicide. Cambridge, MA: Harvard University Press.
Dr. Emanuel has assembled leading experts to provide clear arguments for and against physician-assisted suicide and euthanasia. The text also includes historical, legal and empirical perspectives on these complicated issues.
Irish, D. P., Lundquist, K. F., & Nelsen, V. J. (1993). Ethnic variations in dying, death and grief: Diversity in universality. Washington, DC: Taylor & Francis.
This text is directed to those professionals who work in occupations related to death and dying, and includes illustrative examples of selected ethnic patterns and materials for personal reflection about death and dying and multicultural issues. Each of the ethnic chapters was prepared almost exclusively by representatives who share the cultural traditions they describe.
Jamison, S. (1997). Assisted suicide: A decision-making guide for health care professionals. San Francisco, CA: Jossey Bass, Inc.
Assisted Suicide is an aid for discussing this complex matter terminal patients and their loved ones. This text provides concrete guidelines on counseling and assisting terminally ill patients who are considering suicide. The author guides readers through a step-by-step decision-making process and provides a range of guidelines, tools and options.
Lynn, J. L., Schuster, J. L., & Kabcenell, A. K. (2000). Improving care for the end-of-life. New York: Oxford University Press.
This text provides guidance on how to improve care at the end of life. The chapters rely heavily on the experiences of the four dozen teams who participated in a year-long collaboration to examine how to improve care at the end of life. The teams made changes in four critical areas, controlling pain and other symptoms, improving advanced care planning, helping and comforting patients and families; and developing continuity of care. The book provides information on major causes of death and describes opportunities for the quality of life for those affected them.
McKhann, C. M. (1999). A time to die: The place for physician assistance. New Haven, CT: . Yale University Press.
Drawing upon in-depth interviews with people who were dying from a variety of illnesses, the author examines the dying process encountered in painful and debilitating diseases, discusses the needs of patients and their families and discusses many aspects of physician-assisted dying. The author describes the forms of physician-assisted dying currently taking place and discusses moral, religious, legal and public policy issues.
Neimeyer, R. A. (2001). Meaning, reconstruction and the experience of loss. Washington, DC: American Psychological Association.
Presents a comprehensive portrayal of grief and loss as a process of meaning-making. Drawing upon both quantitative and qualitative studies, contributors summarize and evaluate research on construction of life narratives in the wake of loss, post-traumatic growth, family processes of meaning negotiation, and the reformulation of personal identity in the aftermath of bereavement. Constructivist shifts in psychodynamic, cognitive-behavioral , and systemic theories are considered, yielding insights into particular contexts of loss (as in the death of a child, or contending with partner loss to AIDS) and therapeutic approaches to grief counseling and therapy.
Neimeyer, R. A. (2001). Lessons of loss: A guide to coping. New York: Brunner Routledge.
Building on the idea of grieving as a process of meaning reconstruction, this book offers concepts and methods for facilitating integration of loss through a variety of narrative and self-reflective exercises.
Nuland, S. B. (1995). How we die: Reflections on life's final chapter. New York: Vintage Books.
The author examines the seven most common roads to death: old age, cancer, AIDS, Alzheimer's, accidents, heart disease, and stroke. In an attempt to demythologize death, he presents it in its biological and clinical reality, as seen by those who are witness to it and as felt by those who experience it.
Rando. T. A. (Ed.). (2000). Clinical dimensions of anticipatory mourning: Theory and practice in working with the dying, their loved ones and their caregivers. Champaign, IL: Research Press.
The events preceding a persons death have a profound effect on that person's dying experience and the pre and post death bereavement of survivors. This text includes chapters by persons at the forefront in the area of anticipatory mourning. Topics range from clinical knowledge and theory to the specifics of anticipatory mourning from the perspectives of the different parties involved.
Steinberg, M. D., & Youngner, S. J. (Eds.). (1998). End-of-life decisions: A psychosocial perspective. Washington, DC: American Psychiatric Press.
Striking a balance between the need for patient autonomy and the need to make well-formulated treatment decisions, the authors explore the roles psychiatrist can play as adviser to terminally ill patients and their loved ones. The authors describe the range of emotional and psychiatric issues faced by terminally ill patients, their families, and physicians which affect choices patients make to limit treatment or to ask for assistance in dying.
Webb, M. (1997). The good death: The new American search to reshape the end of life. New York: . Bantam Books.
Based on more than six years of firsthand research and reporting, The Good Death examines the medical, legal and ethical controversies that surround end-of-life care, and explores how these controversies affect individuals and families. The author introduces the reader to leading doctors, medical ethicists, pain specialists and legal experts working to improve care at the end of life.
Weenolsen, P. (1996). The art of dying: How to leave this world with dignity and grace, at peace with yourself and your loved ones. New York: St. Martin's Griffin.
Written for the dying person, this book helps one to resolve the spiritual, emotional, and physical concerns unique to this time. The book includes very practical information about arranging finances, advanced directives and ideas about what to expect in the last few moments before death.
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Journal Articles
Abels, N, & Barlev, A. (1999). End of life decisions and assisted suicide. Professional Psychology:
Research and Practice, 30, 229-234.
End-of-life decisions and assisted suicide are discussed following passage of the Oregon Death with
Dignity Act. Case examples are presented including a vignette highlighting ethical issues. Arguments for
and against suicide prevention are presented and the pros and cons of rational suicide are detailed.
Physician-assisted suicide in the Netherlands is discussed. The authors also discuss the role of mental
health professionals in end-of-life decisions.
Baker, R. R., Lichtenberg, P. A., & Moye, J. (1998). A practice guideline for assessment of competency and capacity of the older adult. Professional Psychology Research and Practice, 29, 149-154.
This article examines the need for a conceptual and practical model for conducting psychological assessments in the older adult as part of a legal determination of competency. The authors discuss the need for practice guidelines in responding to this need, and a practice guideline for assisting practitioners in responding to requests for such assessments is discussed.
Benbassat, J., Pilpel, D, Tidhar, M (1998). Patients' preferences for participation in clinical decision making: A review of published studies. Behavior Medicine 24, 81-87,
Models of doctor-patient relations vary between paternalistic and informative. Surveys indicate that patient want to be informed about their diseases and many want to participate in making decisions.
Blackhall, L.J., Murphy, S.T., Frank, G, Michel V, Azen S. (1995). Ethnicity and attitudes toward
patient autonomy, JAMA 274, 820-5.
These researchers examine how different cultures consider autonomy in making end of life decisions.
Blendon, R.J., Szalay, U.S., & Knox, R.A. (1992). Should physicians aid their patients in dying? The public perspective. JAMA, 267, 2658-2662.
The authors examine interest in and support for physician-assisted suicide, euthanasia, and right-to-die legislation. The authors attempt to outline implications of the debate. The article provides attitudinal data from 1950 through 1991.
Block, S. D.(2000). Assessing and managing depression in the terminally ill patient. Annals of Internal Medicine,132, 209-218.
Psychological distress often causes suffering in terminally ill patients and their families, and poses challenges in diagnosis and treatment. Increased attention to diagnosis ant treatment of depression can improve the coping mechanisms of patients and families. This article reviews the clinical characteristics of normal grief and clinical depression and explains strategies for differential diagnosis.
Block, S.D., & Billings, J. (1995). Patient requests for euthanasia and assisted suicide in terminal illness: The role of the psychiatrist. Psychosomatics, 36, 445-457.
The authors review psychiatric aspects of requests by terminally ill patients for assisted suicide and euthanasia, and describe an approach to the common problems of physical, psychological, social and spiritual suffering encountered in dying patients. The article outlines the functions of the psychiatrist in addressing these problems.
Bradley, J. Peiris, V, Wetle, T. (1998). Discussions about end of life care in nursing homes. J. American Geriatric Society 46, 1235-1241.
Retrospective cohort study of nursing home residents before and after PSDA.
Breitbart, W. (1990). Cancer pain and suicide. Advances in Pain Research and Therapy,
16, 399-412.
This article explores the data regarding cancer and suicide, the role of cancer pain and other factors that contribute to suicide risk. Also explores the ethical dilemmas surrounding suicide in the terminally ill patient that can impede optimal care.
Bursztajn, H. J., Harding, H. P., Gutheil, T., & Brodsky, A. (1991). Beyond cognition: The role of
disordered affective states in impairing competence to consent to treatment. Bulletin of the American Academy of Psychiatry and Law, 19, 383- 388.
In some cases patients with major affective disorders can retain the cognitive capacity to understand the risks and benefits of a medication yet fail to appreciate it's benefits. A case study illustrates how cognitive and affective impairments may coexist and require separate strategies for remediation.
Chin, A. E., Hedberg, K., Higginson, G. & Fleming, D. (1999). Legalized physician-assisted suicide in
Oregon - The first years experience. The New England Journal of Medicine, 340, 577-583.
This article provides an analysis of the data collected on all terminally ill patients who received prescriptions for lethal medications under the Oregon Death with Dignity Act and who died in 1998. Information on 23 persons who received prescriptions for lethal medications was reported to the Oregon Health Division. Fifteen patients died after taking the lethal medication. The decision to request and use a prescription for lethal medication was associated with concerns about loss of autonomy or loss of control of bodily functions but not with fear of intractable pain or concern about financial loss.
Chochinov, H., Wilson, K., Enns, M., Mowchun, N., Lander, S., Levitt, M., & Clinch, J. (1995). Desire for death in the terminally ill. American Journal of Psychiatry, 152, 1185-1191.
Two hundred terminally ill patients were given semistructured interviews that assessed their desire for death and evaluated them for major and minor depressive episodes according to the Research Diagnostic Criteria. Each patient also completed a short form of the Beck Depression Inventory and provided ratings of pain and social support. The authors concluded that the desire for death in terminally ill patients was closely related with clinical depression and could decrease over time. The authors recommended that informed debate about euthanasia should recognize the importance of psychiatric considerations as well as the inherent impermanence of many patient's expressed desire to die.
Cicirelli, V. (1997). Relationship of psychosocial and background variables to older adults' end-of-life decisions. Psychology and Aging, 12, 72-83.
Three hundred thirty-eight Black and White older adults aged 60 -100 responded to 17 decision situations depicting terminal and non-terminal conditions with a very low quality of life, rating the acceptability of 7 end-of-life options. Despite low quality of life, maintaining life was the most acceptable option, but a significant minority of participants wished to end life and a moderate number wished to defer the decision to others.
Dowdy, M, Robertson, C., Bander, J.A., (1998). A study of proactive ethics consultation for critically and terminally ill patients with extended lengths of stay. Critical Care Medicine 26(2), 252-259
Compared three groups to examine the impact of ethics consultation involving formal ethics consultation using a patient care conference model.
Eliasson, A, Howard, RS, Torrington, K., et al (1997). Do not resuscitate decisions in the medical ICU: Comparing Physician and nurses opinions. Chest 111, 1106-1111.
Of 368 consecutive admissions to ICU, 84 (23%) of patients were determined to be DNR during their ICU stay. In 6 cases, the nurse did not agree that the DNR as appropriate. Among those without a DNR order, physicians and nurses believed DNR was appropriate in 14 (5%) cases but the order was not written.
Ersek, M. Kagawa-singer, M, Barnes, D, Blackhall, L & Koenig, B (1998). Multicultural considerations in the use of advance directives. Oncology Nursing Forum 23, 1683-1690.
Reviews the literature on advance directives and concludes that the sociocultural values of many culturally divers groups conflict with the values on which use of advance directives are based.
Farrenkopf, T., & Bryan, J. (1999). Psychological consultation under Oregon's 1994 Death With Dignity Act: Ethics and procedures. Professional Psychology: Research and Practice, 30, 245-249.
This article describes roles psychologists may play and proposes procedures for assessing end-of-life mental conditions and competence. The psychologist's role may include protecting the patient's rights to autonomy, ensuring competent judgement, preventing unnecessary suffering and preventing inappropriate diagnosis of mental disorders.
Farberman, R. K. (1997). Terminal illness and hastened death requests: The important role of the mental health professional. Professional Psychology: Research and Practice, 28, 544-547.
This article is based on an American Psychological Association briefing paper prepared for the media regarding the June 1997 United States Supreme Court decisions on physician-assisted suicide. The article highlights the necessity of a mental health assessment by a qualified mental health professional for any ill person requesting a hastened death. In helping terminally ill patients make end-of-life decisions the mental health professional should protect the client's rights, support the family, assist in evaluating the patients capacity to make a rational decision, and try to ensure that mental illness diagnoses are made only when they are appropriate.
Field, D., Copp, G. (1999). Communication and awareness about dying in the 1990s. Palliative Medicine, 13, 459-468.
In western, industrial societies there is increasing evidence that doctors have shifted from a policy of withholding, to a policy of revealing to a patient the patient's terminal prognosis. Despite the perceived trend toward open disclosure of the patient's terminal illness, several studies have suggested that in their daily interactions with dying patients, health care workers employ conditional rather than full open disclosure. The authors discuss the existing literature on modes of communication and patient awareness about terminal illness.
Fishbain, D. A., Goldberg, M. G., Rosomoff, R. S., & Rosomoff, H. (1991). Completed suicide in chronic pain. Clinical Journal of Pain, 7, 29-36.
Follow-up data from a chronic pain center revealed three chronic pain patients who had completed suicide. Comparison of suicide rates for the pain center's population and the general population of the US indicated that chronic pain patient suicide rates were significantly greater that than of the general population.
Fowler, F. J., Coppola, K. M., & Teno, J. M. (1999). Methodological challenges for measuring quality care at the end of life. Journal of Pain and Symptom Management, 17, 114-119.
Measurement is a fundamental step in improving the quality of care for dying patients and their families. Yet, there are important methodological challenges to be addressed. In conducting surveys about the patient and the family experience, research is needed regarding the relative merits and cost-effectiveness of prospective or retrospective surveys after the patient's death. Proxies are an important source of information given that the majority of patients can not be interviewed in the last week of life. Research is needed to understand who is best able to serve as a proxy and the validity of their reports. The cost-effectiveness and comparability of alternative data collection strategies need to be examined. These and other important issues need to be addressed in designing reliable, valid, and clinically manageable measures.
Ganzini, L., Nelson, H. D., Schmidt, T. A., Kraemer, D. F., Delorit, B. A., & Lee, M. A. (2000). Physicians' experiences with the Oregon Death with Dignity Act. New England Journal of Medicine, 342, 557-563.
Between February and August 1999 a questionnaire was mailed to physicians who were eligible to prescribe lethal medications under the Oregon Death with Dignity Act. In Oregon, physicians grant about 1 in 6 requests for prescriptions for lethal medication and about 1 in 10 requests actually results in a suicide. Palliative interventions lead some patients to change their mind about assisted suicide.
Goldblum, P., & Martin, D. (1999). Principles for the discussion of life and death options with terminally ill clients with HIV. Professional Psychology: Research and Practice, 30, 187-197.
The authors discuss principles for clinical discussions with terminally ill clients with HIV and outline a decision process to determine whether a client's wish to die is well reasoned, and that alternatives have been considered. The article provides a series of principles to guide therapist-client discussions.
Grassi, L. (1997). Psychiatric implications of euthanasia and assisted suicide in terminally ill patients. New Trends in Experimental and Clinical Psychiatry, 13, 127-132.
The author posits that the response of the health care professional to a request for hastened death has important implications from a psychosocial and consultation-liaison point of view. Analysis of euthanasia and assisted suicide should include a mental status exam to evaluate underlying psychiatric disorders, family structure characteristics, family developmental stage, and family reactions to the patient's disease. Cultural and social aspects concerning health practices and attitudes towards disease, and marginalization of patients should also be taken into account
Grisso, T., & Appelbaum, P. (1995). Comparison of standards for assessing patients decisions to make treatment decisions. American Journal of Psychiatry, 152, 1033-1037.
The authors investigated the proportion of psychiatric and medical patients who were impaired in their decision-making abilities in relation to each of several major legal standards for determining competence to consent to treatment. Concluded that the choice of standards for determining competence affected the identity and proportion of patients identified as impaired.
Grisso, T., & Appelbaum, P. (1998). Assessing competence to consent to treatment: A guide for physicians and other health professionals. New York: Oxford University Press.
The protection of a patient's right to decide, as well as the protection of incompetent patients from potential harmful effects of their own decisions rests largely on clinician's abilities to judge patients capacity to make medical decisions. The authors analyze the elements of decision making and show how assessments of competence to consent to treatment can be conducted within various medical and psychiatric treatment settings. The book explains how assessments can be conducted and offers detailed interview guidelines to assist health professionals in this task. The book also provides illustrative case studies.
Haghbin, Z., Streltzer, J., & Danko, G. P. (1998). Assisted suicide and AIDS patients: A survey of physicians attitudes. Psychosomatics, 39, 18-23.
Physicians' attitudes about assisted suicide were assessed by using a vignette of an acquired immune deficiency syndrome patient who requests a lethal injection. Of the 389 respondents, 34% had received at least 1 request for assisted suicide; 9% had requests from AIDS patients; and 41% had at least indirectly assisted a terminal patient to die in actual practice. Thirty-three percent of the respondents agreed to the authors' hypothetical patient's request for a lethal injection. The study confirms previous findings that many physicians underestimate the effect of depressive illness on rational decision making concerning assisted suicide requests.
Hertogh, C., & Ribbe, M. (1996). Ethical aspects of decision-making in demented patients: A report from the Netherlands. Alzheimer Disease and Associated Disorders, 10, 11-19.
The authors discusse the ethical problems encountered in caring for demented patients in the last phase of their lives. Special attention is given to the problems of prognosis and the possible contributions of living wills to decision-making on behalf of incompetent demented patients.
Lee, M., & Ganzini, L. (1994). The effect of recovery from depression on preferences for life-sustaining therapy in older patients. Journal of Gerontology: Medical Sciences, 49, M15-M21.
The authors compared older veterans' preferences about life sustaining therapy before and after treatment for depression. The authors concluded that treatment of mild to moderate depression does not necessarily result in an increased desire for life sustaining medical therapy. Depressed patients exhibit less consistency in the preferences over time therefore The authors recommend repeated discussions with depressed patients regarding these decisions.
Lewis, M., Pearson, V., Corcoran Perry, et al (1997). Decision making by elderly patients with cancer and their caregivers. Cancer Nursing 20, 389-397.
Examination of the scope of decisions encountered by older cancer patients and their families/caregivers and the types of decision making assistance involved in practice settings. Decisions involved symptoms, chemotherapy, ancillary choices, plans for end of life care, discharge planning, family survivor issues, involvement of adult children.
Meier, D. E., Emmons, C., Wallenstein, S., Quill, T., Morrison, R. S., & Cassel, C. K. (1998). A national survey of physician-assisted suicide and euthanasia in the United States. New England Journal of Medicine, 338, 1193-1201.
The authors surveyed 3102 physicians in the 10 specialty areas most likely to receive requests from patients for assistance with suicide or euthanasia. They received 1902 completed questionnaires. Eleven percent of the respondents said that under the current legal system there were circumstances under which they would be willing to hasten a patient's death by prescribing medication , 7 percent said that they would be provide a lethal injection, 18.3 percent of the physicians said that they had received a request for assistance with suicide and 11.1 percent had received a request for a lethal injection. Of these physicians 16 percent reported that they had written at least one prescription to be used to hasten death and 4.7 percent said that they had administered at least one lethal injection.
Moraso, G., Capelli, M., Viterbori, P., DiLeo, S., Alberisio, A., Constantini, M., Fiore, M., Saccani, D., Zeitler, G., Verzolatto, N., Tirelli, W., Lazarri, L., Partinico, M., Borzoni, G., Savian, C., Obertino, E., Zotti, P., Ivaldi, G. P., Henriquet, F. (1999). Psychological and symptom distress in terminal cancer patients with met and unmet needs. Journal of Pain and Symptom Management, 17, 402-409.
This study identified the needs of terminal cancer patients, investigated the factors associated with unmet needs and assessed psychological and symptom distress associated with unmet needs. Ninety-four patients were randomly selected from 324 patients admitted for palliative care in 13 Italian centers. Five areas of patient's needs were identified using a semi-structured interview. A content analysis of the answers identified 11 needs and identified patients with unmet needs. The most frequent unmet needs were symptom control (62.8%), occupational functioning (62.1%) and emotional support (51.7%). Low functional state was significantly correlated with unmet needs of personal care, information, communication, occupational functioning, and emotional closeness.
Pearlman, R., Cain, K., Patrick, D., Appelbaum-Maizel, M., Starks, H., Jecker, N., & Uhlmann, R. (1993). Insights pertaining to patients' assessments of states worse than death. Journal of Clinical Ethics, 4, 33-41.
The authors examined issues pertaining to health and social circumstances mentioned by patients when discussing states worse than death. They also examined whether or not health and social factors related to states worse than death differ based on patient prognosis, sex or age; and whether patients have concerns which clinicians do not recognize or fully appreciate that are appropriate topics for discussion in health care planning.
Quill, T., Cassel, K. & Meier, D. (1992). Care of the hopelessly ill: Proposed clinical criteria for physician-assisted suicide. New England Journal of Medicine, 327, 1380-1383.
The authors posit when an incurably ill patient asks for help in achieving death, physicians have an obligation to explore the request fully, and under specified circumstances to carefully consider making an exception to the prohibition against assisting with suicide. Proposes clinical criteria that would allow physicians to respond to requests for assisted suicide from their competent, incurable ill patients.
Rosenfeld, B., Breitbart, W., Sein, K., Funesti-Esch, J, Kaim, M. Krivo, S. (1999). Measuring the desire for death among patient with HIV/AIDS: The schedule of attitudes toward hastened death. American Journal of Psychiatry 156, 94-100.
Researchers examined 195 patients using the 20 item schedule of Attitudes toward hastened death inventory and other instruments. This Attitude scale is reliable, valid measure of desire for death among patients with HIV/AIDS.
Saunders, J.M. & Valente, S.M. (1993). Nicole: Suicide & Terminal Illness. Suicide and Life
Threatening Behavior, 23(1), 76-82.
A case study of a terminally ill woman who has end stage abdominal cancer and wants assistance to
commit suicide. Examination of the criteria for rational suicide and the role of health care professionals.
Ethical and clinical issues are examined.
Saunders, J.M. (2000). AIDS, Nursing and Physician Assisted Suicide: Part I and II. Journal of
Nurses in AIDS Care 11, 45-53.
Nurses often hold conflicting views about appropriate clinical roles in relation to assisted suicide. Paper
provides knowledge needed for clinical practice, education, policy development and research regarding this
topic.
Saunders, J.M. (1981). A process of bereavement resolution: uncoupled identity. Western Journal of Nursing Research 3, 319-336.
Qualitative study examining bereavement across modes of death. Once concept of bereavement resolution examined in this paper is uncoupled identity.
Schneiderman, L., Kaplan, R., Pearlman, R., & Teetzel, H. (1993). Do physician's own preferences for life-sustaining treatment influence their perceptions of patients' preferences. The Journal of Clinical Ethics, 4, 28-32.
The authors compared patient preferences for specific procedures with physicians' predictions of their patient's preferences, with physicians' preferences for themselves. The authors concluded that physicians often underestimate their patients' perceived quality of life. Furthermore, physicians' predictions of patient preferences correspond closely to their own personal preferences.
Singer, P. A., Martin, D. K., & Kelner, M. (1999). Quality end-of-life care: Patients' perspectives. JAMA, 281, 163-168.
A total of 126 patients from three patient groups (dialysis patients, people with HIV infection, and residents of a long-term care facility, were interviewed in order to identify and describe elements of quality end-of-life care from the patients perspective. Participants identified five domains of quality end of life care: receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones.
Stewart, A. L., Teno, J., Patrick, D. L., & Lynne, J. (1999). The concept of quality of life of dying persons in the context of health care. Journal of Pain and Symptom Management, 17, 93-108.
The authors present a conceptual framework specifying and integrating quality of life and quality of life indicators. Concepts include patient /family context, structure of care, process of care, satisfaction with care, and quality and length of life. Patient and family perspectives are considered. The goal is to facilitate development of a comprehensive set of measures to describe the quality of life of dying persons and evaluate the care they receive, to be used to improve end-of-life care.
Straus, G. & Nelson, B. J. (1996). Palliative care enrichment in geropsychology fellowships. Educational Gerontology, 22, 775-780.
A survey of 10 Veterans Affairs geropsychology postdoctoral fellowships offered in the US was conducted to assess the degree to which the programs addressed issues of dying and death. Only 30% of the programs offered palliative care or hospice training. The authors conclude that these findings indicate that few VA hospitals offer training in palliative care or hospice care for geropsychology postdoctoral fellows.
Sullivan, A. D., Hedberg, K., & Fleming, D. (2000). Legalized physician-assisted suicide in Oregon--The second year. New England Journal of Medicine, 342, 598-604.
In the second year of legalized physician-assisted suicide in Oregon, the number of patients who died after ingesting lethal medications has increased but it has remained small relative to the total number of persons in Oregon who died. Patients who request assistance with suicide appear to be motivated by several factors including loss of autonomy, and a determination to control the way in which they die.
Sullivan, M., Rapp, S., Fitzgibbon, D., & Chapman, C. R. (1997). Pain and the choice to hasten death in patients with painful metastatic cancer. Journal of Palliative Care, 13, 18-28.
Researchers interviewed 48 patients with painful metastatic cancer to ascertain their interest in various active and passive modes of hastening death. Ninety percent of these patients supported the right of terminally ill patients to passive modes of hastening death and 80% supported the right to active modes such as assisted suicide and euthanasia. Current pain and depression levels were not associated with interest in hastening death. However, current somatic symptoms were associated with interest in hastening death.
Sullivan, M., & Youngner, S. (1994). Depression, competence and the right to refuse life saving medical treatment. American Journal of Psychiatry, 151, 971-978.
The authors explore the possibilities that psychiatrists inappropriately extend the views of suicide by the medically well to refusal of life saving treatment by the seriously medically ill. They review the legal and bioethical literature on competence to refuse life saving treatment and the possible impact of depression on this refusal. They conclude that depression can be diagnosed and treated in patients with serious medical illness, but after optimizing medical and psychiatric treatment and determining that the patient is competent to make medical decisions it may be appropriate to honor the patient's desire to die.
Valente, S.M. (2000). Oncology Nurses' difficulties with suicidal patients. Medicine and Law 19, 4,
>From a large and random survey of 1200 nurses' knowledge, we analyzed 434 returned completed
questionnaires with narratives about their difficulties responding to suicidal patients. Six categories
emerged: religious/other values, uncomfortable feelings, inadequate knowledge, personal experiences, and
weight of professional responsibility made it difficult for most nurses to care for suicidal patients.
Caregiving is also difficult because the patient's right to choose suicide may conflict with the nurse's
professional obligation.
Valente, S. M., & Trainor, D. (1998). Rational suicide among terminally ill patients. Association Operating Room Nurses 68(2), 252-265.
An evaluation of the clinical and ethical issues regarding terminally ill patients who consider suicide. The clinician's role in assessment, intervention, referral, and emotional support is described. The criteria for rational suicide are examined and applied to the case.
Valente, S. M. & Saunders, J.M. (1996). Case commentaries: assisted suicide and euthanasia.
Journal of Pharmaceutical Care and Symptom Control, 3-4, 1-2.
Multidisciplinary professionals respond to diverse case examples and examine the issue of guidelines
for practice when a terminally ill patient requests assistance in dying.
Valente, S.M. & Saunders, J.M. (1994). Management of suicidal patients with HIV disease. Journal of
the Association of Nurses in AIDS Care, 6(6), 19-29
Discussion of the clinical and ethical issues involved when a suicidal patient has a life threatening disease. The paper focuses on the clinical evaluation, management, and treatment of suicidal patients. When the patient is competent to make decisions, discussion of the role of the professional in supporting autonomy and providing resources is discussed.
Valente, S.M. (1994). Psychotherapists' reactions to a patient's suicide. American Journal of Orthopsychiatry, 64(4), 614-621.
Although it is a common occupational hazard in health care, a patient's death by suicide is often traumatic
for the clinical health care team. However, clinicians feel unprepared for this traumatic experience that
engenders feelings of failure, depression, grief, and self recrimination and often leads to growth. A review of
the literature about clinician's bereavement and grief responses to the suicidal death of a patient. A summary of
the research is presented and guidelines for practice are identified.
Valente, S.M. (1994). Analysis of suicide messages of psychiatric patients. Clinical Nursing Research,
3(4), 316.
A comparison of suicide messages of psychiatric patients who attempted and committed suicide who were
receiving care at a Veterans Administration HealthCare facility. Clues to suicide are found in messages and
communications from the patients.
Van der Arend, Arie JG (1998). Euthanasia and assisted suicide in the Netherlands: Clarifying the practice. International Nursing Review 45(5), 145-152.
A difficult case of a nurse who participated with physicians' approval and support in euthanasia and was
censured in the courts.
Vander Veer, J. B., Jr. (1999). Euthanasia in the Netherlands. Journal of the American College of Surgeons, 188, 532-537.
The author provides an overview of euthanasia in the Netherlands. The article includes a discussion of the history of the guidelines set forth by the Royal Dutch Medical Association, and Dutch case law in the evolution of physician-assisted suicide and euthanasia.
Veatch, R. M. (1995). The Definition of death: Problems for public policy. In H. Wass & R. A. Neimeyer (Eds.), Dying: Facing the facts (3rd ed.) (pp. 405-432). Philadelphia, PA: Taylor & Francis.
This chapter outlines both the continuities and discontinuities in the criteria used to define end-of-life as we move from gross structural to functional criteria to increasingly sophisticated neurological criteria for identifying the transition to death. The author argues that negotiating such definitions is critical to developing an informed public policy that recognizes the legitimate limits of medical intervention.
Weeks, J. C., Cook, E. F., O'Day, S. J., Peterson, L. M., Wenger, N., Reding, D., Harrell, F., Kussin, P., Dawson, N. V., Connors, A. F., Lynn, J. & Phillips, R. S. (1998). Relationship between cancer patients' predictions of prognosis and their treatment preferences. JAMA, 279, 1709-1714.
The authors examined the relationship between cancer patients' estimates of their prognosis and their life-support and treatment preferences. They concluded patients with metastatic colon cancer and lung cancer overestimate their survival probabilities and these estimates may influence their preferences about medical therapies.
Wenger, N. S., Phillips, R. S., Teno, J. M., Oye, R. K., Dawson, N. V., Liu, H., Califf, R., Layde, P., Hakim, & R., Lynn, J. (2000). Physician understanding of patient resuscitation preferences: Insights and clinical implications. Journal of the American Geriatric Society, 48, (Suppl.) 44-51.
As part of a large prospective study, the authors interviewed seriously ill hospitalized patients and their physicians concerning resuscitation preferences in order to evaluate how well physicians understand their patients' preferences for CPR, to identify patient characteristics associated with physician understanding of patient CPR preferences, and to investigate whether physician understanding of CPR preferences was associated with do not resuscitate (DNR) orders and resuscitation attempts. Physicians understood 86% of patients' preferences for CPR but only 46% of patient preferences to forgo CPR. Patients whose physicians understood their preference to forgo CPR more often received DNR orders, received them earlier and were less likely to undergo resuscitation. Patients who were older, white and had worse functional status and prognosis were more likely to have their preference to forgo CPR understood by their physician. Physicians were more likely to understand a patient's preference to forgo CPR if they had known the patient for a longer period of time, predicted a worse 2-6 month survival probability and had a lower estimate of the patient's perceived quality of life. Seventy-one percent of the patients whose physicians knew their preference to avoid CPR reported that they had told their physician this preference, significantly more than the 39% of patients who had talked to physicians who misunderstood their preference.
Zaubler, T., & Sullivan, M. (1996). Psychiatry and physician-assisted suicide. Consultation-Liaison Psychiatry, 19, 413-427.
This article examines the validity of the extension of the psychiatric view of suicide in the medically well to the terminally ill. Discusses the principal arguments, in the psychiatric literature against legalization of physician-assisted suicide, and makes recommendations concerning the role the psychiatrist could play in the physician-assisted suicide process.
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Organization Web Sites
American Academy of Hospice and Palliative Medicine.
http://www.aahpm.org
The international organization of physicians dedicated to the advancement of palliative medicine in the management of patients with terminal illness.
American Geriatrics Society.
http://www.americangeriatrics.org/positionpapers/quality.html and http://www.americangeriatrics.org/positionpapers/careofd.html
The American Geriatric Society position papers on quality of care and care of dying are available on line.
Association for Death Education & Counseling.
http://www.adec.org.
ADEC is dedicated to improving the quality of death education and death related counseling and caregiving.
Before I die Homepage: PBS Online.
http://www.wnet.org/archive/bid/
Before I die explores medical, ethical, and social issues surrounding end-of-life care in America today.
Bereavement and Hospice Support Netline.
http://www.ubalt.edu/www/bereavement
This web page lists various bereavement and support groups and services..
Children's Hospice International.
http://www.chionline.org
Children's Hospice International provides medical and technical assistance research and education for children with life threatening conditions and their families.
Compassion in Dying.
http://www.compassionindying.org
Compassion in Dying Federation provides legal advocacy and public education to improve pain and symptom management, increase patient empowerment and self-determination and to expand end-of-life choices to include aid-in-dying for terminally ill, mentally competent adults. Compassion in Dying Federation, 6312 SW Capitol Highway #415, Portland, OR 97201, Ph: 503-221-9556.
Education for Physicians on End of Life Care.
http://www.va.gov/oaa/flp/epec/default.asp
Web site created by the Department of Veterans Affairs features complete slide sets from the EPEC curriculum.
The Growth House.
http://www.growthhouse.org
A comprehensive international gateway to resources on the web related to life-threatening illnesses and end-of-life issues.
Health Care Financing Administration Publications. http://www.hcfa.gov/pubforms21_hospice/hs100.htm
The HCFA Hospice Manual is available on line.
Hospice Foundation of America.
http://www.hospicefoundation.org.
The Hospice Foundation of America sponsors an annual living with grief teleconference series, a monthly bereavement newsletter and other publications.
Last Acts.
http://www.lastacts.org
Last Acts is a call to action campaign designed to improve care at the end of life. Its goals are to bring end-of-life issues out into the open and to help individuals and organizations pursue better ways to care for the dying.
Missoula Demonstration Project.
http://www.missoulademonstration.org/
The Missoula demonstration project was established to research the experience of dying persons and to demonstrate that a community based approach of physical, psychological and spiritual care improves the quality of life among those who are dying and their families.
National Hospice and Palliative Care Organization
http://www.nhpco.org/directory/
Search the National Hospice & Palliative Care Organization database to find a list of local hospices. Provides local contact information.
National Public Radio Bibliography.
http://www.npr.org/programs/death/bibliogra.html
The staff of NPR's All Things Considered prepared a bibliography for a series on exploring death in America. The bibliography contains both books and journal articles dealing with terminal illness, death, dying, and care of the terminally ill.
Not Dead Yet.
http://www.acils.com/NotDeadYet/
Formed in 1996, Not Dead Yet is an association of people with disabilities who are opposed to assisted suicide and euthanasia.
Partnership for Caring Inc.
http://www.partnershipforcaring.org/
Partnership for caring is a national nonprofit organization devoted to raising consumer awareness and expectations for excellent care at the end of life.
Soros Foundation: Project on Death in America.
http://www.soros.org/death.html
The project on death in America seeks to transform the culture of dying by supporting initiatives in research, scholarship, the humanities, and the arts by fostering innovation in the provision of care public and professional education and public policy.
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