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.     

African Americans in bereavement: grief as a function of ethnicity

Few empirical studies have explored the grieving process among different ethnic groups within the United States, and very little is known about how African Americans and Caucasians may differ in their experience of loss. The purpose of this study was to examine the African-American experience of grief, with particular emphasis on issues of identity change, interpersonal dimensions of the loss, and continuing attachments with the deceased. Participants were 1,581 bereaved college students (940 Caucasians and 641 African Americans) attending classes at a large southern university. Each participant completed the Inventory of Complicated Grief-Revised, the Continuing Bonds Scale, and questions regarding the circumstances surrounding his or her loss. Results revealed that African Americans experienced more frequent bereavement by homicide, maintenance of a stronger continuing bond with the deceased, greater grief for the loss of extended kin beyond the immediate family, and a sense of support in their grief, despite their tendency to talk less with others about the loss or seek professional support for it. Overall, African Americans reported higher levels of complicated grief symptoms than Caucasians, especially when they spent less time speaking to others about their loss experience. Implications of these findings for bereavement support services for African Americans were briefly noted.     

Change in depression of spousal caregivers of dementia patients following patient's death

Caring for an elderly spouse with dementia places a heavy burden on spousal caregivers and often results in chronic depression. Little has been written about change in depression caregivers experience from before to after the death of the spouse with dementia. This longitudinal study examines change in depression of spousal caregivers that occurs following death of the dementia patient. Two theoretical models, the Relief and Stress Models, are discussed in terms of caregiver depression after the death of the dementia-patient care-recipient spouse. These two theoretical models were tested using longitudinal data from the National Institute on Aging sponsored Health and Retirement Study. Both male and female spousal caregivers report an increase in depression after the death of the dementia-patient care-recipient spouse. As time passed following the spouse's death, the conjugally bereaved husbands showed a decrease in depression while the conjugally bereaved wives continued to report increased depression.     

Qualitative differences in men and women police officers' experience of occupational stress

Gender differences in exposure to sources of occupational stress and experience of adverse consequences are explored in a study of 358 male and 139 female police constables engaged in uniformed patrol or detective duties from one large provincial English police force. Stressors were divided into those arising tiom police operational duties and those deriving tioni organizational and management issues. Women uniformed constables are less likely to be exposed to police operational stresson involving the potential for violence, but ifexposed they report more severe adverse reactions than uniformed policemen. Women unifomied officers and women detectives are more likely to be involved with victims ofviolence or sexual offences and the former report higher levels ofassociated self-perceived stress than their male counterparts. There are relatively few differences in exposure to organizational stressors except that women detectives and uniformed officers report higher rates of sex discrimination and prejudice than policemen. Multivariate analyses show gender and occupational role differences in qualitative features that contribute to reported psychologal distress. Results are discussed in terms of possible explanations for gender differences.     

Introducing the 3-A grief intervention model for dementia caregivers: acknowledge, assess and assist

With our aging population, it is estimated that in the near future there will be an overwhelming increase in the number of individuals dealing with Alzheimer's disease or a related dementia (ADRD). From the time that symptoms begin to insidiously emerge, it can take well over ten years for the disease to run its course. In addition to the crippling effect for those inflicted, this lengthy duration can have an ongoing debilitating effect on the family members who are grieving while providing care. Researchers have claimed that the manner in which family members experience and manage their grief reactions to the pre-death losses can influence both caregiving outcomes and adjustment to bereavement once those with the disease have died. Given the relevance of grief management, this article provides answers to such questions as: How do family caregivers of individuals with ADRD manifest their grief? How can healthcare professionals intervene in assisting with grief management? The answers are provided introducing the 3-A grief intervention model for family caregivers of individuals with ADRD. The 3-A model enfranchises the caregiver grief experience through Acknowledging, Assessing, and Assisting in grief management. In doing so, different grieving styles are identified and the role that denial and respite plays in adapting to the family caregiver's grief experience is recognized. Clinical strategies to assist in grief management are also provided.     

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.     

Deathbed visions from India: a study of family observations in northern Kerala

This is an interview-based study of 104 families and their observations of the last weeks and days of a dying family member. Forty families reported "unusual experiences and behaviors" from the dying person in their last period of life. Thirty of these dying persons displayed behavior consistent with deathbed visions-interacting or speaking with deceased relatives, mostly their dead parents. There were six cases of reported premonitions of death and five possible confusional states with one patient reported to have had both a deathbed vision and confusional experiences. Socio-demographic factors such as gender, age, occupation, or cause and place of death were not found to be significant. Hindu patients appeared to be more likely than Muslim patients to report these experiences. Use of opiates (or not) did not appear to influence reports. The findings are discussed with reference to past studies of deathbed visions as well as their implications for the future pastoral care of dying people and their families.     

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.     

Stress,Task, and Relationship Orientations of Dutch: Do Age,Gender, Education,and Government Work Experience Make a Difference?

Working people are often socialized differently based on their age, gender, education, and work experience in the public versus the private sector. To explore the stress, task, and relationship orientations of people in the culture of the Netherlands, this study focused on the differences of 208 Dutch respondents based on the demographic variables. It appears that they have dissimilar scores on the relationship and task orientations. Age, government work experience and education do appear to be a significant factor in their leadership orientation. Also, males seem to be less task-oriented and less relationship-oriented than their female counterparts. Overall, the Dutch respondents reported a moderate level of stress with no gender differences.     

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.     

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.     

Planning end-of-life care for patients with dementia: roles of families and health professionals

We examined families' end-of-life decision making and their interactions with health professionals. Twenty-eight family members of institutionalized dementia patients participated in four focus groups. We found that participating family members were not well prepared for their decision-making roles, and that they: 1) experienced substantial burdens and loss in caring for institutionalized elders; 2) had limited understanding of the natural progression of dementing conditions; 3) were uncomfortable in setting goals for their relatives' end-of-life care; 4) had little experience with death, and were ambivalent about the anticipated death of their relative; and (5) reported that they had little substantive communication with health professionals regarding end-of-life care planning. We concluded that many of the needs of such families could be addressed through improved application of the principles of advance care planning, including regular structured discussions, involvement of surrogate decision-makers, and anticipation of clinical decisions. Health professionals should take the lead in 'normalizing' the discussion of death.     

Exploring death anxiety among elderly people: a literature review and empirical investigation

Given the growing number of elderly persons in society and concerns about their health and well-being, the aim was to review the available literature on their death anxiety, and to explore features of this experience among a small sample of older men and women in care facilities. In both the review and empirical parts of this study, components and correlates of death anxiety were investigated. The review revealed limited research focus on death anxiety among the elderly, particularly among those in institutions, but suggested both components and correlates for inclusion in our empirical study. Results showed that, among our elderly participants in an assisted living facility (N = 49; age range: 60-96 years), there were higher levels of fear for others and of the dying process than for fear of the unknown. Notably, among the correlates identified, fear for significant others was associated with poor physical health; fear of the dying process was related to low self-esteem, little purpose in life, and poor mental well-being. Gender differences in death anxiety were found: women showed greater fear for the death of loved ones and for the consequences of their own death on these loved ones, than did men. These patterns are discussed in the light of concerns about the welfare of elderly persons; scientific implications are also considered.     

Believing is seeing

Useful, well-demonstrated, well-vetted ideas in clinical practice, disease management, health care management, ideas that would save lives, save money, and make life better for the patient, are sometimes simply ignored, dismissed as radical, as completely unfounded, dangerous, and without merit. Why are new ideas so slow to spread in medicine and health care? Because believing is seeing. We do not look for something we don't believe in. In fact, we do not even see a thing if we don't believe in it. We have dedicated ourselves so powerfully to medicine, to health care as we know it, that we often do not even see any alternatives. A combination of factors makes it likely that, in the coming decade or two, we will change almost everything that is fundamental about health care and medicine. In a time of such rapid change, we desperately need to root out and question our deep assumptions and beliefs, to get off the tracks laid down by training and experience and ask questions we have never asked before.     

Alternative futures in tourism

There is an often quoted common scenario for tourism, predicated upon increased disposable income and leisure time with low travel and accommodation costs. This article disputes the possibility of low costs in the long term and, more importantly, disputes many of the sociological and psychological bases of the common scenario and its ‘lemming hypothesis’. Leisure activities and tourism is likely to shift away from compensating for gaps in the quality of day-to-day life towards a more complementary role: strengthening personal relationships, pursuing existing relationships, deepening ethnic identities, etc.     

Beyond death: inheriting the past and giving to the future, transmitting the legacy of one's self

This study explores the phenomenon of legacy as a component of the aging experience among women. Against a backdrop of prior focus on transmission of material possessions as the primary form of legacy, the concept is critically examined in developing an expanded, theoretically and empirically grounded perspective. In-depth interviews with 38 women, ranging in age from 31 to 94 and representing diverse marital, parental, and health statuses, reveal multiple dimensions of leaving a legacy in terms of content, creation, and transmission. Through the stories of the participants in this study, legacy emerges as a means of passing on the essence of one's self, in particular one's values and beliefs. Legacy is a method of leaving something behind after death and making meaning of the end of life. The desire to leave a legacy is manifest in many different ways dependent on the individual and their culture. While the idea of legacy is often couched in terms of material possessions, it appears that passing on values and beliefs is more important to older adults.     

Personifications of personal and typical death as related to death attitudes

The present article examined differences in personifications of personal and typical death as a function of attitudes about death. Ninety-eight students enrolled in psychology classes were randomly assigned to personify death as a character in a movie depicting either their own deathbed scene or the deathbed scene of the typical person prior to completing the Death Attitude Profile-Revised. The results supported the conceptual distinction between attitudes about personal death and death in general. Participants in the personal death condition personified death more frequently as a gentle-comforting image and less frequently as a cold-remote image than did participants in the typical death condition. The results also further validated the relation between personifications of death and death attitudes. Across both conditions, participants who selected the grim-terrifying image reported more fear of death and death avoidance; whereas, participants who selected the cold-remote or robot-like images reported more neutral acceptance.     

Quality insights of university students on dying, death, and death education--a preliminary study in Hong Kong

Death is a subject seldom studied in school and often misunderstood and feared by many people. Children often learn about death from their family and mass media. From the literature review on dying, death, and death education, it may be concluded that people are generally ignorant about the issues of death and dying. There is a need to investigate what young people, such as university students, know about death and dying, and their attitudes toward them. Eight university students were recruited for this study. Most participants have had death experiences. They seldom talked about death and loss. Some of these experiences were quite pleasant but some of them were not. Most participants addressed the need to have "life and death" education in schools at their young age. Such a need is further supported by the incidents of two participants who attempted suicide unsuccessfully when they encountered a life problem which they could not solve.     

The single-staff model for bone marrow transplantation

This paper will demonstrate the advantages of pursuing an integrated model of care that utilizes one staff of caregivers in one facility for all phases of patient care from the time of patient evaluation through the time the patient returns to the care of his or her primary physician. We took the opportunity afforded by the development of a new program at the University of Alabama at Birmingham, the Bone Marrow Transplantation (BMT) Program, to reconsider as many variables as possible in an attempt to develop a model of care that would represent the best of all worlds, i.e., high levels of quality of care, quality of life, staff job enrichment, patient convenience, operational efficiency, and cost reduction.