Introduction There is a need in palliative care for development of structured methods to assess quality and support improvement. This need is present both within and outside specialised palliative care. Honest information from physicians is regarded as an important part of palliative care. Information about the transition to end-of-life care (ITEOL), conveyed by physicians to patients, has also been described as a ‘breakpoint conversation’. Quality registers enable monitoring and improvement of quality of care, and clinical research. The Swedish Register of Palliative Care (SRPC) is a Swedish national quality register that collects data from hospitals, hospices, nursing homes and home care, with an end-of-life questionnaire (ELQ) about palliative care content focusing on the last week of life. Aims Study I – The aim was to examine the validity of the ELQ from the SRPC. Study II – The aim was to examine whether participation in the SRPC increases the quality of palliative care over a three-year period regarding eight items in the ELQ. Study III – The aim was to examine whether an educational intervention for physicians and nurses in nursing homes and hospitals increases the proportion of patients who receive ITEOL. Study IV – The aim was to describe how patients with cancer perceive the information they receive from physicians during palliative chemotherapy. Methods Study I – Data from 100 medical records and data from the paper versions of the ELQ filled in at a specialised palliative unit were compared with data reported to the SRPC. Study II – Data from eight items in the ELQ reported to the SRPC from all healthcare units that had reported patients continuously during a three-year period were compared year-by-year with logistic regression. Study III – Two municipalities (in charge of nursing homes) and two hospitals were randomised to receive an interactive half-day course about ITEOL for physicians and nurses. Four hospitals and four municipalities were assigned matched controls. The proportion of patients who received ITEOL before and after the intervention was measured with the ELQ. The effect of the intervention was analysed with a multivariable logistic regression model. Study IV – Fifteen semi-structured interviews with patients with incurable cancer were conducted, transcribed verbatim and analysed with qualitative content analysis. Results Study I – The questions in the ELQ showed a congruity of 22% to 100% when comparing data from medical records with data reported to the SRPC. Eight questions fell below 80%. The paper versions filled in at the unit and the data reported to the SRPC showed a congruity of between 91% and 100%. Study II – The prevalence of six symptoms decreased. The prescription of PRN (pro re nata – ‘as needed’) medications for pain, nausea, anxiety and death rattle increased. A higher proportion of patients died in their place of preference. The patient’s next of kin was more often offered a follow-up appointment after the patient’s death. There was no change in the proportion of patients or next of kin who received ITEOL. Study III – The proportion of patients in the intervention group who received ITEOL increased from 35.1% (during a six-month period before the intervention) to 42.0% (during a six-month period after the intervention). The proportion in the control group increased from 30.4% to 33.7%. The effect of the intervention was significant (p=0.005) in the multivariable model. Study IV – Three categories were disclosed during the analytical process: ‘living with a death sentence’, ‘depending on chemotherapy’, and ‘living with uncertainty’. Conclusions A national quality register has the potential of contributing to quality improvement in palliative care. Study I showed varied validity in the ELQ, implying a need to modify the questionnaire. Study II showed that participation in the SRPC was covariant with quality improvements in end-of-life care over time. Study III showed that more patients received ITEOL after an educative half-day intervention directed to physicians and nurses. Study IV showed that patients undergoing palliative chemotherapy perceived that their disease was incurable and deadly, and that conditions for future treatment and survival were uncertain.

Objectives: The objective of this thesis is to identify and understand communication and information exchange events and their influencing factors that are precursors to medical errors. Methods: Palliative Sedation Therapy is used as a case study to understand how communication and information sharing occur on an in-patient palliative care unit. Data sources were non-participant observation and interviews. Directed content analysis was used to analyze the data, with previously published conceptual models of communication acting as the guides for this analysis. Results/Discussion: Results identified several communication issues that have the potential to act as precursors to medical error at different points in the communication act. A model identifying the points where these precursors can impact communication was created. Conclusion: These results can be used to identify how improvements to communication and information exchange can increase the effectiveness of communication and reduce the likelihood of medical errors occurring.

The aim of this study was to investigate met and unmet palliative care needs for people living with HIV/AIDS in selected areas in Rwanda. The achieve this aim, the study, firstly, identified the palliative care needs of people living with HIV/AIDS, secondly, it identified the health care services available to meet these needs, and thirdly, it determined the extent to which palliative care needs were met.

Spiritual care is considered to be an important aspect of palliative care however; there has been much debate about the definition of spirituality. In this study a broad definition of spirituality has been utilized. Spiritual needs of palliative patients have been identified. Although evidence relating to bereavement outcomes supports the concept of working with family groups in the provision of holistic palliative care, only one family focused model of spiritual care was identified in the literature and no assessment of the efficacy of this model was found. The needs of staff in the provision of spiritual care have also been found to be important. The objectives of this study were to implement a family meeting model of care to assess it’s efficacy as an instrument for the provision of spiritual care from the perspective of palliative patients, family members and palliative care staff and to consider implications, if any for the inclusion of this model of care in the regular palliative care service. This qualitative study was informed by interpretivism and hermeneutic phenomenology. Ricoeur’s Theory of Interpretation was utilized in the interpretation of data. Participants were recruited through two metropolitan palliative care services. Twelve family meetings were facilitated by the researcher. Subsequently forty-seven patients and family members individually participated in in-depth interviews in which they described their experience of the family meeting and any outcomes they had observed. Fourteen staff members participated each in a semi-structured interview in which they described observed outcomes of the family meeting, their process of recruiting patient participants for the study and insights about the suitability of this intervention for regular palliative care services. Interviews were recorded, transcribed and analysed utilizing Ricoeur’s Theory of Interpretation and with the assistance of qualitative data management software. The most commonly identified outcomes for patient and family member participants were: experience of increased openness of communication, positive and constructive feelings and emotions, gaining new understandings and strengthening or renewal of significant relationships. Their experience of the meeting facilitation was generally positive. These outcomes suggest that spiritual care was provided that had not been made available to these people in the current system. Staff reported positive outcomes for patient and family member participants and considered that this type of intervention would meet a need within the palliative care service. Barriers to implementation such as funding priorities, staff numbers and time were identified. This original study has added to our understanding of the value of working with family units in the provision of spiritual care in palliative care services. Further research such as the application of this intervention to larger and less homogenous populations, the evaluation of long term benefits to family members and ways of identifying families most in need of this intervention are needed. The inclusion of this intervention in regular palliative care service would have implications for staff training and support. / http://proxy.library.adelaide.edu.au/login?url= http://library.adelaide.edu.au/cgi-bin/Pwebrecon.cgi?BBID=1345430 / Thesis (Ph.D.) - University of Adelaide, School of Population Health and Clinical Practice, 2008

The following article is a study about counsellors working with terminally ill patients receiving Palliative care. In an effort to understand their role in the Palliative team and how they participate in the care of dying individuals, four counsellors working in four different Palliative hospices in Stockholm were interviewed by using structured interviews. The key questions concern the methods and interventions counsellors use, the risk factors that the job entails, the support they receive and finally their reflections about life and death The literature on the topic was accessed via Ersta Sköndal Högskola College library and Internet database. The results of the study reveal that Palliative Care Approach takes into consideration all aspects of an individual (physical, psychological, social and spiritual). Counsellors are part of a multidisciplinary team and their role is to focus on the social and psychological aspects. They undertake comprehensive assessments of the patient’s context and their coping strategies through the use of psychosocial theories such as Sense of Coherence and Logo therapy. Via their skilled use of core counselling skills they establish close relationships with patients and families. At the same time they are always mindful of keeping the right distance. Counsellors are the receivers of a lot of emotional pain and suffering of patients and families and as such this transference can lead to emotional exhaustion. Access to good support is an essential prerequisite for avoiding burnout. Close encounters with death leads to reflections of life and death. Counsellors need to be well developed and experienced in order to provide good quality palliative care.

This master thesis covers the palliative care in a hospice and a hospital. A lot of seriously ill patients suffering from incurable diagnoses die in hospitals. Therefore the nursing staff come into a close contact with patients near the end of their life.The nurses are in a close contact with the patients. The nurses sense emotions and suffering of dying patients. They sense also feelings of patients in case when improper cure and treatment are applied. Taking care of dying patients is stressing situation. The care covers not only the patient himself but it also includes the communication with the patients´ family and later the bereaved families.The hospital environment is primarily targeted to acute care. The palliative care is at the periphery. In The Czech Republic the palliative care is emerging in hospices mainly. That is the reason why the hospices may serve as a source of inspiration for improvements of the palliative care in other medical institutions.The first part of the theory section describes the main principles of a palliative care. The next part deals with mutual relations between the dying patient, the disease, between the nurse and the family and relatives of the dying patient. The last part deals with the ethical problems in the dying patients nursing, describes the environment where the palliative care is provided and researches the palliative care standards. There are three main goals of the work. The first goal is to compare the level of palliative care standards in different types of medical institutions. The second goal is to evaluate the possibility of providing of the palliative care in the different types of the medical institutions. The third goal is to suggest possibility of the hospital palliative care improvements according to results of the surveys.In the research part an analysis of written documents was performed. The quantitaive part of the research used an anonymous survey. We created two surveys to perform the research. The first survey was targeted to the nursing management and their view of the palliative care provided in the different types of medical institutions.The survey was distributed to 238 relevant medical institutions by electronic means. It consists 6 questions. 3 of them were closed questions, remaining 3 were semiclosed. The survey was opened by 78 respondents of different institutions. 26 respondents took part and finished the survey. According to answers of 26 nursing managers 18 of them agreed to cooperate further and participate in more detailed survey targeted on the nurses who work directly with patients and provide the palliative care. The second survey consisted of 26 questions and 13 of them were closed and 13 semiclosed. The survey was finished by 150 respondents from different medical institutions: hospitals, long term care hospitals and hospices. The data of the both surveys were statistically evaluated.We established 4 hypothesis. H1: The presence of palliative standard depends on the type of medical institution. The hypothesis is valid. H2: The palliative care standards are focused mainly on the basic physical needs providing and less to the spiritual and psycho-social needs providing. The hypothesis was not sufficiently proven. H3: The possibility to provide palliative care by nursing staff depends on the type of medical institution. The hypothesis is valid. H4: From the point of view of nursing staff the palliative care providing depends on the environmental conditions. The answers of the nursing staff take us to the conclusion that the environment influences providing the palliative care. The results of the research shows, that the palliative standards in the medical institutions exist. The standards are focused mainly on providing basic physical needs. There is an evidence that the quality palliative care can be provided in case when the conditions are adequate.

Thesis (MTech (Nursing))--Cape Peninsula University of Technology, 2008. / In South Africa the need for palliative care for the terminally ill is exacerbated by the upsurge of the HIV/AIDS epidemic resulting in more patients being in need of palliative care and the provision of effective pain management as part of providing them with palliative care. Effective pain management requires sound knowledge of the pathophysiology of pain and its treatment. Research found the attitudes, beliefs, and knowledge of healthcare professionals regarding pain management impact significantly on how these professionals practice pain control measures of the terminally ill. Despite the increase in knowledge and technological advances people still die in pain. The upsurge of cancer and AIDS cases require that all nursing practitioners be competent to deliver palliative care. Effective pain management is an integral part of palliative care. South Africa has a nurse-driven health care system where Registered Nurses are expected to become competent in among other health care issues, to manage pain in the increasing numbers of terminally ill patients due to especially AIDS epidemic.

Thesis (MTech (Nursing))--Cape Peninsula University of Technology, 2009. / By the end of 2007 an estimated 22 million people in sub-Saharan Africa were living with HIV/AIDS. Of these, 1.8 million (33%) were children under the age of 15 years. The epidemic has left 11.6 million children orphaned by AIDS. Zimbabwe has an estimated population of 12 million people; its HIV infection rate amongst all adults was estimated at 33.7% in 2002, decreased to 15.1% in 2007: most likely due to extensive prevention campaigns that were held by the Ministry of Health and Child Welfare, in partnership with other stakeholders. Despite the decrease in infection rate, 1.3 million people live with the HIV/AIDS and 140 000 have died. United Nations Programme on HIV/AIDS (UNAIDS) and World Health Organisation (WHO) (2008) reported that of the 1.3 million people 120 000 were children and 1 million children had been orphaned due to AIDS in Zimbabwe. Only 3% of children living with HIV/AIDS were on anti-retroviral therapy (ART) due to lack of antiretroviral (ARV) paediatric formulations drugs. The purpose of the study is to determine what palliative care services are available for children diagnosed with AIDS in Harare, Zimbabwe and whether the services provided meet the palliative care needs of the children. The aims of the study are to: describe the palliative care services offered by the public health sector to children diagnosed with AIDS; describe the extent of palliative care services offered by NGOs sector to children diagnosed with AIDS; describe what children diagnosed with AIDS perceive as their care needs; and to compare the needs of the children with the services provided.

Magister Scientiae (Physiotherapy) - MSc(Physio) / The aim of this study was to investigate met and unmet palliative care needs for people living with HIV/AIDS in selected areas in Rwanda. The achieve this aim, the study, firstly, identified the palliative care needs of people living with HIV/AIDS, secondly, it identified the health care services available to meet these needs, and thirdly, it determined the extent to which palliative care needs were met. / South Africa

Objectives: The objective of this thesis is to identify and understand communication and information exchange events and their influencing factors that are precursors to medical errors. Methods: Palliative Sedation Therapy is used as a case study to understand how communication and information sharing occur on an in-patient palliative care unit. Data sources were non-participant observation and interviews. Directed content analysis was used to analyze the data, with previously published conceptual models of communication acting as the guides for this analysis. Results/Discussion: Results identified several communication issues that have the potential to act as precursors to medical error at different points in the communication act. A model identifying the points where these precursors can impact communication was created. Conclusion: These results can be used to identify how improvements to communication and information exchange can increase the effectiveness of communication and reduce the likelihood of medical errors occurring.