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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.

Yes / Nausea and vomiting are common symptoms in palliative care. Haloperidol is often used as an antiemetic in this context, although direct evidence supporting this practice is limited. To evaluate the efficacy and clinical use of haloperidol as an antiemetic in nonpalliative care contexts to inform practice, the authors conducted a rapid review of (i) published evidence to supplement existing systematic reviews, and (ii) practical aspects affecting the use of haloperidol including formulations and doses that are commonly available internationally. In nausea and vomiting related to cancer treatment, haloperidol was superior to control in two small studies. In postoperative nausea and vomiting (PONV), two randomized controlledtrials found treatment with haloperidol comparable to ondansetron. In palliative care, an observational study found a complete response rate of 24% with haloperidol (one in four patients) which would be consistent with a number needed to treat (NNT) of 3 to 5 derived from PONV. There remains insufficient direct evidence to definitively support the use of haloperidol for the management of nausea and vomiting in palliative care. However, generalizing evidence from other clinical contexts may have some validity.

Yes / Objective: To investigate timely access to palliative medicines/drugs (PMs) from community pharmacies to inform palliative care service delivery. Design: Mixed methods in two sequential phases: (1) prospective audit of prescriptions and concurrent survey of patients/representatives collecting PMs from pharmacy and (2) interviews with community pharmacists (CPs) and other healthcare professionals (HCPs). Setting: Five community pharmacies in Sheffield, UK and HCPs that deliver palliative care in that community. Participants: Phase 1: five CPs: two providing access to PMs within a locally commissioned service (LCS) and three not in the LCS; 55 patients/representatives who completed the survey when accessing PMs and phase 2: 16 HCPs, including five phase 1 CPs, were interviewed. Results: The prescription audit collected information on 75 prescriptions (75 patients) with 271 individual PMs; 55 patients/representatives (73%) completed the survey. Patients/representatives reported 73% of PMs were needed urgently. In 80% of cases, patients/representatives received all PMs on the first pharmacy visit. One in five had to travel to more than one pharmacy to access PMs. The range of PMs stocked by pharmacies was the key facilitating factor. CPs reported practical issues causing difficulty keeping PMs in stock and playing a reactive role with palliative prescriptions. Confidentiality concerns were cited by other HCPs who were reluctant to share key patient information proactively with pharmacy teams. Inadequate information transfer, lack of CP integration into the care of palliative patients and poor HCP knowledge of which pharmacies stock PMs meant patients and their families were not always able to access PMs promptly. Conclusions: Consistent routine information transfer and integration of pharmacy teams in the care of palliative patients are needed to achieve timely access to PMs. Commissioners of PM access schemes should review and monitor access. HCPs need to be routinely made aware and reminded about the service and its locations. / EJM received research funding from Pharmacy Research UK and Sheffield Teaching Hospitals NHS Foundation Trust as well as support from St Luke’s Hospice, Sheffield. AB and JDM report grants from Pharmacy Research UK during the conduct of the study.

Syftet med examensarbetet var att undersöka begreppet livskvalitet inom palliativ vård utifrån ett arbetsterapeutiskt perspektiv. Som metod användes Walker och Avants begreppsanalys. Tre definierande attribut till begreppet livskvalitet framträdde utifrån analysen: livskvalitet är ett subjektivt mått av vardag, livskvalitet utgår från prioriterade högre värden och livskvalitet är föränderligt. Analysen visade även att möjligheten att engagera sig i meningsfulla aktiviteter i vardagen är ett av de mest grundläggande villkoren för att en god livskvalitet ska kunna uppnås för patienter med palliativa vårdbehov. Livskvalitet påverkas av aktivitet respektive passivitet, men dessa faktorer är också en konsekvens av patientens grad av livskvalitet. En god livskvalitet stimulerar till aktivitet och vice versa, en mindre god livskvalitet leder till ökad passivitet. Resultatet visar att det är av stor vikt att arbetsterapeuter inom palliativ vård arbetar utifrån ett personcentrerat förhållningssätt och sätter patienten i ett aktivitetssammanhang relaterat till den unika individens historia, nutid och framtid. Den föränderliga aspekten av livskvalitet medför även möjligheter att förbättra patienternas livskvalitet.

No

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.