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Those who have known an individual with a chronic medical condition or someone that has been diagnosed with a terminal illness have experienced the physical and emotional toll these diagnoses have on both patients and their loved ones. Medical providers encounter these situations daily and are often responsible for assisting the patient and their family in the decision-making process. The specialty of Hospice and Palliative Medicine was created specifically with these difficult, but very common, situations in mind. Even though the concept of palliative care has become mainstream and its practice is considered standard of care in many situations, it continues to be misunderstood, misrepresented, and underutilized, despite providing measurable benefits to patients, families and the healthcare system. This paper explores two systemic barriers to palliative care that contribute to this problem and highlights how race, cultural mistrust, and a long history of racial disparities in health care work together to undermine the effective delivery of palliative care. / Urban Bioethics

Background: In the face of overwhelming need and increasingly scarce resources, the humanitarian charge of “saving lives and alleviating suffering” is often reduced to simply saving lives. In 2014, World Health Assembly Resolution 67.19 called for the strengthening of palliative care as a key component of comprehensive care. However, even when palliative care is the only available option (ie. 2014-2015 Ebola Crisis), there is little evidence showing it is available in the field. More research is needed to understand this dissonance between policy and practice, and to ensure that humanitarians are providing ethical and contextually appropriate care. Methodology: Twelve individual, in-depth, semi-structured interviews were conducted in English and French with humanitarian healthcare policy makers from North America, Europe, and the Middle East, average 10+ years of experience representing various international organizations. Interviews were transcribed and coded using NVivo11 and an interpretive description framework. Findings: Participant comments suggested the existence of an institutionalized rescue culture, characterized by the fear of failure, equating of death with failure of the humanitarian healthcare professional, and a resultant systemic devaluation of palliative- type care in disaster contexts. The indoctrination of this culture may begin as early as medical school, and manifests clearly in the lack of consistent nomenclature and awareness of palliative care, treatment of palliative-triaged individuals, and resources allocated to palliative care in humanitarian contexts. Palliative care provision is a moral obligation as a final bastion of the human right to dignity and to health. Discussion & Conclusion: In order for palliative care to be integrated into the humanitarian mandate, a significant cultural shift must first take place. The findings of this thesis and the larger Humanitarian Health Ethics study will provide key guidance for the adoption and adaptation of policies that help humanitarians maintain the dignity of individuals in their most vulnerable moments. / Thesis / Master of Science (MSc)

Bakgrund: Det finns ett stort behov av palliativ vård i både Sverige och globalt och detta behov kommer att växa i takt med att bland annat befolkningen blir äldre. Palliativ vård syftar till att öka livskvaliteten och lindra lidandet för både patienter och anhöriga i livets sista skede. Patienter i behov av palliativ vård finns inom många olika verksamheter och eftersom sjuksköterskan har ett huvudansvar för omvårdnaden så är det viktigt att dessa har ordentlig kunskap.  Syfte: Syftet med litteraturöversikten var att beskriva hur sjuksköterskor upplever att vårda patienter i livets slutskede.Metod: En litteraturöversikt med 10 publicerade originalartiklar. Insamlingen av artiklar skedde i databaserna PubMed och CINAHL Complete och artiklarna analyserades utefter Fribergs metod. Resultat: Resultatet inkluderade tio artiklar av kvalitativ metod och analysen av dessa resulterade i fyra teman; Anhöriga närvaro påverkar sjuksköterskan, Ett känslofullt arbete, Att hantera frågor om liv och död samt Upplevda brister och hinder inom den palliativa vården  Slutsats: Att arbeta med patienter och deras anhöriga i livets slutskede är ett känslosamt och utvecklande arbete. Det är utvecklande både på en professionell grund men även personligt. Sjuksköterskorna upplevde både positiva och negativa känslor i sitt arbete och arbetet fick dem att fundera över sin egna dödlighet. Ett flertal hinder och utmaningar påverkade sjuksköterskorna i deras arbete. / Background: There is a great need for palliative care both in Sweden and globally, and this need will continue to grow as the population ages, among other factors. Palliative care aims to improve the quality of life and alleviate suffering for both patients and their families in the final stages of life. Patients in need of palliative care are found in various care settings, and since nurses have primary responsibility for caregiving, it is important that they have adequate knowledge. Aim: The purpose of the literature review was to describe nurses' experiences of caring for patients in the end-of-life stageMethod: A literature review with 10 published original articles. The collection of articles was conducted in the databases PubMed and CINAHL Complete, and the articles were analyzed using Friberg's method. Results: The result comprised ten articles of qualitative methodology, and the analysis of these resulted in four themes: The presence of relatives affects the nurse, Emotional labor, Dealing with issues of life and death and Perceived deficiencies and obstacles within palliative care. Conclusions: Working with patients and their families at the end of life is an emotional and developmental endeavor. It is developmental both professionally and personally. Nurses experienced both positive and negative emotions in their work, and it led them to contemplate their own mortality. Several obstacles and challenges affected the nurses in their work.

Background: Palliative care aims to improve the quality of life for patients with limited time remaining. In the transition to end-of-life care, the complete focus is on relieving symptoms and easing the patient's pain. It has emerged that patients experience inadequate communication from nurses during their hospital stay, while nurses perceive insufficient knowledge regarding conversations with relatives. Engaging with relatives' experiences at the end of life contributes to a greater understanding of their preferred approach. Aim: To create an overview of relatives' experiences in palliative care. Method: Involves a general literature review that included eight qualitative and four quantitative articles. Results: The articles results pointed to three main themes: the importance of communication for relatives, the impact of the care environment on their palliative care experience, and how the illness affected life outside of caregiving. Conclusion: Insufficient support and communication were crucial factors in relatives the end-of-life experiences. Positive health outcomes were observed in relatives receiving support, information, and discussions in the end-of-life stage. Relatives experienced that the attitude of nurses, influenced their well-being, leading to difficulties in balancing everyday life while maintaining strength in front of the patient.

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No / Fatigue is a complex symptom commonly experienced by people with life-limiting illnesses. It has been identified in patients with, for example, cancer, heart failure, respiratory conditions, acquired immunodeficiency syndrome and renal failure. It is often rated by patients as having a greater effect on quality of life than pain. This article will explore the manifestations and consequences of fatigue. It will propose a minimum standard for its assessment and management and describe the implementation and evaluation of an audit, conducted in a hospice environment, designed to evaluate achievement of this standard. Although this audit was carried out in a hospice setting, the aim of the article is also to raise awareness of fatigue in all healthcare settings and to improve the assessment of this debilitating symptom.

No / This study explores the experiences of health professionals in managerial roles at various levels in child and adult hospice care in northern England, studying perspectives around managing medical error, the issues that arise, and the challenges faced. A multicentred, descriptive, exploratory design was adopted. The sample comprised 10 hospice managers (five deputy and five senior managers) from four hospices (two adult and two children's) in the north of England. Participants took part in individual semi-structured interviews, which lasted between 45–60 minutes each. Interviews were transcribed and analysed by a team of three researchers, including two health psychologists and one nurse using a qualitative analytic framework. Emerging themes appeared to be inter-related and were ultimately linked to two meta-concepts; underpinning and fundamental to the data, these issues were intrinsically tied to all emerging themes. Primary themes were defined by their explanatory power and regularity. Primary themes highlighted the impact of managing error on management teams at a professional and personal level, the challenges for error management in hospice settings, the use of error management tools, and the conceptualization of blame in these settings. The strong influence of the health-care setting in which an error takes place on the outcomes of an error event for the health professional, managers, health-care organizations, and ultimately patients was evident.

No / Depression in patients receiving palliative and end-of-life care is difficult to distinguish from grief and sadness. However, there are some important distinctions and it is a clinical condition that is treatable and should not be considered a necessary or normal part of the dying process. This article examines the nature of depression and describes the stress vulnerability model of depression, linking it to recent developments in the neurobiology of depression. It also discusses how to distinguish depression from other symptoms that patients may be experiencing.

No / Palliative care for minority ethnic groups remains a poorly accessed and limited area in district nursing. This article outlines a hospice apprentice programme that aims to promote and expand the use of specialist palliative and end of life care services for a South Asian community through increasing access and referrals, improving services by making them more culturally appropriate for black and minority ethnic (BME) people, involving BME people in the delivery of services, and creating better relationships between BME communities and providers