INTRODUCTION
In Africa, the needs for palliative care are not met by the available resources. Each year in Botswana, Ethiopia, Tanzania, Uganda, and Zimbabwe ~ 610,000 people die from HIV/AIDS and 80,800 die from cancer in a population that totals 135,000,000 (Sepulveda et al., Reference Sepulveda, Habiyambere and Amanda2003). The World Health Organization (World Health Organization, 2004) estimates that at least 1 in every 200 individuals each year in Africa needs palliative care. Because of the prevalence of cancers and Africa's HIV/AIDS epidemic, WHO projects that at least 50% of patients with HIV and 80% of patients with cancer will experience severe pain during the terminal phase of their disease (World Health Organization, 2004).
The need for palliative care is evident, yet the resources are scarce. There is a paucity of information on palliative and hospice care provision in Africa and a weak evidence base upon which to build policy and practical development (Clark et al., Reference Clark, Wright and Hunt2007). Studies have revealed that palliative care has different characteristics in different regions varying from community home-based healthcare to hospital-focused care. In addition, the vast majority of hospice care in Africa consists of nongovernmental and faith-based organizations that operate on inconsistent models of care.
Many studies also emphasize the importance of the home as part of the African identity. As individuals and families migrate, they tend to identify with their birthplace to which they long to return (Kruger, Reference Kruger1998). Based on this, healthcare has shifted strongly toward a home-based focus. A systematic review of the literature by Lerberghe et al. (Reference Lerberghe, Bethune and Brouwere1997) found that the declining African economy in the 1990s resulted in failure of hospitals to continue operating. When governments failed adequately to fund both small and larger hospitals, donor agencies, nongovernmental organizations (NGOs), and grassroots foundations began to take over many of the healthcare programs (Lerberghe et al., Reference Lerberghe, Bethune and Brouwere1997). However, a consensus for operating healthcare programs was reached through a vague understanding of healthcare implementation and access. During a time when disease control programs and hospitals were facing discredit, healthcare developed a home-based focus under the assumption that the majority of Africans maintain a rural lifestyle. Whereas historically this may have been true, economic evolution and migratory shifts demonstrate a deviation from this pattern.
The future success of African palliative care requires engagement with institutionalized healthcare systems as well as guidelines on policies and strategies for development (Clark et al., Reference Clark, Wright and Hunt2007). In order to achieve this, policy makers must agree on optimal settings for palliative care. The purpose of this article is to examine opioid availability, caregiver burden, and the use of healthcare resources at the end of life by setting in order to determine the optimal setting for palliation at the end of life. The settings evaluated in this article include community home-based care programs, hospital institutions, and acute care hospices. Palliative care in Africa may not fit into the mold of the global north; however, given the present situation, exploring the evidence can serve to reduce existing barriers and help streamline national policies that determine the optimal setting in which to implement formal palliative and end-of-life services.
METHOD
A search was conducted in Ovid MEDLINE®, PubMed, and Google Scholar databases using the search terms nursing care, terminal care, end of life care, palliative care, dying, death, hospice, opioids, morphine, Africa, sub-Saharan Africa, caregivers, and place ofdeath.
We eliminated studies that did not address populations in Africa or patients at the terminal stages of illness. We also eliminated studies that assessed death from trauma, studies on children with acute symptoms of HIV/AIDS not facing the end of life, and feature stories without specific information pertaining to data or studies. We also excluded studies that were not available to read in full. We did not exclude studies based on year of publication. We included multi-method reviews involving synthesis of published evidence, cross-sectional data survey, retrospective review of records, and qualitative data based on interviews and questionnaires. In addition, we included editorials that contained relevant information on palliative care, articles published by volunteer organizations such as Red Cross, and online organizations such as the African Palliative Care Association and WHO. Of the articles that were found to qualify for this review, the references sections were searched for any additional studies that fit the criteria.
RESULTS
A search of the databases yielded 87 relevant articles found using the search terms. Of these, 22 matched the criteria. Sixteen were qualitative studies that included interviews, surveys, questionnaire, or multi-method reviews that involved a combination of the three. Four articles were statistical analyses of medical records. The articles also included one feature story and one cost accounting analysis designed to measure unit costs. A search of the references sections of each article yielded no additional articles that were available for inclusion, because of lack of article access.
Of the 22 articles deemed eligible for inclusion, eight directly addressed opioid availability, distribution, and usage in palliative care (Table 1). The studies looked at funding for opioids, described the distribution by country and setting, and evaluated usage of opioids according to type of setting.
Table 1. Studies comparing opioid analgesic availability in sub-Saharan Africa
Table 2 gives a description of caregivers as found in eight articles. Of the eight articles, five evaluated health professional caregivers (for example, nurses, volunteers, and hospital workers), and five looked at family caregivers. Table 3 looks at the ability of both professional and family caregivers to recognize and treat signs and symptoms at the end of life. Eleven studies are included in this table.
Table 2. Studies describing caregivers
Table 3. Studies describing abilities of palliative caregivers to recognize and treat end-of-life (EOL) signs and symptoms
Finally, nine studies looked at use of healthcare resources. Table 4 shows studies on place of death, issues with patients being admitted to the hospital at end of life, and availability and use of hospice.
Table 4. Studies describing use of health care resources for palliative and end-of-life care
DISCUSSION
The purpose of this review was to appraise the literature on issues in palliative and end-of-life care in Africa in order to determine the optimal setting for palliation of patients at the end of life. Twenty-two articles were included. Many of the articles were used in overlapping categories. The overwhelming majority of articles were qualitative reviews. The majority of literature came from South Africa and Uganda. South Africa's literature tended to be broader whereas most of Uganda's literature focused on its unique public health program. No randomized controlled trials were found and very few data-based studies were found. Overall, the literature on palliative and end-of-life care in Africa was sparse.
Opioid Analgesics
Palliative care largely depends upon the availability of opioid analgesics. The history of opioid availability and usage in Africa has been wrought with inconsistent funding and overall shortages in supply. Studies found that distribution and usage varied by country, site, and primary financial funding. It stands to reason that palliative care can be improved by streamlining opioid availability throughout the continent. However, the literature revealed limitation and barriers that need to be addressed.
Funding
In most cases, availability of opioids in Africa depends upon local funding. Government funding based on official national policy was rare. Two of the eight studies reviewed described the existence of government-funded morphine availability. Clark et al. (Reference Clark, Wright and Hunt2007) reported Uganda as the only African country with a national agenda of supplying morphine. The Ugandan national government has integrated palliative care into health systems at a district level. Because of this, morphine is available in hospitals, hospices, and rural community settings and is prescribed by various healthcare workers, including nurse midwives. South Africa was the only other country to have official governmental financially supported morphine distribution through policy. The drug was found in settings that included hospices, hospitals, and day clinics. Unlike Uganda and South Africa, Kenya has no official palliative care policy, rather the Ministry of Health supplies morphine to Nairobi Hospital, which is supplied by donors from the United Kingdom and the Netherlands.
The predominant source of opioid funding in the 14 surveyed countries comes from NGOs (Clark et al., Reference Clark, Wright and Hunt2007). Bates et al. (Reference Bates, Gwyther and Dinat2008) found that in Malawi, the Global Fund, and a nonprofit humanitarian initiative supply morphine. However, Bates et al. (Reference Bates, Gwyther and Dinat2008) also determined that from 2006 to 2008 morphine was no longer being imported because of inadequate reporting of usage. Data from these reports implicate scattered and unfocused efforts in funding for opioids, leading to inadequate supply and inconsistent availability.
Distribution by Country and Setting
The studies gathered for this review did not include every single African country. A review of the literature revealed the countries where documentation of supply and availability were being evaluated. Table 1 includes these studies and provides the country, location, and type of setting where opioid analgesics were made available to patients. Clark (2007) provided the largest study, cataloging opioid availability in 14 countries. The second most inclusive study was Harding et al. (Reference Harding, Powell and Kiyange2010), which included a cross-sectional survey of 14 countries: South Africa, Uganda, Kenya, Zimbabwe, Malawi, Egypt, Tanzania, Nigeria, Botswana, Cote d'Ivoire, Ethiopia, Mozambique, Namibia, and Rwanda. Of these nations, South Africa had the most care facilities with documented distribution of opioids (Harding et al., Reference Harding, Powell and Kiyange2010). According to the reviewed articles, Botswana, Cote d'Ivoire, Ethiopia, Mozambique, Namibia, and Rwanda each had the lowest number of facilities reporting opioid distribution, each with one facility reporting having opioids on site (Harding et al., Reference Harding, Powell and Kiyange2010). The sites included tertiary specialty care facilities such as hospice (35%), NGOs offering integrated services that included palliative care (56.4%), and governmental state network facilities at either a primary or secondary level such as hospitals or clinics (8.1%). The study also found that although the Ethiopian Competent Authority reported opioid availability in the country, the care facilities that were interviewed reported that no opioids were actually available for their patients and none they knew of were known to be found anywhere else in the country. This demonstrates great inconsistencies in reporting and availability that needs to be addressed.
The majority of information on opioid distribution by setting was found at the inpatient level. This included a range of facilities described previously such as hospitals, clinics, and hospices. Beck (Reference Beck1998) found some opioid distribution in hospitals in home-based care; however, nurses, the main providers in community care, were mostly unable to distribute the drug, resulting in lower distribution at the home-based care level.
In general, there was little specific information on opioid distribution in home-based settings. The majority of information simply stated a general the lack of the drug in rural areas without going into further detail. It is important to note that most of the literature on opioid distribution focused on one particular setting or institution. Only three studies included in this review, Beck (Reference Beck1998), Clark et al. (Reference Clark, Wright and Hunt2007), and Harding et al. (Reference Harding, Powell and Downing2008) specifically surveyed both inpatient and home-based sites within the same study.
Usage
Five of the studies looked at opioid usage solely in inpatient hospital setting and two of those five studies specified hospice or specialized palliative care units. Three of the eight studies examined usage in both hospital and home-based care settings. Opioids were used in all settings; however, the research suggests many barriers to adequate pain management across all settings. One study by Beck and Falkson (Reference Beck and Falkson2001) evaluated pain levels across various settings and reported that inpatients had highest levels of reported pain. The study determined that 30% of overall patients were not receiving adequate analgesics in two South African urban teaching hospitals. An earlier study by Beck (Reference Beck1998) reported poor individualization and incorrect dosing of morphine in South African hospital settings. Alsirafy et al. (Reference Alsirafy, Med and Mesidy2010) reported that only 26% of Egyptian hospice patients requiring strong opioids were adequately covered with appropriate doses.
Similarly, in South African emergency and acute care settings, inadequate pain control was the result of an inability to assess pain properly and therefore manage it appropriately (Rampanjato et al., Reference Rampanjato, Florence and Patrick2007). In contrast, the administration of continuous morphine was found to be nearly nonexistent in Uganda's public health morphine program because of distances from supplies and financial barriers (Logie & Harding, Reference Logie and Harding2005).
Interestingly, a study in Tanzania implied better breakthrough pain coverage when opioids were managed in a specific palliative care setting rather than a general inpatient unit. Kamuhabw and Ezekiel (2009) found that cancer patients being referring to the Ocean Road Cancer Institute, Tanzania's only cancer referral hospital, for symptoms of end-of-life cancer pain, were treated with both oral and injectable morphine. Of the 200 patients surveyed, 57% in the hospital felt that the morphine dose they received was effective to relieve pain. However, 73% of these patients received higher doses that were reported effective. Similarly, Beck and Falkson (Reference Beck and Falkson2001) found in South Africa that cancer patients admitted to hospice actually had the lowest level of “worst pain.” The study also found that these patients were 30% more likely to receive adjunctive therapies such as sedative/hypnotics, laxatives, topical anesthetics, and anti-emetics. In contrast, however Alsirafy et al. (Reference Alsirafy, Med and Mesidy2010) reported that only 26% of Egyptian hospice patients requiring strong opioids were adequately covered with appropriate doses.
The use of opioids at the community and home-based care level is largely understudied. Organized, statistical data on opioid usage and pain coverage in the home-based setting are severely lacking. No significant improvements were reported in managing pain at the general hospital level over the home-based care level; however, data from inpatient sites were significantly more detailed and thorough than data from home- and community-based settings. Significant differences were seen at the hospice level: studies in Tanzania and South Africa may imply better management of pain coverage in hospice; however, better usage could be attributed to the funding and distribution at the specific sites. Nonetheless, based on the literature, it appears that opioid analgesics are best used to cover pain in a hospice setting.
Nurse Prescribing Privileges
The literature found that Africa greatly lacked qualified opioid prescribers. The literature also found that nurses comprise the bulk of the healthcare workforce in many African countries (Sepulveda et al., Reference Sepulveda, Habiyambere and Amanda2003). Often, nurses were the only provider that patients came into contact with in both hospitals and rural care settings (Sepulveda et al., Reference Sepulveda, Habiyambere and Amanda2003). However, nurse prescribing power was generally nonexistent with the exception of Uganda's public health morphine program.
Uganda is the first African country to grant nurses opioid prescribing power as part of its palliative care program for people in the terminal stages of AIDS and cancer (Ramsay, Reference Ramsay2003). The government has provided free morphine since 2002, and the majority of patient care, including pain relief, is provided in the patient's own home by specially trained nurses and caregivers (Ramsay, Reference Ramsay2003). Unfortunately, training time for nurses is lengthy and expensive. It requires nurses to undergo 9 months of specialty training and tuition. Even nurses who have attained this prescription power report difficulties, such as the great travel distance to patients, and the perceived fears surrounding opioid addiction (Logie & Harding, Reference Logie and Harding2005). The costs barriers coupled with taboos about opioids suggest that Uganda's home-based morphine program may not be the best solution to the palliative care problem.
In addition to a shortage of nurses able to prescribe opioids, Logie and Harding (Reference Logie and Harding2005) also documented a shortage of pharmacists to dispense opioid medications. Only 200 licensed pharmacists were counted in Uganda. Furthermore, pharmacists reported inadequate storage space for morphine vials, resulting in stock limitations.
Issues in Caregiving
Description of Caregivers
Evaluating the demographics of caregivers of people at the end of life is important in defining future policy efforts. Eight studies were identified that described demographics of caregivers for the terminally ill toward the end stages of the disease process (Table 2). Four of these studies focused on Botswana, including one study that covered four additional countries: Ethiopia, Tanzania, Uganda, and Zimbabwe. Four of the studies focused on South Africa. Both gender and family emerged as overwhelming themes among caregivers. All of the studies identified women as the primary caregiver in each situation by a large margin. Most of the caregivers were blood relatives. Female relatives with little education in providing care provided the bulk of palliative care in the home. Lindsey et al. (Reference Lindsey, Hirschfeld and Tlou2003) surveyed households in Botswana to determine the primary caregivers and found that 66% of Batswana (the people of Botswana) surveyed households were headed by women. Specifically, these women were the primary caregivers for loved ones with HIV/AIDS at the end of life. Similarly, Nbada-Mbata and Seloilwe (2000) determined that 60% of caregivers, also surveyed in Botswana, were homemakers with no income. Furthermore, Sepulveda et al. (Reference Sepulveda, Habiyambere and Amanda2003), Lindsey et al. (Reference Lindsey, Hirschfeld and Tlou2003), and Kange'the (Reference Kang'the2009) all determined that >50% of caregivers had little or no tertiary education.
In the hospital, nurses are the majority of professional providers. Sepulveda et al. (Reference Sepulveda, Habiyambere and Amanda2003), determined that nurses comprised the bulk of the healthcare workforce in Botswana, Ethiopia, Tanzania, Uganda, and Zimbabwe . Additionally, Uys and Social (Reference Uys and Social2003) looked at inpatient settings, and determined that nurses were adept in basic care but were by and large unequipped to handle end-of-life cases. Out of seven hospital and clinic sites, only two nurses were specially trained in palliative care.
The fact that Botswana and South Africa were represented in most of the found literature demonstrates the severe lack of evidence for the rest of Africa.
Education on End-of-Life Management
Overall, family caregivers were not properly educated about symptoms related to their patients. Several of the studies cited lack of disease knowledge as a major barrier. Ndaba-Mbata and Seloilwe (Reference Ndaba–Mbata and Seloilwe2000) described how family caregivers of people with cancer and stroke were informed of the diagnosis but caregivers of people HIV/AIDS were not. In the study by Chimwaza and Watkins (Reference Chimwaza and Watkins2004) in Malawi, none of the 15 caregivers knew their patients’ formal diagnoses and, therefore, had to guess. Kang'ethe (Reference Kang'the2009) interviewed community home-based care nurses who interacted with family caregivers. The four nurses interviewed reported that families they worked with had a difficult time understanding the definition of HIV/AIDS.
Home care in general was described as basic. Sepulveda et al. (Reference Sepulveda, Habiyambere and Amanda2003), found that, in Botswana, Ethiopia, and Tanzania, home care provided by the family consisted mostly of basic care such as feeding, washing, and clothing. Drugs were only provided by home- based care nurses when available, which was rare. Lindsey, et al.'s (2003) evaluation of Batswana women and young girl family caregivers showed that the majority felt the need for more counseling and that their skills were inadequate to give proper care. Orner (Reference Orner2006) revealed that a sample of selected South African rural family caregivers felt no educational or counseling support from the local community, government, or NGOs that claimed to be supporting them.
Additionally, one study by Uys and Social (Reference Uys and Social2003) showed that both patients and their family caregivers were more likely to receive better education about managing end-of-life care when the education was provided by a hospital. This descriptive study of seven sites that implemented integrated community-based home care (ICHC) compared urban hospitals to rural clinics and communities. Uys and Social found that when offered pre-test and post-test counseling for patients with HIV/AIDS and accompanying caregivers, 55% of the hospital population returned for post-test counseling in contrast to the 8% of rural-based participants who returned for follow-up education. However, a possible explanation for this is the proximity of hospitals in urban settings as opposed to the longer distances individuals had to travel in rural settings. Nonetheless, it suggests that hospitals were more successful at educating patients and their family caregivers.
Additionally, Rampanjato et al. (Reference Rampanjato, Florence and Patrick2007), conducted a qualitative study of 28 emergency setting nurses in Central Africa and determined that 25% of nurse caregivers had no formal education on pain management and were unable to recognize symptoms properly. This, however, is markedly improved from the education reported at the rural and home-based level, suggesting that although need for improvement is evident, hospitals may provide better care of end-of-life symptoms.
Extrapolating from this, it seems that managing symptoms of end-of-life care was quite difficult in the home because of lack of knowledge. Rather than manage pain and other symptoms, caregiving tended to consist of cleaning and bathing the patient to the best of caregiver's abilities.
Effects on the Caregiver
The caregiver experience plays a monumental role in palliative care. Whether the caregiver is a health professional or family member, studies have shown the negative financial, psychosocial, and health impacts caregiving can have on the family member or professional providing that care (Orner, Reference Orner2006; Manicom, Reference Manicom2011). Also, evidence has shown that education and preparation has a varying impact on the way professional and family caregivers are able to tolerate their stressors (Ndaba-Mbata & Seloilwe, Reference Ndaba–Mbata and Seloilwe2000). Ten articles were found that provided great detail on the efforts and limitations of care providers (Table 2). All of the studies were qualitative studies that relied on interviewing and questionnaires for data collection.
Financial limitations
Providing care was generally found to be economically devastating on the family caregiver. Lindsey et al. (Reference Lindsey, Hirschfeld and Tlou2003), found poverty to be the most pervasive theme for women and young girls caring for loved ones at home. The study's feedback specifically pointed out the “suddenness” of destitution from providing care to loved ones with HIV/AIDS. The devastating effects of economic hardships included lack of food, water, and supplies to nourish other healthy household individuals. Sepulveda et al. (Reference Sepulveda, Habiyambere and Amanda2003) surveyed participants in Tanzania and found that 45% of caregivers felt financial constraints from caregiving.
Hongoro and Dinat (Reference Hongoro and Dinat2011) was the only study that looked at financial effects of South African hospital-based palliative care programs. The study analyzed costs from a program that was based in a large teaching hospital but provided community outreach while incorporating hospital visits, and, in many cases, admissions for end-of-life cases. The study determined that poverty levels made dying at home unsuitable and that dying in hospitals avoided additional costs such as body storage. Furthermore, it concluded that having specially trained palliative care teams reduced hospital congestion and freed beds for other critical cases.
The prevailing themes arising from financial hardship single out the devastating effects of abrupt destitution, and the disruption of normal working patterns. The evidence suggests that specially trained palliative care teams are not only better for the patient, yet perhaps better financially. Also, the literature suggests that hospitals with special hospice teams may reduce costs and save resources.
Psychological effects
Negative psychological effects prevailed in home care of the terminally ill. The most commons findings were hopelessness, stigmatization, and isolation. Three studies specifically demonstrated a high incidence of loneliness from social isolation. Lindsey et al. (Reference Lindsey, Hirschfeld and Tlou2003) described caregivers and patients being separated from the community and lacking group support. Sepulveda et al. (Reference Sepulveda, Habiyambere and Amanda2003) found that in Tanzania, 13% of caregivers felt drained from their loved ones being short-tempered. Lindsey et al. (Reference Lindsey, Hirschfeld and Tlou2003) found that young girl caregivers felt exhaustion and had difficulty concentrating in school and were traumatized by watching their loved one die slowly. Overall, depression was a common finding resulting from loneliness and burnout.
Stigmatization was described in at least two of the studies. Orner (Reference Orner2006) described this as a common experience by caregivers of loved ones with HIV/AIDS in South African homes. Additionally, Lindsey et al. (Reference Lindsey, Hirschfeld and Tlou2003) reported women and young girls feeling so ostracized that at times patients were left to die secretly, hidden from the community. In comparison, Rampanjato et al. (Reference Rampanjato, Florence and Patrick2007) determined that most hospital emergency department nurses surveyed admitted to cultural influences, specifically noting taboos surrounding opioid use, in the way they managed their patients.
Spirituality emerged in several studies as a coping method. However, in home care, Lindsey et al. (Reference Lindsey, Hirschfeld and Tlou2003) found that although women found religion a great comfort, most had no time to attend church because of the great responsibilities of caring for a sick person. In contrast, Uys and Social (Reference Uys and Social2003) found that in South African hospitals, healthcare workers reported some ability to provide religious and spiritual care, although privacy was their main reported barrier.
Sardiwalla et al. (Reference Sardiwalla, VandenBerg and Esterhuyse2007) studied the effects of stress on a sample of South African hospice workers, which concluded that the majority of stress was work related and could be dealt with through meditation, relaxation, and coping exercises.
The findings suggest that home-based and rural caregivers are not equipped to address the spiritual and psychosocial needs of both themselves and their loved ones. Caregivers at home were overwhelmingly affected negatively, the majority of psychological damage being reported in home-based care. Whereas the literature reported stress and burnout among acute care and hospice workers, findings indicated that stressors tended to be specifically work related and manageable within the workplace.
It stands to reason that hospitals and clinics could benefit from having hospice units that provide spiritual care that aligns itself with the models of palliative care for the sick and dying.
Transmission risks and other findings
Transmission of HIV/AIDS and safety risk were highest in home-based care. Most common reasons cited were lack of knowledge pertaining to transmission routes and proper cleaning care. Kange'the (Reference Kang'the2009) surveyed 140 caregivers in Botswana and found that 85% of community and home-based care nurses reported lack of available supplies to prevent transmission from bodily fluids. Ndbaba-Mbata and Seloilwe (2000) determined that caregivers were not educated on transmission risks, and that several family caregivers did not even know routes of fluid transmission. No literature was found on transmission risks in hospitals.
Use of Healthcare Resources for Palliative and End-of-Life Care
Healthcare resources were evaluated by looking at places of death, issues with patients being admitted to the hospital at the end of life, and the availability of hospice.
Place of Death
Four studies were included in this review that focused specifically on places of death in Africa (Table 4). One study, by Lazenby et al. (Reference Lazenby, Ma, Moffat, Funk, Knobf and McCorkle2010), looked at place of death (home or hospital) in Botswana. The study sampled 18,869 death records received from the government's Registry of Births and Deaths (RBD). Lazenby determined that home deaths accounted for 36% of all sampled Batswana deaths and that 49.7% of hospital deaths were from HIV/AIDS-related causes.
The other three studies that evaluated places of death in Africa surveyed patients who all had access to formal, regular palliative care services in both inpatient settings and the home. Uys and Social (Reference Uys and Social2003) looked at patients in seven different sites participating in ICHC, a model in South Africa that links hospitals, clinics, and home-based care. Patients in ICHC are provided counseling, regular home care, and terminal care. Uys and Social found that 52% of patients surveyed in South Africa died at home. Similarly, Alsirafy (Reference Alsirafy2010) revealed in his study of 78 patients enrolled in the Egyptian Palliative Care program, 73% of patients died at home and 27% died in the hospital or ambulance. The study looked at patients enrolled in a program that provided a triweekly outpatient clinic, access to an eight bed acute care facility, and weekly visits from physicians in the home. Lastly, Manicom (Reference Manicom2011) studied places of death among patients with cancer under the care of the Constantiaberg Oncology Unit in Cape Town, South Africa. Patients in this retrospective 3 year study were specially referred to a palliative care cancer program. In the sample of 424 deaths, 42.92% patients died at home, whereas 34.2% patients died in an acute care medical facility. The remainder of surveyed patients died in unknown locations.
The evidence strongly suggests that more patients are likely to die at home when they have regular, adequate access to palliative care. More research is needed on public health records in order to gain a better sense of overall trends in places of death. It is important to note the difference in sample sizes as well. The three studies that found home deaths to be a majority ranged from sample sizes of 79 to 424, whereas Lazenby et al. (Reference Lazenby, Ma, Moffat, Funk, Knobf and McCorkle2010) surveyed a sample size of >18,000 deaths.
Issues with Patients Being Admitted to Hospital at End of Life
A large number of patients are being admitted to hospitals for unmanageable symptoms from HIV/AIDS and cancers during the end stages of the disease. Patients at the end of life used hospital resources largely when symptoms became too difficult for caregivers to manage in the home. Symptoms leading to hospital admission included difficulty breathing, intense pain, multiple fistulas, and wounds. Ndaba-Mbata and Seloilwe (Reference Ndaba–Mbata and Seloilwe2000) reported that many patients required hospitalization for nausea, vomiting, and analgesia. Rampanjato et al. (Reference Rampanjato, Florence and Patrick2007) also found that most emergency and acute care setting palliative care admissions were the result of inadequate pain and symptom management in the home.
Manicom (Reference Manicom2011) evaluated the length of hospital stay for patients with cancer at the end of life being admitted to an acute care oncology ward. Thirty-eight percent of patients admitted to the acute care oncology ward were in the hospital for ≤3 days before dying. Additionally, 15% of patients being admitted died the day of admission. Manicom attributes these end-stage admissions to the possibility that urgent or alarming symptoms may have developed at the end of life causing caregivers to bring their patients to hospitals for immediate attention. An additional speculation is that these organized home palliative care services still fail to prepare adequatelyall their patients for death at home.
Availability of Hospice
Overall, the research showed that when hospice was available, it was used. Uys and Social (Reference Uys and Social2003) surveyed only 5% of patients being admitted to hospice. However, in the survey of seven sites, it was found that only two nurses in two sites were specially trained in palliative care.
Studies indicated that when hospice was used, symptom management was generally good. Beck and Falkson (Reference Beck and Falkson2001) determined that hospice patients had the best controlled pain when compared with those in other inpatient units and community settings.
There was reported delay between when patients submitted hospice forms to when services commenced. Some individuals preferred not to have contact with hospice even in the face of terminal illness (Manicom, Reference Manicom2011).
There were no studies found in this review that specifically detailed the existence of inpatient hospice units, and it was generally concluded that lack of funding inhibits further development of inpatient hospice units.
Recommendations
Based on evidence from the literature, it is recommended that both governmental and nongovernmental funding be based on the proximity to inpatient facilities. Large urban areas should focus on developing inpatient palliative care and hospice units. Evidence shows that the highest availability of opioids occurs in inpatient facilities. Furthermore, the literature demonstrated superior pain management with inpatients, specifically in hospice. Focusing efforts on specialized palliative care units may also reduce the burden on family caregivers. Trained professionals are better equipped to handle the psychological stress of palliative caregiving than are relatives in the home. Even though professional caregiver burnout was a notable issue found in the literature, lobbying for workplace counseling to improve coping may be easier when financial funding and policy is focused on developing specific hospice units.
Optimal settings for palliative care delivery have been wrought with inconsistencies. Proponents of rural community-centered palliative care are driven by the assumption that most people at the end of life who suffer greatly reside in the country, far from urban settings (Sepulveda et al., Reference Sepulveda, Habiyambere and Amanda2003). Africa has a long history of rural, agrarian livelihood. However, although many Africans still identify strongly with a rural way of life, it is a fact that Africa's population is becoming increasingly urban as population expands (Donnelly et al., Reference Donnelly, McCall and Lengeler2005). Studies analyzing census data agree that urbanization is a relatively recent phenomenon in Africa (Collinson et al., Reference Collinson, Tollman and Kahn2007). This wave of migration began in the post-colonization era and has continued at a rapid rate. Africa's urban centers have grown despite the shrinking economy, largely because, despite poor living conditions and being far from home, individuals can still make more money being close to a major urban center than in the country (Bryceson, Reference Bryceson1996). Given this, funding and research priority should be given to specialized inpatient units in urban areas that will likely see immense patient volumes as urbanization rapidly expands.
For a large number of patients at the end of life in need of palliative care, hospitalization is not a feasible option, given the distance, transportation, time, and money required. Therefore, in rural areas where there is little or no access to hospitals, it is recommended that home-based palliative care teams be formed with nurses having the ability to prescribe opioids and other adjunctive medications. Current limited research shows nurses’ hesitancy to prescribe based on cultural fears and general lack of support from other healthcare providers. There needs to be more research on the nurse prescribing training program that is part of Uganda's free public morphine program. It should be evaluated whether or not the lengthy and expensive training program actually teaches responsible prescribing or just serves as an additional barrier. The restrictions on nurses’ prescription power are shortcomings in palliative care efforts, as the benefits of nurse prescribing seem to outweigh concerns. There is no evidence of nurses or caregivers abusing opioids in the palliative care setting, and, therefore, this should not be considered an influencing factor when allocating funds and resources to the development of home-based palliative care services.
Finally, home-based palliative care teams in rural areas should focus on counseling and education for family caregivers. The literature revealed that family caregivers, who consisted primarily of female relatives, were alarmingly uneducated about their loved ones’ diseases. Furthermore, family caregivers were not aware of proper sanitation precautions. If palliative care funding moves forward in a home-based care model, it is imperative that family caregivers be educated on the risks and proper care techniques for minimizing those risks. This is essential in reducing transmission and addressing the burden of HIV/AIDS that plagues Africa.
CONCLUSION
Overall, the 22 articles included in this review demonstrate a slow start to the great need for palliative care research in Africa. Based on the evidence, it seems that focusing funding on inpatient hospice is ideal in urban hospitals where patients can access facilities. This seems more beneficial than sending staff out to homes where resources, reporting, and research tend to be more scattered. In areas where access to inpatient facilities is not feasible, nurse opioid prescription power is the first-line recommendation, followed by focused education and counseling for female family caregivers. Studies directly comparing opioid distribution and “good deaths” by site are greatly needed. In general, further research evaluating the efficacy of Africa's palliative and end-of-life care programs is required in order to strengthen conclusions on optimal settings for end-of-life care.
