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Palliative Care in Botswana

Progress and Challenges

Matula, Samuel T., MSN, RN, PCNS-BC

Journal of Hospice & Palliative Nursing: June 2019 - Volume 21 - Issue 3 - p E7–E12
doi: 10.1097/NJH.0000000000000517
Global Exemplar Series
Free

Palliative care is an essential aspect of care for patients with serious illness and their families, but a large proportion of the world’s population, particularly in developing countries like Botswana, do not have access to it. In Botswana and other developing countries, palliative care is often sporadic and lacks comprehensive delivery owing to a lag between policies and practice and a lack of knowledge about palliative care among health care professionals and communities. In this article, the progress of palliative care in Botswana is discussed by first evaluating at the relevance of palliative care in Botswana given the burden of diseases and resources available for disease management. Second, the palliative care delivery models and their successes and shortcomings in Botswana context are discussed. Third, the Botswana palliative care services are viewed on a global scale to illuminate progress and areas that need improvement. Thereafter, using a case as a reference, this article highlights the challenges faced by Botswana palliative care services. Finally, some areas that can be targeted to improve palliative care services in Botswana and possible solutions are discussed. Overall, palliative care is at infancy stage in Botswana and many opportunities exist in education, research, and resource support to transform it into a full-fledged service.

Samuel T. Matula, MSN, RN, PCNS-BC, is PhD candidate, University of Pennsylvania School of Nursing, Philadelphia, and is Lecturer, University of Botswana, Gaborone.

Address correspondence to Samuel T. Matula, MSN, RN, PCNS-BC, University of Pennsylvania School of Nursing, Claire M. Fagin Hall, 418 Curie Blvd, Philadelphia, PA 19104 (matulas@nursing.upenn.edu).

The author has no conflicts of interest to disclose.

There is a significant demand for palliative and end-of-life care services by patients and their families in low- and middle-income countries (LMICs), particularly in sub-Saharan Africa.1-3 The sub-Saharan African region maintains the highest global rates of mortality, morbidity, and disease burden as well as an increase in risk factors for chronic and noncommunicable diseases (NCDs).4,5 Communicable diseases, such as human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS), and noncommunicable diseases such as cancer, and road traffic accidents, are the primary causes of morbidity and disability.6-8 While palliative care needs are rising worldwide, some countries are behind in providing comprehensive palliative care and ensuring dignity and support for dying patients and their families. Although it is each country’s responsibility to ensure palliative care services are provided to its citizens, the lack of palliative care services in some countries negatively affects the global health outlook and economy. For instance, lack of palliative care services affects the global population’s morbidity and the world economy through overuse of health care services and caregiving responsibilities passed down to families, particularly women and children. This creates less resources in place to affect health and contribution to the world economy. Botswana is just 1 of the sub-Saharan African countries in urgent need of comprehensive and reliable palliative care services.

Palliative care is rooted in the acknowledgment of death and dying as a holistic event—a social transaction influenced and affected by several aspects of human dynamics, including grief, caregiving, and spiritual and psychosocial aspects of the individual, the family, and community.3,7,9 Despite the noted benefits of palliative care in maintaining dignity and promoting stability for patients and families in the face of serious illness, large populations of patients and families in LMICs like Botswana do not have access.1-3,8 When palliative care is available, it usually lacks a multidisciplinary approach to care, and the services are often limited by scarce resources in the face of a grim prognosis.1,2,10 The purpose of this article is to explore palliative and end-of-life care in Botswana drawing from the available literature and this author’s personal experiences as a nurse and consumer of health care services in Botswana. The relevance of palliative and end-of-life care in Botswana will be briefly described, followed by frequently observed palliative and end-of-life care practices, the level of Botswana palliative care in a global scale, challenges and opportunities faced, and lastly, future directions for palliative and end-of-life care in this African nation.

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BACKGROUND

Botswana is a landlocked ethnically diverse country with a population of about 2 039 000, of which 811 000 are children younger than 18 years.6,11 Botswana is classified as an upper middle-income country and boasts a robust public health system despite it being geographically located in sub-Saharan Africa, where most of the poorest nations are found. In Botswana, health care is delivered via a publicly funded decentralized system. The resources and complexity of care are tiered based on population size in each location.4 Botswana also has 1 of the most substantial health spendings per capita among LMICs owing to the high prevalence of HIV and providing of antiretroviral therapy to all and its goals to provide its citizens with comprehensive, quality, and accessible care.6

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THE RELEVANCE OF PALLIATIVE CARE IN BOTSWANA

Botswana has a high burden of serious illnesses that require palliative care service. Botswana is mostly recognized for its success story of managing HIV/AIDS through the intelligent utilization and distribution of antiretroviral drugs, but this positive effort has led to a large population of people living with HIV who often present with several opportunist infections, particularly cancers that require palliative care.12 Despite the reduction in HIV/AIDS-related morbidity and deaths, several other communicable diseases and NCDs have been increasing, including non–HIV-related cancers, extreme cases of tuberculosis, trauma-related injuries, and cardiovascular and metabolic diseases, often carrying grim prognosis in this resource-constrained context.2,6,7 The end stages and complications of these diseases often require palliative and end-of-life care. Although Botswana’s policies and strategies are well positioned for palliative care, its implementation continues to lag.1,7,8,13

Despite Botswana budgeting a significant share for the health of its citizens, resources are a challenge, especially for specialized care such as dialysis, step-down care, burn units, and transplant services. The shortage of specialists for advanced care heightens barriers for patients seeking palliative care services.1,4,8 Patient health-seeking behaviors are also a contributory factor to the increased need for palliative care services. For example, patients tend to present with late-stage diseases with poor prognosis and struggle to obtain even minimal help from health professionals because of insufficient care access.14,15 Other patients decline the recommended allopathic treatment and alternatively seek care from traditional healers, often leading to further complications and progression of the disease.14 Presented with a large number of patients that may require palliative care, Botswana’s Ministry of Health has moved toward developing interventions such as the 2013-2018 National Palliative Care Strategy (NPCS). National Palliative Care Strategy succeeds the 2003 National Strategy and Guidelines and prioritizes education to clinicians to impart knowledge about palliative care.7,13 Although these efforts to contribute to the improvement of the quality of life of all chronically and terminally ill patients and their families are visible in some areas across the country, comprehensive palliative care services are still an elusive dream to most of the patients in need in Botswana.1

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PALLIATIVE CARE DELIVERY IN BOTSWANA

Institutional Palliative care

Institutional palliative care refers to the care of patients and their families in an institution where resources are available, such as an intensive care step-down unit, general ward, or a day-care institution that offers services such as feeding, bathing, leisure, and entertainment.16 Hospitals often have access to multidisciplinary teams, which is a cornerstone of palliative care.9,10 In an adequately resourced setting, health personnel usually focus on dealing with physical symptoms and provide psychosocial support while using various interventions to alleviate symptom burdens for patients and overall distress for families.

Institutional-based palliative care, although desirable in Botswana and other LMICs, is a challenge to achieve owing to a shortage of resources and health care professionals.7,13,17 Additionally, the lack of palliative care knowledge donned by health care workers in Botswana may lead to futile invasive procedures and provide false hope to patient and families, potentially leading to perceptions of the health care team as a “failure” and averting more people from seeking care in such institutions.17 Access to care is another substantial concern. Most hospitals in Botswana are located in urban and semiurban areas, and there are limited or no facilities in rural areas. Therefore, in the event of a patient’s hospitalization, families will need to travel every day to visit their loved ones, which can bring financial and overall strain on family members. It is a difficult situation for all involved. The patient is apart from his/her community and is vulnerable to loneliness. The loneliness is worsened by the fact that the institutions lack aesthetic environments or facilities for leisure. Although prayer is permitted in most institutions in the country, there is often no designated space to maintain spiritual well-being or practice alternative healing traditions.18 Most people in Botswana have traditional beliefs that are centered on treatment using alternative medicines, such as herbs and native doctors’ concoctions and spirit exorcism, often discouraged in hospitals because of lack of space and privacy, lack of understanding by health professionals, and sometimes a conflict of beliefs between traditional and conventional medicine.14 Efforts to address these impediments were addressed at the policy level through the Botswana NPCS,7 but there is still no visible integration of alternative and conventional medicine apart from prayer during visiting hours in Botswana hospitals.1

The current distribution of health resources favors institutions such as hospitals for provision of comprehensive palliative care services, but the limited knowledge regarding palliative care among health professionals, the shortage of resources such as tranquil and aesthetic rooms and prayer rooms, and an overwhelming case burden for health care workers increase the risk of inadequate care for palliative patients in such institutions.

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Community Home-Based Care

Community home-based care (CHBC) is the principal avenue for the provision of palliative care in Botswana.7,17 Community home-based care was introduced at the height of HIV scourge in 1994 to relieve the burden of terminally ill and dying AIDS patients on the hospitals.7 Community home-based care individual access to community care in a familiar environment, which reduces the family burden of daily travel to visit their loved ones in institutions in urban and semiurban areas. The family home also provides the family access to any spiritual support and alternative treatment of their choice, with fewer restrictions and conflicts from differing views of conventional medicine.8,14,19 Community home-based care brings family and friends closer to the patient with the support of local health centers/clinics as well as community support from nonhealth personnel in the community.7,8,20

Although CHBC is the best and most common model to provide palliative care in Botswana owing to geographic dispersion of the population and inadequate facilities for institutional palliative care, there are serious challenges to its delivery. First, CHBC provides insufficient resources to manage symptoms or promote healthy nutrition for the patient owing to a lack of equipment and skilled personnel.16,17,19,20 Second, patients receiving CHBC do not have access to the professional multidisciplinary team given that Nurses mainly manage CHBC. Nurses are often the only health care workers available in rural communities, where most chronically and terminally ill patients reside in Botswana.7,17 Third, CHBC can increase the financial cost to the family as they are required to be available to take care of the patient, which disproportionately affects the female members of the families, including the girl child.21,22 Community home-based care is associated with high caregiver burnout, which can lead to abuse, neglect, deterioration, or poor quality of life for the patient.19 One of the significant issues of CHBC that is often less addressed is patient privacy and confidentiality.14,19,22 Most of the CHBC members are part of the community and often are not trained in these issues. For example, many patients with HIV/AIDS often refuse CHBC services because of a highly stigmatized illness and fear of unauthorized disclosure to other community members.14,19,22

Although faced with challenges and limited resources, CHBC is the best option for Botswana to provide comprehensive palliative care services. Community home-based care is sustainable in terms of coverage and reduction in economic cost of bed occupancy in hospitals as well as family resources used to visit the patient. Also, given the geographic dispersion of the population in Botswana, CHBC, if properly implemented, can reach all patients across the breath of the country with less economic implications compared with institutionalized palliative care. Lastly, having the patients in their own space and within their communities will facilitate the inclusivity of palliative care, where it will involve all family members as well as honor traditions and beliefs that are not feasible in institutions across the country.

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BOTSWANA PALLIATIVE CARE SERVICES ON GLOBAL SCALE

It is essential to bring a global perspective on palliative care services to understand the status of palliative care services in Botswana fully. Botswana is currently ranked at number 72 out of 80 countries worldwide with a score of 22.8 on the overall quality of death index.23 To objectively assess the level of palliative care services in Botswana on a global scale, we look at processes, structures, and outcomes related to palliative care in Botswana. Adopting the World Health Organization palliative care public health strategy dimensions, the processes refer to the service provision, implementation, and education, whereas structures are professionals activities and advocacy groups geared toward palliative care, education, service provision centers, resource availability, and policies.24 The outcomes were the results of the process and structures, which are the quality of palliative care services and the number of people with access to those services.

Based on World Health Organization palliative care public health strategies, Botswana palliative care services is still at an infancy stage, providing only isolated palliative care services, which is the second stage on a 5-point scale (level 1, capacity building; level 2, isolated provision; level 3, generalized provision; level 4, preliminary integration; and level 5, advanced integration). Botswana has only 4 palliative care services, which is an improvement from 3 in 2006.1,25 The value of palliative care services assigned by Rhee et al reflects only institutionalized palliative care services and does not quantify the CHBC, which is widely spread in Botswana.

Regarding education, Botswana is in the process of developing postgraduate courses on palliative care and has palliative care education infused into the undergraduate health sciences courses in nursing and medicine.25 Medicine availability is also a challenge in Africa as a whole, especially for opiods.25,26 Botswana is generally doing well in medication availability, but the high prevalence of myths and misconceptions among health professionals regarding the use of opioid analgesics and restrictive policies sometimes render medicine availability as an inadequate metric to use to measure opioid analgesic use in palliative care in Botswana and other African countries.26 Also, there is limited psychological support for palliative care patients in Botswana.

According to the overall quality of death index, as reported by The Economist Intelligence Unit, Botswana’s palliative care policies and strategies are statements of broad intent with no clear milestones to achieve and mechanisms in place to help achieve those goals.23 Also, such approaches are not yet implemented at a larger scale. Only a few individuals know about their existence, and even fewer use them.

The outcomes of palliative care services in Botswana are a paltry compared with global numbers and numbers from other regional countries such as South Africa, Rwanda, Kenya, and Tanzania.23,25 Given the limited service provision, only few Botswana citizens have access to palliative care services, particularly those who reside in urban and semiurban places. Rural areas have limited access to comprehensive palliative care. The quality of palliative care depends on access to opioid analgesics and psychological support, which are both not adequate in Botswana, therefore giving the impression that the quality of palliative care services in Botswana is not good as reported by the Quality of Death Index.23

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CHALLENGES OF PALLIATIVE CARE IN BOTSWANA

Although both institutionalized palliative care and CHBC are desirable in Botswana, there are several challenges relating to palliative care in general. First, the decisions for palliative care are complex and are usually made unilaterally by health care workers with little to no input from the patient and family. Second, the community perceptions of palliative care and mythology surrounding death and illnesses play an essential role in the care of the patient. Additionally, reduced services and lack of resources also hamper the progress of palliative care. Finally, dealing with grief is a complex issue that is primarily ignored in Botswana’s culture and mostly absent from the delivery of palliative care.

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Palliative Care: A Case for Botswana

Mr T is a 52-year-old man who was seen at the local clinic over the past month with various complaints, including constipation and dark yellow discoloration of urine. He was later referred to a district hospital for diagnostic tests and was diagnosed with liver cirrhosis. Mr T smokes tobacco (leaf tobacco), approximately 20 cigarettes a day, and heavily drinks alcohol. He lives with his wife, and his children live in another district, where they work as civil servants. Mr T spends most of his time tending to his farm and cattle; he is considered a village elder and participates in various village activities. Mr T is further referred from a district hospital to a referral hospital in the city about 300 km from his village for further diagnostic tests and management.

Upon arriving in the city via ambulance, Mr T is admitted for observation while awaiting results. Mr T’s symptom burden is worsening, with difficulty in breathing due to extended abdomen, constipation, jaundice, and pruritis and pain. Because of the lack of liver transplant facilities, Mr T’s condition cannot be cured, and a focus on aggressive symptom management is used. Mr T’s wife has been visiting him at the hospital, and his children come on some weekends to check on their father. The team treating Mr T calls for a family meeting. Mrs T attends, and she is informed about Mr T’s condition and prognosis. She is also told that it will be better for Mr T to be home; he will be discharged today and sent to the district hospital, which will also send him to his home under the care of the local clinic. Mrs T is encouraged to arrange for CHBC services once she arrives at her local clinic. The social worker is informed about the decision on Mr T and comes and assesses Mr T to see which services he will need while at home. She writes a report, which Mrs T is to give to the health care providers at a local clinic for the services he needs.

The district hospital ambulance visits the referral hospital, and Mr T is transported back to the district hospital, staying as an inpatient there for only 1 day and then rapidly discharged with CHBC. Mr T interacts with his community and CHBC, and he blames his sickness on witchcraft because even the conventional medicine is unable to treat him. He has shortness of breath, cannot do much for himself, and struggles to take morphine tablets because of stomach fullness and constipation. Mrs T is the sole caretaker of Mr T, and the family now relies on Mr T’s brother to look after his livestock and fields. The children and relatives of both Mr and Mrs T come and visit them often, and Mrs T’s church congregation visits them and prays with them once every week. Mr T believes he has been bewitched by being fed the Bushveld Rain Frog (Breviceps adspersus) by his enemies and is always at loggerheads with his wife about his smoking and drinking, which he refuses to give up since he is already damaged and awaiting death. The CHBC members with the support of a local clinic nurse visit Mr T twice a week to check on his progress.

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Palliative Care Decision Making

Central to palliative care is the premise of consultation and collaboration in decision making between the clients and health care professionals, with the client’s preferences taking precedence over health care professionals’ preferences.9,14 As is recommended, persons should consider all their options at the beginning or early on in the care before making significant decisions about therapy.9,14 In Botswana and other LMICs, palliative care is presented as the last option, when there are no other life-saving interventions to offer, as it was with AIDS when CHBC was introduced.7 Local culture also perpetuates the myth that health care providers are superior to patients.14,19 This, combined with low patient/family literacy rates and a significant lack of health care worker palliative care education, prevents patient preferences from being taken seriously and integrated into the plan of care or meaningful consultations between the stakeholders. Patient and families are often approached about palliative care through a single or, more rarely, 2 counseling sessions, where only the medical officer and nurse are present.15 Other multidisciplinary team members are often consulted after all the decisions have been made, while others are not included. Families may feel like they are being pushed out of the hospital to take their patient home because there is nothing that can be done.

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Community Perceptions of Palliative Care

Palliative care is a critical component of care for people with life-limiting illnesses to improve their quality of life, but it is a complicated process that requires the input of the family and the patient. Evidence suggests that presenting palliative care options early in the care as an option helps patients and families make informed choices about their treatment,7,9 but palliative care was introduced in Botswana as a last option and with goals of reducing the burden on hospitals, and this has not changed much over the years despite efforts to integrate palliative care into early care. The timing and the way palliative care was introduced in Botswana and practiced over the years has generated a negative perception among the patients, their families, and communities. Most of the patients referred to palliative care services often feel they are being pushed out of health care systems to await their fate of dying at home rather than being given an option to die while surrounded by family and friends peacefully.15 In addition to the timing of the decisions to introduce palliative care, inadequate efforts are taken to educate the patient and family on palliative care, and its goals also contribute to this negative perceptions. Such thoughts and beliefs often bring despair and suffering to the families and patients, adding to the burden of psychological issues that the patient is already experiencing, further compromising the quality of life. This dissatisfaction with the decisions and care often go unchallenged owing to the cultural beliefs of health care worker supremacy.

Botswana is a multibelief system, but most people believe in mythology such as bad luck, witchcraft, and Badimo (ancestors) as the cause of illnesses.19 When palliative care is introduced as a last resort rather than as part of the continuum of care, it strengthens such beliefs and renders conventional medicine as ineffective to address their ailments.15 The beliefs, in turn, affect the health-seeking behavior of the individuals and their family members and sometimes causes them to label the institutions as failures.

Grief is not a well-addressed issue in Botswana, with insufficient access to counseling services, most families’ grief is not addressed at all despite transitioning the patients into palliative care. Usually, 1 or 2 meetings are held, and sometimes only the religious approach is used. Also, the inadequacy of equipment and resources for the patient in home-based care causes families to feel ignored while their patients are suffering.1,8,14 The lack of respite care and lack of knowledge by health care providers interacting with the family and patient sometimes make the life of the patient uncomfortable. Once the patient has been discharged on CHBC in Botswana, health care providers tend to view the patient as not having any needs that require attention to improving their quality of life.2,17,18 Palliative care is essential in Botswana but requires a significant shift regarding its delivery system.

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FUTURE DIRECTIONS

Although efforts to provide palliative care in Botswana are visible, there is much room for improvement as delineated in the Botswana NPCS 2013-2018.7 There is a need to move from a physical symptom focus and the pervasive view of “dumping” the patient on families because there is nothing that can be done toward addressing the psychological, social, and spiritual needs for those with progressive and noncurable forms of life-limiting illnesses. To achieve comprehensive palliative care in Botswana, there is a need for adoption of a holistic approach for palliative care needs; there is a need to educate health care providers on palliative care, provide resources and services for palliative care, and improve symptom management regardless of the location of the patient.8

The current approach of introducing palliative care as the last option should be discouraged through establishing a multidisciplinary palliative care team for each hospital that can be involved further upstream in the trajectory of care of a patient who is chronically and terminally ill.2,17 The team would be responsible for initiating and following up on palliative care patients as suggested by the Botswana Palliative Care National Strategy.7 The team should also be responsible for patient follow-up in homes with clear agreed-upon patient goals and care plans, which are revised regularly to meet the patient needs as the disease progress and a clear referral system for patient with specific needs.

There is a significant gap in both health care professional education and community education and engagement regarding palliative care as an option for managing life-limiting illness.17 The community education would address the perceptions, strengthen the family and individuals involved in decision making, and reduce the negative sentiments currently associated with palliative care in Botswana. Health care professionals’ education will help bridge the therapeutic services and palliative care.

There is a need to upscale the resources available for patients in palliative care, such as portable oxygen, availability of the drugs in the various formulation for managing pain and other symptoms as per the Botswana NPCS, clear documentation standards in palliative care, respite care services, and adequate nutrition and psychosocial support. The international community can help LMICs such as Botswana through partnerships in developing palliative care curriculum, standards of care, research and evaluation of palliative care program effectiveness, as well as in training health professionals in the palliative care and development and running of respite care services.

These recommendations can be achieved through partnerships by the Ministry of Health with the local and international organizations to provide resources, funds for research, education, and awareness as well as expertise toward policy development and implementation mechanism to improve quality and access to palliative care.

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CONCLUSION

Palliative care is essential in Botswana because of high mortality, morbidity, and growing NCD and communicable disease rates. Currently, Botswana has strong local policies relating to palliative care, but there are still significant challenges surrounding knowledge and access, initiation and follow-up processes, the involvement of family and integration of patient preferences in decision making, and accommodation of alternative medical care options in palliative care. Translating education and policy initiatives into practice is central to ensuring sustainable and comprehensive services that improve the quality of life for patients with severe illness and their families and communities. Globally, Botswana presents an opportunity for palliative care experts, partnerships for developing palliative care services focusing on education, research, and quality improvement.

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Keywords:

Botswana; community home-based care (CHBC); end-of-life care; palliative care

© 2019 by The Hospice and Palliative Nurses Association.