MORIR Y PROCESO DE MORIR

1) Hosp J 1999;14(2):49-63

Attitudes toward assisted suicide: a survey of hospice volunteers.

Zehnder PW, Royse D

College of Social Work, University of Kentucky, Lexington 40506-0027, USA.

Technological advances have lengthened our years and, often, the dying process as well. While studies have been conducted of physicians and dying patients concerning their views on assisted suicide, no prior studies have examined the attitudes of hospice volunteers. This survey of 277 hospice volunteers found that overall their attitudes were more supportive of assisted suicide than that of a convenience sample of the public. Thirty-seven percent of the volunteers endorsed the view that there are situations when assisting death may be morally acceptable; 4% had been asked to provide assistance to help a patient end his or her life.

2) Hosp J 1999;14(2):17-33

"What should I say?": qualitative findings on dilemmas in palliative care nursing.

McGrath P, Yates P, Clinton M, Hart G

Queensland University of Technology, Australia.

The nursing literature suggests that talking and listening to patients about issues associated with death and dying, is both important and difficult, and may be improved with training. This discussion presents the results of recent nursing research to confirm, and elaborate on, this theme. In this research participants touched on many central issues in communicating with patients that included articulating a sense of discomfort and inadequacy about the whole process, detailing the innumerable blocks to open communication [e.g., interference, denial, unrealistic optimism, resistance, collusion and anger] and sharing their sense of success and failure. The insights of nurses who participated in this research testify to the ongoing need to prioritize the development of nursing skills and support in this challenging but important area.

3) Palliat Med 1998 Nov;12(6):429-35

Why is the pain relief of dying patients often unsuccessful? The relatives' perspectives.

Miettinen TT, Tilvis RS, Karppi P, Arve S

Department of Nursing Sciences, University of Tampere, Finland.

In order to determine relatives' opinions of the pain relief of dying patients a postal questionnaire was sent to close relatives (n = 371) of aged patients (mean age 80.1 years) who had died one to two years earlier. In the relatives' opinions, 57% of the patients (n = 211) had suffered from moderate to severe pain and in 22% (n = 46) of these the pain relief was unsuccessful. Inadequate pain relief was associated with a feeling of helplessness in the patients (odds ratio 2.6), insufficient self-determination of analgesic use (9.4), unsatisfactory care of daily needs such as nutrition (8.3), and insufficient care of concomitant symptoms such as dry mouth (6.2). The pain relief was also evaluated as having been unsuccessful when the relatives received limited information about the forthcoming death (5.7), when it was difficult to discuss with the clinical staff (5.7), and when the relatives were not supported by, for example, comforting and heartening (7.9) or encouraging to participate in the care (7.2). In the multivariate analysis, the self-determination of the patients about their pain medication (5.7), difficulties of the relatives to discuss issues with the nursing staff (3.7) and poor atmosphere of the treatment environment (2.8) emerged as the most significant associates of unsuccessful pain relief. The results show that dissatisfaction with the pain management is associated with low appreciation of the treatment of other discomforts and complaints. Successful pain management therefore requires a holistic approach to the wider spectrum of problems in dying patients.

4) Palliat Med 1998 Nov;12(6):417-27

Specialist palliative care in nonmalignant disease.

Addington-Hall J, Fakhoury W, McCarthy M

Department of Palliative Care and Policy, Guy's, King's and St Thomas' School of Medicine/St Christopher's Hospice, London, UK.

The objective of this study was to investigate how many patients who die from causes other than cancer might benefit from specialist palliative care. This was achieved by secondary analysis of data from the Regional Study of Care for the Dying, a retrospective national population-based interview survey. The investigation involved 20 self-selected English health districts, nationally representative in terms of social deprivation and most aspects of health services provision. A total of 3696 patients were randomly selected from death registrations in the last quarter of 1990; an interview concerning the patient was completed 10 months after the death by bereaved family, friends or officials. The results show that a third (243/720) of cancer patients who were admitted to hospices or had domiciliary palliative care scored at or above the median on three measures of reported symptom experience in the last year of life. That is the number of symptoms (eight or more), the number of distressing symptoms (three or more) and the number of symptoms lasting more than six months (three or more). A total of 269 out of 1605 noncancer patients (16.8%) fulfilled these criteria. On this basis, it is estimated that 71,744 people who die from nonmalignant disease in England and Wales each year may require specialist palliative care. An increase of at least 79% in caseload would, therefore, be expected if specialist palliative care services were made fully available to noncancer patients. This is a conservative estimate, as non-cancer patients were matched to only one-third of cancer patients who had specialist palliative care. It is concluded that clinicians and patient groups caring for patients with advanced nonmalignant disease must work together with specialist palliative care services and with health commissioners to develop, fund and evaluate appropriate, cost-effective services which meet patient and family needs for symptom control and psychosocial support.

5) Nurs Forum 1999 Apr-Jun;34(2):5-14

Improving end-of-life care: gathering suggestions from family members.

Pierce SF

Department of Social and Administrative Nursing Systems, School of Nursing, University of North Carolina, Chapel Hill, USA. Juall46@bellatlantic.net

Tertiary care centers are criticized for not providing a peaceful death experience. This qualitative study was undertaken to ascertain suggestions family members (N = 29) might have to improve the situation. Family members made three major suggestions where the negative effects of the complex hospital system might be ameliorated when caring for dying patients: facilitate improved interaction between the dying patient and the family; improve interactions between caregivers and patients/families; and create a setting, or milieu, more conducive to these interactions. Further, family members related an overwhelming need to be close physically to their dying loved one; to be given permission, instruction, and opportunities to touch their loved one; to receive more information from caregivers; and to have their and their loved one's personhood acknowledged and respected. Thus, nurses should engage in respectful, personalized conversations with patients and families that allow them to define the dying experience they desire.

6) Drugs Aging 1999 Nov;15(5):335-40

Drugs used in physician-assisted death.

Willems DL, Groenewoud JH, van der Wal G

Institute for Research in Extramural Medicine and Department of Social Medicine, Vrije Universiteit, Amsterdam, The Netherlands. d.willems.emgo@med.vu.nl

Epidemiological studies, case reports, and recommendations concerning the drugs used in physician-assisted death are reviewed in this paper. Using a MEDLINE and Cancerlit search, we found a total of 20 relevant publications. Recent research, mainly from the Netherlands, has shown that high doses of barbiturates are usually effective for physician-assisted suicide, while a combination of a barbiturate and a derivative of curare are effective for euthanasia. Opioids are less reliable drugs for physician-assisted death because of the unpredictable duration of the dying process even after high doses. The same applies to benzodiazepines. The most frequent undesired effect is an unexpectedly long dying process due to impaired uptake of the drugs. Although the evidence base is incomplete, the Dutch recommendations issued in 1994 and renewed in 1998 do not seem inappropriate.

7) Nurs N Z 1998 Nov;4(10):11-3

Caring for the dying.

Ladbrook J

Southland Hospice.

To provide the best possible care to dying patients, nurses must attend to their physical, emotional and spiritual needs. Nurses must also be aware of their own feelings towards death and dying.

8) Oncol Nurs Forum 1999 Nov-Dec;26(10):1683-7

Nurses' attitudes toward death and caring for dying patients.

Rooda LA, Clements R, Jordan ML

Division of Nursing, Indiana University Northwest, Gary, USA. lrooda@iunhaw1.iun.indiana.edu

PURPOSE/OBJECTIVES: To examine possible relationships among the demographic variables of nurses and their attitudes toward death and caring for dying patients. DESIGN: Descriptive. SETTING: A private hospital and Visiting Nurses Association office in an ethnically diverse metropolitan area in the Midwest. SAMPLE: 403 nurses, predominantly female (90%) and Caucasian (70%), with a mean age of 41.8 years. METHODS: Participants completed the Frommelt Attitude Toward Care of the Dying Scale, the Death Attitude Profile-Revised (DAP-R), and a demographic questionnaire. MAIN RESEARCH VARIABLES: Attitudes toward death and caring for dying people. FINDINGS: DAP-R scores were related to sex, religious affiliation, and current contact with terminally ill patients. Frommelt scale scores (e.g., showing acceptance of death) were positively related to current contact with dying patients, negatively correlated with two DAP-R subscales (Fear of Death and Death Avoidance), and positively correlated with two other DAP-R subscales (Approach Acceptance and Neutral Acceptance). CONCLUSIONS: Nurses' attitudes toward death and their current contact with terminally ill patients were predictive of their attitudes toward caring for terminally ill patients. IMPLICATIONS FOR NURSING PRACTICE: Professionals who are responsible for designing educational programs focused 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.

9) Fam Med 1999 Nov-Dec;31(10):691-6

Factors associated with residents' attitudes toward dying patients.

Kvale J, Berg L, Groff JY, Lange G

Department of Family Practice, University of Texas, Houston, USA. jkvale@fpcm.med.uth.tmc.edu

BACKGROUND AND OBJECTIVES: Management of the dying patient often elicits anxiety in physicians. This study identified the association of physicians' personal fear of death, tolerance of uncertainty, and attachment style with physician attitudes toward dying patients. METHODS: Four psychological scales were distributed to family practice residents located in Texas, Missouri, and Maine. The scales were "Death Anxiety," "Death Attitudes," "Physicians' Reactions to Uncertainty," and "Experiences in Close Relationships." The scores from the measures and demographic data were used to determine which factors were associated with physician attitudes toward caring for terminally ill patients. RESULTS: Completed surveys were received from 157 residents. Younger residents (< 30 years) reported more stress from uncertainty and were more uncomfortable with the care of dying patients. Residents who reported higher death anxiety were also more uncomfortable with caring for dying patients. In a multivariate analysis, uncertainty, death anxiety, and age predicted 26% of the total outcome variance of the death attitudes score. CONCLUSIONS: Physician tolerance of uncertainty plays a significant role in physician attitudes toward the dying patient. Our findings suggest that decreasing physicians' stress from uncertainty by educating them in the management of the dying patient may improve their attitude toward death and may better prepare them to provide end-of-life care.

10)Health Law J 1996;4:197-219

Dying with dignity and the death of dignity.

Pullman D

Centre for Society, Technology and Values, University of Waterloo, Ontario.

11) Int Nurs Rev 1999 Sep-Oct;46(5):135-9

Dying in the USA and Japan: selected legal and ethical issues.

Davis A, Mitoh T

University of California, San Francisco, USA.

While Japan and the USA are culturally different, they face many of the same ethical and legal issues in the area of death and dying. Facing these issues at different times and in different ways, both countries have sought solutions that fit their own social values and traditions.

12) CMAJ 1999 Nov 2;161(9):1109-13

Life support in the intensive care unit: a qualitative investigation of technological purposes. Canadian Critical Care Trials Group.

Cook DJ, Giacomini M, Johnson N, Willms D

Department of Medicine, McMaster University, Hamilton, Ont. debcook@fhs.csu.mcmaster.ca

BACKGROUND: The ability of many intensive care unit (ICU) technologies to prolong life has led to an outcomes-oriented approach to technology assessment, focusing on morbidity and mortality as clinically important end points. With advanced life support, however, the therapeutic goals sometimes shift from extending life to allowing life to end. The objective of this study was to understand the purposes for which advanced life support is withheld, provided, continued or withdrawn in the ICU. METHODS: In a 15-bed ICU in a university-affiliated hospital, the authors observed 25 rounds and 11 family meetings in which withdrawal or withholding of advanced life support was addressed. Semi-structured interviews were conducted with 7 intensivists, 5 consultants, 9 ICU nurses, the ICU nutritionist, the hospital ethicist and 3 pastoral services representatives, to discuss patients about whom life support decisions were made and to discuss life-support practices in general. Interview transcripts and field notes were analysed inductively to identify and corroborate emerging themes; data were coded following modified grounded theory techniques. Triangulation methods included corroboration among multiple sources of data, multidisciplinary team consensus, sharing of results with participants and theory triangulation. RESULTS: Although life-support technologies are traditionally deployed to treat morbidity and delay mortality in ICU patients, they are also used to orchestrate dying. Advanced life support can be withheld or withdrawn to help determine prognosis. The tempo of withdrawal influences the method and timing of death. Decisions to withhold, provide, continue or withdraw life support are socially negotiated to synchronize understanding and expectations among family members and clinicians. In discussions, one discrete life support technology is sometimes used as an archetype for the more general concept of technology. At other times, life-support technologies are discussed collectively to clarify the pursuit of appropriate goals of care. CONCLUSIONS: The orchestration of death involves process-oriented as well as outcome-oriented uses of technology. These uses should be considered in the assessment of life-support technologies and directives for their appropriate use in the ICU.

13) Death Stud 1999 Sep;23(6):495-519

Dying, mourning, and spirituality: a psychological perspective.

Marrone R

California State University, Sacramento, USA. Bobmarrone@aol.com.

Based in an unfortunate tradition that stretches back in time to Watson's behaviorism and Freud's psychoanalysis, psychology has tended to reject and to pathologize matters of the spirit. In the past 30 years, however, with the advent of what has been termed the cognitive revolution, psychology has greatly expanded the scope of its subject matter. Psychologists and thanatologists have begun to unravel the cognitive underpinnings of our assumptive world and the transformation of those underpinnings in times of crisis and stress. This article examines the cognitive basis of the spiritual experience and the use of cognitive assimilation, accommodation strategies during the process of mourning the death of a loved one, as well as during the process of living our own dying. Of special importance to mental health professionals and clergy, new research on dying, mourning, and spirituality suggests that the specific ways in which people rediscover meaning--such as belief in traditional religious doctrine, the afterlife, reincarnation, philanthropy, or a spiritual order to the universe--may be less important than the process itself. In other words, in the midst of dealing with profound loss in our lives, the ability to reascribe meaning to a changed world through spiritual transformation, religious conversion, or existential change may be more significant than the specific content by which that need is filled.

14) Crit Care Med 1999 Oct;27(10):2125-32

The influence of access to a private attending physician on the withdrawal of life-sustaining therapies in the intensive care unit.

Kollef MH, Ward S

Department of Internal Medicine, Washington University School of Medicine, St Louis, MO, USA.

OBJECTIVE: To assess the influence of patient access to a private attending physician on the withdrawal of life-sustaining therapies in a medical intensive care unit (ICU). DESIGN: Prospective cohort study. SETTING: A university-affiliated teaching hospital. PATIENTS: A total of 501 consecutive patients admitted to the medical ICU during a 5-month period. INTERVENTIONS: None MEASUREMENTS AND MAIN RESULTS: Among patients dying in the medical ICU, those without a private attending physician (n = 26) were statistically more likely to undergo the active withdrawal of life-sustaining therapies than patients with a private attending physician (n = 87) (80.8% vs. 29.9%; relative risk = 2.70; 95% confidence interval = 1.86-3.92; p < .001). Despite having similar predicted mortality rates by Acute Physiology and Chronic Health Evaluation II score (60.5% +/- 27.0% vs. 66.1% +/- 21.3%; p = .280), patients dying in the medical ICU without a private attending physician had statistically shorter hospital and ICU lengths of stay, a shorter duration of mechanical ventilation, and fewer total hospital costs and charges compared with patients with access to a private attending physician. Multiple logistic regression analysis, controlling for severity of illness, demographic characteristics, and patient diagnoses, demonstrated that lack of access to a private attending physician (adjusted odds ratio = 23.10; 95% confidence interval = 9.10-58.57; p < .001) and the presence of a do-not-resuscitate order while in the ICU (adjusted odds ratio = 7.33; 95% confidence interval = 3.69-14.54; p = .004) were the only variables independently associated with the withdrawal of life-sustaining therapies before death. CONCLUSIONS: Patients dying in a medical ICU setting without access to a private attending physician are more likely to undergo the active withdrawal of life-sustaining therapies before death than patients with a private attending physician. Health care providers should be aware of possible variations in the practice of withdrawal of life-sustaining therapies in their ICUs based on this patient characteristic.

15) Support Care Cancer 1999 Nov;7(6):437-8

General practitioners caring for terminally ill patients resident in a hospice.

Hermann I, Denekens J, Van den Eynden B, Van Royen P, Verrept H, Maes R

The goal of this study was to investigate why GPs have little or no involvement in the medical process relating to any of their patients when they are admitted to a palliative care unit (PCU) and what solutions they suggest. The study took the form of a descriptive pilot study based on a short questionnaire. It emerged that GPs felt their involvement was influenced by their job description, by practical factors (time investment, distance between practice and PCU, remuneration, referral) and personal issues (e.g. dealing with dying). It is concluded that GPs need education in palliative/supportive care and approved remuneration as well as knowledge about their task in the PCU.

16)J Cancer Educ 1999 Fall;14(3):144-7

Practicing physicians' assessments of the impact of their medical-school clinical hospice experience.

Seligman PA, Massey E, Fink RS, Nelson-Marten P, von Lobkowitz P

Department of Medicine of the University of Colorado School of Medicine, Lakewood, USA. Paul.Seligman@UCHSC.edu

BACKGROUND: The authors measured the impact of a clinical hospice experience in medical school on present medical practice by surveying former students after graduation. METHODS AND RESULTS: Of the graduates who apparently received anonymous questionnaires, 46 (71%) completed and returned them. Most were still in residency, and about a third were in private practice. Using a Likert scale, most gave the highest possible rankings in response to questions about how the experience had affected their present day-to-day communication with patients and their working knowledge of pain control, and the general question that asked about understanding quality-of-life issues. Written responses noted positive effects of the experience on the physicians' present practices, including improved knowledge of and attitudes towards dying patients, assessment of the effects of disease on patients and families, and quality-of-life. CONCLUSIONS: Although course work about death and dying is increasingly encountered in medical-school curricula, an intensive, focused clinical exposure is often lacking. This type of exposure has positive effects on physicians' self-assessments of their knowledge, attitudes, and skills in their present practices.

17) Crit Care Med 1999 Sep;27(9):2005-13

Incorporating palliative care into critical care education: principles, challenges, and opportunities.

Danis M, Federman D, Fins JJ, Fox E, Kastenbaum B, Lanken PN, Long K, Lowenstein E, Lynn J, Rouse F, Tulsky J

National Institutes of Health, Bethesda, MD 20892-1156, USA. mdanis@nih.gov

OBJECTIVE: To identify the goals and methods for medical education about end-of-life care in the intensive care unit (ICU). DATA SOURCES AND STUDY SELECTION: A status report on palliative care, a summary report of recent research on palliative care education, articles in the medical literature on end-of-life care and critical care, and expert opinion were considered. DATA EXTRACTION: A working group, including specialists in critical care, palliative care, medical ethics, consumer advocacy, and communications, was convened at the "Medical Education for Care Near the End of Life National Consensus Conference." A modified nominal group process was used to develop a consensus. DATA SYNTHESIS: In the ICU, life and death decisions are often made in a crisis mode or in the face of uncertainty, and may necessitate the withholding and withdrawal of life-supporting technologies. Because critical illness often diminishes the capacity of patients to make decisions, clinicians must often make decisions in conjunction with surrogates, rather than with patients. Discontinuity of care can threaten trusting relationships, and cultural diversity can have a particularly powerful impact on choices for care. In the face of these realities, it is possible and appropriate to give compassionate palliative care to dying patients and their families in the ICU. CONCLUSIONS: Teaching care of the dying in the ICU should emphasize the following: a) the goals of care should guide the use of technology; b) understanding of prognostication and treatment withholding and withdrawal is essential; c) effective communication and trusting relationships are crucial to good care; d) cultural differences should be acknowledged and respected; and e) the delivery of excellent palliative care is appropriate and necessary when patients die in the ICU.

18) Lijec Vjesn 1999 Jun;121(6):213-5

[Bioethics of dying].

Jusic A

Hrvatsko drustvo za hospicij/palijativnu skrb HLZ-a, Zagreb.

The bioethical problems related to the dying person might be classified in four groups: 1) those of the society the person is involved in, 2) those of physicians and other health professionals, 3) those of the nursing staff in the broadest sense and 4) those connected with the dying person himself. The society must consider the death as a part and natural end of life. One of the most delicate problems related to patient-physician relationship is adequate information concerning the diagnosis and prognosis of the condition. A very complex problem is stopping or not introducing the treatment which cannot influence significantly the quality and length of life. Palliative therapy, although risky, should be introduced if suffering is great. The duty to alleviate suffering is more important than life prolongation. The nursing staff and family should honour the wishes of the dying. Active euthanasia legalization is too risky, especially for nonautonomous persons unable to express their will. In autonomous persons even the possibility of its realization could be the cause of extreme disturbances in patient/physician relationship. Active euthanasia, due to the involvement of public opinion, is already becoming a sociopolitical problem.

19) Zentralbl Chir 1999;124(8):710-5

[Ethics of delivering the message of impending death].

[Article in German]

Splett J

Philosophisch-Theologische Hochschule Sankt Georgen, Frankfurt/M.

Two questions are discussed: 1. our relation to death. Contrary to the saying "shadows of the death" and to it's modern concealment this contribution states: death gives light: it enables to be conscious of one's self and to bow to the inevitable, it shows the valuables of earthly and mortal beings, and even allows us to hope. 2. Solidarity in the situation of death. This situation means the experience of being abandoned and in the same time the challenge to release the other (and to allow him to live [respectively to go]). Against the ego-centralizing power of pain and dread especially the dying needs aid--only to face to (the "hour of") truth. The decisive help is the helper: his being there and remaining by under the common fate.

20) Lancet 1999 Sep 4;354(9181):816-9

Will to live in the terminally ill.

Chochinov HM, Tataryn D, Clinch JJ, Dudgeon D

Department of Psychiatry, University of Manitoba, Winnipeg, Canada. chochin@cc.umanitoba.ca

BACKGROUND: Complex biomedical and psychosocial considerations figure prominently in the debate about euthanasia and assisted suicide. No study to date, however, has examined the extent to which a dying patient's will to live fluctuates as death approaches. METHODS: This study examined patients with cancer in palliative care. Will to live was measured twice daily throughout the hospital stay on a self-report 100 mm visual analogue scale. This scale was incorporated into the Edmonton symptom assessment system, a series of visual analogue scales measuring pain, nausea, shortness of breath, appetite, drowsiness, depression, sense of well-being, anxiety, and activity. Maximum and median fluctuations in will-to-live ratings, separated by 12 h, 24 h, 7 days, and 30 days, were calculated for each patient. FINDINGS: Of 585 patients admitted to palliative care during the study period (November, 1993, to May, 1995), 168 (29%; aged 31-89 years) met criteria of cognitive and physical fitness and agreed to take part. The pattern of median changes in will-to-live score suggested that will to live was stable (median changes <10 mm on 100 mm scale for all time intervals). By contrast, the average maximum changes in will-to-live score were substantial (12 h 33.1 mm, 24 h 35.8 mm, 7 days 48.8 mm, 30 days 68.0 mm). In a series of stepwise regression models carried out at 12 h, 24 h, and 1-4 weeks after admission, the four main predictor variables of will to live were depression, anxiety, shortness of breath, and sense of well-being, with the prominence of these variables changing over time. INTERPRETATION: Among dying patients, will to live shows substantial fluctuation, with the explanation for these changes shifting as death approaches.

21) Arch Intern Med 1999 Aug 9-23;159(15):1741-4

Twenty years beyond medical school: physicians' attitudes toward death and terminally ill patients.

Dickinson GE, Tournier RE, Still BJ

Department of Sociology and Anthropology, College of Charleston, SC 29424, USA. dickinsong@cofc.edu

BACKGROUND: In response to consumer demands and recent changes in health care, the American Medical Association and the Association of American Medical Colleges have expressed concern about how physicians relate to patients, especially those who are seriously ill. OBJECTIVE: To determine the impact of 20 years of medical practice on the attitudes of physicians toward terminally ill patients and their families. METHODS: Data were gathered from questionnaires mailed in 1976 and again in 1996 to physicians who graduated from medical school between 1972 and 1975. RESULTS: Responses were received from 71% and 63% of the 1664 and 1109 physicians surveyed in 1976 and 1996, respectively. Using a t test for paired variables, statistically significant differences were noted for physicians' responses to all of the 11 Likert-type attitudinal statements on death and terminally ill patients and their families. Physicians in 1996 were more willing to inform terminally ill patients of their prognosis and in general seemed more confident with dying patients than they were in 1976. CONCLUSIONS: After 2 decades of practicing medicine, physicians' attitudes toward terminally ill patients seem to have changed; physicians appear to be more open to communicating with terminally ill patients and their families on issues concerning death and dying.

22) Hoitotiede 1998;10(4):207-15

[The nursing care of a dying patient on the health center ward--the relatives' point of view].

[Article in Finnish]

Mikkola-Salo V, Arve S, Lehtonen A, Routasalo P

The purposes of the study were to find out relatives' opinions about the care of dying patients as well as to find out how relatives assess the nursing care which was given to their nearest on the hospital wards. In order to collect the data for the study, the family members of patients (N = 628) who had died not more than one year before in the hospital, were interviewed. The interviewing was done by sending a questionnaire to every other relative (N = 314), 210 of which (62%) answered the questions. The answers to the structured questions were analyzed with the SAS-software and open-ended questions by the content analysis method. The relatives found that the hospital ward was quite a suitable environment for the nursing care of a dying patient. They found visiting hours flexible but they wished that they had the possibility to rest or stay over night in the hospital. The health care professionals responsible for the care of dying patients were considered to succeed in the field of the patient's rest and hygiene, but they took less well care of patient's physical exercise and dental hygiene. The relatives were satisfied with the pain relief the patient got. According to the relatives, examinations, medication, nursing interventions or the "futile" care given did not cause additional suffering. Although the nurses did not response to patients' spiritual well-being or needs of affections, they were able to make the patients happy with their kindness, presence and with good basic care. The relatives were best informed about patients' every day well-being, medication as well as practical matters concerning the time after the death of the patient. If the patient was transferred to another hospital for the terminal care, the relatives found, however, that they didn't get enough information of the situation. The health care professionals did not console the relatives for their grief and they had not been encouraged to participate in the care of their family members.

23) Neurology 1999 Jul 22;53(2):284-93

End-of-life care: a survey of US neurologists' attitudes, behavior, and knowledge.

Carver AC, Vickrey BG, Bernat JL, Keran C, Ringel SP, Foley KM

Department of Neurology, Memorial Sloan-Kettering Cancer Center, New York, NY 10021, USA.

OBJECTIVE: The American Academy of Neurology (AAN) surveyed the attitudes, behavior, and knowledge of its members regarding care at the end of life. Three groups of AAN members were surveyed: neuro-oncologists, ALS specialists, and a representative sample of US neurologists. METHODS: The survey presented two clinical scenarios involving end-of-life care. Neurologists were asked a series of questions to assess their knowledge of existing medical, ethical, and legal guidelines; their willingness to participate in physician-assisted suicide (PAS) or carry out voluntary euthanasia (VE); and their general attitudes regarding end-of-life care. RESULTS: Neurologists support a patient's right to refuse life-sustaining treatment, but many believe that they are killing their patients in supporting such refusals. Thirty-seven percent think it is illegal to administer analgesics in doses that risk respiratory depression to the point of death. Forty percent believe they should obtain legal counsel when considering stopping life-sustaining treatment. One half believe that PAS should be made explicitly legal by statute for terminally ill patients. Under current law, 13% would participate in PAS and 4% would carry out VE; if those procedures were legalized, 44% would participate in PAS and 28% in VE. Approximately one third believe that physicians have the same ethical duty to honor a terminally ill patient's request for PAS as they do to honor a such a patient's refusal of life-sustaining therapy. CONCLUSIONS: There is a gap between established medical, legal, and ethical guidelines for the care of dying patients and the beliefs and practices of many neurologists, suggesting a need for graduate and postgraduate education programs in the principles and practices of palliative care medicine. Many neurologists would participate in PAS and carry out VE if legalized.

24) Eur J Pediatr 1999 Jul;158(7):560-5

Circumstances of dying in hospitalized children.

van der Wal ME, Renfurm LN, van Vught AJ, Gemke RJ

Department of Paediatrics, University Children's Hospital Wilhelmina, Utrecht, The Netherlands.

Conditions of dying in a tertiary children's hospital were assessed in a retrospective cohort study. Non-survivors, excluding newborns and emergency room patients, were allocated to four groups: brain death (BD), failed cardiopulmonary resuscitation (failed CPR), death following a do-not-resuscitate (DNR) order and death following withholding or withdrawal of therapy (W/W). In a 4-year period 190 (1.3%) of 14,903 admitted patients died. Of these 134 (71%) died on the paediatric intensive care unit, 42 (22%) on the ward and 14 (7%) in the operating room. W/W was found in 75 (39%), failed CPR in 57 (30%), BD in 32 (17%), and death following a DNR order in 26 (14%). Justifications for restrictions of treatment (W/W or DNR) were imminent death in 41 (41%), lack of future relational potential in 13 (13%) and excessive burden of disease in 47 (47%). In non-survivors analgesics and sedatives were frequently used to relieve suffering in the terminal phase. General principles for the approach of terminally ill children in whom death may become an option instead of a fate are discussed. CONCLUSION: In the majority of children dying in hospital, death occurred following restrictions of life-sustaining treatment, comprising do-not-resuscitate or other forms of withholding or withdrawal of therapy.

25) Gan To Kagaku Ryoho 1999 Jun;26 Suppl 1:70-6

[Progress in palliative medicine].

[Article in Japanese]

Ishitani K

Higashi Sapporo Hospital.

The major factors in the progress in palliative medicine in Japan are the hospice movement, as represented by the activities of the Japanese Association for Clinical Research on Death and Dying, and interdisciplinary research on the quality of life (QOL), particularly in the field of clinical oncology. Palliative medicine as a new paradigm today encompasses the fields of biology, psychology, sociology, and ethics, all of which are making steady progress under the banner of evidence-based medicine. In recent years, the problems of euthanasia and physician-assisted suicide, subjects of great debate and public concern, especially in America and European countries, have been studied in the field of psycho-oncology and continue to attract considerable attention. The relationship between depression and social supports is said to be of particular importance. The American Society of Clinical Oncology (ASCO) has made a positive statement to the effect that it would not hesitate in confronting the so-called "end-of-life" issue. All of these global trends point to the increasing importance of palliative medicine.

26) Suicide Life Threat Behav 1999 Summer;29(2):97-104

Reasons for living versus reasons for dying: examining the internal debate of suicide.

Jobes DA, Mann RE

Department of Psychology, Catholic University of America, Washington, DC 20064, USA.

The Reasons for Living vs. Reasons for Dying (RFL/RFD) Assessment was used to obtain suicidal outpatients' top five reasons for living and for dying, respectively. Forty-nine suicidal university counseling center patients provided 173 RFL and 145 RFD responses. These responses were organized into eight RFL coding categories and nine RFD coding categories. Two coders trained in the RFL/RFD coding system showed high levels of interrater reliability (KRFL = .81; KRFD = .80). Chi-square results for RFL and RFD coding categories showed that the coding categories were not equally salient to these suicidal patients.

27) Psychosomatics 1999 Jul-Aug;40(4):309-13

Quality of life in hospice patients. A pilot study.

Bretscher M, Rummans T, Sloan J, Kaur J, Bartlett A, Borkenhagen L, Loprinzi C

Department of Psychiatry, Mayo Clinic, Rochester, Minnesota 55905, USA.

The general public and the medical community often perceive dying patients' quality of life (QOL) as rapidly deteriorating before death. However, with appropriate palliative services, this effect may be positively modified. Objective data are lacking on the true experience of dying from the point of view of the patient that this pilot study begins to address. Patients caregivers, and staff in our hospice program completed questionnaires evaluating the patient's QOL every 2 weeks until the patient's death. This pilot study found that patients QOL was relatively high and stable over time. Primary caregivers rated the patient's QOL lower than patient self-ratings, whereas the hospice staff evaluated the patient's QOL similarly to the patient. Many dying patients suffer and are perceived as having no QOL in the final days by their caregivers. This perception may be modified to maintain one's QOL with the help of palliative medical services, thereby relieving the suffering of those who are actively facing death.

28) Can Nurse 1998 Oct;94(9):40-4, 46

[Palliative care, a humanitarian way].

[Article in French]

Gendron C

This portion of a study, first published last month, examines the various aspects of dying (including the dying person's needs); looks introspectively at the spiritual aspect of death; and analyzes the behavior and attitudes of care-giving staff, their values, motivations and needs. While dying people may have unpredictable attitudes and behavior, nurses need to maintain an attitude of caring and communication in their interventions. Important to consider when nursing the dying are subjects such as: establishing a helping relationship; appropriate communication; and self-knowledge and preconceived notions. Criticism most often directed at palliative care suggests that curative and palliative care should be integrated; should abandon their reserved territories (such as care units); and should develop an association that goes beyond the terminal phase.

29) Oncol Nurs Forum 1999 Jun;26(5):869-76

Analysis of end-of-life content in nursing textbooks.

Ferrell B, Virani R, Grant M

City of Hope National Medical Center, Duarte, CA, USA.

PURPOSE/OBJECTIVES: To determine the amount and types of content regarding pain and end-of-life (EOL) care included in major textbooks used in nursing education. DESIGN: Descriptive. SAMPLE: 50 texts (45,683 pages) selected from a potential of more than 700 texts. METHODS: Content analysis and quantification of nine essential areas of EOL care content present in the texts. MAIN RESEARCH VARIABLES: Nine areas of EOL care: palliative care defined; quality of life, pain; other symptom assessment/management; communication with dying patients and families; role/needs of family caregivers in EOL care; death; issues of policy, ethics, and law; and bereavement. FINDINGS: Only 2% of the overall content and 1.4% of chapters in nursing texts were related to EOL care. Based on the analysis, many deficiencies were identified in the texts, including inaccurate information and a lack of information regarding critical EOL topics. CONCLUSIONS: Nursing texts contain limited content regarding EOL care. Increased attention to this area is essential in preparing nurses to care for patients at EOL. IMPLICATIONS FOR NURSING PRACTICE: Nursing practice is based on the foundation of nursing education. Changes in nursing school curriculum and provision of continuing education for practicing nurses are essential for improved EOL care.

30) J Prof Nurs 1999 May-Jun;15(3):151-9

Assisted suicide and nursing: possibly compatible?

White BC

Department of Philosophy, California State University, Chico 95929-0730, USA.

This article argues that the American Nurses Association's (ANA) prohibition of nurse-assisted suicide is misguided. The ANA's reasons for this policy do not provide the necessary conceptual or empirical support for the prohibition. In fact, arguments appear to lead to support for nurse-assisted suicide: (1) because the claim that death is always harmful may be false, the obligation to "do no harm" does not necessarily preclude assisted suicide (AS); (2) currently we have no evidence that AS would erode public trust in nurses; (3) AS may be compatible with the professional integrity of nursing, particularly the commitments to respecting autonomy, promoting patient welfare, and providing compassionate care; (4) nursing's participation would constrain, rather than contribute to, the potential for abuse to vulnerable patient populations; and (5) the professional has a responsibility to either embrace the public's increasing support of aid in dying or determine why AS is morally indefensible and educate the public.

1)Oncologist 2000;5(1):53-62
Sedation for intractable distress of a dying patient: acute palliative care and the principle of double effect.

Krakauer EL, Penson RT, Truog RD, King LA, Chabner BA, Lynch TJ Jr

Hematology-Oncology Department, Massachusetts General Hospital, Boston 02114-2617, USA.

Shortly before his death in 1995, Kenneth B. Schwartz, a cancer patient at Massachusetts General Hospital (MGH), founded the Kenneth B. Schwartz Center at MGH. The Schwartz Center is a nonprofit organization dedicated to supporting and advancing compassionate health care delivery, which provides hope to the patient, support to caregivers, and encourages the healing process. The Center sponsors the Schwartz Center Rounds, a monthly multidisciplinary forum where caregivers reflect on important psychosocial issues faced by patients, their families, and their caregivers, and gain insight and support from fellow staff members. The case presented is of a young man dying of recurrent epithelioid hemangioendothelioma, distressed with stridor and severe pain, whose poorly controlled symptoms were successfully treated with an infusion of propofol, titrated to provide effective comfort in the last few hours of the patient's life. The tenet of double effect, which allows aggressive treatment of suffering in spite of foreseeable but unintended consequences, is reviewed. The patient's parents were invited and contributed to the Rounds, providing compelling testimony to the power of the presence of clinicians at the time of death and the importance of open communication about difficult ethical issues.

2)Perspect Biol Med 1999 Autumn;43(1):103-11
On dying with personhood: socratic death.

Potter VR

McArdle Laboratory for Cancer Research, Madison, WI 53706, USA.

3)J Palliat Care 1999 Winter;15(4):13-9
Age is not the crucial factor in determining how the palliative care needs of people who die from cancer differ from those of people who die from other causes.

Addington-Hall JM, Karlsen S

Department of Palliative Care and Policy, Guy's, King's and St Thomas' School of Medicine, London, UK.

A belief that the hospice philosophy is particularly applicable to younger people may account in part for the continued focus of palliative care on cancer patients, as it has been argued that age is the crucial factor in determining how cancer and non-cancer patients differ. We conducted a secondary analysis of the data from a UK population-based retrospective survey, the Regional Study of Care for the Dying, to critically examine this proposition. The sample comprised 2062 cancer and 1471 non-cancer deaths. On average cancer patients were younger. However, at all ages non-cancer and cancer patients differed significantly with, for example, different patterns of dependency and symptomatology. The cause of death--rather than age--is therefore the principal difference between cancer and non-cancer patients. The debate within palliative care on whether and how to provide services for non-cancer patients must move beyond a focus on group differences such as age between these and cancer patients and focus instead on understanding the varying problems non-cancer patients experience, and addressing how best to organize palliative care services to meet the individual needs of these patients.

4)Transfusion 2000 Feb;40(2):135-8
Apoptosis in transfusion medicine:of death and dying-is that all there is?

Snyder EL, Kuter DJ

Yale University School of Medicine, New Haven CT, Harvard Medical School, Boston, MA.

5)JAMA 2000 Feb 9;283(6):771-8
End-of-life care content in 50 textbooks from multiple specialties.

Rabow MW, Hardie GE, Fair JM, McPhee SJ

Division of General Internal Medicine, University of California, San Francisco 94115, USA. mrabow@medicine.ucsf.edu

CONTEXT: Prior reviews of small numbers of medical textbooks suggest that end-of-life care is not well covered in textbooks. No broad study of end-of-life care content analysis has been performed on textbooks across a wide range of medical, pediatric, psychiatric, and surgical specialties. OBJECTIVE: To determine the quantity and rate the adequacy of information on end-of-life care in textbooks from multiple medical disciplines. DESIGN AND SOURCES: A 1998 review of 50 top-selling textbooks from multiple specialties (cardiology, emergency medicine, family and primary care medicine, geriatrics, infectious disease and acquired immunodeficiency syndrome [AIDS], internal medicine, neurology, oncology and hematology, pediatrics, psychiatry, pulmonary medicine, and surgery) for the presence and adequacy of content in 13 end-of-life care domains. MAIN OUTCOME MEASURES: Chapters on diseases commonly causing death and those devoted to end-of-life care were identified, read, rated, and compared by textbook specialty, chapter, and domain for the presence of helpful information in the 13 domains. Content for each domain was rated as absent, minimally present, or helpful. Textbook indexes were analyzed for the number of pages relevant to end-of-life care. RESULTS: Overall, helpful information was provided in 24.1% (range, 8.7%-44.2%) of the expected end-of-life content domains; in 19.1% (range, 6.2%-38.5%), expected content received minimal attention; and in 56.9% (range, 23.1 %-77.9%), expected content was absent. As a group, the textbooks with the highest percentages of absent content were in surgery (71.8%), infectious diseases and AIDS (70%), and oncology and hematology (61.9%). Textbooks with the highest percentage of helpful end-of-life care content were in family medicine (34.4%), geriatrics (34.4%), and psychiatry (29.6%). In internal medicine textbooks, the content domains with the greatest amount of helpful information were epidemiology and natural history. Content domains covered least well were social, spiritual, ethical, and family issues, as well as physician after-death responsibilities. On average, textbook indexes cited 2% of their total pages as pertinent to end-of-life care. CONCLUSION: Top-selling textbooks generally offered little helpful information on caring for patients at the end of life. Most disease-oriented chapters had no or minimal end-of-life care content. Specialty textbooks with information about particular diseases often did not contain helpful information on caring for patients dying from those diseases.

6)Dtsch Med Wochenschr 2000 Jan 21;125(3):45-51
[Decubitus ulcer in the terminal phase: epidemiologic, medicolegal and ethical aspects].

Heinemann A, Lockemann U, Matschke J, Tsokos M, Puschel K

Institut fur Rechtsmedizin, Universitatsklinik Eppendorf, Hamburg. heineman@uke.uni-hamburg.de

BACKGROUND AND OBJECTIVES: Pressure sores usually result from insufficient preventive measures. They are particularly omnipresent among dying persons in geriatric care. This study deals with prevalence, risk factors and the significance of the nursing environment. PATIENTS AND METHODS: The prevalence of pressure sores among the dead was analysed in a prospective cross-sectional study based on 10,222 postmortem examinations in a crematorium in Hamburg. RESULTS: The overall prevalence of pressure sores from grades I to IV was 11.2% (grade I: 6.1%, grade II: 3%, grade III: 1.1%, grade IV: 0.9%). A final logistic regression model showed that pressure sores of Grade III or IV were associated with female gender, date of death in the summer, marasmus, stroke history, neurological disease in general, kidney disease, preceding traumatic events and nursery home residence at the time of death. More than half of all the grade IV cases were diagnosed among nursing home residents whereas those who had died in hospitals contributed to only 11.5% of all the grade IV cases (dead from private homes 34.4%). Nursing home residence was associated with female gender, marasmus and stroke history which predisposed to a higher rate of pressure sores. CONCLUSIONS: Nursing homes are confronted with the highest proportion of pressure sores among dying people when compared to hospitals or private home care. Failure to meet the standards of preventive action against pressure sores point to the shortfalls in the present public health sector and nursing home regulations as well as the medical responsibility for supervision of nursing care. Apart from established standards of care, medicolegal assessment of high-grade pressure sores should also take ethical considerations into account when considering maximum therapy goals among dying persons.

7)Health Place 1999 Mar;5(1):119-24
A death in our street.

Walter T

Department of Sociology, University of Reading, Whiteknights, UK.

How do neighbours relate to the dying, and what effect does a death have on a neighbourhood? After briefly reviewing related literature, the article explores the concepts of reciprocity and solidarity, using the recent work of Michael Young to highlight limitations in the work of Philip Abrams. The potential of suffering to generate neighbourhood solidarity in an increasingly affluent and private society is considered.

8)Palliat Med 1999 Jul;13(4):275-83
Lay carers' satisfaction with community palliative care: results of a postal survey. South Tyneside MAAG Palliative Care Study Group.

Lecouturier J, Jacoby A, Bradshaw C, Lovel T, Eccles M

Centre for Health Services Research, Newcastle upon Tyne, UK.

This paper reports the substantive findings of a study that examined the feasibility of using postal questionnaires to assess the satisfaction of lay caregivers with the care received in the community by those dying of cancer. The focus of the analysis was the quality of information provided by health professionals, health services used in the final year of the dying person's life and the lay carer's views about the quality of these services. The study was a retrospective survey of lay carers identified from death certificates over a 9-month period. Of the 355 people contacted, 156 completed the questionnaires, a 44% response rate. The results of the survey indicate that information provision was deemed unsatisfactory by a large proportion of respondents, and that dissatisfaction with care received from hospital, the district nursing service and the general practitioner was common. Levels of satisfaction with care were clearly related to a range of service factors. Our survey also highlighted clear differences in the perceived quality of specialist and generic services for those dying of cancer. A comparison of the findings from this postal study with those reported in earlier retrospective interview surveys of lay carers suggests that the use of the postal questionnaire is a valid and cost-effective approach for assessing quality of care. The data provide baseline information against which improvements in the quality of care can be measured.

9)Anticancer Res 1999 Sep-Oct;19(5C):4441-2
Fentanyl patches for the treatment of pain in dying cancer patients.

Jakobsson M, Strang P

Palliative Care Unit Linnea, Vrinnevi Hospital, Norrkoping, Sweden. Maria.Jakobsson@lio.se

It has been claimed that fentanyl patches are less suitable for elderly patients and for patients who are terminally ill and dying. In a retrospective survey of 205 cancer patients who died within the hospital-based home care in Norrkoping, Sweden between January 1997 and June 1998 we identified 34 patients who had used fentanyl patches. 30 patients were possible to evaluate for the analgesic efficacy of transdermal fentanyl. 18 out of 30 patients were treated with fentanyl until time of death. The estimated efficacy was good or moderate in 93% and 88%, respectively, of patients younger or older than 65 years of age.

CUIDADOS PALIATIVOS

1)Oncologist 2000;5(1):53-62
Sedation for intractable distress of a dying patient: acute palliative care and the principle of double effect.

Krakauer EL, Penson RT, Truog RD, King LA, Chabner BA, Lynch TJ Jr

Hematology-Oncology Department, Massachusetts General Hospital, Boston 02114-2617, USA.

Shortly before his death in 1995, Kenneth B. Schwartz, a cancer patient at Massachusetts General Hospital (MGH), founded the Kenneth B. Schwartz Center at MGH. The Schwartz Center is a nonprofit organization dedicated to supporting and advancing compassionate health care delivery, which provides hope to the patient, support to caregivers, and encourages the healing process. The Center sponsors the Schwartz Center Rounds, a monthly multidisciplinary forum where caregivers reflect on important psychosocial issues faced by patients, their families, and their caregivers, and gain insight and support from fellow staff members. The case presented is of a young man dying of recurrent epithelioid hemangioendothelioma, distressed with stridor and severe pain, whose poorly controlled symptoms were successfully treated with an infusion of propofol, titrated to provide effective comfort in the last few hours of the patient's life. The tenet of double effect, which allows aggressive treatment of suffering in spite of foreseeable but unintended consequences, is reviewed. The patient's parents were invited and contributed to the Rounds, providing compelling testimony to the power of the presence of clinicians at the time of death and the importance of open communication about difficult ethical issues.

2)Perspect Biol Med 1999 Autumn;43(1):103-11
On dying with personhood: socratic death.

Potter VR

McArdle Laboratory for Cancer Research, Madison, WI 53706, USA.

3)J Palliat Care 1999 Winter;15(4):13-9
Age is not the crucial factor in determining how the palliative care needs of people who die from cancer differ from those of people who die from other causes.

Addington-Hall JM, Karlsen S

Department of Palliative Care and Policy, Guy's, King's and St Thomas' School of Medicine, London, UK.

A belief that the hospice philosophy is particularly applicable to younger people may account in part for the continued focus of palliative care on cancer patients, as it has been argued that age is the crucial factor in determining how cancer and non-cancer patients differ. We conducted a secondary analysis of the data from a UK population-based retrospective survey, the Regional Study of Care for the Dying, to critically examine this proposition. The sample comprised 2062 cancer and 1471 non-cancer deaths. On average cancer patients were younger. However, at all ages non-cancer and cancer patients differed significantly with, for example, different patterns of dependency and symptomatology. The cause of death--rather than age--is therefore the principal difference between cancer and non-cancer patients. The debate within palliative care on whether and how to provide services for non-cancer patients must move beyond a focus on group differences such as age between these and cancer patients and focus instead on understanding the varying problems non-cancer patients experience, and addressing how best to organize palliative care services to meet the individual needs of these patients.

4)Transfusion 2000 Feb;40(2):135-8
Apoptosis in transfusion medicine:of death and dying-is that all there is?

Snyder EL, Kuter DJ

Yale University School of Medicine, New Haven CT, Harvard Medical School, Boston, MA.

5)JAMA 2000 Feb 9;283(6):771-8
End-of-life care content in 50 textbooks from multiple specialties.

Rabow MW, Hardie GE, Fair JM, McPhee SJ

Division of General Internal Medicine, University of California, San Francisco 94115, USA. mrabow@medicine.ucsf.edu

CONTEXT: Prior reviews of small numbers of medical textbooks suggest that end-of-life care is not well covered in textbooks. No broad study of end-of-life care content analysis has been performed on textbooks across a wide range of medical, pediatric, psychiatric, and surgical specialties. OBJECTIVE: To determine the quantity and rate the adequacy of information on end-of-life care in textbooks from multiple medical disciplines. DESIGN AND SOURCES: A 1998 review of 50 top-selling textbooks from multiple specialties (cardiology, emergency medicine, family and primary care medicine, geriatrics, infectious disease and acquired immunodeficiency syndrome [AIDS], internal medicine, neurology, oncology and hematology, pediatrics, psychiatry, pulmonary medicine, and surgery) for the presence and adequacy of content in 13 end-of-life care domains. MAIN OUTCOME MEASURES: Chapters on diseases commonly causing death and those devoted to end-of-life care were identified, read, rated, and compared by textbook specialty, chapter, and domain for the presence of helpful information in the 13 domains. Content for each domain was rated as absent, minimally present, or helpful. Textbook indexes were analyzed for the number of pages relevant to end-of-life care. RESULTS: Overall, helpful information was provided in 24.1% (range, 8.7%-44.2%) of the expected end-of-life content domains; in 19.1% (range, 6.2%-38.5%), expected content received minimal attention; and in 56.9% (range, 23.1 %-77.9%), expected content was absent. As a group, the textbooks with the highest percentages of absent content were in surgery (71.8%), infectious diseases and AIDS (70%), and oncology and hematology (61.9%). Textbooks with the highest percentage of helpful end-of-life care content were in family medicine (34.4%), geriatrics (34.4%), and psychiatry (29.6%). In internal medicine textbooks, the content domains with the greatest amount of helpful information were epidemiology and natural history. Content domains covered least well were social, spiritual, ethical, and family issues, as well as physician after-death responsibilities. On average, textbook indexes cited 2% of their total pages as pertinent to end-of-life care. CONCLUSION: Top-selling textbooks generally offered little helpful information on caring for patients at the end of life. Most disease-oriented chapters had no or minimal end-of-life care content. Specialty textbooks with information about particular diseases often did not contain helpful information on caring for patients dying from those diseases.

6)Dtsch Med Wochenschr 2000 Jan 21;125(3):45-51
[Decubitus ulcer in the terminal phase: epidemiologic, medicolegal and ethical aspects].

Heinemann A, Lockemann U, Matschke J, Tsokos M, Puschel K

Institut fur Rechtsmedizin, Universitatsklinik Eppendorf, Hamburg. heineman@uke.uni-hamburg.de

BACKGROUND AND OBJECTIVES: Pressure sores usually result from insufficient preventive measures. They are particularly omnipresent among dying persons in geriatric care. This study deals with prevalence, risk factors and the significance of the nursing environment. PATIENTS AND METHODS: The prevalence of pressure sores among the dead was analysed in a prospective cross-sectional study based on 10,222 postmortem examinations in a crematorium in Hamburg. RESULTS: The overall prevalence of pressure sores from grades I to IV was 11.2% (grade I: 6.1%, grade II: 3%, grade III: 1.1%, grade IV: 0.9%). A final logistic regression model showed that pressure sores of Grade III or IV were associated with female gender, date of death in the summer, marasmus, stroke history, neurological disease in general, kidney disease, preceding traumatic events and nursery home residence at the time of death. More than half of all the grade IV cases were diagnosed among nursing home residents whereas those who had died in hospitals contributed to only 11.5% of all the grade IV cases (dead from private homes 34.4%). Nursing home residence was associated with female gender, marasmus and stroke history which predisposed to a higher rate of pressure sores. CONCLUSIONS: Nursing homes are confronted with the highest proportion of pressure sores among dying people when compared to hospitals or private home care. Failure to meet the standards of preventive action against pressure sores point to the shortfalls in the present public health sector and nursing home regulations as well as the medical responsibility for supervision of nursing care. Apart from established standards of care, medicolegal assessment of high-grade pressure sores should also take ethical considerations into account when considering maximum therapy goals among dying persons.

7)Health Place 1999 Mar;5(1):119-24
A death in our street.

Walter T

Department of Sociology, University of Reading, Whiteknights, UK.

How do neighbours relate to the dying, and what effect does a death have on a neighbourhood? After briefly reviewing related literature, the article explores the concepts of reciprocity and solidarity, using the recent work of Michael Young to highlight limitations in the work of Philip Abrams. The potential of suffering to generate neighbourhood solidarity in an increasingly affluent and private society is considered.

8)Palliat Med 1999 Jul;13(4):275-83
Lay carers' satisfaction with community palliative care: results of a postal survey. South Tyneside MAAG Palliative Care Study Group.

Lecouturier J, Jacoby A, Bradshaw C, Lovel T, Eccles M

Centre for Health Services Research, Newcastle upon Tyne, UK.

This paper reports the substantive findings of a study that examined the feasibility of using postal questionnaires to assess the satisfaction of lay caregivers with the care received in the community by those dying of cancer. The focus of the analysis was the quality of information provided by health professionals, health services used in the final year of the dying person's life and the lay carer's views about the quality of these services. The study was a retrospective survey of lay carers identified from death certificates over a 9-month period. Of the 355 people contacted, 156 completed the questionnaires, a 44% response rate. The results of the survey indicate that information provision was deemed unsatisfactory by a large proportion of respondents, and that dissatisfaction with care received from hospital, the district nursing service and the general practitioner was common. Levels of satisfaction with care were clearly related to a range of service factors. Our survey also highlighted clear differences in the perceived quality of specialist and generic services for those dying of cancer. A comparison of the findings from this postal study with those reported in earlier retrospective interview surveys of lay carers suggests that the use of the postal questionnaire is a valid and cost-effective approach for assessing quality of care. The data provide baseline information against which improvements in the quality of care can be measured.

9)Anticancer Res 1999 Sep-Oct;19(5C):4441-2
Fentanyl patches for the treatment of pain in dying cancer patients.

Jakobsson M, Strang P

Palliative Care Unit Linnea, Vrinnevi Hospital, Norrkoping, Sweden. Maria.Jakobsson@lio.se

It has been claimed that fentanyl patches are less suitable for elderly patients and for patients who are terminally ill and dying. In a retrospective survey of 205 cancer patients who died within the hospital-based home care in Norrkoping, Sweden between January 1997 and June 1998 we identified 34 patients who had used fentanyl patches. 30 patients were possible to evaluate for the analgesic efficacy of transdermal fentanyl. 18 out of 30 patients were treated with fentanyl until time of death. The estimated efficacy was good or moderate in 93% and 88%, respectively, of patients younger or older than 65 years of age.

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