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Intro -- PALLIATIVE AND NURSING HOME CARE POLICIES, CHALLENGES AND QUALITY OF LIFE -- PALLIATIVE AND NURSING HOME CARE POLICIES, CHALLENGES AND QUALITY OF LIFE -- Contents -- Preface -- Chapter 1 Identifying the Palliative Care Needs of Home-Based People with End-Stage Dementia and Their Caregivers -- Abstract -- Introduction -- Dementia -- What Is Dementia? -- How Is Dementia Diagnosed? -- Providing the Diagnosis of Dementia -- What Are the Characteristics of End-Stage Dementia? -- Palliative Care in End-stage Dementia -- Who Receives Palliative Care Services? -- What Are the Barriers to Quality End-of-Life Care? -- Dementia Not Seen as a Terminal Illness -- Nature of Advanced Dementia and Treatment Decisions -- Assessment and Management of Symptoms -- Challenging Caregiver Stress and Bereavement Issues -- Health System Challenges -- Guidelines for Palliative Care in End-Stage Dementia -- What Resources Are Required to Support End-of-Life Care in the Home? -- What Are the Palliative Care Needs of Home-Based People with Dementia at End-Stage and Their Carers? -- What Is the Context in Which Caregivers Are Looking after People at Home with End-Stage Dementia? -- Desire and Ability to Remain at Home -- Duration of Care -- Behaviors of Concern -- Caregiver Burden -- What Are the Palliative Care Needs of People with Dementia and Their Caregivers? -- Diagnosis and Specialist Referral -- Planning for the Future -- Caregiver Supports -- Avenues of Support - Formal and Informal -- Family Support -- Counselling as a Coping Strategy -- Services Received -- a. Respite -- b. Showering -- c. Cooking and Feeding -- d. Continence -- f. Equipment -- h. Private Nursing Care -- Services Required -- What is the Relevance of These Findings? -- Conclusion -- References.

"This book is an innovative, practical approach to equipping health social workers with theoretical and clinical tools to integrate palliative care principles into practice with individuals, families, teams and institutions. The editors and authors seek to honor the coherence of palliative care and social work, re- awakening the potential of thousands of health social workers to lead and inform the IOM mandate for high quality, humane patient- centered family focused care"--

Cover -- Half Title -- Title Page -- Copyright Page -- Contents -- Foreword -- Preface -- About the editors -- List of contributors -- Acknowledgements -- Introducing our discourse -- Section 1: A global overview Section introduction -- 1 Paediatric palliative care as a basic human right -- 2 The International Children's Palliative Care Network (ICPCN): a global overview -- 3 Organisation of care in the UK -- 4 Organisation of care in Romania -- 5 Organisation of care in Uganda -- 6 Organisation of care in South Africa -- Section 2: Focusing on families: hearing the evidence Section introduction -- 7 A research perspective: narrative research -- 8 Part 1: 'Where's my sitcom?' The young adult's voice -- Part 2: Commentary on the young adult's story -- 9 Part 1: The parent's voice -- Part 2: Jamie's continuing care domains -- Part 3: Commentary on the parent's story: the key to integrating services -- 10 Part 1: A child's life path -- Part 2: A philosophical perspective on a father's tale -- 11 Hearing the voices of parents and carers -- 12 Hearing the voices of siblings -- 13 Transitions within the family -- Section 3: Minimising crisis points in paediatric palliative care Section introduction -- 14 Pathways in palliative care -- 15 Use of clinical practice guidelines and critical pathways -- 16 Minimising crisis points in paediatric palliative care: the ACT care pathways in action -- Section 4: Supporting transitions Section introduction -- 17 Transitions within acute care settings: the chaplain's perspective -- 18 Transitions at the beginning of life: psychological support -- 19 Managing transitions to hospice care: the hospice consultant's perspective -- 20 Supporting transitions: effective palliative care teams -- Section 5: Evidence/knowledge transfer into practice Section introduction

Social work, end-of-life and palliative care -- Death and dying : awareness and uncertainty -- Truth and hope : communication at the end of life -- Engaging and assessing in end-of-life care -- Intervention in end-of-life social work -- Grief and bereavement : ideas and interventions -- Multiprofessional end-of-life care -- Ethical and value issues for end-of-life social work -- Group and macro interventions

Sexuality / Marianne Matzo -- Bereavement / Inge B. Corless -- Supporting families in palliative care / Rose Steele and Betty Davies -- Planning for the actual death / Patricia Berry -- Cultural considerations in palliative care / Polly Mazanec and Joan T. Panke -- Self-assessment test questions.

Part I. Catholic Theological and Moral Traditions and Teaching on Palliative Care -- 1. Scriptural-Theological Basis of Catholic Palliative Care (Dan O'Brien) -- 2. Catholic Moral Teaching and Tradition on Palliative Care and Hospice (Peter J. Cataldo) -- 3. The Tradition of Ars Moriendi and Catholic Palliative Care (Charles Bouchard, O.P.) -- 4. Palliative Care is not Stealth Euthanasia (Ron Hamel) -- Part II. Body, Mind, and Spirit in Palliative Care -- 5. The Catholic Moral Tradition on Pain and Symptom Management (Kevin Donovan) -- 6. Spiritual Care in Palliative Care (David A. Lichter) -- 7. Psychological Aspects of Palliative Care and Human Dignity (Guy Maytal) -- 8. Care of the Family and Social Aspects of Palliative Care (Sarah Hetue Hill) -- 9. Transitioning to Palliative Care and to Hospice in a Catholic Health Care Setting (Myles Sheehan, S.J.) -- Part III. Catholic Social Teaching and Institutional and Societal Issues Relating to Palliative Care -- 10. The Common Good and Palliative Care (J. Michael Stebbins) -- 11. Catholic Health Care and Models for Advancing Excellence in Palliative Care (Tina Picchi) -- 12. Catholic Education on Palliative Care (MC Sullivan) -- 13. Catholic Moral Teaching and Tradition on Advance Care Planning (Mark Repenshek) -- 14. Palliative Care and Physician-Assisted Suicide (Elliott Louis Bedford)

Religious Understandings of a Good Death in Hospice Palliative Care -- Religious Understandings of a Good Death in Hospice Palliative Care -- Contents -- Acknowledgments -- Introduction -- Part I: Religious Understandings of a Good Death -- Chapter 1: Cicely Saunders and the Development of Hospice Palliative Care -- Chapter 2: "Like a Ripe Fruit Separating Effortlessly from Its Vine" Religious Understandings of a Good Death: Hinduism -- Chapter 3: Welcoming an Old Friend: Buddhist Perspectives on Good Death -- Chapter 4: Muslim Perspectives on a Good Death in Hospice and End‑of‑Life Care -- Chapter 5: Tradition and Change in Jewish Ideals Regarding a "Good" Death -- Chapter 6: Dying Well in Christianity -- Chapter 7: Chinese Religions and Hospice Care -- Part II: Case Studies -- Chapter 8: Buddhist Hospice Care in Thailand -- Chapter 9: The Ugandan Way of Living and Dying -- Chapter 10: Punjabi Extended Family Hospice Care -- Chapter 11: Seeking Physical, Cultural, Ethical, and Spiritual "Safe Space" for a Good Death: The Experience of Indigenous Peoples in Accessing Hospice Care -- Chapter 12: Caring for Children in Hospice and Palliative Care: The Spiritual/Religious Dimension -- Chapter 13: Interfaith Chaplaincy in Hospice Palliative Care -- Conclusion -- Glossary of Terms and Abbreviations -- Contributors -- Index.

Susanne Fleckinger beleuchtet das Verhältnis zwischen haupt- und ehrenamtlich Tätigen in Hospizarbeit und Palliative Care. Hierzu befragt sie die beteiligten Akteure und geht der Frage nach, welche Bedeutung dem Ehrenamt in den unterschiedlichen Versorgungsbereichen zukommt. Im Ergebnis wird deutlich, dass sich Haupt- und Ehrenamt zwar durchaus ergänzen, zugleich aber grundsätzlich unterschiedlichen Handlungslogiken folgen. Eine gelingende Zusammenarbeit scheint vor allem dann möglich, wenn diese zum Gegenstand der kontinuierlichen Aushandlung der Sorgepraxis in der konkreten Einrichtung gemacht wird. Dafür allerdings ist es notwendig, dass der Zusammenarbeit von Ehrenamt und Hauptamt mehr Raum im Rahmen der Aus- und Weiterbildung eingeräumt wird. Der Inhalt Zur historischen Kontinuität der Hospizidee Entwicklung der modernen Hospizarbeit und Palliative Care Das Verhältnis von Ehrenamt und Hauptamt Institutionalisierung und Professionalisierung des Ehrenamtes Perspektiven der Zusammenarbeit von Haupt- und Ehrenamt Die Zielgruppen Dozierende und Studierende der Pflegewissenschaft, Medizin, Public Health, Palliative Care und Sozialen Arbeit Ehrenamtliche und Hauptamtliche in Hospizarbeit und Palliative Care Die Autorin Dr. Susanne Fleckinger ist wissenschaftliche Mitarbeiterin und Universitätslektorin am Fachbereich Human- und Gesundheitswissenschaften der Universität Bremen

Background: a wide range of palliative care services has been implemented in Catalonia over the past 20 years. Quantitative and qualitative differences in the organization of palliative care services between districts and settings can result in wide variability in the quality of these services, and their accessibility. Methods: we implemented a benchmark methodology to compare dimensions of care and organization, to identify aspects requiring improvement, and to establish indicators to measure progress. The overall aim was to generate a consensus document for submission to the Department of Health (DoH) of the Government of Catalonia. Results: a Steering Committee convoked a meeting in Barcelona (Catalonia, Spain) and representatives (n = 114) of all the 37 districts within our health care remit (rural, urban, intermediate, and metropolitan) and settings of the health care system (hospitals, social health centers, community, and nursing homes) attended and took part in plenary sessions and workshops to define areas that, in their experience, were considered weak. Twenty-one consensus recommendations achieving high levels of consensus were generated for submission to the DoH. These included the formal definition of the model of care and organization of palliative care services at all levels in the region, the implementation of measures for improvement in different settings and scenarios, systems for continuous care, and facilities for the continuing training of health care personnel. These proposals have since been implemented in a trial region and, depending on the outcomes, will be applied throughout our health service. Conclusion: we conclude that benchmark methodology is valuable in acquiring data for use in improving palliative care organization for patients' benefit.

Informing both research and practice, Data Ethics and Digital Privacy in Learning Health Systems for Palliative Medicine brings attention to an important issue that lies at the intersection of medicine, science, and digital technology and communication.