Calling the question of "possible dying" among nursing home residents: triggers, barriers, and facilitators

Glaser and Strauss reported decades ago that in order for a person to be treated as dying, he/she must be defined as dying. Defining nursing home residents as "dying" can be complicated because most residents are in advanced old age with multiple chronic conditions. Using a social construction theoretical framework, this study looks at the step before the declaration of dying, that is, the consideration of the possibility of dying. This qualitative study is a secondary analysis of prospective data collected during 16 months of fieldwork on behalf of 45 nursing home residents whose health was considered declining. The purpose of this paper is to build understanding about the social construction of "possible dying" by reporting triggers that can call the question of possible dying and stimulate a discussion about the nursing home resident's status, prognosis, care options, and preferences. These triggers include: Health status decline; noncompliance with diet or medications; available medical interventions not being well suited for the residents; and family consideration of an out-of-town trip. The paper also reports barriers (family, staff, and disease process) and facilitators to calling the question of possible dying, including families having a sense of treatments they would like to avoid and having the opportunity to talk through options. Findings are discussed in light of basic assumptions of social construction. Implications for social workers include helping residents, families, and staff anticipate and address the possibility of dying, and to reflect these discussion in care plans, as well as the need to be available to help residents and family members with psychosocial issues related to living and dying in the nursing home setting, including the profound issues that can be provoked or exacerbated by resident health status decline and possible dying.     

Ethical challenges in conducting research on dying patients and those at high risk of dying

Clinical research to improve care across the broad spectrum of health care has led to better quantity and quality of life for many patients. However, imposing arbitrary restrictions that might result in the exclusion from clinical research of patients who are at the end of life, or patients with a high risk of dying, is undesirable. Such exclusions may violate the principle of justice, by denying these patients a valid opportunity to make an important socio-medical contribution, and could make it difficult or impossible to advance clinical knowledge about the care of these patients. This article reviews issues relevant to the conduct of research on dying patients and those who are at high risk of dying, and outlines special considerations for ensuring that such research is ethical. In particular, precautions should be taken to ensure that informed consent is obtained from patients who are capable (or their substitute decision maker if the patient is not capable), free from coercion, and not harboring false expectations about the likelihood of benefiting from the study intervention. The unique circumstances surrounding the timing of this research (at the end of life or potentially there) may warrant that some patients be considered vulnerable, requiring special protective measures. Adhering to these principles will help ensure that dying patients or patients at high risk of dying can still participate in research that has the potential to advance knowledge and improve future care.     

Death Does Not Become Us

Abstract

The social issues of death, dying and bereavement represent important but neglected research areas, and such issues need attention both for practical reform and for deciphering what living with intellectual disability entails. The difficulties which life poses for people with intellectual disabilities may well persist in the times before and after death. As research issues they offer not only potential practical significance, but also a means of determining the social status and value of people with intellectual disabilities. This paper reviews the issues of death and dying from the viewpoint of sociological research and seeks to identify the ways death and dying have been treated within the research literature on living with intellectual disability. It is suggested that these issues have been discounted with some important consequences for the way intellectual disability is perceived. Important areas for research in this area are highlighted.     

Palliative healthcare: cost reduction and quality enhancement using end-of-life survey methodology

American medical institutions throughout the 20th century prescribed high customer satisfaction, but when it came to death, largely ignored it. An accelerated accumulation of esoteric medical information and the application of this knowledge to affect new cures and longer lives instilled an unquestioning reverence for the medical community among the patient population. Diminishing marginal gains in life expectancy, escalating costs related to life sustaining technologies, and a psychographic shift in the dominant consumer base have challenged this traditional reverence. Armed with unprecedented access to medical information, a more knowledgeable and assertive patient population has emerged in the 21st century to institute its own standards of what constitutes quality health care. In terms of end of life care, this has meant recognition that the emotional needs of the dying have been largely underserved by the current American medical model. Patients and their families are no longer willing to accept the traditional medical perspective of death as failure and have numerous international palliative care models that serve as benchmarks of success when it comes to quality of dying. When cure is a possibility, Americans will pursue it at all costs, but when it is not a possibility, they want honest communication and the opportunity to say good-bye to their loved ones. In the context of these emergent needs, life review is offered as a solution. The value proposition targets not only dying patients and their families, but also society as a whole.     

Palliative Healthcare: Cost Reduction and Quality Enhancement Using End-of-Life Survey Methodology

ABSTRACT

American medical institutions throughout the 20th century prescribed high customer satisfaction, but when it came to death, largely ignored it. An accelerated accumulation of esoteric medical information and the application of this knowledge to affect new cures and longer lives instilled an unquestioning reverence for the medical community among the patient population. Diminishing marginal gains in life expectancy, escalating costs related to life sustaining technologies, and a psychographic shift in the dominant consumer base have challenged this traditional reverence. Armed with unprecedented access to medical information, a more knowledgeable and assertive patient population has emerged in the 21st century to institute its own standards of what constitutes quality health care. In terms of end of life care, this has meant recognition that the emotional needs of the dying have been largely underserved by the current American medical model. Patients and their families are no longer willing to accept the traditional medical perspective of death as failure and have numerous international palliative care models that serve as benchmarks of success when it comes to quality of dying. When cure is a possibility, Americans will pursue it at all costs, but when it is not a possibility, they want honest communication and the opportunity to say good-bye to their loved ones. In the context of these emergent needs, life review is offered as a solution. The value proposition targets not only dying patients and their families, but also society as a whole.     

重庆市城市社区心理卫生现状调查及其对策思考

本文通过问卷调查、现场走访等方式,分析、描述了设为直辖市后重庆主城区社区居民心理健康观念、社区心理健康教育状况及其成因。作者认为,在现代社会,由于生活节奏的加快,各种竞争的加剧,人们在享受不断丰富的物质生活的同时,精神生活方面却越来越觉得并不十分完美,“亚健康”成为一个相当普遍的社会问题,增加人文关怀,进行城市社区心理健康教育,建立心理危机干预系统就显得很有必要。     

Calling the Question of “Possible Dying” Among Nursing Home Residents

Abstract

Glaser and Strauss reported decades ago that in order for a person to be treated as dying, he/she must be defined as dying. Defining nursing home residents as “dying” can be complicated because most residents are in advanced old age with multiple chronic conditions. Using a social construction theoretical framework, this study looks at the step before the declaration of dying, that is, the consideration of the possibility of dying. This qualitative study is a secondary analysis of prospective data collected during 16 months of fieldwork on behalf of 45 nursing home residents whose health was considered declining. The purpose of this paper is to build understanding about the social construction of “possible dying” by reporting triggers that can call the question of possible dying and stimulate a discussion about the nursing home resident's status, prognosis, care options, and preferences. These triggers include: Health status decline; noncompliance with diet or medications; available medical interventions not being well suited for the residents; and family consideration of an out-of-town trip. The paper also reports barriers (family, staff, and disease process) and facilitators to calling the question of possible dying, including families having a sense of treatments they would like to avoid and having the opportunity to talk through options. Findings are discussed in light of basic assumptions of social construction. Implications for social workers include helping residents, families, and staff anticipate and address the possibility of dying, and to reflect these discussion in care plans, as well as the need to be available to help residents and family members with psychosocial issues related to living and dying in the nursing home setting, including the profound issues that can be provoked or exacerbated by resident health status decline and possible dying.     

A Time and Place: The Role of Social Workers in Improving End-of-Life Care

Americans are living longer, but dying after a prolonged period of management of multiple chronic illnesses and functional disabilities. Despite waves of public and professional activity targeted toward improving care for the dying and supporting the families, gaps in care and challenges in end-of-life care persist. Contentious issues such as the so-called “death panels” or physician payment for discussion of advance directives and care wishes at the end of life; aid in dying; and regarding individuals who actively choose death (case of Brittney Maynard) are continually debated in the public media. Progress toward improvement in the experience of dying remains incremental and change has been slow. With the release of a second Institute of Medicine (2014 Institute of Medicine (IOM). (2014). Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: National Academy Press. [Google Scholar]) report devoted to what it means to die in America in the 21st century, momentum and opportunity for change may increase. If this is to happen, social workers will need to deliver the range of biopsychosocial care that patients and families so desperately need. However, holistic care of the individual will only improve, if the nation also addresses ongoing systemic problems in financing, policy, and service delivery in end-of-life care.     

Religion in School

It has become a banal statement (one that does not elicit objections) that we are living in "troubled" times. This is not the place to talk about the causes of such a situation; what we have to deal with here are the consequences. The breakdown of dogmas in the social consciousness in a period of instability is primarily a threat to young people. We are faced with the danger of producing a generation of "children of perestroika," who have lost their faith in everything and everyone, who are filled with negativism, total denial, and quiet desperation, who carry in themselves, at best, moral deafness and fierce egotism. The crisis of worldview in society may produce a generation of "lukewarm" people who are not capable of any personal or social creativity and service. At the same time, however, the crisis opens possibilities for a genuine rebirth of culture, for reactivation of the quest for "self" on the part of every person and of society as a whole. This active striving on the part of the healthy portion of young people must be met by today's intellectual elite with full knowledge and understanding of the situation, with a readiness and ability to satisfy the needs for a worldview of their fellow citizens, drawing upon all the values of our native and world culture. These needs must be truly satisfied, not by pumping out the latest current "lies" or by manufacturing the "most progressive doctrines of modern times" atthe request of this or that social body, because our society cannot stand to be deceived one more time.     

Enhancing the resilience of children and young people in public care by mentoring their talents and interests

It is argued that the progress and resilience of young people in public care can be greatly enhanced by attention to the value of cultural, sporting and other activities in their lives. Sensitive mentoring of the young person in these activities by concerned adults – members of the child's social network or volunteers – can foster the potential of the young person, build self-esteem, strengthen mental health and open new social relationships beyond the care system. A series of case illustrations are used to demonstrate how such involvement in activities can greatly improve the prospects for a more successful transition out of care. It is suggested that the potential of this neglected dimension of care can only be fully realized through alert professional practice, imaginative engagement with potential 'natural' mentors, supportive agency policy, effective care planning systems, and relevant training and professional supervision for social workers.     

Tackling the problem of teenage pregnancy in looked‐after children: a peer mentoring approach

Teenage pregnancy is associated with adverse health and social outcomes, even after adjusting for prior disadvantage, and is recognized as a major public health issue. Rates of teenage pregnancy in the UK are among the highest in Europe. Interventions introduced in the past decade to address the problem, such as improved sex and relationships education in schools, have been accompanied by a fall in teenage pregnancy rates in the UK. However, this decline has not been mirrored among looked‐after children. In this paper, we discuss why this may be the case. We suggest that a system of peer mentoring, involving a young person, whose experience of life post‐care has been positive, may be an effective approach to tackling the problem of pregnancy in this group. Peer mentoring has the potential to assist young people in developing self‐esteem, confidence and in making choices regarding their education, personal development and relationships.     

Life Review Therapy

Reminiscence in the aged is frequently viewed as pathological-a wish to escape from the present, a loss of recent memory, or useless and repetitive rambling. However, talking about the events of one's life may be indicative of just the opposite--a healthy activity with adaptive value for coping with the final stages of life. According to Erik Erikson, the nearness of death precipitates a crisis during which a person evaluates his/her accomplishments and failures in order to find meaning in life. If he/she does this successfully, "integrity" rather than "despair" can be achieved. It is to this end that the technique of life review therapy was developed. To illustrate this therapy, this paper includes a case presentation of a 73-year-old man.     

On the Contingent Valuation of Safety and the Safety of Contingent Valuation: Part 2 - The CV/SG "Chained" Approach

This article reports the results of a study aimed at estimating a willingness-to-pay based value of statistical life for road risks using a multi-stage approach which involves "chaining together" responses to contingent valuation and standard gamble questions.The rationale for employing a multi-stage approach is to break the wealth/risk of death trade-off down into a number of conceptually manageable steps, thereby trying to attenuate the various biases that appear to be pervasive in responses to more direct contingent valuation questions in the health and safety field.     

Stress experienced by informal caregivers On conflicting demands in everyday life

Stress was defined as a conflict experienced between contradictory demands on the disposition of time and space in the life situation of caregivers. The following questions were asked: are there any family or gender related patterns to be found in the individual expressions of stress experiences? How can differences in stress experiences be explained in terms of work load, sociocultural demands related to gender and family relations, or lack of control in everyday life? What are the effects of a well developed welfare system? What are the differences between a rural and an urban setting and how do different life modes influence sociocultural demands and individual decision latitudes, creating and limiting different contributions of care? How are cultural characteristics reflected in stress experiences? The sample consists of 99 care recipients, all in intense formal care, and the person identified by the care recipient as the person in the informal network who contributed most or took most responsibility in caregiving. Stress experience among main helpers is related to area of living, main helper's gender, kin relation to the care recipient and lack of a shared responsibility within the informal network. Obtaining support in the caring situation reduces the instrumental demands and also the experience of stress. Women in urban areas had less caring commitments in the informal network but also experienced more stress. Help from public home services, however, was not found to reduce the instrumental demands and experiences of stress in all situations.     

"An Inner Group of Willing People": Volunteering in a Religious Context

In the age of "welfare pluralism", volunteers are attracting increasing attention from academics and policy-makers. This paper focuses on volunteering in the context of religious congregations. It is found to be similar in some ways to that in secular organizations but there are also significant differences including the impact of religious values on motivation, the fact that congregational volunteers are also "members", and the special relationship with clergy. It is concluded that congregational volunteers can be important constituents of the "mixed economy of care"and "civil society". However, long-term care may be provided better by institutions which are less dependent on individual enthusiams.     

A New Model of Welfare: Re-asserting the Value of Kinship for Children in State Care

This paper briefly examines current arguments concerning the demise of the traditional family, pointing out that the numbers of lone-parent families are not historically unparalleled and noting that the current emphasis in the "death of the family" debate on the nuclear rather than the extended family marks a significant shift over recent decades. The nature of kinship is briefly examined in historical context, and kin relationships are seen to be fundamentally different on a number of important dimensions from other social relationships. The erosion of kinship as the consequence of the increasing state regulation of family life and the lack of importance it is now generally accorded in modern child welfare systems is considered and the reasons for this are discussed. Finally the article turns to the changes that would be required were kinship decision-making once more accorded a key place in planning for the care of children deemed to be in need of care and protection and the potential, as a model for practice, of the family group conference is considered.     

德、位张力与先秦儒家的性命之学——对楚简《唐虞之道》第14至29号简的思想解读

文章系统解读了楚简《唐虞之道》第14至29号简的思想内涵及脉络,认为这部分简文首先通过尧成为天子之原因的追问,突出了德与位的张力问题,即在应然之理上,有位必当有德,但就实然之事看,有德未必有位.简文对这一德位张力有两个层面的解决方案:一方面,要求有德无位者全力修德,谨守性命,安于时命,养成恒常如一的圆满德行,从而能在得位而治时能“利天下而弗利”；另一方面,要求有位者透悟性命之正,从而能主动尚德授贤、退而养生,这既能使贤者居位而利天下,又能退而养生以自利.简文将“七十致政”之礼普遍化,试图断绝天子终身制的构想,也具有深刻的政治哲学意义.     

"礼器"的文化阐释

郑玄、孔颖达等训诂大师皆将《礼记·礼器》篇名及篇首“礼器”之语诠释为“礼能使人成器”。这种解释与孔子“君子不器”的哲学命题相悖 ;孔子和儒家认为人乃“天地之心” ,礼是人治国、修身之器 ,故“礼器”不得解释为“礼能使人成器” ;儒家坚信一个真正的君子不能仅有一器之用 ,而应该成为博学通才。“礼器”当为古汉语判断句式 ,意思是“礼是器具” ,可以理解为“礼是人修身之器”。     

Guy with a Gun - Condemned Man,Rebel, Writer: "War" Prose by Young Authors

Spirit breathes where it pleases. But literature lives where it can—or, rather, where it is allowed to live. Literature's life in thick literary-artistic journals is a difficult one, but no more difficult than the life of any regular person in this era of changes; in other words, the difficulties are natural. In recent years, literature has begun to "live" in publications of an entirely different type: "glossy" journals and newspapers, including dailies. How is its life there, in, for instance, Playboy magazine? Or Cosmopolitan? Or on the newspaper pages, next to the horrors of our everyday life? We asked some very different people from some very different "nonliterary" publications to tell us about it. These people have one thing in common: all of them, directly or indirectly, are helping literature to expand its habitat.     

AIDS,the individual,family and community: psychosocial issues

Understanding of the psychosocial factors associated with acquired immunodeficiency syndrome (AIDS) at both the individual and societal levels is essential to the design of programs aimed at treating the virus and containing its spread. In Africa, AIDS has profound implications for economic development, the general quality of life, demographic patterns, male-female relationships, child development, and family structure. Relevant psychosocial issues include fear of the unknown and the tendency to depersonalize AIDS victims, burn-out on the part of caretakers, fear of contagion, fear of being around a dying person, helplessness, and anger. Poverty undermines coping capacities and pushes many families affected by AIDS into disorganization and crisis. Moreover, the shame and guilt associated with AIDS in Africa leads many families to isolate themselves from social support. Through trends such as the loss of skilled manpower to AIDS and a need for aging parents to reassume full care of infected adult children, AIDS has disrupted Africa's social system as well. Community education is essential to reduce fears related to living amidst those who are infected, sick, and dying and minimize the erosion of societal institutions.