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No / Buried deep inside the debates on how we should die - with or without palliative care or euthanasia -and where we should die - in hospitals, nursing homes, hospices or in our own homes—lie two strange and persistent facts. Few people understand the dominant ways we die and the challenges most people face because of those types of dying. Many of the social science monographs and health policy debates focus on cancer dying or dying in total institutions. Yet cancer is only one disease that kills, and many people live out their dying with several fatal illnesses. Though many people become dead in total institutions, the longer part of living-while-dying is outside of custodial care. Between a popular media fed with mere clinical insights about dying and a social science tradition of investigations that have taken almost their every lead from health care institutions, major myths and biases do grow. And basic insights from history, cultural sociology and epidemiology continue to be overlooked. This chapter seeks to redress these oversights by describing the key social trends, and the personal challenges thrown up by them, for today’s dying populations. Any basic sociology of dying needs to grapple with these trends because they are the meeting places between recent history and identity for today’s dying person. I describe seven major social trends that are key determinants of the cur- rent social experience of dying. These are: (1) the complicated nature of dying trajectories; (2) the seduction of medical rescue as a broad cultural value; (3) the myth of institutionalization; (4) the social manufacture of horror for con- temporary images of dying; (5) the rise of single-person households; (6) the paradoxical trend towards promoting dying for resource-poor countries while promoting sudden death in resource-wealthy ones; (7) and the current inability to address the problem of destination for a fundamental life-course rite of passage such as death and dying.

I mötet med patienter i livets slut övergår sjuksköterskans handlingar från botande till lindrande. Bakgrunden beskriver begreppet hälsa som ett flerdefinierbart begrepp och sjuksköterskans roll i vården. Den palliativa vårdens förhållningssätt och de sex S:en beskriver att sjuksköterskan ska utgå från patientens livsvärld för att få kunskap om hur livskvalité och hälsa kan främjas i livets slut. I problemformuleringen beskrivs vikten av att se patienters behov och önskningar, det är deras berättelser som bör ligga till grund för sjuksköterskans agerande. Syftet var att belysa vad patienter upplever som hälsobefrämjande omvårdnad vid livets slut. Metoden som använts är litteraturstudie och resultatet är funnet i åtta vårdvetenskapliga artiklar. Resultatet redovisades i tre teman som uppfattades som viktiga för att uppleva välbefinnande och hälsa i livets slut. Hälsofrämjande relationer beskriver närståendes betydelse och sjuksköterskans förmåga att ha både en professionell och personlig roll. Möjliggöra delaktighet, genom god kommunikation och att patienten har kontroll skapas delaktighet i vården. Möjliggöra ett gott liv, genom symtomkontroll och att bevara det vanliga, främjas en känsla av värdighet för patienter i livets slut. Betydelsen av sjuksköterskans roller framkom i diskussionen, vikten av att vara både personlig och professionell. Medvetenhet krävs hos sjuksköterskan för att se patientens verkliga behov. Det visade sig att närstående inte enbart var något positivt för patienterna, de känner ett ansvar för sina närståendes välmående och det kan innebära ytterligare en påfrestning för den som är sjuk.

Equity of access to healthcare services is a concept which underpins current UK health policy. However evidence suggests that this is not achieved within community palliative care. Referrals can be tardy or not made at all. Most literature describes inequality in service utilisation, but does not aid understanding of why such inequalities exist. There is little research exploring the processes underpinning referral making rather than the outcomes of referrals such as service utilisation. The aim of this research was to investigate the influences on referral decisions made within community palliative care services. A qualitative case study strategy was chosen as the research approach as it provided a framework for facilitating the incorporation of multiple perspectives in a complex context, in a field where there has been little previous research, and where there is little theory to guide the investigation. Three cases (Primary Care Trusts) were studied. Data collection used multiple methods (interviews, observation and documentary analysis, as well as mapping and profiling the palliative care services provided within the cases) from multiple perspectives (general and specialist palliative care professionals, managers, commissioners and patients). Detailed data analysis followed a framework approach, comparing and contrasting patterns within and across cases with existing and developing theoretical propositions. Two core influences on the way health care professionals made referral decisions were found. First, their perception of their own role in providing palliative care. Autonomous professionals made independent judgements about referrals, influenced by their expertise, workload, the special nature of palliative care and the relationship they developed with patients. Second, their perception about those to whom they may refer. Professionals needed to know about services to refer, and then made a complex judgement about the professionals involved and what they could offer the referrer as well as the patient. These findings indicate that many more factors than an assessment of patients' clinical need affect referrals within community palliative care services. It appears that personal, inter-personal and inter-professional factors have the potential to shape referral practices. It may be that the combination of these factors has an influence on equitable access to community palliative care services. Practitioners could be more explicit about referral or non-referral rationales, and policy makers take account of these complex influences on referrals rather than just mandating change.

This study focuses on the current issues regarding the provision of clinical supervision for palliative care nurses. NICE (2004) recommendations stated that the task of supervision should be undertaken by „Level 4‟ practitioners such as clinical psychologists or psychiatrists. Palliative care nurses are recognised to experience high levels of stress due to the emotionality of their role. However there appears to be little understanding of how they cope with this aspect of their role. Self care is promoted as a useful strategy; however this is thought to have limitations due to the questionable ability for an individual to objectively and accurately assess their own mental and emotional state. Clinical supervision has been attempted with palliative care nurses but this appears to focus on the internal world of the nurse rather than the interaction between nurse and patient. This study employed a staff survey, including a demographic questionnaire, the Copenhagen Burnout Inventory and the General Health Questionnaire, followed by individual interviews and focus groups analysed using thematic content analysis. Participants were recruited from two teams within one cancer network. Results showed that there was an incidence of both high stress and psychiatric morbidity within the sample. Provision of clinical supervision was shown to be inconsistent across the two teams. Although there was recognition that clinical supervision would be beneficial, there was a certain amount of confusion regarding the concept as well as suspicion about the „real‟ agenda. These factors appeared to work together to produce a situation in which clinical supervision was not being provided or accepted in a way that would maximise its efficacy as its application was inconsistent with the theoretical basis. In conclusion, in order to better support palliative care nurses with the difficult aspects of their role, it was suggested that a more structured and consistent picture of clinical supervision was provided. This would enhance their practice, support their emotional needs and protect the patients under their care.

Research has shown that African-Americans are least likely to receive adequate palliative interventions leading to concerns about the quality of health care in general and palliative care in particular for this population. Acknowledging patient preferences are essential in administering quality health care especially when a patient's condition is terminal. But when African-Americans are least likely to complete living wills or durable power of attorneys for health care and more likely to continue to request life sustaining treatments when near death, conflicts between patients and medical professionals can result.<br> Recognizing patient spirituality and addressing their spiritual needs can help the patient, family or surrogate decision-maker come to terms with, if not make sense of, their life-threatening illness and eventual mortality. This may be especially salient for African-Americans because of their history of victimization of racial discrimination and ensuing overwhelming challenges with sometimes tragic consequences. Models and approaches used to assess the spirituality of African-American patients must be culturally appropriate and performed by professionals with interpersonal communications skills and an awareness of how their implicit bias can impede the integrity of the clinician-patient interaction. / McAnulty College and Graduate School of Liberal Arts; / Health Care Ethics / PhD; / Dissertation;

A research report submitted to the Faculty of Health Sciences, University of the Witwatersrand, in partial fulfillment of the requirements for the degree of Master of Science in Medicine in the branch of Anaesthesiology Johannesburg, 2014 / BACKGROUND: Chronic pain is a biopsychosocial phenomenon that can have a profound impact on people’s lives. Internationally, chronic pain is being recognised as a health priority. South Africa is a developing country with limited resources that are directed at catering for a growing population where life threatening conditions like Human Immunodeficiency Virus (HIV)/Acquired Immunodeficiency Syndrome (AIDS), violent crimes, and poverty predominate. Auditing the Helen Joseph Hospital Pain Management Unit (HJHPMU) is a step towards addressing the paucity of epidemiological data on chronic pain in South Africa. Clinical records are a basic clinical tool that also serves as a medicolegal document. It is essential that these records are legible and complete. AIM: The aim of this study was to describe the profile of chronic pain patients at the HJHPMU for 2011 and to determine the adequacy of record keeping. METHODOLOGY: A retrospective, contextual, descriptive study design was utilised. A consecutive sampling method was used and the study sample included the HJHPMU database and all files of adult patients that attended the HJHPMU during the period January 2011 to December 2011. Patient files were excluded from the audit if insufficient data were found. Descriptive statistics were used to analyse the data obtained during the study. Frequencies and percentages have been reported. A Chi-­‐squared test was utilised to analyse any association between gender and type of pain. RESULTS: There were 475 patients in the HJHPMU database for the year 2011 and 190 of these patients were excluded from the study due to illegible handwriting, duplication in the HJHPMU database, missing data such as no hospital number recorded, no initials to a surname, or the file not found. This resulted in a study sample of 285 patients. The HJHPMU had 215 (75,44%) pre-­‐existing patients and 70 (24,56%) new patients during the year 2011. The preponderance of patients were in the 41-­‐60 year age group, with 146 (51,23%) patients presenting in this age group. Of the 285 patients in the study, 91 (31,93%) patients were male and 194 (68,07%) were female. The most common complaint was of lower back pain (LBP). There were 97 (34,04%) patients with a diagnosis of spinal pain and 59 (20,70%) with Failed Back Surgery Syndrome (FBSS). There were 164 patients with a relevant surgical history. This included 46 (28,05%) patients that had been involved in a traumatic event, 47 (16,49%) patients that had surgery other than spinal surgery that was relevant to their pain diagnosis, and 71 patients (43,29%) that 4 had spinal surgery that was relevant to their diagnosis. A Chi-­‐squared test was performed on the relationship between gender and the type of pain, and a p value of 0.001 was found. When relating the type of pain with age, mixed pain and nociceptive pain was found to be most common in those aged >60 years (n=26), whereas neuropathic pain was found to be most common in the 41-­‐60 year age group (n=43). CONCLUSION: With the limited data from this study, the profile of patients with chronic pain in South Africa seems to not differ grossly from data collected internationally. The most pertinent finding of this study is the inadequacy of record keeping.

The aim of this study was to explore the experience of carers of family members dying at home with particular reference to their expectations and preparedness for the dying process. It was a qualitative, longitudinal study which initially followed a grounded theory approach. However, as a theatrical metaphor became apparent from the data the approach changed to dramaturgical analysis. Face to face semi-structured interviews were conducted with fifteen carers before and after the death of their family member. Carers were found to be performing a leading role in home palliative care but they experienced a universal sense of uncertainty and of being unrehearsed for their role in the dying process. They were reluctant to seek information to give them a script for their performance because it was painful and difficult to contemplate their family member dying. They needed the direction of health professionals and the support of paid carers but had variable experiences of these services. Carers’ performance types were also variable but tended to be towards the combative or the pragmatic end of a continuum. Their experience was illuminated through the dramaturgical metaphor of a play called the Carer’s Initiation. The climax of the play was the death of the family member followed by the finale in which they watch over the body until it is removed and they finally face a future without their family member. The carer’s initiation highlighted policy and practice implications for improving the preparation and support of carers for the dying process.

Purpose/Objectives: To explore the experience and processes of hope for older women who are bereaved palliative caregivers and to develop a substantive theory of their hope experience.<p> Design/Research Approach: Qualitative, constructivist grounded theory <p> Setting: Participants homes in a small Canadian city<p> Sample/Participants: Thirty interviews with thirteen women, ages 60-79, within the first year of bereavement after providing care to a spouse with terminal cancer, also twelve hope diaries<p> Methods/Methodologic Approach: Open-ended, in-depth audio-taped interviews, hope diaries, transcribed verbatim and analyzed using constant comparative analysis<p> Main Research Variables: Participants descriptions of their experience of hope Findings: Participants defined hope as a gradual process of regaining inner strength and building self-confidence, to make sense of their totally changed situations. They were learning to stay positive, and move ahead with their lives. Hope was very important to the participants. The participants main concern was losing hope which they dealt with by searching for new hope through finding balance, finding new perspectives, and finding new meaning and purpose. The theoretical model resembles a spiral and takes place within a social context.<p> Conclusions: Older women who are bereaved after caregiving for a palliative cancer patient are at risk for losing hope and require support as they search for new hope and move through the complex processes of bereavement. <p> Implications for Nursing/Interpretation: Health care professionals can provide appropriate and effective care that facilitates positive and healthy bereavement outcomes by monitoring bereaved palliative caregivers at risk for losing hope and supporting them as they search for new hope to find their own way through bereavement.

The population demographics of the greater Toronto Area are rapidly changing, with visible minorities comprising 43% of the GTA, and 10% of the total adult population of Canada. It is incumbent upon the health care sector to accommodate these changes in a culturally competent manner. Health care and culture intersect in the most delicate of ways during the last stages of life. The health care system must ensure that minorities have an equal access to end-of-life health care services and that their individual cultural beliefs and values are respected by culturally competent health care providers. Hence, this thesis examines the current state of cultural competence in hospice and palliative care in the Greater Toronto Area. This study will show the strengths and limitations of the current hospice care in terms of providing culturally competent care. To explore this topic in greater detail, my research is guided by the following questions: 1) What is the current state of culturally competent care in a hospice setting? 2) What are the challenges to providing culturally competent care in a hospice in the Greater Toronto Area? 3) What are some possible strategies for increasing competency within a hospice setting? To explore my research questions fully, I provide a critical analysis of six cultural competency theories, while integrating a social determinants of health framework, focusing on the theory of social exclusion and minority health care. This case study analysis is enhanced by the 14 in-depth interviews of hospice volunteer participants and 1 administrator. There are six major findings in this research. First, volunteer participants encountered cultural clashes when their levels of cultural competency were weak. Second, volunteer participants revealed there was a lack of adequate cultural competency training with the hospice. Third, volunteer participants gave abundant suggestions for improving cultural competency training. Fourth, volunteer participants perceived the hospice to be unsupportive of some of their needs. Fifth, the lack of ethnic, cultural and linguistic diversity of the hospice volunteer participants was noted. Last, the lack of religiosity amongst the volunteer participants was surprising. This research is significant for its Canadian hospice volunteer focus and the findings will be beneficial in practice for patients, their families, volunteers, and other health care providers, by providing the knowledge and tools necessary to enhance their level of cultural competency.