CHALLENGES FACED BY NURSES IN END-OF-LIFE CARE PROVISION AND THEIR EFFECTS ON THE NURSES’ PERSONAL LIFE IN LIMBE AND BUEA REGIONAL HOSPITALS

Abstract

Background: End-of-life care (or EOLC) also refers to health care for a person with a terminal condition that has become advanced, progressive, and/or incurable. End-of-life care requires a range of decisions, including questions of palliative care, patients’ right to self-determination, medical experimentation, the ethics and efficacy of extraordinary or hazardous medical interventions, and the ethics and efficacy even of continued routine medical interventions.

Rationale: End of life care presents many challenges especially in the management of pain and suffering for nurses as well as for patients and their families. Moreover, the care of the dying patient must be considered within the context of the psychological, physical and social experience of the person.

Methodology: This was a cross-sectional hospital based study which involved 100 nurses from different units in the Limbe and Buea Regional Hospitals.

Results: The results of this study reveal that 17 participants (17%) reported restlessness as the most common physical symptom that is found in patients at the end of life. And for the challenges, majority of the participants reported workload, lack of social services and non-cooperative family members and on the effects the nurses who were psychologically unhappy, physically suffered from back pain and socially there was financial burden as well as caregiver burden.

Conclusion: In conclusion, end of life care is a challenging and has far reaching detrimental effects on the personal life of the nurse as well as the family.

CHAPTER ONE
INTRODUCTION
1.1 Background

End-of-life care encompasses the care for patients that are considered to be in the last stage of their lives. It includes care provided to “all those with an advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support” (1).

End-of-life care (or EOLC) also refers to health care for a person with a terminal condition that has become advanced, progressive, and/or incurable. End-of-life care requires a range of decisions, including questions of palliative care, patients’ right to self-determination (of treatment, life), medical experimentation, the ethics and efficacy of extraordinary or hazardous medical interventions, and the ethics and efficacy even of continued routine medical interventions. In addition, end-of-life often touches upon rationing and the allocation of resources in hospitals and national medical systems. Such decisions are informed both by technical, medical considerations, economic factors as well as bioethics. In addition, end-of-life treatments are subject to considerations of patient autonomy. (1-3) End of life care (EOL) is an essential element of care provided in the health care institutions or the community. Patients with advanced and progressive diseases live with possible disruption of their daily routine, experience undue pain of all natures, suffer from dead and loneliness through the caring episode (1,2).

End-of-life care has received an increased recognition in recent years as a critical opportunity to improve health care quality. It has been defined as the active, total care of patients whose disease is not responsive to curative treatment (3). The provision of excellent end-of-life care requires, first and foremost, an excellent knowledge of the pathophysiology of terminal illness or injuries. The most appropriate health care at the end of a person’s life is a worry whether it is ultimately likely to benefit the patient. Nurses are often challenged when confronted by the patients and families on decisions concerning the painful realities of whether the patient will make it at the end or will not make it at the end of life.

One of the greatest challenges of end-of-life care in the twenty-first century is not offering care that cannot benefit the patient, but it requires the involvement and support of all levels in the health care system, from those who directly provide patient care to the administrators and regulators who address more system-based issues and also the nurses themselves (4-6). Decisions about care at the end of a person’s life often involve quality-of-life considerations. Nurses are obligated to provide care that includes the promotion of comfort, relief of pain and other symptoms, and support for patients, families, and other closed relatives to the patient. They are also in a very good position to make every effort to provide aggressive symptom management at the end of life.

Since decision-making for the end of a patient’s life should occur over years rather than just in the minutes or days before a patient’s death, nurses can be a resource and support for patients and families at the end of a patient’s life and in the decision-making process that precedes it. In this light, nurses are often ideally positioned to contribute to conversations about end-of-life care and decisions, including maintaining a focus on patients’ preferences, and establishing mechanisms to respect the patient’s autonomy (7-9). Excellent, skilled, precise communication is essential for the physical and psycho-social care of the patients and their families. Nurses must have the knowledge and communication skills to explain to patients why certain activities need to be done (10).

Nurses who work in such units as critical care units (CCUs), surgical units and the maternity have traditionally received little education and training in care of dying patients and the patients’ families, which ultimately affects the nursing professional and their practice at the end of life care in these units (11). Other factors that may be as important for providing end of life care may include a work environment with strong communication and collaboration between nurses and physicians, availability of ethics consultations, and adequate support of patients, patients’ families, and staff (12). Globally, the need for compassionate and effective end-of-life care (EOLC) grows more critical as the number of people predicted to get ill is expected to increase in every region of the world (13).

In the case of cancer which happens to be the second most common cause of death in the United States and around the world, as opposed to heart disease so far nurses are providing end-of-life care for these patients on a daily basis.(14) The World Health Organization (WHO) and Centre for Disease Control and Prevention (CDC) conducted a global cancer research in 2012 and found that about 14.1 million new cancer cases were diagnosed with 8.2 million people dying from cancer and this number is expected to rise to about 15 million by 2020.In sub- Saharan Africa about 551200 people are being affected with over 421000 deaths recorded per year (15). Although there is no reliable data on the incidence and pattern of cancer, it is still recognized as a public health problem in Cameroon as the incidence and mortality increase annually.

1.2 Statement of the problem
End-of-life care presents many challenges especially in the management of pain and suffering for nurses as well as for patients and their families. Moreover, the care of the dying patient must be considered within the context of the psychological, physical and social experience of the person (Della Santina and Bernstein, 2004). (13) Foremost among those who require end of life care are the elderly who are more prone to loneliness and who frequently under report pain and who have a greater sensitivity to drugs and drug interaction. (Lyness, 2004) (14) Unfortunately nurses who are responsible for the treatment of patients at the end of life commonly lack adequate training to help guide end of decisions and to deliver bad news to patients and their families (Boyle, Miller & Forbes, 2005; Gorman et al., 2005)(16). Nurses lack knowledge of end-of-life care and its importance to both the patient and health care provider. Therefore, it is imperative to identify the challenges faced by nurses in the end-of-life care provision and their effects on the nurses’ personal life.

1.3 Goal of Study
The goal of this research study is to identify the challenges of end of life care and its effects on the personal life of nurses working in Limbe and Buea Regional Hospitals.

1.4 Objectives of the Study
1.4.1 General Objective
To identify the challenges faced by nurses in end-of-life care provision and its effects on nurses personal life working in Limbe and Buea Regional Hospitals.

1.4.2 Specific Objectives of the Study
To examine the care provided by nurses to patients who are at the end of life in Limbe and Buea Regional Hospitals
To identify the challenges faced by nurses in providing care to patients who are at the end of life in Limbe and Buea Regional Hospitals
To identify the effects of end-of-life care on the personal life of nurses working in the Limbe and Buea Regional Hospitals.