Dame Cicely Saunders created the hospice movement to be a voice for the voiceless. Those needing palliative care needed someone to speak for them and ensure they received the care they needed and deserved. Today, more than forty years later, the voice of the patient and family are in danger of being lost. This research aimed to discover what patients and their families thought were the most important priorities in palliative care. If hospices, and any other facility that cares for the dying, are to give the care that patients and their families need then the research in this thesis shows benefit to those patients and families if asked to identify what are their needs. If palliative care is to be truly holistic we need to find out from patients, and from their families, what they believe is important. Using purposeful sampling, five patients and five family members were recruited from a hospice in-patient unit. In-depth interviews with open-ended questions were conducted with participants who were asked to share what had affected their care, or their relative’s care, while admitted to the hospice. These interviews were recorded and transcribed in a qualitative descriptive study to identify and analyse what these participants described as the ‘important thing’ in palliative care. Specific, tangible detail was sought in order to define the ‘essence’ of palliative care as determined by those receiving it. Thematic analysis revealed four key themes and associated sub-themes relating to: the people who work in a hospice; the environment; philosophy and holistic care. This research enables those caring for the dying in any context, to use the information shared by these individuals as guidance to enhance the care they offer to a dying person so that their final days may be more tolerable, even perhaps pleasurable: to help them ‘live until they die’.

Thesis (Ph.D.) - University of Queensland, 2005. / Includes bibliography.

No / Sheila Payne and colleagues examine the differences and similarities in end-of-life care provided in different countries which, while broadly based on the same models, varies according to resources, cultural attitudes and public health policies This article introduces palliative care and palliative care nursing. It goes on to consider models of palliative care delivery and provide a more detailed account of the three elements of palliative care nursing–working directly with patients and families, working with other health and social care professionals to network and co-ordinate services, and working at an organisational level to plan, develop and manage service provision in local, regional and national settings. It concludes by detailing the challenges for palliative care nursing and outlines a possible way ahead.

- / This article provides an academic and professional context for the articles written for this special issue. It discusses 4 broad questions often asked about the public health approach to palliative care: what is the evidence for the effectiveness of the approach?; will this approach embedded inside palliative care services deliver the kinds of social changes needed to address the social epidemiology of living with life limiting illness, long term caregiving and grief and bereavement?; Is recent interest in this approach simply all about cost-savings for governments?; and will an emphasis on health promotion and community development subtract from efforts to increase or maintain clinical supports at the end of life?

<p>The aim of this explorative study was to understand the experiences and challenges of primary caregivers providing palliative care to women with advanced breast cancer. This study was conducted within a qualitative research design framework underpinned by phenomenology. The significance of this study was to contribute to the knowledge that would help care professionals understand the experiences and challenges that primary caregivers face whilst providing palliative care to women with advanced breast cancer.</p>

Purpose: Examine outpatient providers' perceptions of palliative care education in increasing their understanding, knowledge of resources, and intent to refer. Research questions/goals: 1) Increase provider understanding about palliative care and the benefits that patients can receive as a result of early referral; 2) Increase provider knowledge of palliative care facilities and resources within VHSO; 3) Increase provider intent to use the referral process for patients in need of palliative care. Setting: Veterans Healthcare System of the Ozarks, Fayetteville, Arkansas. Participants: 14 outpatient providers within VHSO; 8 MDs, 4 NPs, and 2 PAs. Methods: Descriptive research study consisting of an education session, discussion, and completion of a demographics form and evaluation questionnaire. Results: Questionnaire scores: Goal 1) 4.9 (SD=1.27)/6; Goal 2) 5.07 (SD=1.1)/6; Goal 3) 5.1 (SD=1.1)/6. Open ended question themes: 1) 21.4%: palliative care was an "umbrella"; 35.7%: early referral improves outcomes; 21.4%: treatment plan can include curative therapies; 2) 28.6%: open group discussion; 14.3%: training opportunities; 21.4%: multidisciplinary team approach. 3) 35.7%: screenshots of the referral process; 14.3%: individual comments for the care plan; 21.4%: open discussion regarding referrals. 4) 14.3%: more about how to accommodate homebound Veterans; 28.6%: more about telehealth opportunities; 21.4%: more information on communication tactics. Conclusions: There is a knowledge deficit among outpatient care providers in regards to palliative care. The providers found this education session informative, beneficial, and increased their intent to initiate palliative care referrals.

Progressive Neuromuscular Diseases (PNDs) are relentless, debilitating, incurable diseases that cause nerves and muscles to atrophy. A large portion of the population who experience PNDs are adolescents. These adolescents progressively lose physical abilities and increasingly rely on caregivers at a time in their life when, paradoxically, normative adolescent development prescribes a move towards independence and autonomy. There is little research examining this experience from the adolescents’ perspectives. The purpose of this interpretive phenomenology study was to understand the experience of adolescents with PNDs when making decisions in relation to their health. Data collection consisted of 10 semi-structured interviews with 5 adolescents, 16-19 years of age, who were living with a PND (two interviews with each of the 5 participants). These interviews lasted an average of 60 minutes. Data were analysed using interpretive strategies, including the development of themes using exemplars, and paradigm cases. Findings revealed that the adolescents separated health decisions into two distinct categories, Big and Small, based upon level of perceived risk and physician involvement. Big referred to high-risk decisions, included physicians, and involved a medical/surgical procedure or intervention. Small referred to lower risk decisions, did not include physicians, and involved personal care. An expert emerged with each category of decision. In Big Decisions, the physician was perceived as the expert who made recommendations, provided information, and introduced the decision. In Small Decisions, the adolescent perceived himself as the expert. With Big Decisions, the physician expertise was typically respected, and the recommendations were followed. With Small Decisions, parents typically respected adolescent expertise. However, the adolescents commonly experienced not having their expertise respected by health professionals. In the context of Big and Small decisions, the theme Joint Ownership captured the sense that with the progressive loss of abilities and resulting dependence, the physical disability and illness were not experienced solely by the adolescent but by the adolescent and his parent(s). As the parent(s) and adolescent shared these experiences, the decisions, ownership of the physical body, and the responsibility for the care of the body also became shared. The findings suggest that health care professionals need to include the adolescents in the Small Decisions, and also acknowledge that adolescents may desire parental involvement in Big Decisions.

Studien hade till syfte att beskriva faktorer som var av vikt i bemötandet av patienter inom palliativ vård och genomfördes som en systematisk litteraturstudie. Artiklar har sökts i olika databaser samt via manuell sökning. Sökorden som har använts var palliative care, caring, patients, end-of-life, hospice, cancer, needs, support och experience. Antal granskade artiklar var 11. Granskningen resulterade i fyra faktorer; information, kommunikation, känslomässig dimension och delaktighet i vården. Faktorerna omformulerades till teman enligt följande: Vikten av kunskap för att kunna ge information, Kommunikation mellan vårdpersonal och patient, Känslor som kan uppstå i livets slutskede och Patienternas delaktighet i vården. Informationen var viktig för att patienten skulle veta vad sjukdomen innebar och vad som kom att hända i framtiden. Vårdpersonalen fick känna av hur mycket information patienten kunde ta emot och hur mycket de ville veta om sjukdomen. Upprepning av informationen fick ges för att patienterna inte tidigare kunde smälta all information som de fått. Kommunikationen var grunden för att ett bemötande skulle kunna uppstå. Med kommunikationens hjälp byggdes relationer och förtroende upp mellan vårdpersonal och patienter, vilket var en förutsättning för att ge en god omvårdnad. Det var svårt för vårdpersonal som inte var specialiserade inom palliativ vård att kunna bemöta patienterna på ett tillfredsställande sätt. Patienterna upplevde att de fick en bättre vård av den specialiserade vårdpersonalen. Patienterna upplevde många olika känslor under sjukdomstiden. Frustration och maktlöshet för sjukdomen var vanliga upplevelser. Det var svårt för patienterna att släppa kontrollen över sin situation. Frustrationen upplevdes på grund av att de fick be vårdpersonalen om hjälp med de saker som de själva hade klarat av tidigare. Delaktighet i vården var en annan faktor som patienterna upplevde som viktig. De fick då vara med och bestämma över sin situation och sitt eget liv så långt det var möjligt.

Thesis (M.P.H.)--University of Hong Kong, 2009. / Includes bibliographical references (p. 79-92).

Protecting and promoting patients’ and families’ sense of dignity at end-of-life is an indispensable goal, one that palliative care professionals have pursued unceasingly in the modern era. While researchers have made several attempts to uncover the intricate meaning and constitution of dignity and dignified end-of-life care in recent years, their works are solely based upon a Western individualistic paradigm that may not be applicable in Eastern collective societies. This limitation underscores that the existing body of knowledge is missing an important articulation on the Chinese experience. Thus, to fill this important knowledge gap, this study has applied ‘micro’, ‘meso’ and ‘macro’ levels of inquiries to attain a holistic understanding of dignity and dignified end-of-life care in the Hong Kong Chinese context. Through meaning-oriented interviews with 18 Chinese palliative terminal cancer patients and 18 of their family caregivers, as well as four interpretive-systemic focus groups with 30 key informants involved in a novel end-of-life care pathway programme (N=66), a total of 31 themes that elucidate dignity and dignified end-of-life care have been generated. These 31 themes are carefully organized into 9 categories that reflect the Individual, Familial and Institutional dimensions of dignity at end-of-life. First, the Individual dimension includes: 1) “Personal Autonomy”, which consists of Regain Control, Self-Sufficiency, Informed Care Decisions and Future Planning; 2) “Family Connectedness”, which consists of Express Appreciation, Achieve Reconciliation, Fulfill Family Obligations and Strengthen Family Bond; and 3) “Spiritual Plasticity”, which consists of Enduring pain, Spiritual Surrender, Moral Transcendence and Transgenerational Unity. Second, the Familial dimension involves: 1) “Social Agency”, which comprises of Caregiving Resources, Caregiver Assertiveness and Communicative Action; 2) “Family Integrity”, which comprises of Mutual Support, Kinship Involvement and Family Adaptability; and 3) “Filial Compassion”, which comprises of Compassionate Duty, Reciprocal Relationship and Emotional Connection. Third, the Institutional dimension entails: 1) “Regulatory Empowerment”, which encompasses Interdisciplinary Teamwork, Resource Allocation, Culture Building and Collaborative Policymaking; 2) “Family-Centered Care”, which encompasses Continuity of Care, Family Conference and Care Partnership; and 3) “Collective Compassion”, which encompasses Devotion in Care, Empathic Understanding, and Compassionate Action. These 9 categories and their respected 31 themes are clearly interrelated and embedded within the political, cultural, and spiritual contexts of society, highlighting the intricate interplay of systemic structure and social discourse for promoting dignity at end-of-life. These findings have further led to the development of the ‘Patient-Family Model of Dignified Care’ and the ‘Interpretive-Systemic Framework of Dignity at End-of-Life’. The former provides a new clinical protocol for identifying and evaluating the strengths and weaknesses within the personal, interpersonal and transpersonal functioning of the patient-family dyads in Chinese end-of-life care. The latter offers a public health roadmap for social change that accentuates the necessity for a collective consciousness of compassion in pushing forth the ultimate ideal of living and dying with dignity in Hong Kong. Based on this body of work, recommendations for patient-family care at end-of-life, expansion of community-based palliative care, and development of palliative long-term-care for ensuring quality and equality in the care of dying patients and their families are discussed. / published_or_final_version / Social Work and Social Administration / Doctoral / Doctor of Philosophy