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Preparing Family Members for the Death of Their Loved One With Cancer

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Abstract

This review of literature describes recently published research on preparing family members for the death of their loved one with advanced cancer and discusses directions for further research. A search was conducted among 5 electronic databases. A total of 18 articles published between January 2000 and September 2011 were identified and included in this review. The literature revealed that the current trends of research are to study (1) the awareness of family members of the impending death of their loved one and (2) the 4 dimensions of preparedness. Comprehensive studies needed are to explore family members' preparation for the death of their loved one with advanced cancer, including the awareness and time frame of family members for the death of a loved one; their preparedness including medical, psychosocial, spiritual, and practical dimensions; and communication and support received from healthcare professionals. Expanding understanding of preparing family members for the death will enable healthcare professionals to develop innovative interventions to improve family members' preparation for the death of their loved one and to ease their bereavement.

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... Many related caregivers of people with cancer experience burnout and caregiver fatigue (17), with levels of psychological distress equal to or often even greater than those seen in the patient (18). The caregiver can experience stress related to disease and treatment cycles that accumulates over time towards an increased risk for illness and psychological morbidity (19), owing to medical (e.g., the unknown regarding diagnosis, prognosis, and clinical course), practical (e.g., financial planning), psychosocial (e.g., resolving family conflict) and spiritual/religious uncertainty (20,21). Unfortunately, supportive care interventions for those affected but not diagnosed with cancer are lacking despite a reduced ability to partake in self-care behaviors (22,23). ...
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The field of cancer survivorship has significantly advanced person-centered care throughout the cancer continuum. Within cancer survivorship, the last decade has seen remarkable growth in the investigation of prehabilitation comprising pre-treatment interventions to prevent or attenuate the burden of oncologic therapies. While the majority of evidence remains in the surgical setting, prehabilitation is being adapted to target modifiable risk factors that predict poor treatment outcomes in patients receiving other systemic and localized anti-tumor treatments. Here, we propose a multiphasic approach for prehabilitation across the cancer continuum, as a conceptual framework, to encompass the variability in cancer treatment experiences while adopting the most inclusive definition of the cancer survivor.
... Issues were also expressed that family members had not been able to raise before. It has been emphasized that effective communication between family members and healthcare providers is essential in managing uncertainty (Sodowsky, 2012) and allowing the opportunity to prepare for the impending loss (Loke, Li, & Man, 2013). ...
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Aims To evaluate the effectiveness of a two‐session multicomponent family strengths‐ oriented therapeutic conversation intervention among family caregivers of an individual with advanced/final stage cancer during ongoing palliative home‐care. Background Family caregivers of patients in the advanced/final phases of cancer, experience multifaceted psychological distress and morbidity. Psychosocial interventions improve the well‐being of family members who are caring for their close relative. Design A pre‐experimental design with a one‐group pre‐test/posttests measurements. Methods Forty‐eight family caregivers were assigned to receive two 60‐90 min sessions of the intervention. The primary outcome was perceived emotional and cognitive support and psychological well‐being, measured at baseline (T1). Then the participants were offered the first session of the intervention. About one week later, the second session was administered. The participants answered the same questionnaires again (T2) and then 2‐4 weeks later (T3). The guideline; Criteria for Reporting Development and Evaluation of Complex Interventions 2, guided the reporting of the study. Results Family caregivers reported significantly higher emotional and cognitive support post‐intervention (T2) and (T3). They also reported significantly reduced stress symptoms at (T3) and reduced caregiver burden post‐intervention (T2) and at (T3). Conclusion The provision of the intervention contributed to extending knowledge about the usefulness of family conversations in the context of advanced/final stage cancer care. Impact There is a lack of knowledge regarding the benefit of therapeutic conversations interventions for family caregivers. The therapeutic conversation intervention offered, resulted in perceived support, decreased stress and decreased caregiving demands among caregivers in palliative home‐care. This article is protected by copyright. All rights reserved.
... Glaser and Strauss's term open awareness characterizes a situation where the imminence of death is accepted and openly talked about in communication between the patient, the family and health-care personnel (Glaser & Strauss, 1965;Timmermans, 1994 (HOD, 2010;Official Norwegian Report, 2017). Open communication among patients, their relatives and health-care professionals is critical to accommodate and support relatives (Hadders, Paulsen, & Fougner, 2013;Loke, Quiping, & Leung, 2013;Masson, 2002;Mossin & Landmark, 2011). Nevertheless, health-care personnel often are reluctant to give conclusive information of the imminence of death to the patient and the patient's relatives. ...
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Aim The aim of this study was to explore any differences between nurses working in nursing home and home‐based care in their experiences regarding relatives' ability to accept the imminence of death and relatives' ability to reach agreement when deciding on behalf of patients unable to consent. Design An electronic questionnaire‐based cross‐sectional study. Method An electronically distributed survey to 884 nurses in long‐term care in Norway in May 2014. A total of 399 nurses responded (45%), of which 197 worked in nursing homes and 202 in home‐based care. Results Nurses in home‐based care, more often than their colleagues in nursing homes, experienced that relatives had difficulties in accepting that patients were dying. Nurses who often felt insecure about whether life extension was in consistency with patients' wishes and nurses who talked most about life‐prolonging medical treatment in communication with relatives more often experienced that relatives being reluctant to accept a poor prognosis and disagreements between relatives in their role as proxy decision makers for the patient.
... It is therefore important that families are given opportunity and choice about how to say 'goodbye' to the family member with guidance about predictability or unpredictability about time to death. Whilst personalizing care works to create rituals and legacies at the bedside during the dying process [19], doctors and nurses need to be aware of situations where family needs cannot or are unable to be met. As such situations can leave negative memories about the terminal events with family members, it is important that doctors and nurses address any such deficits using effective, structured and honest communication approaches as documented in the literature [7]. ...
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Background When patients are likely to die in the coming hours or days, families often want prognostic information. Prognostic uncertainty and a lack of end-of-life communication training make these conversations challenging. Aim The objective of this study is to understand how clinicians and the relatives/friends of patients at the very end of life manage uncertainty and reference time in prognostic conversations. Design Conversation analysis of audio-recorded conversations between clinicians and the relatives/friends of hospice inpatients. Setting/participants Experienced palliative care clinicians and relatives/friends of imminently dying hospice inpatients. Twenty-three recorded conversations involved prognostic talk and were included in the analysis. Results Requests for prognostic information were initiated by families in the majority of conversations. Clinicians responded using categorical time references such as ‘days’, allowing the provision of prognostic estimates without giving a precise time. Explicit terms such as ‘dying’ were rare during prognostic discussions. Instead, references to time were understood as relating to prognosis. Relatives displayed their awareness of prognostic uncertainty when requesting prognostic information, providing clinicians with ‘permission’ to be uncertain. In response, clinicians often stated their uncertainty explicitly, but presented evidence for their prognostic estimates, based on changes to the patient’s function previously discussed with the family. Conclusion Prognostic uncertainty was managed collaboratively by clinicians and families. Clinicians were able to provide prognostic estimates while being honest about the related uncertainty, in part because relatives displayed their awareness of uncertainty within their requests. The conversation analytic method identified contributions of both clinicians and families, and identified strategies based on real interactions, which could inform communication training.
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Background: Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals. Methods: Relatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate). Results: The majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support. Conclusions: This research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative's priorities for EoLC in acute hospitals and can advance care providers', policy makers' and educationalists' priorities for service improvement.
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The purpose of this study is to determine family caregivers’ recommendations for professional health care professionals on how to help prepare them for the death of an elder with dementia. Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Three primary themes emerged: (a) Educate Caregivers, (b) Lead Caregivers, and (c) Provide a Caring and Compassionate Presence. The results highlight the importance of various health care professionals’ roles in preparing family caregivers for a death. In doing so, both the dying and their caregivers may have a better end-of-life experience with improved bereavement outcomes.
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AimThe aim of this study was to conduct an integrative review on how nurses prepare families for and support families during withdrawal of life-sustaining treatments in intensive care. Background End-of-life care is widely acknowledged as integral to the practice of intensive care. However, little is known about what happens after the decision to withdraw life-sustaining treatments has been made and how families are prepared for death and the dying process. DesignIntegrative literature review. Data sourcesMEDLINE, CINAHL Plus, PsychINFO, PUBMED, Scopus, EMBASE and Web of Knowledge were searched for papers published between 2000-May 2015. Review methodsA five stage review process, informed by Whittemore and Knafl's methodology was conducted. All papers were reviewed and quality assessment performed. Data were extracted, organized and analysed. Convergent qualitative thematic synthesis was used. ResultsFrom an identified 479 papers, 24 papers were included in this review with a range of research approaches: qualitative (n=15); quantitative (n=4); mixed methods (n=2); case study (n=2) and discourse analysis (n=1). Thematic analysis revealed the nurses: equipped families for end of life through information provision and communication; managed the withdrawal of life-sustaining treatments to meet family need; and continued care to build memories. Conclusion Greater understanding is needed of the language that can be used with families to describe death and dying in intensive care. Clearer conceptualization of the relationship between the medically focussed withdrawal of life-sustaining treatments and patient/family-centred end-of-life care is required making the nursing contribution at this time more visible.
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This study examined the challenges faced by family members at the end of life in different care settings and how those challenges compare across settings. A total of 30 participants, who had a family member die in inpatient hospice, a skilled nursing facility or a community support program were interviewed. Semi-structured interviews were recorded and transcribed. Text was coded using qualitative thematic analysis. Themes were determined by consensus. Twelve challenges were identified across care sites. Two themes emerged in all three settings: bearing witness and the experience of loss. The study findings contribute to our knowledge of family perceptions of care in different settings and raises awareness of the need for further research describing the experiences at the end of life in different settings and the importance of creating and testing interventions for both setting specific needs and universal issues.
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To present opinions of recently bereaved persons regarding how they could have been made to feel more prepared for the death of a loved one. Cross-sectional descriptive study that uses information from a longitudinal study. A face-to-face interview was administered to 122 recently bereaved persons and participants were asked to provide opinions and to describe whether health professionals, family/friends, or themselves could have helped them to feel more prepared for the death. Of the total sample of 122, 31 (25%) reported that doctors or health professionals could have done something more to help make them feel better prepared for the death of their loved-one. Six subjects (4.9%) indicated family/friends, and 16 (13.1%) stated that they themselves could have done something more to help prepare for the death of their loved-one. Common themes were: the physicians' lack of communication regarding the prognosis and imminence of death, family survivors' concerns about the medical care provided, regrets engendered by their own denial of the patient's imminent death, not managing the illness in a manner consistent with the patient's impending death, and lost opportunities for closure in family matters, both financial and interpersonal. Findings from this study can be used to enhance understanding of bereaved persons' views about health professionals' current practices for bereaved individuals, as well as the role of the family and the bereaved persons themselves in potentially effecting preparedness for the death of a loved one.
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Uncertainty is an important part of the illness experience. Mishel elaborated a theory of uncertainty in acute illness and later expanded the framework to account for uncertainty in chronic illness. Researchers subsequently have investigated the causes and outcomes associated with the uncertainty in illness experience across a variety of medical conditions. The current study applies and extends Mishel's model within the context of HIV illness-related uncertainty. In this qualitative study, focus group methods were used to examine the nature of illness uncertainty experienced by persons living with HIV or AIDS. Findings confirm Mishel's contention that the causes of uncertainty extend beyond those of medical diagnosis, treatment, and recovery to personal and social aspects of daily life. Identified sources of uncertainty may have important mental health and quality of life implications.
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Over the past century, nursing homes and hospitals increasingly have become the site of death, yet no national studies have examined the adequacy or quality of end-of-life care in institutional settings compared with deaths at home. To evaluate the US dying experience at home and in institutional settings. Mortality follow-back survey of family members or other knowledgeable informants representing 1578 decedents, with a 2-stage probability sample used to estimate end-of-life care outcomes for 1.97 million deaths from chronic illness in the United States in 2000. Informants were asked via telephone about the patient's experience at the last place of care at which the patient spent more than 48 hours. Patient- and family-centered end-of-life care outcomes, including whether health care workers (1) provided the desired physical comfort and emotional support to the dying person, (2) supported shared decision making, (3) treated the dying person with respect, (4) attended to the emotional needs of the family, and (5) provided coordinated care. For 1059 of 1578 decedents (67.1%), the last place of care was an institution. Of 519 (32.9%) patients dying at home represented by this sample, 198 (38.2%) did not receive nursing services; 65 (12.5%) had home nursing services, and 256 (49.3%) had home hospice services. About one quarter of all patients with pain or dyspnea did not receive adequate treatment, and one quarter reported concerns with physician communication. More than one third of respondents cared for by a home health agency, nursing home, or hospital reported insufficient emotional support for the patient and/or 1 or more concerns with family emotional support, compared with about one fifth of those receiving home hospice services. Nursing home residents were less likely than those cared for in a hospital or by home hospice services to always have been treated with respect at the end of life (68.2% vs 79.6% and 96.2%, respectively). Family members of patients receiving hospice services were more satisfied with overall quality of care: 70.7% rated care as "excellent" compared with less than 50% of those dying in an institutional setting or with home health services (P<.001). Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect. Family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience.
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We investigated the predictors and long-term consequences of awareness time - the length of time a woman is aware of her husband's impending death from cancer. All women (n = 506) living in Sweden under 80 years of age who lost their husband/partner owing to cancer of the prostate in 1996 or of the urinary bladder in 1995 or 1996 were followed with an anonymous postal questionnaire, 2-4 years after their loss. We received completed questionnaires from 379 of the widows. Of these, 55 (15%) reported an awareness time of 24 hours or less, 56 (15%) of 3-6 months and 95 (26%) of one year or more. The associations between the awareness time and morbidity were of a reverted 'J-shape,' with awareness time of 24 hours or less carrying the highest risk and 3-6/6-12 months the lowest. On comparing the awareness time of 24 hours or less with 3-6 months (preformed response category), the relative risks for anxiety were found to be 1.9. (1.0-3.6) (visual digital scale) and 4.5 (1.0-20.0) for intake of tranquillising drugs. Those not informed of their husband's fatal condition or not provided with psychological support by caregivers during their husband's last months of life had an increased risk of a short awareness time. During a man's terminal cancer illness, the wife's awareness time varies considerably and is influenced by information and psychological support from caregivers. A short awareness time may result in an additional and avoidable psychological trauma.
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Family caregivers play an essential role, usually unpaid, in caring for patients with cancer. Most older patients with cancer are cared for by a family member, who may not be prepared for the challenges. The needs of older patients are diverse and may include assistance with medication, transportation for treatment, activities of daily living, and emotional support. The activities that caregivers find most stressful include helping patients with their self-care, managing their treatment and symptoms, and dealing with the suffering of a family member. Families may be affected by other stressors, such as changes in roles and employment and disruptions in schedules (eg, frequent clinic visits). Caregivers respond to these stressors differently; older spouses may be particularly vulnerable because of their own frailty. There can also be negative effects on caregivers' psychological, social, or physical health functioning. Social and economic deficits due to caregiving may include lifestyle disruption, less socializing, and greater out-of-pocket and lost productivity costs. Studies have shown, however, that caring for an older person with cancer also has rewards, such as satisfaction and a greater sense of self-worth. The negative aspects of caregiving can be lessened by psychological support and assistance in problem solving from healthcare professionals. Caregivers should also be provided with options to reduce the stress of frequent clinic visits, such as using long-acting growth factors or telephone triage. Educating caregivers on pertinent aspects of cancer management and the community resources available to them can be done through individual contact with health professionals or through more-formal educational programs.
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The illness of a spouse can affect the health of a caregiving partner. We examined the association between the hospitalization of a spouse and a partner's risk of death among elderly people. We studied 518,240 couples who were enrolled in Medicare in 1993. We used Cox regression analysis and fixed-effects (case-time-control) methods to assess hospitalizations and deaths during nine years of follow-up. Overall, 383,480 husbands (74 percent) and 347,269 wives (67 percent) were hospitalized at least once, and 252,557 husbands (49 percent) and 156,004 wives (30 percent) died. Mortality after the hospitalization of a spouse varied according to the spouse's diagnosis. Among men, 6.4 percent died within a year after a spouse's hospitalization for colon cancer, 6.9 percent after a spouse's hospitalization for stroke, 7.5 percent after a spouse's hospitalization for psychiatric disease, and 8.6 percent after a spouse's hospitalization for dementia. Among women, 3.0 percent died within a year after a spouse's hospitalization for colon cancer, 3.7 percent after a spouse's hospitalization for stroke, 5.7 percent after a spouse's hospitalization for psychiatric disease, and 5.0 percent after a spouse's hospitalization for dementia. After adjustment for measured covariates, the risk of death for men was not significantly higher after a spouse's hospitalization for colon cancer (hazard ratio, 1.02; 95 percent confidence interval, 0.95 to 1.09) but was higher after hospitalization for stroke (hazard ratio, 1.06; 95 percent confidence interval, 1.03 to 1.09), congestive heart failure (hazard ratio, 1.12; 95 percent confidence interval, 1.07 to 1.16), hip fracture (hazard ratio, 1.15; 95 percent confidence interval, 1.11 to 1.18), psychiatric disease (hazard ratio, 1.19; 95 percent confidence interval, 1.12 to 1.26), or dementia (hazard ratio, 1.22; 95 percent confidence interval, 1.12 to 1.32). For women, the various risks of death after a spouse's hospitalization were similar. Overall, for men, the risk of death associated with a spouse's hospitalization was 22 percent of that associated with a spouse's death (95 percent confidence interval, 17 to 27 percent); for women, the risk was 16 percent of that associated with death (95 percent confidence interval, 8 to 24 percent). Among elderly people hospitalization of a spouse is associated with an increased risk of death, and the effect of the illness of a spouse varies among diagnoses. Such interpersonal health effects have clinical and policy implications for the care of patients and their families.
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In an exploratory, phenomenological study of seven Chinese widows in Hong Kong, five major themes are identified: relationship with the deceased, relationship with others, grief reactions, coping and emotional expression. This paper focuses on the first theme: the widows' relationship with the deceased husband along a timeline from the time of diagnosis to after death. The experiences in the final days with the deceased were frequently referred to when the informants talked about this theme. This paper aims to give added voice, based on the experience of Chinese widows, to the possible role of hospice and palliative care on influencing the bereavement experience. Issues of awareness and acceptance of death, the supportive environment and support for family carers, the moment of death, creation of legacies, and sensitivity towards cultural embedded practices, are discussed. It is hoped that the experiences of these bereaved widows will stimulate new research to elucidate and verify the findings reported in this paper.
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True acceptance of death can give patients and their family members a sense of peace and bliss. Adequate discussion of funeral arrangements and a review of life achievements can instil calmness, a sense of appreciation and fulfillment, and the feeling of having lived a worthwhile life. As death is part of living, we can educate ourselves about death in order to live full lives.3 Befriend death and do not avoid the pain of bereavement, as it is a catalyst for spiritual growth. Growth through death and bereavement often leads to a greater appreciation of life, to greater love of others, to greater appreciation for the beauty of simplicity, to a deep engagement with nature and its creator, and to transcendence into a dignified, honourable human being who has a broad mind replete with unlimited compassion and accommodation for differences. More on the growth that can be discovered through the death, dying and bereavement process can be found in subsequent chapters.
Article
Context A clear understanding of what patients, families, and health care practitioners view as important at the end of life is integral to the success of improving care of dying patients. Empirical evidence defining such factors, however, is lacking. Objective To determine the factors considered important at the end of life by patients, their families, physicians, and other care providers. Design and Setting Cross-sectional, stratified random national survey conducted in March-August 1999. Participants Seriously ill patients (n = 340), recently bereaved family (n = 332), physicians (n = 361), and other care providers (nurses, social workers, chaplains, and hospice volunteers; n = 429). Main Outcome Measures Importance of 44 attributes of quality at the end of life (5-point scale) and rankings of 9 major attributes, compared in the 4 groups. Results Twenty-six items consistently were rated as being important (>70% responding that item is important) across all 4 groups, including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a "whole person." Eight items received strong importance ratings from patients but less from physicians (P<.001), including being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God. Ten items had broad variation within as well as among the 4 groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Participants ranked freedom from pain most important and dying at home least important among 9 major attributes. Conclusions Although pain and symptom management, communication with one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at the end of life differ by role and by individual. Efforts to evaluate and improve patients' and families' experiences at the end of life must account for diverse perceptions of quality.
Article
Over a 4-month period, we convened 12 focus groups, each of which had an average of 6 participants. A full spectrum of persons involved with end-of-life care—physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members—were included (Table 1) (12). Groups were stratified by role. Participants were recruited from Duke University Medical Center, Durham Veterans Affairs Medical Center, and a local community hospice in Durham, North Carolina. Nonphysician providers were recruited from convenience samples generated by e-mail and departmental advertising. Physicians were recruited from the attending staff of the Duke University Medical Center, Department of Medicine. We stratified physicians by level of appointment (assistant, associate, or full professor), randomized the lists, and recruited potential participants in order, ensuring that the final group represented each career level. Patients were recruited by telephone from an ethnically stratified sample enrolled in oncology and HIV clinics. Family members were recruited from a stratified random sample of recently bereaved relatives of Veterans Affairs patients who had died 6 months to 1 year earlier. For each group, we continued to call potential participants until we obtained 6 to 8 participants per group. Focus groups and interviews were audiotaped and transcribed. We did not use quantitative methods of inter-rater agreement. Instead, we followed a grounded theory approach with a “constant comparisons” method and its related open and axial coding techniques (10–11). During open coding, four investigators independently read an example of a transcript and analyzed it for common and recurrent themes pertaining to qualities of a good death. These summaries were compared for theme agreement and disagreement. One coder used qualitative software (NUDIST, Scolari Sage Publications Software, Thousand Oaks, California) to apply the coding scheme to the remaining transcripts. Throughout the coding process, all four investigators reviewed theme exemplars as a check on coding validity. During axial coding, the investigators developed further conceptual domains by comparing themes within and between transcripts (11). After identifying more than 70 attributes, we collapsed the full list into 6 broad domains. Although the 6 themes are presented as conceptually distinct, attributes overlapped between domains. For example, attention to spiritual concerns may be primarily associated with a process of “completion” but may also affect patients' physical pain.
Article
A reliable and valid measure of the quality of the dying experience would help clinicians and researchers improve care for dying patients. To describe the validity of an instrument assessing the quality of dying and death using the perspective of family members after death and to identify clinical correlates of a high quality death, a retrospective cohort study evaluated the 31-item Quality of Dying and Death (QODD) questionnaire. The questionnaire was administered to family members of patients who died in Missoula county Montana in 1996 and 1997. The interview included questions assessing symptoms, patient preferences, and satisfaction with care. Measurement validity was examined for item and total scores and reliability analyses for the QODD total score were assessed. Construct validity was assessed using measures of concepts hypothesized to be associated with the quality of dying and death. There were 935 deaths, of which 252 (27.0%) family interviews were represented. Non-enrolled decedents were not significantly different from enrolled decedents on age, sex, cause of death, or location of death. We excluded sudden deaths (n = 45) and decedents under age 18 (n = 2), leaving 205 after-death interviews. A total QODD score, on a scale from 0 to 100 with higher scores indicating better quality, ranged from 26.0 to 99.6, with a mean of 67.4 and Cronbach's alpha of 0.89. The total QODD score was not associated with patient age, sex, education, marital status, or income. As hypothesized, higher QODD scores were significantly associated with death at home (P < 0.01), death in the location the patient desired (P < 0.01), lower symptom burden (P < 0.001), and better ratings of symptom treatment (P< 0.01). Although the total score was not associated with the presence of an advance directive, higher scores were associated with communication about treatment preferences (P < 0.01), compliance with treatment preferences (P < 0.001), and family satisfaction regarding communication with the health care team (P < 0.01). Availability of a health care team member at night or on weekends was also associated with a higher QODD score (P < 0.001). The QODD total score demonstrated good cross-sectional validity. Clinicians caring for dying patients should focus on improving communication with the patient and family and improving symptom assessment and treatment. Health care teams should focus on continuity of care, including having a team member familiar with the patient available for calls at nights and on weekends. Future work will assess the potential role of the QODD in improving the quality of the dying experience.
Article
To examine patients', families', and health care providers' preferences regarding preparation for the end of life, attributes of preparation were generated in qualitative focus group discussions and subsequently tested for generalizability in a quantitative national survey. Respondents from all groups showed consensus on the importance of naming someone to make decisions, knowing what to expect about one's physical condition, having financial affairs in order, having treatment preferences in writing, and knowing that one's physician is comfortable talking about death and dying. Patients were more likely than physicians to want to plan funerals and know the timing of death and less likely than all other groups to want to discuss personal fears. Participants in care of dying patients agree overwhelmingly with the importance of preparation. However, significant barriers to preparation impede it from being a common part of clinical encounters. Further research and training are needed to ensure that the desire for greater preparation is translated into improved action toward preparation in medical practice.
Article
The case story of a 47-year-old man with advanced rectal carcinoma illustrates the professional services and care system strategies available to help clinicians serve patients coming to the end of life. For this patient, who understands his prognosis, primary care physician services include (1) prevention and relief of symptoms, (2) assessment of each treatment before and during implementation, (3) ensuring that the patient designates a surrogate decision-maker and makes advance plans, and (4) preparation of patient and family for the time near death. Good care may entail enduring unavoidably difficult times with patients and their families.Enrollment in a hospice program requires that decision-makers confront the prognosis and their uncertainties about it, consider the desirability of other services, recognize variations among available hospice programs, address financial issues, and weigh the distress of patients and loved ones at being labeled as "dying." Hospice provides competent, continuous, and reasonably comprehensive care, but it has some constraints.Function and symptoms for those living with serious chronic illness at the end of life generally follow 1 of 3 trajectories: (a) a short period of obvious decline at the end, which is typical of cancer; (b) long-term disability, with periodic exacerbations, and unpredictable timing of death, which characterizes dying with chronic organ system failures; or (c) self-care deficits and a slowly dwindling course to death, which usually results from frailty or dementia. Effective and reliable care for persons coming to the end of life will require changes in the organization and financing of care to match these trajectories, as well as compassionate and skillful clinicians.
Article
This essay extends problematic integration theory and related theories of uncertainty management to communication about serious illness and death. These extensions (a) note that theorizing must focus on multiple, interrelated uncertainties rather than a single such uncertainty; (b) explain how communication with others often problematizes efforts to cope with illness-related uncertainties; and (c) identify specific factors that may influence how persons choose to cope with these uncertainties. The essay describes implications for ongoing efforts to improve communication with persons nearing death. Specifically, they point to 5 incorrect assumptions that limit the effectiveness of current efforts to encourage persons to talk about their end-of-life preferences with others in a process referred to as advance care planning and then suggest concrete changes derived from this framework that can improve the advance care planning process and enhance the quality of end-of- life care.
Article
The fundamental challenge for refining theories of communication and uncertainty is to abandon the assumption that uncertainty will produce anxiety. To better explain processes of communication and uncertainty management, we must answer questions about (a) the experience and meaning of uncertainty, (b) the role of appraisal and emotion in uncertainty management, and (c) the range of behavioral and psychological responses to uncertainty. This paper outlines and extends a theory of uncertainty management and reviews current theory and research in this area. In addition to the theoretical advances promised by this perspective, the paper describes applications to health communication practice. The drive in disease prevention to reduce uncertainty about the state of health and illness has led to a “culture of chronic illness.” Constant surveillance of people's health, combined with improved methods for screening and monitoring, virtually guarantee finding something wrong with every person, creating a society divided into the chronically ill and the worried well (i.e., those waiting to be diagnosed).
Article
Caregiving at Life's End (CGLE) is a program for family caregivers caring for someone during the last years of life that focuses on the emotional, spiritual, and practical aspects of life and relationship completion and closure. This study evaluated the effectiveness of CGLE in improving three major outcomes: comfort with caregiving, closure, and caregiver gain. Family caregivers (n=2,025) participated in programs facilitated by health and human service professionals (n=142) who completed a CGLE train-the-trainer workshop conducted by The Hospice Institute of the Florida Suncoast. The caregivers completed training rosters and pre- and/or post-surveys. Group differences are reported in baseline characteristics and change in three outcomes for caregivers who completed 1) both pre- and post-survey, 2) pre-survey only, and 3) post-survey only. For those who completed both surveys (n=926), paired t-tests and multiple linear regression tested the impact of program length on caregiver outcomes. Caregivers participated in, on average, four sessions and 7.7 hours of training. The majority of caregivers were Caucasian (88%), female (81%), and on average, 60 years old. Significant improvement was found in all three outcomes (P<0.001). The program length made a difference for improvement in comfort with caregiving and closure but not in caregiver gain. Caregivers who are caring for someone during the last years of life benefit from a program that focuses on the life-changing or transformative aspects of caregiving in the last years of life, as well as practical aspects of caregiving. The ability to support caregivers in this relatively low impact intervention can be used in hospice and nonhospice settings.
Article
The middle-range nursing theory of uncertainty in illness is presented from both a theoretical and empirical perspective. The theory explains how persons construct meaning for illness events, with uncertainty indicating the absence of meaning. A model of the uncertainty theory displaying the concepts and their relationships forms the basis for the theoretical and empirical material. Discussion of the theory is organized around three major themes: the antecedents of uncertainty, the process of uncertainty appraisal and coping with uncertainty.
Article
(1) To assess the extent to which death of a spouse causes excess mortality by controlling for the effects of confounding and other sources of bias. Three possible sources of bias are considered: accidents common to spouses, common socioeconomic environment, and common lifestyles. (2) To assess the duration specific effects of death of a spouse on mortality. Prospective study of mortality in Finland among all 35-84 year old married Finnish men and women (1,580,000 people). Baseline sociodemographic measurement from the 1985 census records. Follow up by computerised record linkage to death certificate registers for the period 1986-91 (about 116,000 deaths, of which almost 10,000 among the bereaved) using personal identification codes. (1) After controlling for confounding effects, excess mortality was 17% in men and 6% in women. (2) Excess mortality was higher for short durations than long durations of bereavement. (3) Excess mortality after bereavement was higher in men than women. Controlling for confounding does not seem to have a crucial modifying effect on the relationship between spousal bereavement and mortality. It seems that death of a spouse has a causal effect on mortality. However, although spousal bereavement is a major stressful life event, this causal effect seems to be relatively small and short lived.
Article
The purpose of this study was to investigate the psychological symptoms experienced by recently widowed older men. It was hypothesized that conjugal bereavement in this group would be characterized by a mixture of depression, anxiety and loneliness. Double cohort study. Suburban community population of Brisbane, Australia. Consecutive widowers (65+ years; N = 57) identified from official death records. Married men (65+ years; N = 57) identified from the electoral roll. Widowers interviewed at 6 weeks, 6 months and 13 months post-bereavement. Married men interviewed at similar intervals. Bereavement Phenomenology Questionnaire (BPQ), a 22-item self-report measure employing a four-point response scale to rate the frequency of phenomena over the previous fortnight. Zung Self-rating Depression Scale (SDS). State component of the Spielberger State/Trait Anxiety Inventory (STAI). Revised UCLA Loneliness Scale (ULS). 28-item General Health Questionnaire (GHQ). Widowers reported more state anxiety and general psychological distress, but not more depression or loneliness, than matched married men over the first 13 months post-bereavement. Widowers also reported more sleep disturbance and thoughts of death and suicide than married men. Level of state anxiety was strongly correlated with intensity of grief, but not with age, income, education, occupational prestige, cognitive function, duration of wife's final illness or expectedness of wife's death. The main hypothesis was not supported, as anxiety symptoms were the predominant clinical feature of recent conjugal bereavement among older men. The nature of these anxiety symptoms requires further investigation in recently widowed older persons.
Article
In this chapter, the research on uncertainty in acute illness is reviewed and critiqued. Both qualitative and quantitative studies are included. The review considers the cause and consequences of uncertainty from research on adults and from research on parents of acutely ill children.
Article
To describe family perceptions of care at the end of life. In a representative sample of older people who died from chronic diseases, family members were interviewed about satisfaction with treatment intensity, decision-making, and symptom relief in the last month of life, and gave suggestions to improve care. Interviews were completed with 461 family members, 80% of those contacted. They reported that 9% of decedents received CPR, 11% ventilator support, and 24% intensive care during their last month of life. Family members could not recall a discussion of treatment decisions in 23% of cases. Presence or absence of a living will did not affect the likelihood of no discussion (22% vs 24%, P = .85). Family informants desired more treatment to sustain life in 8% of deaths. They or the decedent wanted treatments doctors did not recommend in 6% of deaths but refused recommended therapies in 18% of deaths. They believed more care to relieve pain or other symptoms was indicated in 18% of deaths. Asked to make positive or negative comments about any aspect of terminal care, 91% of comments on hospice were positive. Nursing home care received the smallest proportion of positive comments (51%). Family members recommendations to improve end of life care emphasized better communication (44%), greater access to physicians' time (17%), and better pain management (10%). Bereaved family members are generally satisfied with life-sustaining treatment decisions. Their primary concerns are failures in communication and pain control. Discussions that focus on specific treatment decisions may not satisfy the real needs of dying patients and their families.
Article
This study examined whether traumatic grief, depressive and anxiety symptoms formed three distinct factors for widows and widowers. In addition, we examined whether high symptom levels of traumatic grief, depression and anxiety predicted different mental and physical health outcomes for widows and widowers. Ninety-two future widows and 58 future widowers were interviewed at the time of their spouse's hospital admission and then at 6 weeks, 6, 13 and 25 month follow-ups. Principal axis factor analyses tested the distinctiveness of traumatic grief, depressive and anxiety symptoms, by gender. Repeated measures ANOVA tested for gender differences and changes over time in mean symptom levels of traumatic grief, depression and anxiety. Linear and logistic regression models estimated the effects of high symptom levels of traumatic grief, depression and anxiety at 6 months on health outcomes at 13 and 25 months post-intake by gender. Three distinct symptom clusters (i.e. traumatic grief, depressive and anxiety symptoms) were found to emerge for both widows and widowers. Widows had higher mean levels of traumatic grief, depressive and anxiety symptoms. High symptom levels of traumatic grief measured at 6 months predicted a physical health event (e.g. cancer, heart attack) at 25 months post-intake for widows. High symptom levels of anxiety measured at 6 months predicted suicidal ideation at 25 months for widowers. The results suggest that there are gender differences in the levels of psychological symptoms resulting from bereavement and in their effects on subsequent mental and physical health for widows and widowers.
Article
The case story of a 47-year-old man with advanced rectal carcinoma illustrates the professional services and care system strategies available to help clinicians serve patients coming to the end of life. For this patient, who understands his prognosis, primary care physician services include (1) prevention and relief of symptoms, (2) assessment of each treatment before and during implementation, (3) ensuring that the patient designates a surrogate decision-maker and makes advance plans, and (4) preparation of patient and family for the time near death. Good care may entail enduring unavoidably difficult times with patients and their families. Enrollment in a hospice program requires that decision-makers confront the prognosis and their uncertainties about it, consider the desirability of other services, recognize variations among available hospice programs, address financial issues, and weigh the distress of patients and loved ones at being labeled as "dying." Hospice provides competent, continuous, and reasonably comprehensive care, but it has some constraints. Function and symptoms for those living with serious chronic illness at the end of life generally follow 1 of 3 trajectories: (a) a short period of obvious decline at the end, which is typical of cancer; (b) long-term disability, with periodic exacerbations, and unpredictable timing of death, which characterizes dying with chronic organ system failures; or (c) self-care deficits and a slowly dwindling course to death, which usually results from frailty or dementia. Effective and reliable care for persons coming to the end of life will require changes in the organization and financing of care to match these trajectories, as well as compassionate and skillful clinicians.
Article
Australian palliative care services are predominantly community based, with an emphasis on enabling the person to live at home for as long as possible. Home care of the person with advanced cancer receiving palliative care in the community depends largely on the availability of a family caregiver. Family caregivers are required to assess, monitor, and deliver complex therapeutic interventions such as pain and symptom control, including the administration and adjustment of complex medication regimens. This article reports a study of 42 family caregivers providing home care to persons with advanced cancer. This study sought to describe a number of caregiver variables that may influence reactions to caring roles and caregiver well-being. The study found that family caregivers are significantly involved in symptom management, and that they take on almost total responsibility for routine household tasks. In addition, the caregiver role has a negative impact on caregiver health, schedule, anxiety, and energy. However, caregivers find significant meaning in their role and feel relatively well prepared for caregiving. The results of this study support the applicability of the vast international literature on caregiver issues for the Australian setting and suggest the need to move toward development of caregiver-focused nursing interventions.
Article
To examine patients', families', and health care providers' preferences regarding preparation for the end of life, attributes of preparation were generated in qualitative focus group discussions and subsequently tested for generalizability in a quantitative national survey. Respondents from all groups showed consensus on the importance of naming someone to make decisions, knowing what to expect about one's physical condition, having financial affairs in order, having treatment preferences in writing, and knowing that one's physician is comfortable talking about death and dying. Patients were more likely than physicians to want to plan funerals and know the timing of death and less likely than all other groups to want to discuss personal fears. Participants in care of dying patients agree overwhelmingly with the importance of preparation. However, significant barriers to preparation impede it from being a common part of clinical encounters. Further research and training are needed to ensure that the desire for greater preparation is translated into improved action toward preparation in medical practice.
Article
Communication skills are frequently regarded as innate and intuitive. Many studies, however, now show that most components of communication techniques can be taught and that these learned skills have an impact on the physician's ability to communicate. This article sets out two fundamental protocols that act as templates or strategies for communication. One, (the C-L-A-S-S strategy) highlights the five central factors in all clinician-patient interviews. The second (the S-P-I-K-E-S protocol) is a variant for the specific task of breaking bad news.
Article
A reliable and valid measure of the quality of the dying experience would help clinicians and researchers improve care for dying patients. To describe the validity of an instrument assessing the quality of dying and death using the perspective of family members after death and to identify clinical correlates of a high quality death, a retrospective cohort study evaluated the 31-item Quality of Dying and Death (QODD) questionnaire. The questionnaire was administered to family members of patients who died in Missoula county Montana in 1996 and 1997. The interview included questions assessing symptoms, patient preferences, and satisfaction with care. Measurement validity was examined for item and total scores and reliability analyses for the QODD total score were assessed. Construct validity was assessed using measures of concepts hypothesized to be associated with the quality of dying and death. There were 935 deaths, of which 252 (27.0%) family interviews were represented. Non-enrolled decedents were not significantly different from enrolled decedents on age, sex, cause of death, or location of death. We excluded sudden deaths (n = 45) and decedents under age 18 (n = 2), leaving 205 after-death interviews. A total QODD score, on a scale from 0 to 100 with higher scores indicating better quality, ranged from 26.0 to 99.6, with a mean of 67.4 and Cronbach's alpha of 0.89. The total QODD score was not associated with patient age, sex, education, marital status, or income. As hypothesized, higher QODD scores were significantly associated with death at home (P < 0.01), death in the location the patient desired (P < 0.01), lower symptom burden (P < 0.001), and better ratings of symptom treatment (P< 0.01). Although the total score was not associated with the presence of an advance directive, higher scores were associated with communication about treatment preferences (P < 0.01), compliance with treatment preferences (P < 0.001), and family satisfaction regarding communication with the health care team (P < 0.01). Availability of a health care team member at night or on weekends was also associated with a higher QODD score (P < 0.001). The QODD total score demonstrated good cross-sectional validity. Clinicians caring for dying patients should focus on improving communication with the patient and family and improving symptom assessment and treatment. Health care teams should focus on continuity of care, including having a team member familiar with the patient available for calls at nights and on weekends. Future work will assess the potential role of the QODD in improving the quality of the dying experience.
Article
In this study, 24 family caregivers of terminally ill patients participated in in-depth interviews regarding their experiences of giving care. The data were analyzed using grounded theory qualitative method. Commitment emerged as the precondition of the caregiving process. The caregivers did not perceive the work of caring as a burden. Rather, they felt that despite any personal hardships, what they were doing was important to their loved ones and therefore meaningful to them as caregivers. The components of commitment can be described as relational commitment, the act of showing love, and determination. The process of caregiving includes four phases: 1) holding onto hope for a miracle, 2) taking care, 3) preparing for death, and 4) adjusting to another phase of life. A patient-caregiver relationship, Confucian concepts of yi (appropriateness or rightness), and filial duty are reflected in the process of caregiving. Consequences of the process include finding meaning in life and peace of heart and mind. The emotional aspect of the caregiving experience can be described as an intense emotional experience filled with feelings of hope and hopelessness, guilt, fear, and regret. As a result of the caregiving experience, most participants found they have had a change of worldviews and treasure their lives. Findings show a significant need for interventions at each phase of the caregiving process designed to provide effective and culturally sensitive support and affirmation to family members as they care for their loved ones with terminal illnesses.
Article
To examine agreement between patients, caregivers, and clinicians regarding prognosis communication and to examine patients' and caregivers' desire for prognostic information. Cross-sectional survey. Participants' homes. Two hundred fourteen persons aged 60 and older with a limited life expectancy secondary to cancer, congestive heart failure, or chronic obstructive pulmonary disease; caregivers; and clinicians. Patient-clinician and caregiver-clinician agreement about the occurrence of prognosis discussions and patient and caregiver desire for prognostic information. In 46% of patient/clinician and 34% of caregiver/clinician pairs, the clinician reported saying that the patient could die of the underlying disease, whereas the patient or caregiver reported no discussion. In 23% of patient/clinician and 30% of patient/caregiver pairs, the clinician reported discussing an approximate life expectancy, whereas the patient or caregiver reported no discussion. Of 205 patients who reported no life expectancy discussion, 40% did not want this discussion. Whereas 83% of those believing they had 1 year or less to live wanted to discuss prognosis, 79% of those believing they had 1 to 2 years, 53% of those believing they had 2 to 5 years, and 50% of those believing they had more than 5 years or who were unwilling to answer wanted this discussion (P=.007). Although clinicians report that they are discussing prognosis, patients and caregivers frequently do not corroborate these reports. Furthermore, many patients do not want prognostic information. Despite previous reports concluding that patients want full disclosure about their illness, many seriously ill older persons and caregivers may not be ready or able to receive prognostic information.
Article
To verify those aspects of care that nurses view as important when assisting patients beyond therapeutic possibilities and who are not under intensive care. (1) To find out how nurses cope with daily confrontation with the death and suffering of dying patients, (2) To identify whether nurses feel it is important to have communication skills in order to assist the terminally ill patient, (3) To estimate nurses' degree of work satisfaction, and (4) To explore the humane aspects of nursing assistance to the dying. Data were collected in January and February of 2002 by means of individual semistructured interviews with 14 nurses from the unit of haematology at a general hospital in the city of Sao Paulo, Brazil. Interviews were recorded, transcribed, and further analysed according to the qualitative method proposed by Bardin (1977). We found that Brazilian nurses caring for dying patients should be receiving psychological and emotional support. Results also highlighted different individual approaches in the endeavour to communicate with terminally ill patients, as well as the avoidance patterns developed by some nurses. The latter appeared to be as a result of personal difficulties in coping with the reality of human suffering and death. Finally, there is a need for better preparation in communication skills for nurses caring for terminally ill patients. Although the number of interviewed nurses in our study was small, the results corroborated the findings of other studies on the subject.
Article
The difficulty of negotiating the concerns of family members while also respecting the needs of the patient adds complexity to the task of discussing prognosis and end-of-life (EOL) issues with terminally ill cancer patients. The informational needs of caregivers may be different from those of the patients themselves with regard to these topics. However, to the authors' knowledge, this issue has received relatively little research attention. The authors conducted focus groups and individual interviews with 19 patients with far advanced cancer and 24 caregivers from 3 palliative care (PC) services in Sydney and 22 PC health professionals (HPs) from around Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Additional focus groups or individual interviews were conducted until no additional topics were raised. The participants' narratives were analyzed using qualitative methodology. The participants had varying views regarding whether patients and caregivers should be told different information concerning prognosis and EOL issues. Three themes were identified from the transcripts regarding meeting the informational needs of both the patients and caregivers: 1) the importance of consistency and openness, 2) the specific information needed to care for the patient, and 3) the value of having separate discussions with the patient and caregiver. A desire to restrict the patient's access to information by the caregiver or vice versa was reported by the HPs to be one of the most challenging issues when discussing prognosis and EOL issues. Three themes were identified with regard to this issue: 1) autonomy versus protection, 2) negotiating family dynamics, and 3) difficulty using interpreters. The results of the current study emphasized the importance of considering the distinct informational needs of caregivers, as well as those of the patient, when discussing prognosis and EOL issues.
Article
In this qualitative study, 19 Dutch terminal patients and 23 relatives of deceased patients were interviewed. The interviews revealed that a timely request for care and anticipation of "what was going to happen" was determined by the degree to which patients and their relatives realize that the end of life was close, that the symptoms would get worse, and that the family would have to bear an increasing burden. When awareness of the severity of the situation dawns late, shortly before death, the patient and family may not receive the right sort of care, nor have access to the appropriate facilities. In the concluding part of this article, there is a plea for adopting a proactive approach. Nurses and other caregivers must try to prepare patients and relatives early for the care that will become necessary in the later stages.
Article
Racial and ethnic differences in the association of stressors, resources, and sociodemographic characteristics with depressive symptoms and perceived physical health were investigated. Data from 653 White non-Hispanic caregivers, 278 African American, and 218 Hispanic Alzheimer's caregivers (209 males, 940 females) who were assessed at the baseline data collection of the REACH study, a multisite trial of caregiver interventions, was obtained. Multiple sample analysis, which allows testing whether a pattern of relationships is invariant across different samples, was used. Results support the hypothesis that, despite significant differences in resources and stressors, the predictors of depression and health are relatively uniform across groups. Ethnic differences were found for the effect of age, income, gender, and care receiver's self-care impairments on caregiver depression. For perceived physical health, there were ethnic differences for the effect of income, gender, and type of caregiver relationships.
Article
Understanding family dynamics is a key component in providing comprehensive care for persons with progressive illnesses and their caregivers. The purpose of this study was to investigate what families experience during an advancing illness and to describe their pattems of response. In-depth interviews (n=108) were conducted with families two weeks after hospice admission. Interviews were tape recorded, transcribed, and analyzed using qualitative methods. Six modes were distilled: reactive (illness generates intense responses), advocacy (vulnerability ignites assertive actions), fused (illness and decline are shared experiences), dissonant (diametrically opposed viewpoints cause struggle), resigned (decline and death are anticipated), and closed (outward responses are impassive). Three events triggered movement from one mode to another: (1) functional changes, (2) crisis events, and (3) provider communication. Providers who understand varied family reactions can ease the patient's suffering, assist relatives in providing effective care, and prepare them for the approaching death.
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Support for families during a person's advanced disease and also into the bereavement period is a major component of palliative care. However, because of the gaps in bereavement research in this area, there is a lack of evidence-based direction for health professionals. This study sought to explore family caregiver perceptions of their relative's death and assess how well they were coping. Caregivers were also asked to identify which health professional strategies helped them prepare for and respond to their relative's death. Two months after their relative's death primary family caregivers (n=45) of patients with advanced cancer completed a structured interview and were also assessed to determine if they were confronted by traumatic grief. Seven percent of caregivers were confronted by traumatic grief; most caregivers perceived they were coping reasonably well and could identify positive outcomes related to their experience. Caregivers noted the significant benefits of receiving comprehensive information to prepare them for the future and expressed appreciation for the support provided by specialist palliative care services. There is a large body of literature that highlights the negative consequences of being a family caregiver to a person with advanced disease. The sample population in this study, however, seemed to be reasonably well functioning; the results of the study were therefore somewhat surprising. A research agenda and key clinical implications are outlined in order to aid direction in targeting bereavement interventions.
Article
Although it has been suggested that family and friends who are prepared for the death of a loved one have less distress, the relationship between preparedness and bereavement mental health is inconclusive. To determine the relationship between preparedness for the death and mental health in bereaved caregivers of dementia patients and explore predictors of preparedness. A prospective study of family caregivers of persons with dementia. Standardized assessment instruments and structured questions were used to collect data at study entry and at 6, 12, and 18 months. Multiple caregiving-related variables were collected. Bereaved caregivers reported whether they were "not at all" prepared or prepared for the death of their loved one. Two hundred twenty-two bereaved caregivers Twenty-three percent of caregivers were not prepared for the death. These caregivers had more depression, anxiety, and complicated grief symptoms. Black caregivers, caregivers with less education, those with less income, and those with more depressive symptoms prior to the death were more likely to perceive themselves as "not at all" prepared. In contrast, the amount of pain the care recipient was in prior to death was positively associated with preparedness. Despite providing high-intensity care, often for years, many bereaved caregivers perceived themselves as unprepared for the death. These caregivers had more depression, anxiety, and complicated grief symptoms. Future work should be directed to confirming these findings and determining how best to intervene with high-risk caregivers.
Article
To measure the prevalence of spiritual needs and identify factors associated with spiritual needs among patients with cancer and family caregivers. Descriptive, cross-sectional, quantitative. Inpatients and outpatients at a university medical center in the southwestern United States. 156 patients with cancer and 68 family caregivers who were primarily white and Christian and mostly perceived their cancer as not life threatening. Self-report questionnaires, including the Spiritual Interests Related to Illness Tool and Information About You. Statistical analysis involved analyses of variance, correlations, and factor analysis. Spiritual needs and desire for nursing help with spiritual needs. The most important spiritual needs included being positive, loving others, finding meaning, and relating to God. The least important were needing to ask "why" questions and preparing for dying. Desire for nursing assistance with spiritual needs was moderate and varied. Variables correlated with spiritual needs and desire for nurse help included religiosity, being an inpatient, and perceiving the cancer as incurable. Desire for nurse help and importance of spiritual needs were directly correlated. Distressing spiritual needs were reported least frequently. Certain factors appear to be associated with how much spiritual need is perceived and how much nurse help with those needs is wanted. Patients with cancer and family caregivers have similar spiritual needs that may require care. Spiritual assessment and therapeutics can target specific types of spiritual needs. A nurse's help with spiritual needs, however, is not always wanted.
Article
Developing good care for dying people is important nowadays. Normative expectations about what could be considered as a good death are inextricably bound up with this issue. This article aims to offer an insight in the way terminally ill patients talk about death and dying and how they refer to current western normative expectations about a 'good' death. Thirteen patients with a life expectancy of less than 3 months living at home were interviewed about how they experienced the last phase of their lives. The analysis focused on the way patients tell their personal stories by using normative expectations that are part of a broader cultural western framework. Five categories of normative expectations were discriminated in the stories of patients: awareness and acceptance, open communication, living one's life till the end, taking care of one's final responsibilities and dealing adequately with emotions. The results of this study show that in the search of a good death people show a clear diversity in their way of referring to as well as in dealing with normative expectations that are part of the current cultural paradigm. Professional caregivers should be responsive to how a patient deals with and relates to normative expectations about a good death and should support patients in their individual process of dying an 'appropriate death'.