Perimortal management--humanistic assignment and responsibility. Attempt at status determination

The scientific research and practical use of all questions concerning life demands interdisciplinary cooperation. This is the result of neglection of death and dying and new social and medical developments as there are institutionalisation of dying and scientific-technical progress. The foundation of the working group "perimortal medicine" in 1983 in the Association for clinical medicine gives the possibility to discuss theoretical and practical questions concerning the end of life, death and dying. It seems to be important, that also bereavement and sympathy belongs to the topics. The results will help to develop the quality of care for the dying and the survivors.     

Hospice care

"Birth and death are the most singular events we experience and therefore the contemplation of death as of birth should be a thing of beauty." The hospice movement emerged out of an awareness that the needs of the dying patient were not being adequately met by the modern medical establishment. It has brought about a positive change in attitudes toward the dying. Hospice has given the patient and family back the responsibility of making decisions regarding life and death. It has called to our awareness difficult moral and ethical issues to which no clear right or wrong answers exist but about which only informed judgments may be made. However, the hospice program has a long way to go. The public needs to be educated about existing financial, social, and medical provisions available to them in preparation for death. The education of medical, nursing, and paramedical professionals must emphasize technical and philosophical principles about death and dying. Teachers must address moral and ethical issues, and physicians must demonstrate kind and compassionate care in the management of their dying patients. Finally, society has the moral obligation to ensure that its dying members have access to care directed specifically to their needs. Hospice does not offer simple solutions to all the problems raised in this article, but it does embody a philosophy of care that acknowledges these issues, and it provides support for those with the courage to address them. Hospice care in the United States is now at a crossroads; whereas such care is appealing and acceptable to the public, this care has yet to find its place as an integral part of the health care system and be accepted as another facet of health delivery.     

Quality Improvement in End-of-Life Critical Care

Patients, clinicians and policy makers are increasingly interested in measuring and improving the quality of health care at the end of life. The intensive care unit (ICU) is characterized by high mortality and frequent use of life-sustaining treatments, making critical care a natural target for these efforts. Indeed, multiple local and regional quality improvement efforts now specifically target the dying experience for ICU patients, patients at risk for ICU admission, and their families. These activities either target ICU caregivers through educational programs and quality incentives, or target patients and their families directly through palliative care and efforts to improve decisions around the end of life. Although these initiatives hold great promise, they also face inherent challenges-it is difficult to measure the quality of end-of-life care, we lack practical targets for affecting quality, and uncertain political climates can often preclude serious discussions about end-of-life care. Moreover, these programs may lead to unintended consequences, potentially negatively impacting the very care they seek to improve. Future innovations surrounding how we measure the quality of end-of-life care and paradigm shifts in the way we think about ICU quality may help us to fully realize the goal of improving the dying process for ICU patients.     

Aspects of the psychology of the terminal stage of life

Six person-centered and six social-network-centered constructs are discussed in order to describe aspects of the terminal time of life: age attitude, death concept, surviving motivation, coping style, partner relatedness, experience of dying; degree of connection, bearing power, taking over, life-end-communication, dying accompany, mourning work. A life span theory of change in activity and social functions stands in the background.     

Experiences With and Attitudes Toward Death and Dying Among Homeless Persons

Background Homeless persons face many barriers to health care, have few resources, and experience high death rates. They live lives of disenfranchisement and neglect. Few studies have explored their experiences and attitudes toward death and dying. Unfortunately, studies done in other populations may not apply to homeless persons. Exploring these experiences and attitudes may provide insight into life, health care, and end-of-life (EOL) concerns of this population. Objective To explore the experiences and attitudes toward death and dying among homeless persons. Design Qualitative study utilizing focus groups. Participants Fifty-three homeless persons recruited from homeless service agencies. Measurements In-depth interviews, which were audiotaped and transcribed. Results We present seven themes, some of which are previously unreported. Homeless persons described many significant experiences with death and dying, and many participants suffered losses while very young. These encounters influenced participants’ attitudes toward risks and risky behavior: e.g., for some, these experiences provided justification for high-risk behaviors and influenced their behaviors while living on the streets. For others, they may be associated with their homelessness. Finally, these experiences informed their attitudes toward death and dying as well as EOL care; homeless persons believe that care will be poor at the EOL. Conclusions Findings from this study have implications for addressing social services, health promotion, prevention, and EOL care for homeless persons, as well as for others who are poor and disenfranchised.     

Transitions in health and social service system at the end of life

This study focuses on the amount and types of transitions in health and social service system during the last 2 years of life and the places of death and among Finnish people aged 70–79, 80–89 and 90 or older. The data set, derived from multiple national registers, consists of 75,578 people who died between 1998 and 2001. The services included university hospitals, general hospitals, health centres and residential care facilities. The most common place of death was the municipal health centre: half of the whole research population died in a health centre. The place of death varied by age and gender: men and people in younger age groups died more often in general or in university hospital or at home, while dying in health centres or in residential care homes was more common among women or the very old. Number of transitions varied from zero to over a hundred transitions during the last 2 years. Number of transitions increased as death approached. Men and younger age groups had more transitions than women and older age groups. Among men and younger age groups transitions between home and general or university hospital were common while transitions between home and health centre or residential care were more common to women and older people. The results indicate that municipal health centres have a major role as care providers as death approaches. Differences between gender and age in numbers and types of transitions were clear. Future research is needed to clarify the causes to these differences.     

Barriers to communication about end-of-life care in AIDS patients

Objective

Patients and physicians do not adequately discuss patients’ preferences for medical care at the end of life. Our objective was to perform a qualitative study using focus groups to identify barriers and facilitators to communication about end-of-life medical care for patients with AIDS and their physicians.

Participants

Patients with AIDS and physicians with moderate or extensive HIV experience were recruited from clinics and community-based settings using network sampling. A total of 47 patients participated in six focus groups and 19 physicians participated in three groups.

Measurements and main results

Patients or physicians identified 29 barriers and facilitators to communication about end-of-life care. Many patients and physicians expressed discomfort talking about death and dying, and some felt that discussing end-of-life care could cause harm or even hasten death. Several patients expressed the view that a living will obviated the need for discussion with their physician. Previous experience of discrimination from the health care system was a strong barrier to end-of-life communication for some patients with AIDS. Some patients hesitate to bring up end-of-life issues because they want to protect their physicians from uncomfortable discussions. Many patients identified the quality of communication as an important facilitator to these difficult discussions.

Conclusions

Improving the quality of patient-physician communication about end-of-life care will require that physicians identify and overcome the barriers to this communication. To improve the quality of medical care at the end of life, we must address the quality of communication about end-of-life care.     

Dialysis: prolonging life or prolonging dying? Ethical, legal and professional considerations for end of life decision making

There are over 7,000 people on dialysis in Australia and this is predicted to increase due to the ageing population and the high incidence of diabetes mellitus. Discontinuation of dialysis is the second most frequent cause of death in dialysis patients in Australia. Risk factors for the discontinuation of dialysis include: co-morbidities (especially diabetes mellitus) and being older. Because the decision to discontinue dialysis is a major life choice, collaborative decision making should be encouraged, and the patient needs assurances of the continuation of care and kindness, a palliative care plan, and the alleviation of suffering. Patients decide to discontinue dialysis because of an unacceptable quality of life, depression and a chronic failure to thrive. Health professionals need to support end of life decision making using an ethical decision framework. A review of current literature was undertaken and revealed a paucity of information in regard to palliation in those with end stage renal disease who had discontinued dialysis. The fear of dying, pain, suffering, and abandonment that a patient and/or their family may perceive as being associated with death may create barriers to decisions to discontinue with dialysis treatments. Therefore health care personnel should provide information with honesty to allow patients to predict their quality of life and death. Support for the patient and family during the dying period should be multi-disciplinary, with clear and timely communication between all members of the team.     

Quality of dying in the ICU: ratings by family members

STUDY OBJECTIVES: To explore the quality of the dying experience and associations to higher quality ratings for people who died in an ICU. DESIGN: Retrospective study using medical record review and surveys of family members with the Quality of Dying and Death (QODD) instrument. SETTING: Four ICUs affiliated with a university and a Veterans Affairs Medical Center. PARTICIPANTS: Ninety-four family members of 38 ICU decedents. MEASUREMENTS AND RESULTS: We explored associations between components of the ICU experience and the overall rating of the quality of the dying experience. Overall, family members reported that symptoms were poorly controlled: pain under control most or all of the time in 47%, and breathing comfortably most or all of the time in 3% of patients. Families expressed a moderate and variable view of the quality of dying resulting in an overall ICU QODD score of 60 +/- 14 (on a scale of 0 to 100) [mean +/- SD]. Higher ICU QODD scores were associated with control of pain (r = 0.42, p = 0.009), control of events (r = 0.62, p < 0.001), a "preparation for death" aspect of the dying experience--feeling at peace with dying (r = 0.69, p < 0.001), and a "whole-person concern"--keeping one's dignity and self-respect (r = 0.50, p < 0.001). CONCLUSIONS: After adjusting for symptom and personal care scores, certain whole-person and preparation-for-death aspects of the dying process, and not aggressiveness of end-of-life care, remained the most associated to quality ratings. While future research should explore the important predictors of quality of dying in the ICU, this study suggests that care at the end of life in the ICU include not only managing pain, but also supporting dignity, respect, and peace, and maximizing patient control.     

Talking it out: helping our patients live better while dying

Although dying is an inevitable part of the life cycle, there has been extensive political debate over end-of-life care. Participating in end-of-life care conversations can be emotionally challenging for everyone involved. Messages about serious or terminal illnesses can be very hard for patients and their families to hear, and physicians frequently struggle with the burden of delivering these messages. Still, evidence shows that conversations about end-of-life care options between physicians and patients can improve the quality of life of dying patients and help to relieve the emotional burden on surviving loved ones. Legislation to support these discussions by consistently reimbursing physicians for their time spent performing this service has been blocked on multiple occasions. More research on how to improve end-of-life care will enable health care providers to optimize treatment of their patients. Overcoming political divides to support end-of-life care conversations is needed to promote care that is consistent with patients' values and needs and is a key step in encouraging better quality of life for dying patients.     

DIALYSIS: PROLONGING LIFE OR PROLONGING DYING? ETHICAL,LEGAL AND PROFESSIONAL CONSIDERATIONS FOR END OF LIFE DECISION MAKING

There are over 7,000 people on dialysis in Australia and this is predicted to increase due to the ageing population and the high incidence of diabetes mellitus. Discontinuation of dialysis is the second most frequent cause of death in dialysis patients in Australia. Risk factors for the discontinuation of dialysis include: co‐morbidities (especially diabetes mellitus) and being older. Because the decision to discontinue dialysis is a major life choice, collaborative decision making should be encouraged, and the patient needs assurances of the continuation of care and kindness, a palliative care plan, and the alleviation of suffering. Patients decide to discontinue dialysis because of an unacceptable quality of life, depression and a chronic failure to thrive. Health professionals need to support end of life decision making using an ethical decision framework. A review of current literature was undertaken and revealed a paucity of information in regard to palliation in those with end stage renal disease who had discontinued dialysis. The fear of dying, pain, suffering, and abandonment that a patient and/or their family may perceive as being associated with death may create barriers to decisions to discontinue with dialysis treatments. Therefore health care personnel should provide information with honesty to allow patients to predict their quality of life and death. Support for the patient and family during the dying period should be multi‐disciplinary, with clear and timely communication between all members of the team.     

Dying on the Streets: Homeless Persons’ Concerns and Desires about End of Life Care

Background There is little understanding about the experiences and preferences at the end of life (EOL) for people from unique cultural and socioeconomic backgrounds. Homeless individuals are extreme examples of these overlooked populations; they have the greatest risk of death, encounter barriers to health care, and lack the resources and relationships assumed necessary for appropriate EOL care. Exploring their desires and concerns will provide insight for the care of this vulnerable and disenfranchised population, as well as others who are underserved. Objective Explore the concerns and desires for EOL care among homeless persons. Design Qualitative study utilizing focus groups. Participants Fifty-three homeless persons recruited from agencies providing homeless services. Measurements In-depth interviews, which were audiotaped and transcribed. Results We present 3 domains encompassing 11 themes arising from our investigation, some of which are previously unreported. Homeless persons worried about dying and EOL care; had frequent encounters with death; voiced many unique fears, such as dying anonymously and undiscovered; favored EOL documentation, such as advance directives; and demonstrated ambivalence towards contacting family. They also spoke of barriers to EOL care and shared interventions to improve dying among the very poor and estranged. Conclusions Homeless persons have significant personal experience and feelings about death, dying, and EOL care, much of which is different from those previously described in the EOL literature about other populations. These findings have implications not only for homeless persons, but for others who are poor and disenfranchised. Potential Financial Conflict of Interest None disclosed     

Caring for patients at the end of life: reflections after 12 years of practice

Physicians have the privilege and authority to assist patients and their families at the end of life. Regardless of diagnosis, commonalities occur in the dying process, and palliative care benefits patients and families. This perspective chronicles my experience over 12 years caring for 95 patients at the end of life, illustrated in part with six vignettes. I describe interactions with families, discuss logistic issues around dying, examine the do-not-resuscitate issue, and highlight experiences with home visits. I also touch on how I communicate with the family after a death. I hope to express the significance of what I have learned while assisting patients and families at this critical juncture.     

Lebensqualität am Lebensende: Erfahrungen, Modelle und Perspektiven

The present paper gives an overview of theoretical concepts and empirical research on the issue of quality of life at the end of life with a focus on psychological concepts of lifelong development. Faced with severe illness, it seems that in old age the quality of life strongly depends on the individuals' potentials for developmental change. In addition, particular qualities of the spatial, social, and care context, taking the psychosocial, spiritual and practical competences and needs of the patients and their relatives into account, seem to lead to a higher degree of self determination and well-being. Empirical findings on the predictors of quality of life and of a "good death" are reported. Implications for an adequate care context at the end of life and research needs are discussed.     

Does Hospice Improve Quality of Care for Persons Dying from Dementia?

OBJECTIVES: To examine the effectiveness of hospice services for persons dying from dementia from the perspective of bereaved family members. DESIGN: Mortality follow‐back survey. SETTING: Death certificates were drawn from five states (AL, FL, TX, MA, and MN). PARTICIPANTS: Bereaved family members listed as the next of kin on death certificates when dementia was listed as the cause of death. MEASUREMENTS: Ratings of the quality of end‐of‐life care, perceptions of unmet needs, and opportunities to improve end‐of‐life care. Two questions were also asked about the peacefulness of dying and quality of dying. RESULTS: Of 538 respondents, 260 (48.3%) received hospice services. Family members of decedents who received hospice services reported fewer unmet needs and concerns with quality of care (adjusted odds ratio (AOR)=0.49, 95% confidence interval (CI)=0.33–0.74) and a higher rating of the quality of care (AOR=2.0, 95% CI=1.53–2.72). They also noted better quality of dying than those without hospice services. CONCLUSION: Bereaved family members of people with dementia who received hospice reported higher perceptions of the quality of care and quality of dying.