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How to say goodbye : the wisdom of hospice caregivers
\"As artist-in-residence at the Zen Hospice Project Guest House, Wendy MacNaughton experienced firsthand how difficult it is to know what to do when we're sharing final moments with a loved one. In this tenderly illustrated guide to saying goodbye, with a foreword by renowned physician and author BJ Miller, MacNaughton shows how to make sure those moments are meaningful. Using a framework of \"the five things\" taught to her by a professional caregiver, How to Say Goodbye provides a model for having conversations of love, respect, and closure: with the words \"I forgive you,\" \"Please forgive me,\" \"Thank you,\" \"I love you,\" and \"Goodbye,\" each oriented toward finding mutual peace and understanding when it matters most. How to Say Goodbye features MacNaughton's drawn-from-life artwork from both the Zen Hospice Project Guest House and her own aunt's bedside as she died, each paired with hospice caregivers' gentle advice on creating a positive sensory experience, acknowledging what you can't control, and sharing memories and gratitude. A poignant guide to embracing the present and deepening relationships during great vulnerability, How to Say Goodbye shows that just as there is no one right way to live a good life, there is no one right way to say goodbye. Whether confused, scared, or uncertain, this book is a starting point\"-- Provided by publisher.
Book
Unique characteristics of informal hospice cancer caregiving
Purpose
The purpose of this study was to describe the unique characteristics of informal hospice cancer caregiving.
Methods
Researchers conducted a secondary analysis of data drawn from a randomized clinical trial of an informal hospice caregiving intervention (
N
= 348). Demographic characteristics and measures of the informal caregiving experience of hospice patients and their informal caregivers were compared based on the patient’s diagnosis using chi-square tests for association of categorical variables and
t
tests for continuous variables.
Results
Informal caregivers of cancer patients differed from their non-cancer counterparts in a number of respects including patient age, caregiver age, patient residence, relationship between patient and caregiver, amount and duration of care provided, likelihood to incur out-of-pocket expenses related to patient care, caregiver problem-solving style, and impact on caregiver daily schedule. There were no statistically significant differences between cancer and non-cancer caregivers in terms of gender, race, employment status, anxiety, and quality of life.
Conclusions
While cancer and non-cancer caregivers are similar in many respects, a number of unique features characterize the informal hospice cancer caregiving experience. Attention to these unique features will allow hospice providers to tailor supportive care interventions to better address cancer caregivers’ needs.
Journal Article
Providing psychological support to people impacted by terminal illness: A mixed methods study of hospice staff perceived competence, confidence and training needs
Psychological distress is common amongst people with a terminal illness. While mental health specialists have a role in assessment and management of those with complex psychological problems, hospice clinicians provide psychological support to most patients and families.
To describe current practices relating to the provision of psychological support by hospice clinicians, and to explore perceived competence, confidence and training needs in relation to this aspect of their role.
We used a parallel mixed methods research design. An online questionnaire consisting of closed and free-text questions was emailed to 273 hospices in the UK and the Republic of Ireland between May and June 2023.
Participants included nurses, doctors, and allied health professionals employed by a hospice. Quantitative data was analysed descriptively using SPSS 27, and free-text data was analysed thematically guided by the framework method.
151 hospice staff completed the questionnaire. Most (81%) reported that they regularly screen for psychological distress, but clinical judgement, as opposed to use of a validated screening tool, was most common. Respondents reported confidence and competence in many areas. Overall, 72% strongly agreed they were willing to explore difficult subject matter. However, only 25% strongly agreed they were confident in differentiating level of psychological need, and 36% reported they could not arrange appropriate psychological support when needed. Almost all (95%) agreed that training in psychological support would enhance their practice. Individual and family factors such as denial, communication challenges and family conflict were barriers to providing psychological support. Systemic factors were time constraints, prioritisation of physical symptoms and limited access to mental health specialists.
Hospice staff report that they are confident in providing basic psychological support. However, there was a desire for further training in this aspect of care. Clearer guidance on referral criteria for specialist psychological support is warranted.
Journal Article
The comfort of people
\"At the end of life, our comfort lies mainly in relationships. In this book, Daniel Miller, one of the world's leading anthropologists, examines the social worlds of people suffering from terminal or long-term illness. Threading together a series of personal stories, based on interviews conducted with patients of an English hospice, Miller draws out the implications of these narratives for our understanding of community, friendship, and kinship, but also loneliness and isolation. This is a book about people's lives, not their deaths: about the hospice patients rather than the hospice. It focuses on the comfort given by friends, carers and relatives through both face-to-face relations and, increasingly, online communication. Miller asks whether the loneliness and isolation he uncovers is the result of a decline of English patterns of socialising, or their continuation. This moving and deeply humane book combines warmth and sharp observation with anthropological insight and practical suggestions for the use of media by the hospice. It will be of interest not only to students and scholars of anthropology, sociology, social policy and media and cultural studies, but also to healthcare professionals and, indeed, to anyone who would like to know more about the role of relationships in the final stage of our lives\"-- Provided by publisher.
Book
The experience of providing hospice care concurrent with cancer treatment in the VA
PurposeVeterans with advanced cancer can receive hospice care concurrently with treatments such as radiation and chemotherapy. However, variations exist in concurrent care use across Veterans Affairs (VA) medical centers (VAMCs), and overall, concurrent care use is relatively rare. In this qualitative study, we aimed to identify, describe, and explain factors that influence the provision of concurrent cancer care (defined as chemotherapy or radiation treatments provided with hospice) for veterans with terminal cancer.MethodsFrom August 2015 to April 2016, we conducted six site visits and interviewed 76 clinicians and staff at six VA sites and their contracted community hospices, including community hospices (n = 16); VA oncology (n = 25); VA palliative care (n = 17); and VA inpatient hospice and palliative care units (n = 18).ResultsThematic qualitative content analysis found three themes that influenced the provision of concurrent care: (1) clinicians and staff at community hospices and at VAs viewed concurrent care as a viable care option, as it preserved hope and relationships while patient goals are clarified during transitions to hospice; and (2) the presence of dedicated liaisons facilitated care coordination and education about concurrent care; however, (3) clinicians and staff concerns about Medicare guideline compliance hindered use of concurrent care.ConclusionsWhile concurrent care is used by a small number of veterans with advanced cancer, VA staff valued having the option available and as a bridge to hospice. Hospice staff felt concurrent care improved care coordination with VAMCs, but use may be tempered due to concerns related to Medicare compliance.
Journal Article
Differences in end-of-life care patterns between types of hospice used for cancer patients: a retrospective cohort study
Background
In response to the rapid aging population and increasing number of cancer patients, discussions on dignified end-of-life (EoL) decisions are active around the world. Therefore, this study aimed to identify the differences in EoL care patterns between types of hospice used for cancer patients.
Methods
In this population-based cohort study, the Korean National Health Insurance Service cohort data containing all registered cancer patients who died between 2017 and 2021 were used. A total of 408,964 individuals were eligible for analysis. The variable of interest, the type of hospice used in the 6 months before death, was classified as follows: (1) Non-hospice users; (2) Hospital-based hospice single users; (3) Home-based hospice single users; (4) Combined hospice users. The outcomes were set as patterns of care, including intense care and supportive care. To identify differences in care patterns between hospice types, a generalized linear model with zero-inflated negative binomial distribution was applied.
Results
Hospice enrollment was associated with less intense care and more supportive care near death. Notably, those who used combined hospice care had the lowest probability and frequency of receiving intense care (aOR: 0.18, 95% CI: 0.17–0.19, aRR: 0.47, 95% CI: 0.44–0.49), while home-based hospice single users had the highest probability and frequency of receiving supportive care (Prescription for narcotic analgesics, aOR: 2.95, 95% CI: 2.69–3.23, aRR: 1.45, 95% CI: 1.41–1.49; Mental health care, aOR: 3.40, 95% CI: 3.13–3.69, aRR: 1.35, 95% CI: 1.31–1.39).
Conclusion
Our findings suggest that although intense care for life-sustaining decreases with hospice enrollment, QoL at the EoL actually improves with appropriate supportive care. This study is meaningful in that it not only offers valuable insight into hospice care for terminally ill patients, but also provides policy implications for the introduction of patient-centered community-based hospice services.
Journal Article
The in-between : unforgettable encounters during life's final moments
Hospice nurse and TikTok star Hadley Vlahos shares moving stories, life lessons and wisdom from her patients in this heart-warming memoir about how end-of-life care can teach us just as much about how to live as it does about how we die.
Book
Increased Access to Palliative Care and Hospice Services: Opportunities to Improve Value in Health Care
Context: A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. Methods: This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. Findings: Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Conclusions: Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions.
Journal Article