Withholding and withdrawing treatment: practical applications of ethical principles in end-of-life care

No AbstractSouth African Journal of Bioethics and Law Vol. 1 (1) 2008: pp. 24-2

Morphine : friend or foe?

‘it's a bad drug it can kill and even its side effect(s) are very dangerous'. This was the comment of an elderly nurse working in the pharmacy of a local Christian Health Association of Malawi (CHAM) facility when asked about oral morphine. Is this what everyone thought? Is this what you think?Malawi Medical Journal Vol. 20 (4) 2008: pp. 112-11

Neuropathic pain in AIDS patients prior to antiretroviral therapy

Objective. To measure the prevalence, severity and morbidity of neuropathic pain in AIDS patients, prior to the initiation of antiretroviral (ARV) therapy. Design. A prospective, cross-sectional and descriptiveanalytical study. Setting. The Kalafong Hospital HIV Clinic in Pretoria. Subjects. All patients with confirmed AIDS who were referred to the Kalafong HIV clinic to be initiated on ARV therapy during the period August 2006 to March 2007. Outcome measures. Data were collected regarding the presence and severity of neuropathic pain in each subject. Pain of predominantly neuropathic origin (POPNO) was identified using the Neuropathic Pain Diagnostic Questionnaire (DN4). Numerical rating scales (NRS), adapted from the Brief Pain Inventory, were used to measure pain severity and painrelated interference with six aspects of daily living. Results. Of the 354 patients studied, 20.9% (95% confidence interval (CI) 16.8 - 25.2%) had POPNO. This pain was significantly more frequent in patients who were male, had lower CD4+ counts or higher viral load levels, and those on TB treatment. Eighty per cent of patients with POPNO experienced significant pain (worst pain severity ≥5 out of 10 on a NRS). Pain-related interference was highest for enjoyment of life, mood and ability to work. There was a significant positive correlation between severity of pain and pain-related interference for all domains of daily living evaluated. Conclusions. POPNO results in significant suffering and impaired functioning in patients with AIDS. It is therefore imperative that clinicians assess patients with AIDS for the presence and severity of neuropathic pain and manage it, using the most recent evidence-based guidelines. South African Medical Journal Vol. 98 (11) 2008: pp. 889-89

Sexuality in patients with human immunodeficiency virus at Embhuleni Hospital in Mpumalanga province

Objectives: This study explored issues of sexuality in people living with AIDS who were on highly active antiretroviral therapy (HAART).Design: This was a descriptive quantitative study. Data were collected with an administered questionnaire and entered in Excel®. Statistical analysis included frequency tables, summary statistics and 95% confidence intervals.Setting and subjects: The respondents were purposively sampled from the 850 patients attending the antiretroviral clinic at Embhuleni Hospital in Mpumalanga province.Outcome measures: The questionnaire included questions on sexual practices, number of partners, sexual experience and fertility wishes, comparing respondents’ experience before and after HAART.Results: There was a response rate of 100%, with 102 questionnaires completed. There was a significant difference between the responses to questions on sexual desire, sexual performance, sexual enjoyment and satisfaction regarding frequency of intercourse before and after HAART. Respondents reported a better sexual experience before HAART (t = 2.4387, p-value = 0.0165). There was a statistically significant difference between the number of partners before and after initiation of HAART (p-value = 0.000). Although 96% of respondents rated  condom use as being very important, 11% never used condoms during sex and 21% indicated that they had had unprotected sex in the previous six months. Eighteen per cent of respondents said it was very important for them to have a child and 20% were planning to have a child in the future. A quarter of respondents had not disclosed their HIV status to their partners. The majority (95%) of respondents indicated that it was very important to them that health workers discussed their sexual needs with them.Conclusion: Sexuality in HIV is complex, with components described as the “Ps” of sexuality: practices, partners, pleasure, pressure and pain, procreation and power. In this study, participants reported a better sexual experience before HAART. Healthcare professionals need to develop the skills to discuss sexuality, intimacy and fertility wishes with patients. Thisdiscussion will enhance healthcare professionals’ understanding of  atients’ experiences of their illness and should allow for a more effective patient-centred approach to care.Keywords: sexuality, sexual experience, HIV, HAART, reproductive health, rura

Sexuality in patients with human immunodeficiency virus at Embhuleni hospital in Mpumalanga province

Objectives: This study explored issues of sexuality in people living with AIDS who were on highly active antiretroviral therapy (HAART). Design: This was a descriptive quantitative study. Data were collected with an administered questionnaire and entered in Excel®. Statistical analysis included frequency tables, summary statistics and 95% confidence intervals. Setting and subjects: The respondents were purposively sampled from the 850 patients attending the antiretroviral clinic at Embhuleni Hospital in Mpumalanga province. Outcome measures: The questionnaire included questions on sexual practices, number of partners, sexual experience and fertility wishes, comparing respondents’ experience before and after HAART. Results: There was a response rate of 100%, with 102 questionnaires completed. There was a significant difference between the responses to questions on sexual desire, sexual performance, sexual enjoyment and satisfaction regarding frequency of intercourse before and after HAART. Respondents reported a better sexual experience before HAART (t = 2.4387, p-value = 0.0165). There was a statistically significant difference between the number of partners before and after initiation of HAART (p-value = 0.000). Although 96% of respondents rated condom use as being very important, 11% never used condoms during sex and 21% indicated that they had had unprotected sex in the previous six months. Eighteen per cent of respondents said it was very important for them to have a child and 20% were planning to have a child in the future. A quarter of respondents had not disclosed their HIV status to their partners. The majority (95%) of respondents indicated that it was very important to them that health workers discussed their sexual needs with them. Conclusion: Sexuality in HIV is complex, with components described as the “Ps” of sexuality: practices, partners, pleasure, pressure and pain, procreation and power. In this study, participants reported a better sexual experience before HAART. Healthcare professionals need to develop the skills to discuss sexuality, intimacy and fertility wishes with patients. This discussion will enhance healthcare professionals’ understanding of patients’ experiences of their illness and should allow for a more effective patient-centred approach to care

What are the communication skills and needs of doctors when communicating a poor prognosis to patients and their families? A qualitative study from South Africa

Background. Thousands of South Africans are diagnosed with life-threatening illness every year. Research shows that, globally, of the 20 million people who need palliative care at the end of life every year, <10% receive it.Objectives. To explore communication skills and practices of medical practitioners when conveying a poor prognosis to patients and families, and to identify their communication skills, needs and understanding of palliative care.Methods. This was an exploratory qualitative study of practising doctors, using a grounded theory approach. The study was conducted at a government-funded public hospital in Cape Town, South Africa, which is a referral centre for various illnesses, including cancer. Face-toface, one-on-one interviews using a semistructured interview guide were conducted, using audio recording.Results. The emerging theory from this study is that doctors who understand the principles of palliative care and who have an established working relationship with a palliative care team feel supported and express low levels of emotional anxiety when conveying a poor prognosis.Conclusion. Having hospital-based palliative care teams in all public hospitals will provide support for patients and doctors handling difficult conversations. All healthcare professionals should be trained in palliative care so that they can effectively communicate concerns related to poor prognosis with patients and their families. Communication, loss and grief issues should be part of the curriculum in all disciplines and throughout training in medical school

Evaluating palliative care training in the oncology registrar programme in South Africa

Background. Following a World Health Assembly call in 2014 to strengthen palliative care, the South African (SA) Department of Health approved this strategy as part of the SA National Policy Framework and Strategy on Palliative Care. In 2016, the University of Cape Town, together with the College of Radiation Oncology of SA, identified the need to integrate palliative care (PC) into the oncology curriculum. In collaboration with the Cancer Association of SA, a research project was developed to introduce a 12-module curriculum at five teaching hospitals. The aim of this research was to evaluate the impact of a 1-year PC course within the training programme for specialist oncologists in SA. Objective. To determine the reaction of oncology registrars and their supervisors to the course to determine changes in knowledge and skills, and to determine the application in oncology practice. Methods. This study was a mixed-method prospective evaluation of an educational intervention. The educational programme used a blended learning method to train and support registrars (n=32) and facilitators (n=5) across five universities from August 2017 to September 2018. Evaluation feedback was electronically collected to determine the registrars’ reactions to the course materials. Pre and post multiple-choice questions (MCQs) were used to review their knowledge. Focus group discussions (FGDs) were used to explore reactions, change in knowledge and skills and how registrars integrated PC into their daily work. Results. There was an overwhelmingly positive reaction to the PC course by the oncology registrars and their supervisors. The training was found to be feasible, and the topics addressed appropriate. Concerns previously raised by the College of Radiation Oncology of SA regarding the feasibility and appropriateness of the course and material were found to be unsubstantiated. The poor MCQ results can be ascribed to poor sequencing of the execution of the question. However, the MCQs in modules 7 and 8 (symptom management) demonstrated the most significant change in knowledge and skills (symptom management). The FGDs demonstrated a perceived change in knowledge and skills, especially for communication skills and pain and symptom management. The FGDs also indicated that the registrars’ approach to PC changed in that they were able to integrate the principles of PC into practice, and now saw PC as an essential component of oncology. Lastly, registrars and their supervisors felt that the course addressed topics that formed part of their daily clinical work. Conclusion. This research supports the view that PC training is an essential component of oncology training in the SA setting. PC forms part of the daily practice of oncologists, and a structured curriculum prepares clinicians to be able to integrate evidence-based PC into the practice of oncology if they receive appropriate training. Supervisors of the oncology training programme and registrars are confident that the training of 12 modules across 1 year is feasible and appropriate

What are the communication skills and needs of doctors when communicating a poor prognosis to patients and their families? A qualitative study from South Africa

Background. Thousands of South Africans are diagnosed with life-threatening illness every year. Research shows that, globally, of the 20 million people who need palliative care at the end of life every year, <10% receive it.Objectives. To explore communication skills and practices of medical practitioners when conveying a poor prognosis to patients and families, and to identify their communication skills, needs and understanding of palliative care.Methods. This was an exploratory qualitative study of practising doctors, using a grounded theory approach. The study was conducted at a government-funded public hospital in Cape Town, South Africa, which is a referral centre for various illnesses including cancer. Face-to-face, one-on-one interviews using a semistructured interview guide were conducted, using audio recording.Results. The emerging theory from this study is that doctors who understand the principles of palliative care and who have an established working relationship with a palliative care team feel supported and express low levels of emotional anxiety when conveying a poor prognosis.Conclusion. Having hospital-based palliative care teams in all public hospitals will provide support for patients and doctors handling difficult conversations. All healthcare professionals should be trained in palliative care so as to effectively communicate with patients and their families concerns related to poor prognosis. Communication, loss and grief issues should be part of the curriculum in all disciplines and throughout training in medical school

Opportunities, challenges and learnings from qualitative research with stakeholders in frailty in three European countries

The aims of this paper are to reflect upon the experiences of researchers involved in a cross-national qualitative study with stakeholders in three European countries (Italy, Poland and UK), within the context of the FOCUS project on frailty management and optimisation (see http://focus-aha.eu/en/home). Six researchers’ reflections were gathered using open-ended questions. Responses were thematically analysed. We report on our team diversity including cultural differences in epistemological stances and describe how working remotely challenged clear communication. We comment on linguistic issues, our data collection approaches and methods of analysis. However, we also reflect upon the ability of such projects to build knowledge, generate capacity and promote the value of qualitative research in healthcare across Europe. Finally, we advocate an approach to cross-national research that is as much about building a cohesive knowledge exchange network as it is about understanding the lives, perspectives and experiences of our stakeholders