Palliative Care Education in the Developing Countries

Individuals who have experience in palliative care in wealthier countries with well-structured health systems see the palliative care needs of developing countries as forbiddingly huge. They are aware of an increasing incidence of cancer, but health delivery systems are often patchy and deficient, medications for pain management are not widely available, and cultural considerations limit opportunities to face advanced illness and focus on symptom control in terminal illness. An increasing prevalence of HIV infection compounds palliative care needs. Medical practice focuses on interventions that promise cure and earn a good reward, while nursing standards are variable and often unsatisfactory. There is a need for demonstrations of good care and effective symptom control, even if these reach only a small fraction of the needy population. On such demonstrations can be built education programs that take account of local realities, and promote attitudes, knowledge and skills capable of gradually introducing a greater professional concern and a better prospect of effective care for the dying.     

Opioid Inaccessibility and Its Human Consequences: Reports From the Field

ABSTRACT

Strong opioids such as morphine are rarely accessible in low- and middle-income countries, even for patients with the most severe pain. The three cases reported here from three diverse countries provide examples of the terrible and unnecessary suffering that occurs everyday when this essential, inexpensive, and safe medication is not adequately accessible by patients in pain. The reasons for this lack of accessibility are explored, and ways to resolve the problem are proposed.     

The International Observatory on End of Life Care

The development of palliative care is proceeding rapidly in some areas of the world, but major problems continue to exist in several countries and regions. Comparative research evidence to inform palliative care development is limited and can be difficult to obtain, especially for resource poor settings. International collaboration is needed to promote and disseminate an evidence base to support the growth of palliative care. The aims and plans of the newly created International Observatory on End of Life Care are described, together with its orientation to global partnership and collaboration. The Observatory will build on public health models to provide research-based intelligence about palliative care around the world, drawing also on cultural, historical and ethical perspectives.     

Non-cancer palliative care: Experience and challenges faced in a palliative program from Singapore

Abstract

Palliative care espouses a holistic and multidisciplinary approach applicable to stages of disease in response to needs together with disease-modifying treatments, regardless of diagnosis. While cancer is the single most common killer disease, responsible for 28% of deaths in Singapore in 2007, non-cancer diseases accounted for more than twice that at 66%. Integrating palliative care for patients suffering from end-organ failure would balance curative measures with quality of life for our frailest patients, and support these patients during their final journey. This is only possible with close cooperation between palliative care teams and organ specialists. We report our experience and insights in managing non-cancer cases in an integrative model of care over the past 4 years. We find that most families and patients suffering from end stage non-cancer conditions are able to accept palliative care after honest communication and are able to talk about end-of-life plans. The majority of patients can achieve satisfactory symptom control, be cared for, and die in a place of their choice with the support of a palliative home care program without the need for frequent hospitalizations. Sustaining this model of care requires diligence, collaboration, and upgrading of skills based on coordinated resource allocation.     

Facilitators and barriers to developmentally supportive care for preterm infants in low and middle-income countries: A scoping review

BackgroundPreterm birth and its associated complications are a major cause of neonatal mortality worldwide. Approximately 15 million preterm infants are born annually, most births occurring in Sub-Saharan Africa and South Asia. However, Developmentally Supportive Care—an evidence-based intervention reported to improve the survival of preterm infants, is under utilized in Low and Middle-Income Countries. This review focuses on examining the barriers to, and facilitators of, Kangaroo Mother Care, positioning (nesting and swaddling), and control of the external neonatal intensive care environment in low- and middle-income countries.MethodsSix databases were systematically searched between January 2000 to April 2020. A search of the grey literature was also conducted. Two independent reviewers screened the citations of the retrieved papers and abstracted data for included studies based on predetermined inclusion/exclusion criteria.ResultsA total of 15853 articles were retrieved from the search. A full-text review was conducted on 155 articles. Thirty-two papers were identified and included in the review. Thirty papers focussed on KMC, two papers focused on noise control. No studies were identified on positioning and light control in the NICU. Barriers identified included lack of knowledge of DSC practices in both health care workers and family caregivers, existing cultural norms, and the absence of protocols and guidelines for practice. Facilitators included; healthcare worker training, leadership and support from health care facility managers to family caregivers, and available infrastructure.ConclusionFurther studies that comprehensively examine DSC implementation in Low-Middle-Income countries are required in order to improve sustained DSC practices.     

The Role of Palliative Care in Burns: A Scoping Review

ContextPatients with severe burns may face distressing symptoms with a high risk of mortality as a result of their injury. The role of palliative care in burns management remains unclear.ObjectiveTo appraise the literature on the role of palliative care in burns management.MethodsWe used scoping review with searches in 12 databases from their inception to August 2019. The citation retrieval and retention are reported in a PRISMA statement.Findings39 papers comprising of 30 primary studies (26 from high-income and four from middle-income countries), four reviews, two editorials, two guidelines, and one expert board review document were retained in the review. Palliative care is used synonymously with comfort and end-of-life care in burns literature. Comfort care is mostly initiated when active treatment is withheld (early deaths) or withdrawn (late deaths), limiting its overall benefits to burn patients, their families, and health care professionals. Futility decisions are usually complex and challenging, particularly for patients in the late death category, and it is unclear if these decisions result in timely commencement of comfort care measures. Three comfort care pathways were identified, but it remained unclear how these pathways evaluated “good death” or supported the family which creates the need for the development of other evidence-based guidelines.ConclusionPalliative care is applicable in burns management, but its current role is mostly confined to the end-of-life period, suggesting that it is not been fully integrated in the management process. Evidence-based guidelines are needed to support the integration and delivery of palliative care in the burn patient population.     

Factors influencing oncology nurses’ approaches to accommodating cultural needs in palliative care

Aims and objectives. The purpose of this study is to explore the social construction of cultural issues in palliative care amongst oncology nurses. Background. Australia is a nation composed of people from different cultural origins with diverse linguistic, spiritual, religious and social backgrounds. The challenge of working with an increasingly culturally diverse population is a common theme expressed by many healthcare professionals from a variety of countries. Design. Grounded theory was used to investigate the processes by which nurses provide nursing care to cancer patients from diverse cultural backgrounds. Methods. Semi‐structured interviews with seven Australian oncology nurses provided the data for the study; the data was analysed using grounded theory data analysis techniques. Results. The core category emerging from the study was that of accommodating cultural needs. This paper focuses on describing the series of subcategories that were identified as factors which could influence the process by which nurses would accommodate cultural needs. These factors included nurses’ views and understandings of culture and cultural mores, their philosophy of cultural care, nurses’ previous experiences with people from other cultures and organisational approaches to culture and cultural care. Conclusions. This study demonstrated that previous experiences with people from other cultures and organisational approaches to culture and cultural care often influenced nurses’ views and understandings of culture and cultural mores and their beliefs, attitudes and behaviours in providing cultural care. Relevance to clinical practice. It is imperative to appreciate how nurses’ experiences with people from other cultures can be recognised and built upon or, if necessary, challenged. Furthermore, nurses’ cultural competence and experiences with people from other cultures need to be further investigated in clinical practice.     

The global movement towards a public health approach to substance use disorders

Drug misuse is a global problem. Markets that supply illegal drugs often span international borders. However, each country has different primary drugs of use, populations that are using and consequences of use. The policy approach of each country to addressing substance use disorders can be characterized along a continuum between purely public health approaches and purely law enforcement approaches. Historically, a law enforcement approach has been the primary strategy in much of the world. However, there is a growing movement towards use of a public health approach. This article provides four case examples, Ukraine, Philippines, Nigeria and Peru, where there is movement to develop addiction public health infrastructure. The work varies by country, but includes regulatory changes, workforce development and resource allocation all of which are supported by the United Nations Office on Drugs and Crime (UNODC) and multi-national organizations that provide training and technical assistance, funded primarily by the European Union and United States governments. All four countries highlighted have barriers to moving towards a more public health approach which may include popularity of the law enforcement approach, turbulent government environments, and economics of being a drug producing nation. However, whether starting from the top down with changed policies, such as Ukraine or from the bottom up with training community members as in the Philippines, each country provides an example of how donor resources can be applied to make the transition towards a more humane and evidence-based approach to addressing substance use disorders.

Key Messages

1. While the primary approach to addressing drug use has focussed resources on law enforcement for over 100 years, many countries are adopting elements of a public health approach including prevention and treatment of the harms of drug use including substance use disorders.
2. There is a growing global movement to make policy towards drugs and drug users more humane and evidence-based.
3. Donor nation resources can be applied in a variety of combinations to improve care and outcomes for people who use drugs in low- and middle-income countries.

     

Centrality of spirituality/religion in the culture of palliative care service in Indonesia: An ethnographic study

Experiencing life‐threatening illness could impact on an individual’s spirituality or religious beliefs. In this paper, we report on a study which explored cultural elements that influence the provision of palliative care for people with cancer. A contemporary ethnographic approach was adopted. Observations and interviews were undertaken over 3 months with 48 participants, including palliative care staff, patients, and their families. An ethnographic data analysis framework was adopted to assist in the analysis of data at item, pattern, and structural levels. Religion was identified as central to everyday life, with all participants reporting being affiliated to particular religions and performing their religious practices in their daily lives. Patients’ relatives acknowledged and addressed patients’ needs for these practices. Staff provided spiritual care for the patients and their relatives in the form of religious discussion and conducting prayers together. An understanding that religious and spiritual practices are integral cultural elements and of fundamental importance to the holistic health of their patients is necessary if health‐care professionals are to support patients and their families in end‐of‐life care.     

New developments in international nursing ethics

This article has described numerous activities in nursing ethics at international levels. It acknowledges the larger context within which nurses practice by focusing on selected issues involved in resource allocation and death and dying, cross-culturally. The questions raised about universally shared moral principles reflects the larger questions of cultural and ethical relativism. The discussions of new developments in international nursing ethics focuses on international conferences, the teaching of nursing ethics, national nursing associations, and other professional groups that are actively involved in health care or nursing ethics. Finally, the development of international nursing ethics research studies is providing new knowledge about the scope of ethics within nursing and the nature of nursing care worldwide. Nurses are involved in some aspects of these new developments in nursing ethics in all countries. As they examine and reflect on ethical principles, virtues, and on an ethics of caring, they bring a new dimension to their work as nurses. This new dimension stands as one of the oldest and most central foundations in professional nursing.     

The challenges in adopting care pathways for the dying for use in care homes

An increasing number of older people are requiring palliative care within the care home setting. There are currently a number of initiatives that are generally gaining approval and being implemented within health care in general with the goal of improving standards of palliative care. These are the Integrated Care Pathway for the dying person, the Gold Standards Framework and the Preferred Place of Care document. The Liverpool Care Pathway is being used across a wide range of care settings to improve care in the last 24–48 hours of life and is being implemented in care homes as part of a national rollout programme. This article aims to explore some of the issues associated with the use of the care pathways in care homes, particularly without the input of additional resources and support for the care homes. It also questions the appropriateness of the pathway in its current format without further work on the specific palliative care needs of the residents dying in care homes.     

Pediatric palliative care

Progress in pediatric palliative care has gained momentum, but there remain significant barriers to the appropriate provision of palliative care to ill and dying children, including the lack of properly trained health care professionals, resources to finance such care, and scientific research, as well as a continued cultural denial of death in children. This article reviews the epidemiology of pediatric palliative care, special communication concerns, decision making, ethical and legal considerations, symptom assessment and management, psychosocial issues, provision of care across settings, end-of-life care, and bereavement. Educational and supportive resources for health care practitioners and families, respectively, are included.     

Maintaining the continuity of care in community children's nursing caseloads in a service for children with life‐limiting,life‐threatening or chronic health conditions: a qualitative analysis

Aims and objectives. To explore the factors that influence community children’s nurses’ (CCNs’) perceptions of their workload. To identify ways that CCNs develop and maintain continuity of care and carer. Background. The notion of continuity of care/carer has been central to nursing development for the last 30 years. In the literature, community nursing is used to illustrate the concepts of responsibility relationships and continuity of care/carer. However, an assumption is made that the case allocation method is assumed to be the norm in community nursing. The recent UK literature indicates that the case allocation method is not necessarily working in community nursing. It suggests that there may be continuity of care via teams of community nurses and health care assistants, but not necessarily continuity of carer. This seems to reinforce the notion that ideas about the nature of nursing work, the relationship between nurse and client and the mode of care are constructed, contextual and not self‐evident. Little has been written about this regarding CCN work. Design. Collaborative action research design using qualitative methods. Methods. In depth interviews with six CCNs drawn from a NHS funded, PCT hosted CCN service in the West of England; documentary analysis of caseload data; thematic analysis of analytical memos and field‐notes. Results. The analysis of the CCNs’ interviews identified the mechanisms and strategies they used for managing their work, meeting clients’ needs while ensuring that continuity of care and carer was maintained. From their responses to questions, the responsibility relationship and autonomy characteristics of their role were perceived to be a good thing. However, they acknowledged that working in such a way is stressful and provided examples from their everyday working lives. They emphasised the role of support from colleagues as an important way of maintaining and sustaining the responsibility relationships inherent in their work pattern. Conclusions. The findings from this study seem to support the notions prevalent in the literature that ideas about the nature of nursing work, the relationship between nurse and client and the mode of care are socially constructed and automatically given. The group of CCNs in this project actively manage their caseloads to maintain the continuity of care and carer in a particular model of service delivery. Relevance to clinical practice. This project provides some illustrations of the way continuity of care may be achieved at the informational, management and relational levels of practice. The typology of continuity of care allows the discrete areas of CCN work to be highlighted and explored, providing insights on an area of practice that is under‐reported. The study provides a basis for future research to examine the different configurations of CCN services for the same client group or services for different clients, e.g. diabetes care, so that service providers may configure provision to meet children’s and their family’s needs.     

The specialist palliative care team in Forlì, Italy

 A specialist palliative care team (SPCT) for the care of terminal cancer patients was established at Forlì in 1986. Over the years, its staff and the patients cared for have been increasing in numbers up to the present levels of importance. For 12 years the service was supplied by a private institution, Istituto Oncologico Romagnolo (IOR). The National Health Service (NHS) has since stepped in and is now supplying home care directly, leaving the IOR with a cultural, supporting, role and with the promotion of volunteer recruitment. The care provided by the specialist group active in the patients' homes is integrated into the primary care provided by the family doctors. A plan is being realized to establish a palliative care unit (PCU) within the city hospital. The group has also been engaged in research for many years, giving special attention both to prognostic factors in very advanced cancer patients and to the organization and evaluation of the service costs. Moreover, two training courses in palliative care are organized biennially, one for all health workers in the region and one for volunteers co-operating with the medical teams. Published online: 3 August     

Quality of life of cancer patients receiving inpatient and home-based palliative care

AIMS: This paper reports a comparative study of the symptom experience, physical and psychological health, perceived control of the effects of cancer and quality of life of terminally ill cancer patients receiving inpatient and home-based palliative care, and the factors that predict quality of life. BACKGROUND: Quality of life is a major goal in the care of patients with terminal cancer. In addition to symptom management, psychological care and provision of support, being cared for at home is considered an important determinant of patient well-being. A more comprehensive understanding of the impact of cancer on patients and their families will inform the delivery of palliative care services. METHODS: Fifty-eight patients with terminal cancer (32 inpatients, 26 home-based) were recruited from major palliative care centres in Australia in 1999. A structured questionnaire designed to obtain sociodemographic information, medical details and standard measures of symptoms, physical and psychological health, personal control and quality of life was administered by personal interview. RESULTS: The two groups were similar on most demographic measures, although more home-care patients were married, of Australian descent and had private health insurance cover. The most prevalent symptoms reported were weakness, fatigue, sleeping during the day and pain. Patients receiving home-based services had statistically significantly less symptom severity and distress, lower depression scores, and better physical health and quality of life than those receiving inpatient care. Home-care patients also reported statistically significantly more control over the effects of their illness, medical care and treatment received, and the course of the disease. Multiple regression analyses showed that better global physical health, greater control over the effects of cancer and lower depression scores were statistically significant predictors of higher quality of life. CONCLUSIONS: The main issues arising from the findings for nurses are the early detection and management of both physical and psychological symptoms, particularly fatigue, pain, anxiety and depression, and the need to use strategies that will empower patients to have a greater sense of control over their illness and treatment. Research is needed to identify other factors that may impact on quality of life, and to establish the extent to which inpatient and home-based care meets the needs of both the patient with terminal cancer and their family.     

Population-based approaches for reducing stroke risk

The global burden of stroke is particularly substantial in low- and middle-income countries. There are several risk factors or determinants of stroke and other cardiovascular diseases that are modifiable and have been shown to reduce the risk of stroke in at-risk persons. The high-risk or individual approach to prevention uses screening to identify such persons and medication is then usually required; however, to affect change in risk in a community, a population or mass approach is required to shift the community population to a lower risk profile. The community approach is usually accomplished through legislation, health education and wider economic means. In this review, the authors discuss the population approach to primary stroke prevention.     

Restructuring the American health care system: an analysis of Nursing's Agenda for Health Care Reform.

Equal access to health care for all citizens is a hotly debated issue of the American health care system. Different plans for reform that would allow equal access to health care have been proposed, but few include nurses as key health care providers. To correct this oversight, a coalition of more than 60 national nursing and health care organizations has created Nursing's Agenda for Health Care Reform, a blueprint for restructuring the health care system. This article reviews the agenda within the framework of the ethical theory of distributive justice. Distributive justice allows for the allocation of health care resources in a manner that is fair but not necessarily equal for all. The agenda addresses the basic level of health care needed by all Americans and supports the provision of primary care by nurse practitioners. Nurse practitioners need to be aware of plans to reform the health care system and should be supportive of those plans that enhance nurse participation in the health care system. Nursing's Agenda for Health Care Reform is a plan that encourages the health care consumer's participation and promotes nursing care as the link between the consumer and the health care system.     

The Pan American Health Organization: its structure and role in the development of a palliative care program for Latin America and the Caribbean

In recent years palliative care has emerged as a major public health care issue, both in developed and developing countries. The rising number of cancer deaths as a result of increased tobacco consumption, control of other diseases, lack of preventive programs, and the difficulties of accessing curative treatments in many countries have made palliative care and pain relief the appropriate, and in many cases, the only option for patients with advanced disease. The World Health Organization (WHO) and its Regional Office for the Americas, the Pan American Health Organization (PAHO), have promoted palliative care as a component of their cancer control program. Some health care workers and policy makers are not adequately informed about the role that intergovernmental agencies such as WHO and PAHO play in the health care field. This has led to confusion and, in some cases, misjudgment of the organization. This paper summarizes the structure and role of PAHO and, specifically, its participation in the development of a palliative care program for Latin America and the Caribbean. Many health care professionals, administrators, and policy makers are unaware of the organization's objectives in this area and the tools available to assist in the implementation and development of national programs to care for patients with advanced cancer. The information in this paper is based on data found in the PAHO and WHO web sites, as well as other technical publications from different sources, including individuals not formally associated with WHO or PAHO.     

Protecting an adult identity: A grounded theory of supportive care for young adults recently diagnosed with cancer

BackgroundFor adolescents and young adults living in high-income countries cancer remains the most common disease-related death. Increasing survival rates and projected longevity are positive outcomes, although long-term consequences of cancer and/or its treatment will likely increase the global burden of cancer. In low and middle-income countries the impact and needs of young adults with cancer are largely unknown and require further attention. However, universal studies have revealed that cancer-related needs for this group are multifactorial, complex and largely unmet. In response to these findings, the body of work on supportive care for young adults with cancer is growing. Yet, there is no published research in the context of the United Kingdom, regarding the role young adults play in managing their supportive cancer care needs.ObjectiveTo explore the experience, purpose and meaning of supportive cancer care to young adults recently diagnosed with cancer.Design, setting and participantsUsing constructivist grounded theory, data were collected in one to one interviews with eleven young adults (seven women and four men aged 19–24 years) being treated for cancer in two English hospitals. Data were analyzed using open and focused coding, constant comparison, theoretical coding and memoing, and this enabled construction of a subjective theory.ResultsYoung adults in this study interpreted cancer as an interruption to the events, experiences and tasks forming the biographical work of their adult identity. Data analysis led to the construction of the theory, ‘protecting an adult identity: self in relation to a diagnosis of cancer in young adulthood’. This theory arose from three categories: fragility of self, maintaining self in an altered reality and mobilizing external resources. Young adults faced the loss of their early adult identity. Interpreting cancer as a temporary interruption, they sought to re-establish their identity by directly and indirectly managing their supportive care needs.ConclusionsThese findings contribute to the understanding of young adults’ desired purpose of supportive cancer care. There are also implications for how health and social care professionals provide supportive care interventions to meet the needs of this population.     

Assessment of Health Literacy in College-Age Females to Reduce Barriers to Human Papilloma Virus Vaccination

Assessing an individual’s healthy literacy and cultural background is important when discussing any health issue. This review explores specific concepts on HPV health literacy and how health disparities can influence college-age students’ knowledge about HPV-associated cancer and the importance of obtaining the 3 sequential doses of the Gardasil HPV vaccine. This information is relevant to practicing nurses, nurse practitioners, and midwives who provide direct individual care to adolescent and college-age students. Practical questions are asked to promote health literacy, provide culturally sensitive care, and reinforce health education on HPV, cervical cancer, and the HPV vaccine.