Background The concept of a "good death" has informed the philosophy of palliative care. Supporting preferences for place of care and enabling death at home surrounded by family and friends remains the pinnacle of good palliative care. Evidence suggests that home remains the preferred place of care and place of death for most people. Yet, many people will spend a significant amount of time in hospital during the last year of their life and, in many countries, a majority will die in a hospital setting. With pressure on health funding, the way in which hospitals are being used in the last year of life is being increasingly scrutinised by leaders, clinicians and policy makers. "Inappropriate" or "potentially avoidable" hospital admissions are seen as opportunities for cost savings. However, there is a paucity of evidence regarding the experiences of people with palliative care needs, which focuses on both the positive and negative aspects of being in hospital. In addition, little is known about how these experiences influence a preference to return to hospital. Aim To explore the benefits and burdens of hospital admissions for people with palliative care needs and examine how these experiences influence a preference to return to hospital. Methods A two-phase, sequential mixed methods study. Findings Patients experience of benefit extended beyond the treatment they received to include: getting/feeling better, relief for family, getting help to manage at home, and feeling safe. Those living in high deprivation and those with cancer experienced more benefit being in hospital. Significantly more burden related to being in hospital was experienced by Chinese and Pacific participants. Most participants expressed a preference to be in hospital rather than remain at home even if the care they had received in hospital could have been provided at home. In addition, feeling safe was a significant predictor of a preference to return to hospital. Despite most being involved with community-based services at the time of admissions, participants did not perceive services such as the general practitioner and community hospice as enablers to remain at home. Conclusion This study confirms that people with palliative care needs view acute hospitals as playing an important role in their care, contrary to policy assumptions. These findings have significant implications for practice and policy internationally, notably in relation to which models of care are developed and funded. In particular, the findings indicate that in many countries there is currently a risk of developing a model of care that is not in line with the preferences and experiences of people with palliative care needs and that could result in them being unable to access hospital care when needed. The findings also demonstrate that if people with palliative care needs are to be cared for at home, more research is needed to understand what they require to feel safe at home during a period of acute illness or deterioration, rather than assuming that what is required is more access to community services. Finally, further investigation is required to gain an understanding of what feeling safe in hospital means for patients from different socio-demographic groups across multiple care settings.

For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life. Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes. Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.

Choices in Palliative Care brings together leading experts to spotlight core issues in the field and identify ways PC can fill gaps in current care systems. This far-sighted volume redefines palliative care as interdisciplinary and integrative, bridging acute and long-term care to respond to clients’ evolving needs. Those teaching health service delivery courses will find this material especially useful.

Based on the extensive experience of three clinicians in the area, this book provides those setting up palliative care services in hospitals with practical guidance and down to earth advice on the range of problems they might encounter.

Ageing populations mean that palliative and end of life care for older people must assume greater priority. Indeed, there is an urgent need to improve the experiences of older people at the end of life, given that they have been identified as the 'disadvantaged dying'. To date, models of care are underpinned by the ideals of specialist palliative care which were developed to meet the needs of predominantly middle-aged and 'young old' people, and evidence suggests these may not be adequate for the older population group. This book identifies ways forward for improving the end of life experiences of older people by taking an interdisciplinary and international approach. Providing a synergy between the currently disparate literature of gerontology and palliative care, a wide range of leading international experts contribute to discussions regarding priority areas in relation to ageing and end of life care. Some authors take a theoretical focus, others a very practical approach rooted in their clinical and research experience. The issues covered are diverse, as are the countries in which discussions are contextualised. Those working in both palliative care and gerontology will find the issues and advice discussed in this book hugely topical and of real practical value.

Taking as its focus a highly emotive area of study, The Dying Process draws on the experiences of daycare and hospice patients to provide a forceful new analysis of the period of decline prior to death. Placing the bodily realities of dying very firmly centre stage and questioning the ideology central to the modern hospice movement of enabling patients to 'live until they die', Julia Lawton shows how our concept of a 'good death' is open to interpretation. Her study examines the non-negotiable effects of a patient's bodily deterioration on their sense of self and, in so doing, offers a powerful new perspective in embodiment and emotion in death and dying. A detailed and subtle ethnographic study, The Dying Process engages with a range of deeply complex and ethically contentious issues surrounding the care of dying patients in hospices and elsewhere.

Public health approaches to palliative care have been growing in policy importance and practice acceptance. This innovative volume explores the major concepts, practice examples, and practice guidelines for this new approach. The goal of ‘comprehensive care’ – seamless support for patients as they transition between home based care and inpatient services – relies on the principles of health promotion and community development both to ensure services are available and importantly appropriate for patients’ needs. In developing contexts, where hospitals and hospices may be inaccessible, a public health approach provides not only continuity of care but greater access to good end of life care. This book provides both a historical and conceptual overview whilst offering practical case examples from affluent and developing contexts, in a range of clinical settings. Finally, it draws together research-based guidelines for future practice. Essential reading for public health researchers and practitioners with an interest in end of life care and global health as well as those involved in developing palliative care provision, International Perspectives on Public Health and Palliative Care is the first volume to present an overview of theory and practice in this emerging field.

As a society, we have made amazing gains in being able to detect and treat cancer. Even so, about half the people who are told by their doctors that they have cancer will die within a few years. This means that every year about one million people find out that they have cancer and are treated, and about one-half million people die of cancer nationwide. So far, most cancer research and treatment has focused on trying to cure cancer. There hasn't been much attention paid to other important issues, such as pain control and taking care of other troubling symptoms. Now more and more people are aware that there are cancer care needs beyond just trying to cure it. Attention is now being paid to helping people with cancer cope better with the problems that may arise when people are being treated or as they approach death.

Homelessness is a pervasive social injustice that stems from the sociopolitical construction of disposable human life. The shifting age demographics of those experiencing homelessness in the United States exposes the shortcomings and barriers within homelessness response services and safety-net healthcare to address serious illness, disability, and age-related needs. Through a partnership with the only specialty palliative care program for people experiencing homelessness in the United States, the Research, Action & Supportive Care at Later-life for Unhoused Peoples (RASCAL-UP) study aimed to (1) identify barriers to care across a spectrum of services for unhoused people facing serious illness; and (2) examine residential trajectories of unhoused patients over the course of palliative care treatment. Methods: A constructivist grounded theory approach was taken. Retrospective chart review of palliative care patients (n=75) was paired with semi-structured interviews with service providers across healthcare and homeless response systems (n=30), as well as observation of palliative care meetings (n=12). Findings: An exploratory analysis of patient charts led to the identification of a 4-category qualitative typology of residential trajectories during palliative care enrollment. The Aging & Dying in Place typology showed sustained continuity of care within supportive housing. Providers described permanent supportive housing and low-barrier temporary accommodations as optimal lodging for people experiencing both homelessness and serious illness, due to the relative privacy, autonomy, and peer and community support they offer. Some of these locations, such as Tiny Villages, offer modularity, allowing for personalized adaptations. However, increasing system strains promote burnout among staff and limit supply. There are accessibility barriers in supportive housing, emergency shelters, Single Room Occupancy sites, and hotels and challenges in partnership with health and caregiving services. The Frequent Transitions typology was developed for patients who were unable to establish continuity of care during their palliative care enrollment, moving between locations on the housing care continuum, healthcare institutions, jail, and street-based settings. In these cases, health and housing systems were not able to adequately patch together care. The third typology, Healthcare Institutions as Housing, identified a set of patient experiences characterized by long-term hospitalizations and skilled nursing utilization. Health services within homeless systems, like medical respite, were designed to assist with acute and temporary issues and faced limitations in serving people with aging-related health issues or chronic serious illness. Medical providers noted that access and admission to long-term care services were influenced by system strain and capacity, financial disincentives for taking dual-eligible (i.e., Medicare and Medicaid qualified) patients, perception and stigma of unhoused populations, and limited knowledge of harm reduction, serious mental illness, and trauma. Providers noted the pervasive ideology of punishment as a form of health motivation, and how health policy and practice is not low-barrier. The fourth typology, Housing as Palliation, illustrated a pathway in which patients secured housing later in their illness trajectory, suggesting their prognoses and symptoms activated a system of support for older, disabled, and/or seriously-ill people that isn’t available until one is deemed most-vulnerable. Discussion: This study offers an initial framework for understanding how current systems of care fall short for people facing simultaneous homelessness and serious illness, and opportunities to address housing and health service gaps. Potential advances in closing the gap between health and housing services include incentivized interdisciplinary, cross-system education, training, and consultation that focuses on both homelessness and palliative care, as well as mobile health and low-barrier housing interventions that attend to chronic and high medical acuity. Researchers can contribute implementation science tools to measure and translate the innovative aging and health programming and services emerging in the spaces where housing care continuum, healthcare, government aging and disability services, and community mutual aid intersect.

'Social Aspects of Care' provides an overview of financial and mental stress illness places, not just on the patient, but on the family as well. This volume contains information on how to support families in palliative care, cultural considerations important in end-of-life care, sexuality and the impactof illness, planning for the actual death, and bereavement.