The use of emergency medical services for palliative situations in Western Cape Province, South Africa: A retrospective, descriptive analysis of patient records.

BACKGROUND: An estimated 56.8 million people require palliative care annually, while only 14% receive such care. This imbalance is particularly acute in low-to middle-income countries (LMICs), where up to 80% of patients requiring palliative care reside. To correct this imbalance, integration between palliative services and other disciplines has been recommended. While improved palliative care integration is a priority in the South African (SA) LMIC context, emergency medical services (EMS) and palliative care remain non-integrated. This has resulted in poor palliative situation management by EMS and a lack of research concerning their intersection. OBJECTIVE: To examine EMS use for palliative situations in the Western Cape (WC) Province of SA by describing frequency of intersection, patient characteristics and outcomes. METHODS: An observational, descriptive, retrospective patient record review was employed at two hospitals with palliative care services in the WC. All patient records of those who arrived at the hospitals between 1 January 2020 and 31 December 2020 via EMS conveyance leading to palliative care provision were included in the study. RESULTS: In total, 1 207 unique patients received palliative care services at both hospitals during the study period. Of these, 395 (33%) made use of EMS for hospital conveyance on 494 occasions. The median (range) patient age was 60 (20 - 93) years, and most transports involved male patients (54%, n=265). Family members were the primary caregivers in most instances (89%, n=440), dyspnoea was the chief complaint (36%, n=178) and cancer was the most frequent diagnosis (32%, n=159). The median length of hospital stay was 6 days, with most patients discharged home (60%, n=295). CONCLUSION: EMS in SA frequently encounter palliative situations for symptoms that may be managed within their scope of practice. Consequently, it appears that EMS have an important role to fulfil in the care of patients with palliative needs. Integrating EMS and palliative care may result in improved palliative care provision and, therefore, EMS and palliative care integration would be beneficial in SA.

Impact of COVID-19 primary healthcare service restrictions on patients with chronic obstructive pulmonary disease in Cape Town, South Africa.

BACKGROUND: Patients with chronic obstructive pulmonary disease (COPD) typically experience multidimensional symptoms throughout the course of their disease, with burdensome physical symptoms, social isolation, and additional psychological suffering. COVID-19 lockdown resulted in restrictions on chronic care delivery at primary healthcare (PHC) facilities, and it is not known what the care experiences of patients with COPD were during this time. OBJECTIVES: To describe patient experiences of the impact of the lockdown on their needs and their experiences of the primary care received for their COPD. METHODS: The data reported in this paper are from a cohort of 49 patients with COPD receiving primary care, recruited in February and March 2020, before recruitment was paused for COVID-19 lockdown, for a feasibility stepped-wedge hybrid type II design randomised controlled trial of integrated person-centred palliative care in primary care for patients with COPD in Cape Town, South Africa. Data are open-text responses from participants who responded to a single question on a validated measure of primary care consultation empathy (CARE), and describe patient experiences of the impact of the lockdown on the primary care received for their COPD, prior to crossover to trial intervention. RESULTS: Thirty-two patients with COPD gave between 1 and 9 responses each to the open-ended question between March and December 2020. The average age of the participants was 58.6 years, and 53.1% (n=17) were female. Inductive analysis of the open-text data identified four main themes. Participants described decreased access to chronic care and a desire for more person-centred care in interactions with healthcare professionals. The socioeconomic ramifications of the COVID-19 lockdown added to the burden they experienced. CONCLUSION: The COVID-19 lockdown PHC service restrictions caused a disruption to the continuity of care for patients with COPD, with associated worry, anxiety and disappointment. Medication access was largely supported by the home delivery of chronic medication. We suggest that there are opportunities for providing more sustained support for patients with COPD through referrals to community health workers, and also through telephonic patient follow-up by primary care teams.

Introducing an Ethics Framework for health priority-setting in South Africa on the path to universal health coverage.

BACKGROUND: South Africa (SA) has embarked on a process to implement universal health coverage (UHC) funded by National Health Insurance (NHI). The 2019 NHI Bill proposes creation of a health technology assessment (HTA) body to inform decisions about which interventions NHI funds will cover under UHC. In practice, HTA often relies mainly on economic evaluations of cost-effectiveness and budget impact, with less attention to the systematic, specific consideration of important social, organisational and ethical impacts of the health technology in question. In this context, the South African Values and Ethics for Universal Health Coverage (SAVE-UHC) research project recognised an opportunity to help shape the health priority-setting process by providing a way to take account of multiple, ethically relevant considerations that reflect SA values. The SAVE-UHC Research Team developed and tested an SA-specific Ethics Framework for HTA assessment and analysis. OBJECTIVES: To develop and test an Ethics Framework for use in the SA context for health priority-setting. METHODS: The Framework was developed iteratively by the authors and a multidisciplinary panel (18 participants) over a period of 18 months, using the principles outlined in the 2015 NHI White Paper as a starting point. The provisional Ethics Framework was then tested with multi-stakeholder simulated appraisal committees (SACs) in three provinces. The membership of each SAC roughly reflected the composition of a potential SA HTA committee. The deliberations and dedicated focus group discussions after each SAC meeting were recorded, analysed and used to refine the Framework, which was presented to the Working Group for review, comment and final approval. RESULTS: This article describes the 12 domains of the Framework. The first four (Burden of the Health Condition, Expected Health Benefits and Harms, Cost-Effectiveness Analysis, and Budget Impact) are commonly used in HTA assessments, and a further eight cover the other ethical domains. These are Equity, Respect and Dignity, Impacts on Personal Financial Situation, Forming and Maintaining Important Personal Relationships, Ease of Suffering, Impact on Safety and Security, Solidarity and Social Cohesion, and Systems Factors and Constraints. In each domain are questions and prompts to enable use of the Framework by both analysts and assessors. Issues that arose, such as weighting of the domains and the availability of SA evidence, were discussed by the SACs. CONCLUSIONS: The Ethics Framework is intended for use in priority-setting within an HTA process. The Framework was well accepted by a diverse group of stakeholders. The final version will be a useful tool not only for HTA and other priority-setting processes in SA, but also for future efforts to create HTA methods in SA and elsewhere.

The ethical imperative to relieve suffering for people with tuberculosis by ensuring access to palliative care.

Patients diagnosed with tuberculosis (TB) continue to experience clinical uncertainty and high mortality and to bear a high burden of symptoms and other concerns. Additional concerns may be family support needs and stigma, particularly the latter, as TB and human immunodeficiency virus (HIV) coinfection are common. Human rights covenants, global health policy and the End TB Strategy all recommend palliative care as an essential component of care services. As established in the resolution adopted by the World Health Assembly (WHA) on "Strengthening of palliative care as a component of comprehensive care throughout the life course", there is a "need for palliative care across disease groups (non-communicable diseases, and infectious diseases, including HIV and multidrug-resistant tuberculosis), and across all age groups". We address the ethical imperative to respect the dignity and fundamental rights of people with TB by providing palliative care. We review the evidence for the need for person-centred palliative care and highlight novel models that utilise the skills and training functions of specialist palliative care to achieve better care. We outline simple recommendations for the delivery of specialist and generalist palliative care, offer suggestions on how to ensure optimal coverage by enabling access to appropriate good-quality palliative care at all points of the health system, including alongside treatment. Finally, we set out the current priorities for research and policy to ensure that quality care is delivered to all who need it irrespective of treatment outcome, to minimise distress and to optimise engagement in treatment and care.

A systematic review of literature to evaluate the burden of physical and psychological symptoms and palliative care in patients diagnosed with idiopathic pulmonary fibrosis.

BACKGROUND: Palliative care improves quality of life in patients with life-threatening illnesses, such as idiopathic pulmonary fibrosis (IPF), in a holistic manner and should be integrated early into the management of these patients. OBJECTIVE: To evaluate the degree of physical and psychological symptoms in patients with IPF and the extent to which palliative care is used in patient management. METHODS: Several databases were searched for studies reporting on symptom burden, quality of life or palliative interventions in patients with IPF. RESULTS: A total of 46 articles were included in this review. Studies showed that many patients experienced dyspnoea, which improved with pulmonary rehabilitation in some cases. Fatigue and poor quality of sleep had a notable negative impact on daily life activities. Instruments evaluating anxiety and depression showed that many patients with IPF experienced mild to moderate depression and anxiety. Quality of life was shown to be negatively affected across all domains. Two studies indicated poor referral to palliative care units and one study reported positively on the use of morphine for managing breathlessness in advanced IPF. CONCLUSION: Patients with IPF generally experience poor quality of life. Patients are seldom referred to palliative care, even in developed countries. No data were available on the use of palliative care in developing countries. Furthermore, research on the burden of symptoms and management of these symptoms appears to be limited. Increased awareness of and research on the palliative care needs of patients with IPF are recommended, particularly in resource-limited settings such as South Africa.

The development of hospital-based palliative care services in public hospitals in the Western Cape, South Africa.

With the recent approval of a South African (SA) National Policy Framework and Strategy for Palliative Care by the National Health Council, it is pertinent to reflect on initiatives to develop palliative care services in public hospitals. This article reviews the development of hospital-based palliative care services in the Western Cape, SA. Palliative care services in SA started in the non-governmental sector in the 1980s. The first SA hospital-based palliative care team was established in Charlotte Maxeke Johannesburg Academic Hospital in 2001. The awareness of the benefit of palliative care in the hospital setting led to the development of isolated pockets of excellence providing palliative care in the public health sector in SA. This article describes models for palliative care at tertiary, provincial and district hospital level, which could inform development of hospital-based palliative care as the national policy for palliative care is implemented in SA.

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.

Maintaining wellbeing for South Africans receiving ART: the burden of pain and symptoms is greater with longer ART exposure.

BACKGROUND: Physical and psychological symptom burden among people with HIV infection is associated with poor quality of life, poorer treatment adherence, viral rebound and risk behaviour. Symptomatology has not been investigated among outpatients in sub-Saharan Africa. OBJECTIVE: To measure the seven-day period prevalence, burden and correlates of pain and other physical and psychological symptoms among HIV patients receiving antiretroviral therapy (ART). METHODS: This was a cross-sectional self-report study. A total of 378 patients were interviewed using validated tools in three South African public sector clinics. RESULTS: The most prevalent symptoms were feeling sad (64%), feeling irritable (61.6%), worry (60.8%), numbness and tingling in hands/ feet (59.8%), and sexual problems (51%). In multivariate analysis, later disease stage was associated with worse psychological symptom burden (beta = 0.359; 95% confidence interval (CI) 0.202 - 0.516; p < or = 0.001), global symptom burden (beta = 0.365; 95% CI 0.204 - 0.526; p < 0.001) and number of symptoms (beta = 0.308; 95% CI 0.150 - 0.465; p < 0.001). Those receiving treatment for a greater number of years also reported higher burden for physical (beta = 0.083; 95% CI 0.037 - 0.129; p < or = 0.001), psychological (beta = 0.068; 95% CI 0.019 - 0.117; p = 0.007) and global symptoms (beta = 0.065; 95% CI 0.016 - 0.115; p = 0.010), and a greater number of symptoms (beta = 0.081; 95% CI 0.032 - 0.130; p = 0.001). CONCLUSIONS: The data reveal a high symptom burden despite treatment. Detailed symptom assessment and control continues to be required in the era of treatment.

The current situation in education and training of health-care professionals across Africa to optimise the delivery of palliative care for cancer patients.

The need for palliative care education remains vital to contribute to the quality of life of patients, both adults and children, with cancer in Africa. The number of patients with cancer continues to rise, and with them the burden of palliative care needs. Palliative care has been present in Africa for nearly four decades, and a number of services are developing in response to the HIV/AIDS epidemic. However, the needs of cancer patients remain a challenge. Education and training initiatives have developed throughout this time, using a combination of educational methods, including, more recently, e-learning initiatives. The role of international and national organisations in supporting education has been pivotal in developing models of education and training that are robust, sustainable, and affordable. Developing a material for education and professional development needs to continue in close collaboration with that already in production in order to optimise available resources. Seeking ways to evaluate programmes in terms of their impact on patient care remains an important part of programme delivery. This article reviews the current situation.

The net effect: spanning diseases, crossing borders-highlights from the fourth triennial APCA conference and annual HPCA conference for palliative care.

The African Palliative Care Association (APCA) jointly hosted its triennial palliative care conference for Africa with the Hospice and Palliative Care Association of South Africa (HPCA) on 17-20 September 2013 in Johannesburg, South Africa. At the heart of the conference stood a common commitment to see patient care improved across the continent. The theme for the conference, 'The Net Effect: Spanning Diseases, Crossing Borders', reflected this joint vision and the drive to remember the 'net effect' of our work in palliative care-that is, the ultimate impact of the care that we provide for our patients and their families across the disease and age spectrum and across the borders of African countries. The conference, held in Johannesburg, brought together 471 delegates from 34 countries. The key themes and messages from the conference are encapsulated in ten 'C's of commitment to political will and support at the highest levels of governance; engaging national, regional, and international bodies; collaboration; diversity; palliative care for children; planning for human resources and capacity building; palliative care integration at all levels; developing an evidence base for palliative care in Africa; using new technologies; and improved quality of care. Participants found the conference to be a forum that challenged their understanding of the topics presented, as well as enlightening in terms of applying best practice in their own context. Delegates found a renewed commitment and passion for palliative care and related health interventions for children and adults with life-limiting and life-threatening illnesses within the region. This conference highlighted many of the developments in palliative care in the region and served as a unique opportunity to bring people together and serve as a lynchpin for palliative care provision and development in Africa. The delegates were united in the fact that together we can 'span diseases,' 'cross borders,' and realise the 'African Dream' for palliative care.

Ethnicity and physician-older patient communication about alternative therapies.

OBJECTIVES: The purpose of this study was to describe ethnic differences in physician-patient communication about alternative therapies, using a data set comprised of audiotapes and transcripts of primary care medical visits. METHODS: The data set was collected during 1995 at the family practice and general medicine clinics at the University of New Mexico Health Sciences Center, Albuquerque, NM. Twenty-seven (27) resident physicians and 205 of their Hispanic and non-Hispanic white patients age 50 and over participated. RESULTS: Almost 18 percent of patients reported using one or more alternative therapies during the preceding month. Herbal medicine was the most widely used therapy. Eighty-three percent (83%) of patients who reported using an alternative therapy in the previous month did not tell their physicians. Physicians asked one or more questions about alternative therapies during only 3.4% of encounters. Only 2% of patients asked their physicians one or more questions about alternative therapies. There were no ethnic differences in physician-older patient communication about alternative therapies. DISCUSSION: Physician-patient communication could be improved to enhance physician understanding of the spectrum of interventions patients pursue to improve their health.

Physician-patient communication about over-the-counter medications.

The purpose of this study was to describe physician-patient communication about over-the-counter medications using a data set comprised of audio-tapes and transcripts of 414 primary care medical visits. The data set was collected during 1995 at the family practice and general medicine clinics at the University of New Mexico Health Sciences Center. Twenty-seven resident physicians and 414 of their adult patients participated. Fifty-seven percent of patients reported using one or more OTC medications during the past month. Analgesics, cold or allergy products, and antacids were the most commonly used OTC medications. White patients were significantly more likely to have reported using an analgesic in the past month than non-white patients. Female, white, and younger patients were more likely to have reported using a cold or allergy product in the past month than male, non-white, and older patients. Approximately 58% of patients discussed OTC medications with their physicians. Older patients and female patients as well as patients who reported using an antacid in the past month were significantly more likely to have discussed OTC medications with their physicians. Physicians asked questions about OTC medications during only 37% of encounters. Patients asked questions about OTC medications during 11% of encounters. Patient ethnicity did not influence physician or patient question-asking and information-giving about OTC medications. Male physicians were more likely to state information and ask questions about OTC medications than female physicians. Patients were more likely to ask male physicians questions about OTC medications. Physicians were more likely to state OTC information to and ask OTC questions of female and older patients. Physicians were more likely to ask less educated patients questions about OTC medications. Less educated patients were more likely to ask physicians questions about OTC medications. Despite the fact that more than half of all patients reported using OTC medications, physicians asked questions about OTC use during only approximately one-third of encounters. Of patients who reported using an OTC medication in the past month, 58% did not tell their physicians, yet only 14% of patients believed that it was not important for the physician to know about their OTC use. Physician-patient communication about OTC medications should be encouraged so that the patient becomes a collaborative partner in medication management.

Practice parameter: management of dementia (an evidence-based review). Report of the Quality Standards Subcommittee of the American Academy of Neurology.

OBJECTIVE: To define and investigate key issues in the management of dementia and to make literature-based treatment recommendations. METHODS: The authors searched the literature for four clinical questions: 1) Does pharmacotherapy for cognitive symptoms improve outcomes in patients with dementia? 2) Does pharmacotherapy for noncognitive symptoms improve outcomes in patients with dementia? 3) Do educational interventions improve outcomes in patients and/or caregivers? 4) Do other nonpharmacologic interventions improve outcomes in patients and/or caregivers? RESULTS: Cholinesterase inhibitors benefit patients with AD (Standard), although the average benefit appears small; vitamin E likely delays the time to clinical worsening (Guideline); selegiline, other antioxidants, anti-inflammatories, and estrogen require further study. Antipsychotics are effective for agitation or psychosis in patients with dementia where environmental manipulation fails (Standard), and antidepressants are effective in depressed patients with dementia (Guideline). Educational programs should be offered to family caregivers to improve caregiver satisfaction and to delay the time to nursing home placement (Guideline). Staff of long-term care facilities should also be educated about AD to minimize the unnecessary use of antipsychotic medications (Guideline). Behavior modification, scheduled toileting, and prompted voiding reduce urinary incontinence (Standard). Functional independence can be increased by graded assistance, skills practice, and positive reinforcement (Guideline).

Family issues in dementia: finding a new normal.

Caring for individuals with dementia poses significant hazards and can have lasting effects on the health, well being, and quality of life of family members. Families need guidance from physicians to support and maintain the dignity of the patient with dementia throughout the degenerative disease trajectory. There is a rational basis for family education and counseling strategies aimed at increasing effectiveness and reducing risks to families who provide care. Family care for patients with Alzheimer's should be directed toward defining a "new normal."

Social issues of the Alzheimer's patient and family.

Families caring for a person with Alzheimer's disease (AD) soon discover that it is unlike any other illness. Coping with a degenerative brain disease is much different than dealing with a physical disability. AD is more disruptive to, and has greater impact on, the family than other chronic diseases. AD caregiving carries with it a high financial, social, and emotional price. Families must work toward effectively coping with the disease, decreasing the harmful effects on the family, and keeping family conflicts to a minimum. Support groups can provide families with much-needed information on the disease, emotional and practical support, and an expressive or advocacy outlet. Formal services can help relieve some of the burden of caring for an AD patient. Family members must remember that there is no "right" way to care for a person with AD, and each family must determine, with the help of the appropriate professionals and services, how to best meet its own needs. Given the burdens of care, however, even small interventions may translate into improvements in the quality of life or confidence of the caregiver.

Diagnosis and treatment of Alzheimer disease and related disorders. Consensus statement of the American Association for Geriatric Psychiatry, the Alzheimer's Association, and the American Geriatrics Society.

OBJECTIVE: A consensus conference on the diagnosis and treatment of Alzheimer disease (AD) and related disorders was organized by the American Association for Geriatric Psychiatry, the Alzheimer's Association, and the American Geriatrics Society on January 4 and 5, 1997. The target audience was primary care physicians, and the following questions were addressed: (1) How prevalent is AD and what are its risk factors? What is its impact on society? (2) What are the different forms of dementia and how can they be recognized? (3) What constitutes safe and effective treatment for AD? What are the indications and contraindications for specific treatments? (4) What management strategies are available to the primary care practitioner? (5) What are the available medical specialty and community resources? (6) What are the important policy issues and how can policymakers improve access to care for dementia patients? (7) What are the most promising questions for future research? PARTICIPANTS: Consensus panel members and expert presenters were drawn from psychiatry, neurology, geriatrics, primary care, psychology, nursing, social work, occupational therapy, epidemiology, and public health and policy. EVIDENCE: The expert presenters summarized data from the world scientific literature on the questions posed to the panel. CONSENSUS PROCESS: The panelists listened to the experts' presentations, reviewed their background papers, and then provided responses to the questions based on these materials. The panel chairs prepared the initial drafts of the consensus statement, and these drafts were read by all panelists and edited until consensus was reached. CONCLUSIONS: Alzheimer disease is the most common disorder causing cognitive decline in old age and exacts a substantial cost on society. Although the diagnosis of AD is often missed or delayed, it is primarily one of inclusion, not exclusion, and usually can be made using standardized clinical criteria. Most cases can be diagnosed and managed in primary care settings, yet some patients with atypical presentations, severe impairment, or complex comorbidity benefit from specialist referral. Alzheimer disease is progressive and irreversible, but pharmacologic therapies for cognitive impairment and nonpharmacologic and pharmacologic treatments for the behavioral problems associated with dementia can enhance quality of life. Psychotherapeutic intervention with family members is often indicated, as nearly half of all caregivers become depressed. Health care delivery to these patients is fragmented and inadequate, and changes in disease management models are adding stresses to the system. New approaches are needed to ensure patients' access to essential resources, and future research should aim to improve diagnostic and therapeutic effectiveness.

The perspective of the person with Alzheimer disease: which outcomes matter in early to middle stages of dementia?

As more persons with Alzheimer disease are diagnosed earlier in the disease progression, their perspectives, values, and preferences warrant closer attention from clinicians, service planners and providers, and the research community. Demographic changes suggest that more persons with early-stage Alzheimer disease will be living alone. Their treatment, housing, and service preferences, as well as values about desirable health, mental health, and cognitive and functional outcomes may differ from those of their concerned families. Clinicians and researchers must identify relevant domains of life quality from the perspective of the person with dementia and develop individually sensitive, reliable, and valid instruments to assess, monitor, and evaluate outcomes of care and services.