Barries to Provision of Quality Palliative Care Services to Patients with Terminal Illness at Machakos Level 5 County Hospital in Kenya

 

A palliative care giver and a patient

ABSTRACT

Despite great efforts put towards the implementation of palliative care services in different hospitals within the country, many people are still passing on as a result of life-threatening illnesses because they do not receive palliative care services at the right time or they do not receive it at all. For these reasons, the current study will assess some of the barriers that affect the provision of quality palliative care services to people suffering from a terminal illness. The data will be collected using descriptive-qualitative design, in which the questions that will be asked consist of general questions on age, gender, experience, and position while specific questions will be on palliative care barriers. Moreover, the data will be analyzed using SPSS Version 22.

CHAPTER 1: INTRODUCTION

1.1 Terminal illness

Terminal illness is described as a condition or a disease that cannot be treated. Normally, terminal illness results in someone's death. It is also referred to as a life-limiting illness.  Some of the diseases that are considered terminal illnesses encompass neurological diseases such as Parkinson's disease, motor neuron disease, advanced cancer, lung disease, and dementia encompassing Alzheimer's disease and advanced heart diseases (Lewis et al., 2017). Individuals with terminal illness require care and treatment which involve managing the symptoms of the disease while keeping the life quality of the person or what is known as palliative care.

1.2 Palliative care

Palliative care is defined as a strategy that enhances the life quality of the patients together with their families who are suffering from a life-threatening illness. Palliative care averts and reduces suffering through timely identification, proper examination, and curing of the pain and associated problems. Therefore, palliative care aims at preventing and relieving all types of suffering such as spiritual, psychological, social, and physical which are experienced by individuals with life-threatening problems (Downing et al., 2017). Palliative care improves life quality and changes to progressive illness, by using suitable available evidence. Normally, children's palliative care signifies a special field as compared to adult palliative care. Children's palliative care involves providing total care to the mind, spirit, and body of children. Furthermore, it deals with offering support to the family of the child. The children's palliative care commences when the child is diagnosed with the illness and proceeds even if the child receives the medication for the illness or not. Usually, the provision of palliative care should not depend on age, income status, and income. For this reason, all people should access palliative care. However, some people do not receive palliative care services. As a result of this, the present paper assesses factors that hamper the provision of palliative care services to individuals suffering from a terminal illness at Machakos Level hospital 5.

1.3 Conceptual background

In recent years, the importance of palliative care on the conventional medical model of managing different types of diseases has increased.  For instance, the WHAR (World Health Assembly Resolution) in 2014 urged all countries to include palliative care in their health care systems (Hawley, 2017). The goal of the proposed initiative WHAR was to enable all patients with life-limiting diseases to access palliative care (Hawley, 2017). Though its anticipated outcomes have not been achieved. According to WHO, palliative care addresses the needs of the patients in three domains namely spiritual, social, physical, and psychological through three key components. These components encompass (i) proper management and prevention of signs including pain, (ii) excellent communication when discussing aims of both advance and care planning, and (iii) more provision for practical needs of the patients.  

Patients under palliative care feel better than patients with no access to palliative care. For example, Hawley (2017) revealed that people with serious illness under palliative care feel better health-wise as compared to patients who are not under palliative care. Furthermore, early access to palliative care is better than late access to palliative care. Various studies from different parts of the world indicate that palliative care enhances the outcomes of the patients, encompassing life quality, symptom control, and outcomes of caregivers like dysfunctional grief and reduced stress (Hawley, 2017). The purposes of palliative care are to stop and relieve suffering. Though some studies show that patients receiving concurrent palliative care tend to live for a shorter time than those patients whose care is directed only for disease management (Hawley 2017).

Contrary to the beliefs of many, it is possible to offer palliative care together with treatments targeting primary disease and usually commence at the diagnosis period. Additionally, treatments for controlling the disease are also important when incorporated with palliative care, until death time (Hawley, 2017). The aforementioned strategies are fundamental and should have the same effect in both developing health systems where individuals with life-limiting illnesses are diagnosed in the late stages of the diseases, and high-resource health care strategy with various treatment options. The idea of simultaneous palliative care and disease-targeting strategies to care have been in limbo in areas, which are not care related to cancer (Hawley, 2017). For instance, individuals with a life-threatening conditions like kidney and failure, neurodegenerative disease, and chronic lung disease are lately becoming recognized in palliative care programs.  

Currently, not all patients receiving palliative care even in the United States with a high health-resource system. For example, about one-third of hospitals in the US, which have fewer than fifty beds lack palliative care services (Hawley, 2017). A study conducted in one of the health care (the Veterans Health Administration) in 2012 in the US revealed that patients under palliative care in this hospital only receive palliative-consultation-care services on average of 38 days before they passed on(Hawley, 2017; Erel and Dekeyser-Ganz, 2017). On the other hand, they receive hospice on average of 20 days before they die. The importance of early incorporation of palliative care in the health system has not been achieved. As a result, health care institutions have a long way to implement proper palliative care in their health systems.  Even in health care systems, which have incorporated palliative care, the patterns in referral timeliness do not maximize the importance of palliative care. For instance, British Colombia, which developed palliative care, experiencing fewer than ten thousand deaths yearly, with about five thousand referrals in various settings (Hawley, 2017). Furthermore, the duration of patients in British Colombia under the program has reduced from 108 days in 2007 to 67 days in 2016 (Hawley, 2017). Specialists’ personal communication with patients under palliative care in the United Kingdom, New Zealand, and Australia show a drop in the provision of palliative care and its benefits (Hawley, 2017). Therefore, some barriers affect the provision of quality palliative care for patients. Some of the barriers cited in the literature include (i) family and patient reluctance to be referred, (ii) lack of information on palliative care resources, (iii) absence of palliative care resources to go to, (iv) unwillingness to refer, (v) ignorance about palliative care, and restrictive eligibility requirements for palliative care programs (Hawley, 2017). Other barriers are (vi) access to narcotics and (vii) religious and cultural beliefs.  

1.4 Problem statement

 Even though there are substantial advances in comprehending the importance of palliative care and managing disease, individuals with serious life-threatening sometimes do not access palliative care services. In some instances, they only access palliative care at the latest stages of the disease. As a result, it is significant to determine the barriers that hamper the provision of palliative care services for patients to individuals in need. Furthermore, different scholars have researched the barriers to the provision of palliative care services in other countries such as Canada and the United Kingdom (Hawley, 2017; Hassankhani et al., 2020; Abu-Odah et al., 2020). In Kenya, there are limited studies that focus on the barriers to the provision of quality palliative care services to people suffering from a life-limiting illness. Therefore, the present study is appropriate at this moment. Since it bridges the gap that exists in previous studies on palliative care services.

1.5 Purpose of the study

The current study assesses the barriers that affect the provision of quality palliative care to individuals with a terminal illness at Machakos Level 5 hospital, which is the only Level 5 hospital in Machakos County. Machakos County has a population of 1,098,584 people.

1.6 Objectives

The study examines:

1. The effects of palliative care eligibility requirements on the palliative care services. 
2.   The impacts of ignorance about palliative care on the delivery of palliative care services.
3. The influence of family or patient reluctance to be referred on the provision of palliative care services.The effects of the paucity of palliative care resources on the delivery of palliative care services.   
4. The effects of religious and cultural beliefs on the delivery of palliative care services to individuals suffering from a terminal illness.

1.7 Research questions

The objectives of the study will be achieved by addressing the following questions:

1.         How do palliative care eligibility requirements affect the provision of quality palliative care to people with a terminal illness?
   
2.   What effects ignorance about palliative care have on the delivery of palliative care to an individual with a terminal illness? 
3.       How does the reluctance of the patient or family to be referred influence the provision of quality palliative care services?
4. What are the impacts of the lack of resources for palliative care on the provision of quality palliative care services to individuals with a terminal illness? 
5.    What are the effects of cultural and religious beliefs on the provision of quality palliative care services to individuals with a terminal illness?    

 1.8 Conceptual framework

Figure 1.8: Conceptual framework

1.9 Significance of the study

The findings of the study will the management of Machakos Level 5 hospital to improve their palliative care services. Furthermore, it is useful to the government. The government can use it to implement and improve palliative care services in different parts of the country. It will act as a reference point for future researchers in the same field.

CHAPTER TWO: LITERATURE REVIEW

2.1 Introduction

This section discusses previous studies on barriers to the provision of quality palliative care services to people with a terminal illness. The section focuses on 5 main possible barriers such as cultural and religious beliefs, absence of palliative care services, eligibility requirements for palliative care, ignorance about palliative care, and the reluctance of the family or patients to be referred.

2.2 Cultural and religious beliefs

Cultural and religious beliefs dictate some people towards palliative care. For instance, some religious and cultural beliefs allow people to know their health status and to choose available treatment options. Such belief is the same as American cultural beliefs on the significance of autonomy, which hinges on Elizabeth Kubler-Ross's work on dying and death, and also the views of the earlier hospices (Davies et al., 2014). Most of the hospice workers based their understanding on this mainstream view. They believe that patients should openly give their views on death and dying (Aldridge et al., 2015). As a result, such discussion can go on to a point of discomfort or rigidity for individuals suffering from a life-limiting illness. Again, hospice workers believe that modern medication is overaggressive in curing terminal illness. However, this view is not common in all traditions and cultures in the United States of America. This is true with a scenario in Kenya. Some religions and cultures in Kenya do not prefer modern treatments. People attached to these cultures and religions prefer their way (religious or traditional way) of treating sickling individuals. In Hispanic and Asian cultures, only the family of the patient involves in the dying and death discussion, but not the patient. As a result, the family members such as the eldest person in the family decide on the behalf of the patient. Such actions are also practiced in some cultures and religions in Kenya.

Hospice care fits within the catholic doctrines, mainstream protestant traditions, and Reform and Conservative Judaism. Though in certain orthodox Jewish law’s interpretations, it is impossible to a hastened death, but the process of dying should be prolonged (Fraser et al., 2017). For that reason, a therapy that cannot prolong life should be abolished. Therefore, different cultural and religious beliefs play a key role in the uptake of palliative care in distinctive areas. Therefore, religious and cultural beliefs possibly influence the provision of quality palliative care services to individuals with tea terminal illness.

2.3 Absence and ignorance of palliative care services

The absence of palliative care resources such as teaching in residency programs and medical institutions makes it impossible for physicians to fathom what is taking place in a quality palliative care settings (Zubairi et al., 2016). As a result, it is significant for palliative care specialists to share information with their counterparts in other palliative care centers frequently, attending teaching, rounds and engaging in committee work (Johnston, 2017). Sometimes, it becomes tiresome for professionals, who are tasked with other clinical works. For this reason, the paucity of and ignorance of palliative care services hamper the delivery of quality services to people with a terminal illness.

2.4 Eligibility requirements for palliative care

Service rationing based on the characteristics of the patient is considered an ill-fated requirement for hospice and palliative care services. Though the notion of all facets of care by trained palliative care specialists disseminates an insufficient service delivery model that is patient-centered and sustainable (Kuleshov et al., 2020). Normally, referring experts and family doctors seem to move away from offering care when a palliative care program is incorporated since they perceive that their skills are irrelevant, and their involvement is not needed (MacRae et al., 2020). Patients always try to receive palliative care and disease-modifying treatments at the same time. Therefore, it is needless to provide all facets of care to a program with inadequate resources. The suitable model is when the right individuals are included in the care-program at the appropriate time that best fits the circumstances of patients (Romano, 2020). Take-over classical care constrains the abilities of specialists to help patients with indeterminate and long life expectancies.

2.5 Reluctance of family or patients to be referred

The reluctance of the family or patient to be referred to a particular palliative care center depends on culture. However, there is a mutual thread to this reluctance, specifically, the relationship of dying with palliative care (Molly et al., 2020). Moreover, some patients feel that disturbing their regular doctor, believing that their specialists may see them they have lost hopes. As a result, they know that they may withdraw treatments because they are giving up (Zeru et al., 2020). Additionally, separation anxiety also plays a vital role in this hesitation. A family or the patient may relax because they fear breaking the valued relationship between the patient and the family.

CHAPTER THREE: METHODOLOGY

3.1 Introduction

This section covers methods used to assess barriers to the provision of quality palliative care to individuals with a terminal illness at Machakos level 5 hospital in Machakos County.

3.2 Study design

Based on the nature of the study, a descriptive-qualitative design is appropriate for conducting the study. The samples will be selected to examine barriers that interfere with the provision of quality palliative care to individuals with a terminal illness. One-on-one interviews will be conducted to get reliable information from participants. Furthermore, data will be obtained from interviews, data analysis and interpretation will be performed using SPSS Version 22.

3.3 Study setting and participants

The study will be conducted between April 2021 and June 2021 at Machakos Level 5 hospital in Machakos County. A total of thirty correspondents, encompassing 10 managers, who involve in palliative care services, 8 nurses in the palliative care department, six individuals with a terminal illness, three oncologists, and three pain specialists. The criteria for inclusion will involve experience in the palliative care unit, and experience in handling people with a terminal illness. The respondents will be chosen according to the technique of purposive sampling.

3.4 Data collection

The data will be collected using face-to-face interviews with thirty respondents, who engage in the palliative care unit at Machakos Level 5 hospital. The participants will be provided with the necessary explanation. The collected data will be confidential, and the participants can refrain from participation. The interview time will between 15 and 20 minutes for each participant. The interviews will be carried out using a digital recorder and will be immediately transcribed at the end of the interview exercise. There will be general and specific questions. General questions will be on gender, age bracket, and position, and education levels. On the other hand, specific questions will be on the experience in the palliative care department and barriers that affect the quality delivery of palliative care to patients with a terminal illness.

3.5 Data analysis

The quantitative data will be analyzed using standard frequencies and descriptive analyses using SPSS Version 22. On the other hand, qualitative data will be analyzed by logistic regression of SPSS Version 22. Furthermore, the university will issue ethical approval for the study before its commencement.

CONCLUSION

The findings of the study will reveal whether suspected barriers such as cultural and religious beliefs, absence of palliative care services, ignorance of palliative care, eligibility requirements for palliative care, and the reluctance of family or patient to be referred affect the quality provision of palliative care services to patients with a terminal illness at Machakos Level 5 hospital. Additionally, the findings will help the hospital to improve their palliative care services to patients suffering from a terminal illness. It will also the government to provide necessary assistance to the hospital and other hospitals offering palliative care services in different parts of the country.

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