Practice of Palliative Care at Home in Central Africa: Reflection and Lessons

Abstract

The importance of palliative care at home has been highlighted in the literature; however, the fact remains that its recent introduction in Central Africa faces a number of major challenges. These challenges form the backdrop of the reflection, which aims to lead to lessons to be learned of interest to the nine countries that make up the Central African zone (Angola, Cameroon, Congo, Gabon, Equatorial Guinea, Central African Republic, Democratic Republic of Congo, Sao Tome, and Principé, Chad) with which we associate Burundi and Rwanda because they share the same general health issues with regard to the palliative care of patients at home. The aim is to improve the quality of life of those who suffer and die at home due to lack of care.

1. Introduction

Palliative home care is a comprehensive package of care provided to patients and their families at home [1]. They include pain control and symptom management, psychosocial and spiritual care, and support with activities of daily living [2]. This healthcare model is most recently adopted in palliative care [3], and its development and practice over time varies from country to country [4]. In Central Africa, it is not always easy for a patient or his family to accept the transition from hospital to home [5], especially in a certain culture in which people are ashamed to die at home [6]. Perhaps this is why many poorly prepared and anxious patients die soon after returning home when unaccompanied.

To fill this gap, changes have taken place in health systems, in which there is an increasing emphasis on home care services to help families who want their loved ones to die at home [7]. This is a particular type of care that certainly fits into the paradigm of complexity [8] but which has proven itself in the countries that practice it. Today, with the resurgence of life-limiting chronic diseases such as HIV/AIDS, cancers, diabetes, and tuberculosis, to name but a few, the Central African countries that bear the heaviest burden are, therefore, the largest providers of palliative care at home. These countries, therefore, have an interest in breaking with the exclusivity of the very hospital-centered therapeutic model that they practice to the detriment of the home care model.

This new form of production of care and interdisciplinary practices is defined as a complete set of care provided at home to a patient suffering from a life-limiting illness and to his family [9]. In this case, the patient’s and his family’s place of residence becomes a specific care environment [9]. Hence, the purpose of this chapter is to reflect on this model of care in order to draw lessons for the countries of Central Africa.

2. Problematic situation of palliative home care in Central Africa

In Central Africa, the residential care of patients suffering from chronic diseases, 80 to 90% of whom arrive in hospitals at the advanced stage of the disease [10], is nowadays a major concern in palliative care. The question arises as to how to guarantee continuity of quality care to those who, after having stayed for days or even months in health facilities without recovery, are forced to be turned back to their homes because the structure cannot keep them longer. This decision-making happens in most cases when patients and their families are deprived of financial resources. In a context where almost all public hospitals have limited budgets for the management of these progressive diseases such as advanced-stage cancers or HIV/AIDS. What causes so much of a problem is sending these patients back to their living environments without any other means of follow-up [11] while simply waiting to watch them die, for lack of palliative care at home, training of caregivers in these kinds of interventions and of a relay organization for home care. In the absence of a proposal of choice, some patients refuse to leave the hospital, claiming that they are not yet cured. From this angle, care providers, and more generally physicians and nurses, are not always convinced that the care they provide to these types of patients is attentive, efficient, useful, and of high quality. A form of exclusion of those for whom the treatment of advanced chronic diseases is no longer the solution to cope with the burden of pathology [12].

Without any other alternative, these patients suffer enormous suffering that we could have limited, and we improved their quality of life by giving them early access to palliative care at home and by strengthening the skills of care workers. It is, therefore, a real public health problem. This problem affects many African countries which are permanently exposed to cancers, HIV/AIDS, pulmonary tuberculosis, and diseases of senescence. These diseases are the most dangerous and costly types, both in human and economic terms, for the health of Africans. According to the African Association for Palliative Care (2013), their rate will increase by 400% over the next 50 years in this part of the world. Moreover, the results of the study conducted by Sah Tatsing et al. [13] show that in these countries, 54.12% of patients suffering from life-limiting chronic diseases such as cancer wanted to receive their care at home so as not to be separated from family and friends. These results are similar to those of a study conducted in England, where 55% of people with cancer would prefer to die at home [14]. Unfortunately, during the same study, it emerged that very few health facilities in Central Africa provide home care. For those who do, this care is provided intuitively, without a repository, and is based much more on basic palliative care. Hospital structures that make efforts to provide palliative care favor the palliative model of hospital care, which focuses on the management of physical symptoms, psychosocial support, and ambulatory care for patients able to go to a health facility. They do not provide home care because of a lack of qualified staff and lack of financial means to meet travel costs. These shortcomings are in line with the observations noted by Clark et al. [15], who noted that the countries of Central Africa had a “localized provision” of palliative care, which boils down to a handful of services isolated from each other, with limited coverage.

Another observation made in these Central African countries concerns the insufficiency of teaching units on palliative care in the training programs of health personnel. This has resulted in a lack of knowledge and skills in palliative care at home.

Following this nonexhaustive list of shortcomings, it appears that palliative care at home in Central Africa is still not very present. Its expansion is a real requirement to the point where one could deduce that the patients who at home manage to survive for a few days are miracles of a hyper-hospital-centered system. Home palliative care in this part of Africa will fill the gap of continuous and integral care in order to meet the needs of the population and improve the efficiency of health systems. Indeed, the unavailability or inaccessibility of palliative care at home has many health and economic consequences.

In terms of health, the consequences are expressed in terms of inaccessibility and insufficient support for the care that patients may need, delay in the development of the practice of care actors in this area due to the fact that those – they are poorly prepared to deliver palliative care in general and palliative care at home in particular. Among other health consequences, there is the distress of patients and their relatives when people die in hospital when they would have preferred to die at home or when they have no medical reason to be hospitalized. In the absence of an organization that offers palliative care services at home, the data relating to this care, whether in an individual or collective home, remains poorly documented or disparate and constitutes an obstacle to their analysis in perspective [8].

On the economic level, there is an increase in the costs of care related to the prolonged care of patients in hospitals. This increase has an impact on the quality of care in health systems dominated by the absence of universal health coverage and the existence of selective health insurance.

In view of all the above, it appears that the challenge of palliative care with its model of home care is a worrying problem that interests decision-makers, NGOs, health professionals, and nonhealth professionals. These actors need more than ever contextual, targeted, and effective strategies to prevent and alleviate the suffering of patients and families who lack care in this context.

3. Reasons for choosing this therapeutic model

Many countries around the world practice palliative care at home [4]. In Central Africa, the method of admitting patients to these services differs from one country to another [4]. This can be continuity care after discharge from the hospital of a patient with a life-limiting illness [16] or simply the care provided to these types of patients, regardless of the stage of their illness [17], who express a desire to spend their last days at home [18] if circumstances permit. Other determinants of palliative care at home can be the absence of care [16], the unavailability or inaccessibility of hospitalization services [6], the high cost of medical care, technological innovation, such as home telemonitoring and teleconsultation [19], and the environment [20].

For Cordeiro et al. [16], there are three determinants of palliative home care: culture, economy, and health system. Costa et al. [20] add disease, the individual, and the environment. In the patient’s home, care is centered on the patient, his expectations, his problems, and those of those around him [4] with the aim of controlling pain, as well as physical symptoms, providing psychosocial support and accompaniment, to improve their quality of life [21]. For Sun et al. [22], palliative home care brings together clinical services, nursing interventions, counseling, and social support.

4. Legal and juridical framework

In almost all Central African countries, there are no specific texts regulating the practice of palliative care at home. However, these practices are part of the intervention programs and agreements ratified by these countries. As such, the practice of palliative home care relies heavily on four guidelines.

The first relates to the integration of cancer care into primary care [23]. Primary health care as an approach centered on the needs of individuals emphasizes their well-being. This care ensures that low-income people receive palliative care as close as possible to their daily environment and therefore to their home. The “essential components of primary health care are therefore social justice, equity, universal access to care, community participation and multi and intersectoral approaches to health” [24].

The second guideline concerns the responsibility of healthcare actors to work toward the achievement of the Sustainable Development Goals adopted by the United Nations in 2015 to take over from the Millennium Development Goals (2000–2015), which places health at the heart of the third objective: “enable everyone to live in good health and promote well-being at all ages”. From this perspective, palliative home care clearly has an essential role to play in achieving this objective.

Finally, the provisions of the National Strategic Plans for the Prevention and Control of Chronic Diseases in most Central African countries recognize the existence of palliative care with importance given to its home care model.

To this text should be added that of the WHO (2002) of which these countries are members, which invites them to:

“Develop, strengthen and implement, as appropriate, palliative care policies to support the overall strengthening of health systems with a view to integrating palliative care services into the continuum of care at all levels that are evidence-based, cost-effective and equitable, with an emphasis on primary, community and home-based care and universal coverage schemes”.

5. Procedure for palliative care at home: the specific case of Cameroon

In Cameroon, which is one of the countries of Central Africa, the team surrounding the patient is the same as in the hospital. In the first line, there is the family, the nurses, and the doctors and, in the second line, there can be the other members of the plural team of palliative care. When the hospital decides to send a patient home, the most likely scenario is that the nurse coordinating home care first goes to the patient’s home to assess, with the help of the family, the adaptability of care at home and prepare for its installation. Once at home, the nurse coordinator calls on the general practitioner with whom she carries out the initial assessment of the patient before establishing a follow-up plan resulting from the scientific approach to care. This approach can be summed up in three essential phases: the identification of symptoms and patient needs, the implementation of multidisciplinary interventions, and their evaluation.

5.1 Identification of symptoms and patient needs

This phase is carried out by the nurse. After contact with the patient, she uses a hetero-questionnaire to evaluate the patient’s condition to identify their socio-demographic and clinical aspects. The answers to these aspects can come directly from patients or their relatives and their medical records. This initial assessment follows the assessment of the symptoms (physical, psycho-sociological, and spiritual), the functional state, and the quality of life, before, during, and after the care interventions thanks to and with the same scales provided for this purpose. At the end of the initial assessment, the nurse coordinator establishes the baseline level of symptoms and needs that will be compared with those obtained during and after the interventions implemented.

5.2 Implementation of multi-professional interventions

Once the needs and symptoms of patients have been identified and measured, they are encouraged to follow the interventions set up by the multidisciplinary team. The interventions deployed come from the care protocol established beforehand. For issues requiring follow-up or special attention or even the opinion of the specialist, the coordinating nurse, with the permission of the patient and his family, contacts the specialist or the consensus team. For each patient, the caregiver draws up a multifaceted intervention plan including the care diagnosis(es), the care objective(s), and the interventions to be implemented.

5.3 Assessment

As in the phase of identification of symptoms and needs, the coordinating nurse also uses both the hetero-questionnaires and the self-questionnaires to regularly reassess the symptoms, the functional state, the interventions implemented, and the quality of life of the patients. Since the nursing staff is not always on-site, a 24-hour telephone service is available to patients and families in case of concerns. In the event of the patient’s death at home, the nurse calls on the general practitioner to confirm the death. Afterward, the nurse and the family prepare the body for the destination of their choice. The nurse also helps them with the procedures for obtaining administrative documents such as the type of death certificate.

6. Benefits of palliative home care

Research findings show that palliative home care improves patient survival time and mood. They reduce hospital visits and patient travel time [1]. For these authors, this care reduces the duration of hospitalizations and the cost of medical care for patients with malignant neoplasms. For Morrison and Meier [25], palliative home care improves the efficiency and effectiveness of home care services. To this end, it has been shown that clinical procedures traditionally defined in hospitals can be carried out safely in the patient’s home [26]. From this perspective, palliative home care is now considered one of the sectors toward which palliative interventions should be directed. But unfortunately, they present major challenges for practitioners.

7. Challenges to the development of palliative home care

In Central Africa, the home is full of symbols and memories. It is a place of tranquility, accommodated according to the patient’s own wishes. The home is the best place that offers the patient a certain security when he is surrounded by the people dear to him, especially when crossing a new life induced by the fatal disease. It is a place where the patient finds his bearings, his life story which he needs to maintain the hope of living.

The carer must be able to keep in mind what makes home specific in African countries: “It is a place of life for the person and for their loved ones, which is part of a story, where questions of identity, intimacy and security are embodied in various forms” [27]. Care should be taken to ensure that the legitimate vision of broad access to palliative care at home is not accompanied by normative approaches or visions of this place, which refers first and foremost to the uniqueness of each life story [27]. From this point of view, far from being trivialized, palliative home care presents several challenges.

Indeed, the practice of palliative home care comes up against a number of obstacles. The first obstacle is his youthfulness [3]. It is perhaps for this reason that it is uncommon in Africa in general and relatively new in Central Africa [1]. In this part of the continent, palliative care at home is not recognized as a medical specialty, and it is not integrated into the diploma training of health personnel [1]. Waelli and Minvielle [28] add the lack of government support. In these countries, very little legislation governs the implementation of palliative care at home, as can be seen elsewhere. As a result, care pathways and appropriate symptom management interventions are underestimated or obsolete [1]. Linked to the person, one of the obstacles to the development of palliative care at home is the fear that the patient experiences, particularly with regard to the unfavorable opinion of his relatives and the ineffectiveness of the care he will receive at home compared to hospital care.

8. Conclusion

Home-based palliative care is defined as a comprehensive set of care provided at home to a patient suffering from a life-limiting illness and to their family [9]. The desire for this type of care originates from the observation that, in Central Africa, the suffering of patients is poorly taken into account in a good number of current programs for the treatment of chronic diseases, particularly those developed in countries with low income [1]. It is becoming urgent to carry out advocacy to make politicians and decision-makers listen to reason so that where palliative care at home does not exist, it can be instituted. Where it exists even in isolation, it can be strengthened.