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.

published_or_final_version / Community Medicine / Master / Master of Public Health

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.

A research report submitted to the Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, in partial fulfilment of the requirements for the degree of Master of Medicine in the branch of Radiation Oncology Johannesburg, 2016 / Purpose: To assess the improvement in swallowing status, overall survival and treatment related complications in patients with Carcinoma of the Oesophagus treated with palliative radiotherapy. Methods: A retrospective analysis of patients with advanced squamous cell carcinoma of the oesophagus who were treated for palliation from May 2007 to June 2012 at the Charlotte Maxeke Johannesburg Academic Hospital (CMJAH) was done. Ninety- nine patients received palliative radiation therapy during this period, 63% were male and 37% female with a mean age of 60, 6 years. The predominant site of lesion was middle 3rd (56%) and 86, 9% of patients had lesions more than 5cm in length. Patients received palliative External beam irradiation (EBRT) with or without High dose rate brachytherapy (HDRBT) as per the CMJAH, Department of Radiation Oncology protocol. Results: There was an overall significant improvement in swallowing status (p<0,001). Eighty –four patients (85%) had an improvement in swallowing score after treatment. The effect of treatment was not significant in the relationship between the change in swallowing status and treatment group. Overall mean time to progression was 3, 7 months. The median overall survival was 7, 7 months. The type of treatment did not affect survival significantly, unadjusted (p=0, 31) or adjusted for prognostic parameters (age, sex, length of lesion, site of lesion, and pre-treatment swallowing status) (p=0.29). There were treatment related complications in 32% of cases, consisting of ulcerations (24%), tracheo- oesophageal fistula (5%) and strictures (3%). Conclusion: In patients with advanced squamous cell oesophageal carcinoma, palliative radiotherapy is an effective modality in improving a patient’s dysphagia and thus quality of life. / MT2016

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.

Palliative health care is offered to any patient experiencing a life limiting or life changing illness. The palliative approach includes goals of care, expert symptom management, and advance care planning in order to reduce patient suffering. Complex care can be provided by palliative care specialists while primary palliative care can be given by educated staff nurses. However, according to the literature, intensive care unit (ICU) nurses have demonstrated a lack of knowledge in the provision of primary care as well as experiencing moral distress from that lack of knowledge. In this doctor of nursing practice staff education project, the problem of ICU nurses' lack of knowledge was addressed. Framed within Rosswurm and Larrabee's model for evidence-based practice, the purpose of this project was to develop an evidence-based staff education plan. The outcomes included a literature review matrix, an educational curriculum plan, and a pretest and posttest of questions based on the evidence in the curriculum plan. A physician and a master's prepared social worker, both certified in palliative care, and a hospital nurse educator served as content experts. They evaluated the curriculum plan using a dichotomous 6-item format and concluded that the items met the intent of the objectives. They also conducted content validation on each of the pretest/posttest items using a Likert-type scale ranging from 1 (not relevant) to 4 (very relevant). The content validation index was 0.82 indicating that test items were relevant to the educational curriculum objectives. Primary palliative care by educated ICU nurses can result in positive social change by facilitating empowerment of patients and their families in personal goal-directed care and reduction of suffering.

This thesis examines the management of multidisciplinary teams in a highly innovative environment through a study of multidisciplinary patient care teams in palliative care. It investigates management that enables spontaneous innovation where necessary, yet maintains discipline and compliance with legislation, regulation and policy. To assist the explanation a model of palliative care multidisciplinary team management and operation is developed, building on work described in the continuous innovation and organisational configuration literatures. This thesis describes innovative practices as focusing on changing the organisation’s social potential, when necessary, in order to match changes in an individual patient’s situation. A definition of innovation suitable to this environment is developed here, adapted from the innovation literature. A definition of social potential suitable to this environment is also developed, based primarily in the literature of the socialisation of organisations. In palliative care organisations, care is delivered to the patient and any group of people supporting the patient during the end of life process. Care provided to these supporters, referred to in this thesis as patient-based carers, can extend beyond the death of the patient. Palliative care is more than symptom management during the dying process and can involve an interaction lasting weeks or months between the organisation and patients and patient-based carers. A patient’s situation is described at many levels and involves a number of aspects of the patient’s condition and life; for example medical, social, psychosocial, spiritual and physical. In palliative care, patients and patient-based carers are the major sources of information about their situation and changes to it. This makes them active participants in the care team, although some patients and patient-based carers choose not to take this role. Every patient and every group of patient-based carers creates individualised situations when progressing through their end of life processes, requiring individualised care from teams that can change the membership mix to suit the situation. Palliative care professionals can be members of multiple individual patient care teams simultaneously and teams can include heads of discipline (managers). Multidisciplinary palliative care teams can be managed from inside or outside the team, as the situation requires. Uncertainty pervades this environment and the response is flexibility based in learning and understanding. From the model developed of the management of innovation in the palliative care environment implications for the management of multidisciplinary teams in a highly innovative environment are drawn. / Doctor of Philosophy (PhD)