Palliative care is the turn from cure as the priority of care to symptom relief and comfort care. Although very little is published in the burn literature on palliative care, guidelines can be gleaned from the general literature on palliative care, particularly for acute surgical and critical care patients. Palliative care may be started because of futility, on request of the patient, or because of limited resources. The SPIKES acronym is a useful guide to avoid errors in communication with terminal patients and their relatives.
BACKGROUND: Research on the patient experience of receiving palliative care across a number of settings is increasing, but the majority of these investigations are situated within the context of developed countries. There is limited research from resource-limited countries, especially with regard to patients with cancer who receive hospice care. The present study explored the lived experience of attending hospice care facilities in South Africa to develop a bottom-up understanding from the perspectives of patients themselves.
METHODS: A qualitative cross-sectional study was designed to examine how patients experienced receiving hospice care We conducted in-depth, semi-structured interviews with thirteen, purposively selected patients living with terminal cancer and receiving in-patient or day care palliative services from a hospice organisation in South Africa. We used inductive thematic analysis to analyse the data.
RESULTS: We identified three themes that reflected a process of transformation that was experienced by participants during their engagement with the hospice services. The first theme describes participants' initial reluctance to be linked to the hospice as a result of the stereotypic perceptions of hospice as being associated with death and dying. The second theme presents the perceived positive impact on patients' physical and psychosocial wellbeing which resulted from the highly valued interactions with staff and other patients as well as patients' engagement with creative activities. The final theme delineates the transformation of hospice into a second 'family' and 'home' and the restoration of an identity that expands beyond the 'sick' role.
CONCLUSIONS: Receiving hospice care that sensitively attends to patients' psychosocial and physical needs helps people to re-create a sense of homeliness within the world, re-orient themselves toward a meaningful life and re-configure their relationship with self. Patient experience of receiving hospice care in South Africa does not appear dissimilar to that reported by patients in resource-rich countries, suggesting underlying commonalities. There is a need for raising awareness and educating the public about what palliative care can offer to those in need. Public health campaigns could help reduce the stigma attached to palliative care, deflect negative perceptions, and communicate the benefits for patients, families and communities in culturally sensitive ways.
The escalating number of foodborne diseases and food poisoning outbreaks demand a better call for improved food-handling practices. Hospices are typically described as nongovernmental organizations that offer palliative care to terminally ill patients. The majority of hospice food handlers are not trained in food safety aspects, and services are offered on a voluntary basis. In this study, a descriptive survey design comprising of semistructured questionnaire was utilized to assess the knowledge, attitudes, and practices of the hospice food handlers (n = 100) in hospices around Central South Africa. More than half of the participants (68%) had not taken basic food safety training. The average percentage of the correct answers on the knowledge questionnaire was 66.8%. The participants had a mean age of 35 years (SD = 9.27). Attendance of food safety course had a significant effect on both the practices of using gloves to touch or distribute unwrapped foods ( 2 = 8.411, p-value = .012), and washing hands after using gloves ( 2 = 12.560, p-value = .001). The overall KAP mean score was 78.38. A statistically significant difference was found between the trained and untrained food handlers regarding food safety knowledge (p < .001). There was substantial lack of knowledge regarding the correct temperature for a refrigerator including hot ready-to-eat food.
Background: Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns.
Aim: This study aimed to identify the symptoms, concerns and other outcomes that matter to children with life-limiting conditions and their families in sub-Saharan Africa.
Setting and participants: Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children/caregivers of children aged 0–17 years with life-limiting conditions were purposively sampled by age, sex and diagnosis. Children aged 7 and above self-reported; caregiver proxies reported for children below 7 and those aged 7 and above unable to self-report.
Results: A total of 120 interviews were conducted with children with life-limiting conditions (n = 61; age range: 7–17 years), and where self-report was not possible, caregivers (n = 59) of children (age range: 0–17) were included. Conditions included advanced HIV (22%), cancer (19%), heart disease (16%) endocrine, blood and immune disorders (13%), neurological conditions (12%), sickle cell anaemia (10%) and renal disease (8%). Outcomes identified included physical concerns – pain and symptom distress; psycho-social concerns – family and social relationships, ability to engage with age-appropriate activities (e.g. play, school attendance); existential concerns – worry about death, and loss of ambitions; health care quality – child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age.
Conclusion: This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation.
BACKGROUND: When religious and spiritual (R/S) care needs of patients with advanced disease are met, their quality of life (QoL) improves. We studied the association between R/S support and cancer patients' QoL at end-of-life in Soweto, South Africa.
OBJECTIVES: To identify R/S needs among advanced cancer patients receiving palliative care services and to assess associations of receipt of R/S care with patient QoL and place of death.
METHOD: A prospective cohort study conducted from May 1, 2016 to April 30, 2018 at a tertiary hospital in Soweto, South Africa. Nurses enrolled advanced cancer patients and referred them to the palliative care multidisciplinary team. Spiritual counsellors assessed and provided spiritual care to patients. We compared socio-demographic, clinical, and R/S factors and QoL of R/S care recipients and others.
RESULTS: Of 233 deceased participants, 92 (39.5%) had received R/S care. Patients who received R/S care reported less pain (2.82±1.23 versus 1.93±1.69), used less morphine and were more likely to die at home than patients who did not (57.5% compared to 33.7%). On multivariable logistic regression analysis, adjusting for significant confounding influences and baseline African Palliative Care Association Palliative Outcome Scale (APCA POS) scores, receipt of spiritual care was associated with reduced pain and family worry (OR, 0.33, 95% CI, 0.11-0.95); (OR, 3.43, 95% CI, 1.10-10.70).
CONCLUSION: Cancer patients have R/S needs. R/S care among our patients appreared to improve their end-of-life experience. More research is needed to determine the mechanisms by which R/S care may have improved the observed patient outcomes.
BACKGROUND: For most patients with oesophageal cancer worldwide, palliation of dysphagia is the goal which is most commonly achieved with self-expanding metal stents (SEMS). The aim of this study was to assess the profile and management of oesophageal cancer patients at Frere Hospital in the Eastern Cape, and compare this to a similar cohort from Groote Schuur Hospital (GSH) in the Western Cape Province.
METHOD: This study is a retrospective comparative cohort which reviewed all patients diagnosed with oesophageal cancer by the Frere Hospital and GSH endoscopy units from January to December 2015. Independent prospective electronic databases for the two hospitals were merged for comparative analysis.
RESULTS: During the study period, 346 and 108 patients were diagnosed with oesophageal cancer at Frere Hospital and GSH respectively. The rate of curative intended intervention was similarly low, with 3% of cases at Frere Hospital undergoing oesophagectomy or definitive radiotherapy as compared to 5% at GSH (p=0.48). In terms of palliation, significantly more patients received palliative oncological therapy at GSH as compared to Frere Hospital (21% vs 8%, p < 0.001). At Frere Hospital, 281 patients (81%) were treated primarily with serial dilatations. At GSH, 9 patients received a single dilatation, all as a bridge to radiotherapy or stenting. At Frere Hospital, 28 patients (8%) were stented, as compared to GHS where 69 patients (64%) were managed with a stent (p < 0.001).
CONCLUSION: This study shows significant differences in the oncological and endoscopic palliation of patients between the two institutions, highlighting a gross disparity in healthcare provision between them. The reasons for these disparities should be investigated and equipoise addressed by national health policy makers.
Human immunodeficiency virus infection is incurable. About 770 000 people died of HIV worldwide in 2018. More than two-thirds of these died in Africa (UNAIDS Global Aids Update 2019). Although Statistics South Africa has recorded some improvement in the overall survival, HIV-related levels of morbidity and mortality remain high. Mortality is greatest among those not on antiretroviral therapy (ART), that is, either naïve to ART or those who have stopped taking medication and are outside of care. Mortality is also high in he first year after the start of ART. Of South Africa’s 7.97 million people living with HIV (PLWHIV) in 2019, only 4.94 million are on ART. A
detectable viral load while on ART is usually a sign of treatment failure or poor viral control. These persons are also at increased risk of HIV-related morbidity and mortality.
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Background: Timely identification of people who are at risk of dying is an important first component of end-of-life care. Clinicians often fail to identify such patients, thus trigger tools have been developed to assist in this process. We aimed to evaluate the performance of a identification tool (based on the Gold Standards Framework Prognostic Indicator Guidance) to predict death at 12 months in a population of hospitalised patients in South Africa.
Methods: Patients admitted to the acute medical services in two public hospitals in Cape Town, South Africa were enrolled in a prospective observational study. Demographic data were collected from patients and patient notes. Patients were assessed within two days of admission by two trained clinicians who were not the primary care givers, using the identification tool. Outcome mortality data were obtained from patient folders, the hospital electronic patient management system and the Western Cape Provincial death registry which links a unique patient identification number with national death certificate records and system wide electronic records.
Results: 822 patients (median age of 52 years), admitted with a variety of medical conditions were assessed during their admission. 22% of the cohort were HIV-infected. 218 patients were identified using the screening tool as being in the last year of their lives. Mortality in this group was 56% at 12 months, compared with 7% for those not meeting any criteria. The specific indicator component of the tool performed best in predicting death in both HIV-infected and HIV-uninfected patients, with a sensitivity of 74% (68–81%), specificity of 85% (83–88%), a positive predictive value of 56% (49–63%) and a negative predictive value of 93% (91–95%). The hazard ratio of 12-month mortality for those identified vs not was 11.52 (7.87–16.9, p < 0.001).
Conclusions: The identification tool is suitable for use in hospitals in low-middle income country setting that have both a high communicable and non-communicable disease burden amongst young patients, the majority under age 60.
INTRODUCTION: Caring for people with life-threatening illnesses is a key part of working in health care. While South Africa launched the National Policy Framework and Strategy for Palliative Care 2017-2022, integrating palliative care into existing public health care is in its infancy. Most patients in the Western Cape have poor access to palliative care, an inequality felt hardest by those living in rural areas.Building the model: In 2018, with district wide institutional managerial support, a palliative care model for rural areas was initiated in the Western Cape. The process involved setting up hospital- and community-based multi-professional palliative care teams, initiating weekly palliative care ward rounds, training champions in palliative care and raising awareness of palliative care and its principles.
DISCUSSION: Establishing regular ward rounds has changed the way patients needing palliative care are managed, particularly in challenging the mindsets of specialist departments. The emergence of the multi-professional team listening and planning together at the patient's bedside has restored some of the dignity and ethos of patient-centred care, which is a core principle of the provincial Health Care 2030 vision.
CONCLUSION: In a short time period, we have managed to build a service that aims to improve care for palliative patients in rural areas. Its strength lies in a multi-professional patient-centred approach and improved communication between different components of the health system, providing a more seamless service that supports patients when they need it most.
Aims: Families were interviewed as a quality improvement assessment for palliative and supportive care services for children.
Methods: This exploratory qualitative study of family members of children with cancer was conducted at an academic hospital in central South Africa and a grounded theory approach was used. Face-to-face interviews using a semi-structured interview guide were conducted with 16 family members of 16 children.
Findings: Parents felt supported by the healthcare professionals who were caring for their child, but several shortcomings were identified. These included erratic psychosocial support, minimal financial support and poor parental access to basic needs and food provision, preventable errors in procedures and a lack of support available for siblings. It is also worth noting that healthcare professionals did not always seem sufficiently equipped to attend to palliative care patients.
Conclusion: Strategies to improve supportive and palliative care are needed for children with cancer and their families in a hospital setting. The interviews identified a number of themes and current shortcomings that should be considered to improve services.
The study sought to explore bereavement rituals and their related psychosocial significance in an African cultural setting. A descriptive phenomenological design was adopted. Fourteen adults were purposefully sampled to participate in in-depth interviews. Data were analyzed using Hycner’s adapted phenomenological method, which resulted in four themes: (a) the cleansing ritual ceremony/go-ntšha setšhila, (b) ancestor reverence rituals, (c) rituals for protecting the deceased spirit, and (d) vengeance ritual/letswa. Ritual performance is associated with diverse psychosocial benefits including the prevention of a culture-specific bereavement illness. Essentially, ritual performance is for healing in that it lessens bereavement from becoming disabling.
OBJECTIVES: The unmet palliative care need is intensified in resource-limited countries where there is inequitable access to healthcare and adolescents and young adults (AYA) fall between the cracks of paediatric and adult services. We aimed to examine palliative care for AYA with cancer and/or HIV in South Africa.
DESIGN: Individual and small group interviews using process mapping.
SETTING: Data were collected between November 2016 and March 2017 with staff from government hospitals, hospices and clinics from three provinces of South Africa.
PARTICIPANTS: Health and social care professionals (n=30) (eg, physicians, nurses, social workers, psychologists) from KwaZulu-Natal, Western Cape and Gauteng provinces.
METHODS: In this qualitative situational analysis study, participants were recruited to interviews and process mapping used to try and identify palliative care pathways of AYA with palliative care needs. We developed a thematic framework using a deductive approach to analyse the interview data.
RESULTS: Palliative care pathways were not easily identifiable, ambiguous and varied and participants reported on their experiences and perceptions of service provision. Participants expressed that resource challenges limited the service provision. A need for nurse prescribing of pain relief at community level was mentioned as AYA are reluctant to use hospitals and clinics. Lack of (1) palliative care education among professionals, (2) public awareness and (3) adolescent-specific care posed a challenge to service provision.
CONCLUSIONS: The changing burden of HIV and increase in cancer prevalence calls for integration of palliative care in mainstream health services. Despite good policies, the pragmatic aspect of training professionals will influence a change in practice. The main task will be to absorb palliative care philosophy and practice at all levels of care to avoid overburdening the care system and to integrate it in community care programmes.
CONTEXT: Identifying factors that affect terminally ill patients' preferences for and actual place of death may assist patients to die where they wish.
OBJECTIVE: To investigate factors associated with preferred and actual place of death for cancer patients in Johannesburg, South Africa.
METHODS: In a prospective cohort study at a tertiary hospital in Johannesburg South Africa, adult patients with advanced cancer and their caregivers were enrolled from 2016 to 2018. Study nurses interviewed the patients at enrolment and conducted post-mortem interviews with the caregivers.
RESULTS: Of 324 patients enrolled, 191 died during follow-up. Preferred place of death (POD) was home for 127 (66.4%) and a facility for 64 (33.5%) patients; 91 (47.6%) patients died in their preferred setting, with a kappa value of congruence of 0.016 (95% confidence interval = -0.107 - 0.139). Factors associated with congruence were increasing age (OR: 1.03, 95% CI: 1.00-1.05), use of morphine (OR: 1.87, 95% CI: 1.04-3.36) and wanting to die at home (OR: 0.44, 95% CI: 0.24-0.82). Dying at home was associated with increasing age (OR 1.03, 95%CI 1.00-1.05), and with the patient wishing to have family and/or friends present at death (OR 6.73, 95% CI 2.97-15.30).
CONCLUSION: Most patients preferred to die at home, but most died in hospital and fewer than half died in their preferred setting. Further research on modifiable factors, such as effective communication, access to palliative care and morphine may ensure that more cancer patients in South Africa, die where they wish.
Funeral services sector personnel are at risk of contracting infectious diseases and have poor adherence to universal safety precautions. More work needs to be done to understand this industry; however, there is limited information on conducting research within this sector. This manuscript draws on experiences and observations of funeral services study describing lessons learned in the field, particularly emphasizing attempts to engage funeral homes in research and the impact of this work on the research team. Factors to be considered before researching in this sector: obtaining approvals, identification as researchers, and in-house emotional support for the research team.
BACKGROUND: Patient death is an event that all health care workers will face at some point. Beyond the family, the greatest emotional strain is on people who work directly with the patient and family. Bereavement overload occurs after multiple losses without time for normal grief in between.
AIM: To investigate bereavement overload, its effects and related coping mechanisms of personnel working in adult medical wards.
SETTING: Four adult medical wards at National District Hospital, Bloemfontein.
METHODS: An analytical cross-sectional study design was performed with the aid of an interviewer administered questionnaire. The target population included health care providers (13 doctors and 20 nurses), eight final-year medical students, and four administrative staff working in thefour adult medical wards at National District Hospital, during August to October 2016.
RESULTS: Half (48.9%) of the 45 participants reported bereavement overload. None of the medical students reported bereavement overload compared to 60.0% of nurses, 75.0% of administrative staff and 53.9% of doctors. Nearly two-thirds (64.5%, n = 29) stated that they suffered from compassion fatigue. The majority of participants (62.2%) used only positive coping mechanisms. The use of negative coping mechanisms correlated directly with a longer duration in the medical field.
CONCLUSION: With a 49% prevalence of bereavement overload, it is important that support systems are in place to prevent the effects of negative coping mechanisms. The desirable outcome is that health care providers, who suffer from bereavement overload, experience compassion satisfaction and become more dedicated to the patients' well-being without expense to themselves.
The International Children's Palliative Care Network (ICPCN) held its third international conference on children's palliative care in Durban, South Africa, from May 30 2018 to 2 June 2018. The conference-inspiration, innovation and integration-brought together 250 participants from 41 countries and was held in conjunction with local partners-Umduduzi Hospice Care for Children, Palliative Treatment for Children South Africa (Patch SA) and the Hospice and Palliative Care Association of South Africa. It built on national and global developments in palliative care such as its inclusion in Universal health coverage (UHC), the Lancet Commission report on pain and palliative care and the sustainable development goals (SDGs), and aimed to raise the profile of children's palliative care in KwaZulu-Natal (KZN) and nationally. Seven pre-conference workshops were held prior to the conference on topics such as pain and symptom management, children's palliative care within a humanitarian crisis, perinatal palliative care, research, developing programmes, ethical issues and difficult conversations in children's palliative care. Delegates were welcomed in true Durban style at the welcome reception hosted by the City of Durban and uShaka Marine World. The opening plenary included entertainment from the Open Air School and Hillcrest Primary School, and inspirational talks from the Member of the Executive Council (MEC) for Health, a representative of the World Health Organization (WHO), the Chief Executive of ICPCN and the Noble Peace Prize Nominee Dr MR Rajagopal from Pallium India. Plenary sessions were interspersed throughout the conference with 56 oral concurrent presentations and workshops, six 'Meet the expert sessions' 100 poster presentations and the South African Premier of the film 'Hippocratic: 18 Experiments in gently shaking the world'. There was a great feeling of networking and learning throughout the conference, with the conference being well evaluated, and an increase in the level of presentations and research from previous conferences demonstrating the steps that are being taken in children's palliative care globally.
PURPOSE: The understanding of patients with cancer of their condition and their wishes regarding care as they approach end of life (EoL) have been studied more in high-income countries than in low- and middle-income countries (LMICs).
PATIENTS AND METHODS: Data were analyzed from a cohort study (N = 221) of patients with advanced cancer who were recruited from a palliative care center in Soweto, South Africa (LMIC), between May 2016 and June 2017. Patients were asked about their understanding of their illness, estimated life expectancy, EoL care communication, and EoL care preferences.
RESULTS: Only 13 patients (5.9%) acknowledged that they were terminally ill; nine patients (4.1%) estimated accurately that they had months, not years, left to live. A total of 216 patients (97.7%) reported that they had not had an EoL care discussion with their physician, and 170 patients (76.9%) did not want to know their prognosis even if the doctor knew it. Most patients preferred comfort care (72.9%; n = 161) to life-extending care (14.0%; n = 31), and did not want to be kept alive using extreme measures (80.5%; n = 178) or have their doctors do everything possible to extend their lives (78.3%; n = 173). Finally, 127 patients (57.5%) preferred to die at home, and 51 (23.1%) preferred to die in the hospital. Most patients (81.0%; n = 179) had funeral plans.
CONCLUSION: South African patients demonstrated less awareness of the fact that they were terminally ill, were less likely to have discussed their prognosis with their doctor, and more strongly preferred comfort care to life-extending EoL care than US and other LMIC patients in prior research. These differences highlight the need for culturally appropriate, patient-centered EoL care for South African patients with advanced cancer as well as to determine individual preferences and needs in all EoL settings.
Community health care should facilitate effective adaptation to widowhood. In South Africa, the primary health-care nurses, who are the first-line health-care services, seem to miss opportunities for identifying and effectively managing widows experiencing health risks. This study explored the health-support needs of widows. We purposively selected 12 participants, who were widows between 25 and 65 years old residing in an urban area of South Africa. Data were gathered during unstructured individual phenomenological interviews and analyzed using a descriptive phenomenological method. Widowhood is an embodied and intense emotional experience with a cognitive impact. Related to these experiences are widows' health-support needs. Widows have a need to be listened to and to be understood and cared for; attitudes and skills which require time and availability from primary health-care nurses. Widows expressed a need to engage in support groups, receive home visits, and receive health education from primary health-care nurses.
BACKGROUND: Euthanasia/physician-assisted suicide have been a controversial and sometimes taboo topic for a long time, not only in South Africa (SA) but also internationally. A recent (SA) judicial case has seen the topic debated again. Consensus on accepting or abolishing these practices in SA has yet to be reached. All relevant role players need to be adequately engaged before policy can be informed.
OBJECTIVES: To determine the views of future doctors (medical students) regarding euthanasia and physician-assisted suicide (PAS) and to ascertain their stance on its legalisation in South Africa (SA).
METHODS: A paper-based, semi-quantitative descriptive study design consisting of 16 questions, using convenience sampling of third- to fifth-year medical students at Stellenbosch University, was used.
RESULTS: The overall response rate was 69.3% (N=277). In total, 52.7% of participants (n=146) felt that the practices of euthanasia/PAS should be legalised in SA. Responses varied depending on patient morbidities. If a patient had terminal disease with intractable suffering, 41.9% of participants would terminate the patient's life upon request. A further 36.1% of participants stated that they would have no part in ending a patient's life, while 35.0% said that they would be comfortable with providing the patient with the correct means to end their life (PAS). The majority (80.1%) of participants indicated that they would prefer a dedicated ethics committee to decide who receives euthanasia/PAS. Many factors influenced participants' responses, but differences in opinion between and within the various religious groups were particularly evident in the responses received.
CONCLUSIONS: More than half the respondents in this study were open to legalising euthanasia/PAS, substantially more than in previous studies. However, only 41.9% of respondents would consider actually performing euthanasia/PAS, for certain patients. Views of other healthcare workers as well as the public are required before policy can be informed.
BACKGROUND: Illness, lack of vocabulary and unwillingness to discuss emotional distress may contribute to poor communication with children. Drawings may play a crucial role in enhancing communication with this patient group.
AIM: This study aimed to describe the pictures drawn by primary school learners in the children's palliative care programme in Bloemfontein, South Africa, and to evaluate whether drawings can be used to assess emotional wellbeing.
METHODS: Drawings were assessed according to standardised human figure drawing guidelines and emotional indicator (EI) scales. Pictures were discussed with the child and compared with the clinical presence of depression or emotional discomfort.
RESULTS: A total of 29 pictures drawn by 20 children were assessed. Of the 20 participants, 18 were boys, with a mean age of 10.2 years, and 12 children were assessed as having clinical depression.
CONCLUSIONS: The presence of two or more EIs, small pictures or pictures in dark colours may indicate clinical depression. Health professionals are advised not to try to interpret the picture, but to use the picture to enhance communication. Let the child explain the picture, rather than relying only on the assessment tool.