False expectations? Expectations vs. probabilities for dying

It is widely recognized that the code of the physician has undergone dramatic changes in the last century--changes which have serious implications for the patient-physician relationship. This is an ethnographic study examining how certain changes in the role and abilities of biomedical physicians have affected patient attitudes and expectations about end-of-life care. In-home interviews were conducted with eighteen persons age fifty-five and older, including a sample of Hemlock Society members. Results indicate a broad spectrum of end-of-life concerns including capacity, autonomy, pain, and burden to loved ones. Most participants reported a reluctance to begin a discussion of death or future deteriorating capacity with their physicians. Instead, when conversations about death were reported, they had been largely limited to the scenarios of catastrophic illness (e.g., hospitalization, ventilator, etc.) and the Living Will. While this discussion does not overlook the utility of the Living Will, it proposes the reliance on this document for preparing patients for end-of-life care is inadequate.     

St Christopher's and the future

The founding vision of St Christopher's Hospice was based on a recognition that permeating mainstream health care services would be essential and an emphasis on an adaptable philosophy rather than a building. Today, demographic and disease related changes mean that need and demand for end-of-life care will inevitably outstrip professional and financial resource. Hospices must engage with the development of cost-effective models of service delivery and rational planning. Only partnership working with the National Health Service, care homes, and others will ensure that appropriate care is available to everyone wherever the bed in which they die, regardless of diagnosis. Only collaboration and active engagement will ensure that future strategy in end-of-life care retains the original insight that its focus rightly includes not only patients but also the social context that will be affected by their death. Cost and patient choice dictate an emphasis on care at home. Health-promoting, public education and family-focused strategies will be essential. At a pivotal moment for the delivery of health care generally, hospices can play a vital part by marrying the role of "insistent conscience" of the health care service with continued cost-effective clinical innovation.     

Complicated grief symptoms in caregivers of persons with lung cancer: the role of family conflict, intrapsychic strains, and hospice utilization

Guided by a stress process conceptual model, this study examines social and psychological determinants of complicated grief symptoms focusing on family conflict, intrapsychic strains, and the potential moderating effect of care quality and hospice utilization. Relying on data from 152 spouse and adult child lung cancer caregiver survey respondents, drawn from an ancillary study of the Assessment of Cancer CarE and SatiSfaction (ACCESS) in Wisconsin, hierarchical multiple regression analysis was used to examine determinants of complicated grief. After controlling for contextual factors and time since death, complicated grief symptoms were higher among caregivers with less education, among families with lower prior conflict but higher conflict at the end-of-life, who had family members who had difficulty accepting the illness, and who were caring for patients with greater fear of death. Additionally, hospice utilization moderated the effect of fear of death on complicated grief. Findings suggest that family conflict, intrapsychic strains, and hospice utilization may help to explain the variability found in complicated grief symptoms among bereaved caregivers. Implications for enhancing complicated grief assessment tools and preventative interventions across the continuum of cancer care are highlighted.     

Overcoming barriers to access and utilization of hospice and palliative care services in African-American communities

While there is ample evidence to support the need for hospice and palliative care services for African Americans, only 8% of patients who utilize those services are from African-American communities. The underutilization of end-of-life and palliative care can be attributed to several barriers to service access including incompatibility between hospice philosophy and African-American religious, spiritual, and cultural beliefs; health care disparities; distrust of the medical establishment; physician influence; financial disincentives, and hospice admission criteria. Suggestions for dismantling barriers to care access include developing culturally competent professionals in the health and human services, expanding the philosophy of hospice to include spiritual advisors from client communities, and funding national initiatives to promote improved access to health care at all stages in the life cycle of members of all underserved communities.     

Older adults' attitudes toward death: links to perceptions of health and concerns about end-of-life issues

The current study had two primary goals, to determine whether: 1) self-rated mental and physical health, pain, and experience with health problems were predictors of elderly adults' attitudes toward death; and 2) death attitudes predict end-of-life medical treatment concerns. Participants were 109 adults, 65 years of age or older (M=78.74 years), recruited from the local community. Regression analysis indicated that poorer perceived physical health predicted a greater likelihood of viewing death as an escape, and poorer perceived mental health predicted a greater fear of death. Viewing death as an escape and fearing death predicted end-of-life medical treatment concerns; a greater endorsement of either attitude predicted more concern. Possible explanations for the links between perceived health, attitudes toward death, and concern about end-of-life issues are suggested.     

Awareness of dying: an experience of Chinese patients with terminal cancer

Despite the effort to provide an alternate way to dying, there seems to be little effort to examine the real situation of hospice care. For example, the patients' desired outcomes are seldom addressed. It is recently that studies began to investigate the features of "good death." However, work in eastern cultures, such as Chinese, remains scarce. The purpose of this study is to gain an understanding of what it means to die a "good death" from the perspective of Chinese patients. Thirty-three Chinese hospice patients with terminal cancer were interviewed. Grounded in the analysis of qualitative data, seven elements that contribute to dying a good death emerged. Awareness of dying was identified as the foremost essential element of a good death. From the findings of this study, most respondents considered receiving a diagnosis of cancer as one of the significant points of psychological distress in the course of their illness. Half of the patients openly talked about their cancers and more than half of them discussed various issues related to death. That means, about one-third of the respondents talked about death and cancer with openness. These preliminary findings may reflect the progress of hospice work in Hong Kong. Meanwhile, 13 respondents did not mention the word "death" and 16 of them did not mention that they had cancer. They talked about their illness and future using the expressions that they preferred. It is important that health care professionals also respect people who show awareness of dying as much as those who do not present clear evidence of this awareness. Both groups of people can have a positive experience when they die.     

The new health care civilization: integration of physician land and manageria

Changes occurring in health care demand that physicians expand their professional knowledge and skills beyond the medical and behavioral sciences. Subjects absent from traditional medical education curricula, such as the economics and politics of health care, practice management, and leadership of professional organizations, will become important competencies, particularly for physicians who serve in management roles. Because physicians occupy a central role in planning and allocating medical care services and other health care resources, they must be better prepared to work with other health care professionals to create a new civilization, even if this means leaving the cloistered domain of "physician land" to serve as interface professionals between the delivery of medical services and the management of health care. Our research findings and conclusions strongly suggest that economic, management, and leadership competencies need to be incorporated into the professional development of physicians, especially in postgraduate and continuing education curricula.     

Disenfranchised grief and nonfinite loss as experienced by the families of death row inmates

The families of death row inmates experience grief and loss issues that have been neglected by scholars and clinicians alike. The issues found in this population are unique and require our understanding. The present study uses the concepts of disenfranchised grief and nonfinite loss to uncover the pain experienced by the children and other family members who have a loved one on death row. Kenneth Doka's (1989) concept of disenfranchised grief is utilized to bring attention to the ways in which the circumstances surrounding an execution leave the family members of those condemned to death outside of the "grieving rules" that exist in the United States. Family members are disenfranchised from their grief, as society does not socially validate their pain. The loss that they feel is also nonfinite (Bruce & Schultz, 2001) in that it is continuous and denies the families all of the hopes, dreams, and expectations that they had for their loved one who now sits on death row. The qualitative interview method was utilized by the authors of this study to gather data from 26 family members of death row inmates who are incarcerated along the East Coast of the United States. The reactions of this group of family members are varied and complex, yet they include the following common responses: social isolation due to stigma and their own feelings of criminalization, intensified family conflict between family members who grieve differently from one another, diminished self-esteem, shame, diffused and specific feelings of guilt, and a chronic state of despair. This study explores virtually untapped terrain. An examination of the microlevel effects of the death penalty on families provides insight in to the area of death and dying, especially as it is related to disenfranchised loss and nonfinite grief. In addition, this study provides insight into the death penalty and its effects.     

The ascendancy of primary care: permanent or temporary?

The conventional wisdom strongly suggests a health care provider food chain for the future: Primary care physicians (PCPs), principally family practitioners, on the top playing the lead role, distantly followed by specialists, with hospitals and other ancillary services even further down the line. Is this a reasonable expectation? Will PCPs dominate the new systems? Or will they be but one of many equally necessary components of these developing integrated health care delivery organizations? Looking at the various models now developing, it would seem that future integrated delivery systems will utilize both PCPs and specialists, but with strong augmentation from a diverse assortment of other health care professionals, including nonphysician providers, educators, and administrators. To separate the illusion of primary care dominance of the coming health care system from the likely reality, we should first determine what is driving the apparent present demand for primary care physicians. Next, we will examine the possible and probable reactions to that demand from an economic standpoint and from the points of view of both health care professionals and the public. Finally, we must try to picture how health care provider organizations of the future are likely to look and how they will integrate their health care professionals.     

Medical decision-making around the time of death of cognitively impaired nursing home residents: a pilot study

The purpose of this article is to describe the end-of-life process in the nursing home for three groups of cognitively-impaired nursing home residents: those who died with a medical decision-making process prior to death; those who died without such a decision-making process; and those who had a status-change event and a medical decision-making process, and did not die prior to data collection. Residents had experienced a medical status-change event within the 24 hours prior to data collection, and were unable to make their own decisions due to cognitive impairment. Data on the decision-making process during the event, including the type of event, the considerations used in making the decisions, and who was involved in making these decisions were collected from the residents' charts and through interviews with their physicians or nurse practitioners. When there was no decision-making process immediately prior to death, a decision-making process was usually reported to have occurred previously, with most decisions calling either for comfort care or limitation of care. When comparing those events leading to death with other status-change events, those who died were more likely to have suffered from troubled breathing than those who remained alive. Hospitalization was used only among those who survived, whereas diagnostic tests and comfort care were used more often with those who died. Those who died had more treatments considered and chosen than did those who remained alive. For half of those who died, physicians felt that they would have preferred less treatment for themselves if they were in the place of the decedents. The results represent preliminary data concerning decision-making processes surrounding death of the cognitively-impaired in the nursing home. Additional research is needed to elucidate the trends uncovered in this study.     

Racial differences in end-of-life planning: why don't Blacks and Latinos prepare for the inevitable?

I evaluate the extent to which ethnic disparities in advance care planning reflect cultural and religious attitudes and experience with the painful deaths of loved ones. Data are from a sample of 293 chronically ill older adults who are seeking care at one of two large medical centers in urban New Jersey. Blacks and Hispanics are significantly less likely than Whites to have a living will, a durable power of attorney for health care (DPAHC), and to have discussed their end of life treatment preferences. Multivariate analyses reveal that the Black-White gap in advance care planning is largely accounted for by Blacks' belief that God controls the timing and nature of death. The Hispanic-White gap is partially accounted for by the belief that one's illness negatively affects one's family. Ethnic disparities are starkest for living will and DPAHC use, and less pronounced for discussions. Implications for policy and practice are discussed.     

Lonely at the top and loving it: physicians as CEOs

As little as five years ago, most hospital board members scoffed at the idea of hiring physicians as chief executive officers or chief operating officers. Physicians, they maintained, belonged at the bedside, not in the board room. For the most part, physicians didn't take issue with this thinking. Profit and loss statements, strategic planning, and other CEO duties were alien. Besides, being a "suit" was unconscionable, a total fall from the true grace of medicine: patient care. Dramatic changes in health care have wrought dramatic changes in the mindsets of both board members and physicians. Today, both sides have developed a new perspective on physicians in top hospital administrative positions. In this article, the author reports on the experiences of physician executives who have made the trip to the top.     

Researching "good death" in a Hong Kong palliative care program: a clinical data-mining study

This study operationalizes and assesses the percentage of "good deaths" achieved among Chinese cancer patients in a palliative care program, the profile of these patients, the relationship between patients with a good death and psychosocial factors, and the differences in background factors, and physical and psychosocial conditions between patients who experienced a good death and those who did not. Clinical data mining was the research method used. Records of deceased cancer patients between 2003 and 2005 in a palliative care unit were the sole data source. Good death was operationally defined as the patient's record indicating no pain (physical) or anxiety (psychological), and having open and honest communication with family (social) in the final assessment by the Support Team Assessment Schedule (STAS) just before death. Using these criteria, about one-fifth of patients (21.5%; 137 out of 638) experienced a good death. Those with a good death were significantly older and were in palliative care longer. Their records also indicated lower levels of constipation, insomnia, oral discomfort, and family anxiety at their first and at their final STAS assessments. Good death was positively associated with recorded indicators of fullness in life, caregivers' acceptance and support, and negatively with reported feelings of upset about changes in the course of their illness. The results heighten awareness among social workers and other healthcare professionals about the value of good death in patients in palliative care. This empirically-based awareness can foster professionals' ability to set intervention objectives to help patients in palliative care achieve this universally accepted goal.     

A sociocultural analysis of death anxiety among older Japanese urbanites in a citizens' movement

By examining the experiences of death anxiety and attitudes toward personal deaths among members of a citizens' movement, the Grave-Free Promotion Society (GFPS), this study considers the applicability of the view that culture and high self-esteem serve as defenses against death anxiety in Japan's changing society. The GFPS promotes the scattering of ashes over the conventional interment of cremated remains in a family grave. GFPS members often lack descendants to care for a family grave, the neglect of which is thought to endanger the deceased's peaceful rest. By returning the dead to nature through ash scattering, the GFPS provides an alternative strategy of managing its members' posthumous well-being. GFPS members often report that their choice of ash scattering has reduced their anxiety about their personal deaths and improved the quality of their lives. Based upon these findings, this study offers some suggestions for increasing cultural sensitivities of test instruments commonly used to examine death anxiety among older persons for use in a Japanese context.     

Integrated planning for health care organizations, especially hospitals

Planning in health care organizations is of considerable current interest in this country. Furthermore, effective planning processes require, as a necessary condition for that effectiveness, development within a framework which considers the organizational, managerial and service delivery environment.This paper examines the concept of planning in relation to health care organizations. Through an examination of the effects which proper planning can have upon industrial organizations the authors analyze the possible impacts of planning procedures upon health care institutions. Their analysis leads to certain tentative conclusions as to appropriate organizational structure which could support effective planning. Whilst the authors have yet to test their hypothesis the conclusion they draw from their initial analysis are worthy of further investigation.     

Religiosity and preferences for life-prolonging medical treatments in African-American and white elders: a mediation study

Research on end-of-life treatment preferences has documented robust racial differences, with African-Americans preferring more life-prolonging treatment than Whites. Although little research has attempted to explain these racial differences systematically, speculation has centered on religiosity. We examined a dimension of religiosity frequently invoked in end-of-life research-guidance by God's will-as a potential mediator of racial differences in such treatment preferences. Three hundred African-American and White men and women aged 60 or older participated in a 35-minute telephone interview that elicited preferences for four common life-prolonging treatments in each of nine health scenarios. The questionnaire included the five-item God's will (GW) scale, a health conditions checklist, a depression measure, and sociodemographic questions. GW mediated racial differences at least partially for most treatments and in most health scenarios. Implications are discussed for understanding end-of-life treatment preferences and why races tend to differ.     

Capitation and informatics

When physicians, hospitals, and allied health professionals bill for services they render, their information processing requirements are relatively simple, at least compared to those of capitated organizations. When payers (insurers or employers) accept financial risk for the health care services of beneficiaries, they have usually invested in claims processing, membership tracking, and, under managed care, utilization review and provider profiling systems. But payers, for the most part, have not invested in electronic collection of clinical information about beneficiaries, nor have they tended to keep all claims they have processed in electronic form for study after accounts are settled and payments disbursed. In this article, we will explore why informatics is so important to capitated organizations and why payers that have traditionally taken financial risk for insuring the health care costs of populations are also learning about the importance of informatics.     

In-house recruiters: on the inside looking out

Few smaller hospitals or managed care companies have in-house physician recruiting departments. Their low hiring volume simply doesn't support such an operation. But most health systems and large managed care organizations say they literally couldn't afford to be without an internal system for the recruitment of physician executives and other health care professionals. They also claim they can find a better candidate faster than their counterparts on the outside. A number of them explain why.     

Living beyond the unanticipated sudden death of a partner: a phenomenological study

This research project explored grief and its impact upon men and women who have experienced the sudden and unanticipated death of his or her partner. It included what grief meant to them, how it was manifested in his or her everyday lives and how his or her partner's death had impacted upon his or her relationship with themselves, with others and the world. A Husserlian phenomenological approach was used to explore the experiences of the ten women and five men whose partner had died up to five years prior to being interviewed. The need for the surviving partner to continue to participate in everyday life placed great strain upon the internal resources of the surviving partner. The surviving partner needed to reinvent him or herself, in an attempt to become independent and regain functionality, whilst dealing with the sadness and loss that they had experienced. The surviving partner discovered that a new life order emerged that included hope, optimism, planning for the future and perhaps the prospect of a new relationship. The death of a partner left the surviving partner with a loss that would always be a part of them, with the memories of his or her relationship being maintained within them that will never be replaced by somebody else. The results of this research project reinforce the need for ongoing education of the community in grief and bereavement issues in order to increase the awareness of the support needs of the bereaved person. The length of time and amount of energy required to incorporate the experience into the survivor's life, is greatly underestimated by the community, and perhaps by some of the health and caring professionals. Colonial and hospital based bereavement support services need to be established and be proactive using outreach programs, actively offering the suddenly bereaved partner and family support and information.