Implication Of The Cost Of End Of Life Care
ABSTRACT
Orthodox medical practice has brought about access to diagnosis and modern healthcare through the palliative care system to treat the terminally-ill, thereby improving their quality of life. This treatment of the terminally-ill utilises medical diagnostic interventions with little or no consideration for psychosocial supports and family integration which are at the core of the palliative care system. This study, therefore, investigated the psychosocial supports (diversional, behavioural, emotional, counselling services, companionship, spirituality, rehabilitative supports and regular visitation) and family integration (financial assistance, life-style modification and re- allocation of roles) as determinants of palliative care of terminally-ill patients at University College Hospital, (UCH), Ibadan, Nigeria.
The study adopted the survey research design. The UCH was purposively selected. Proportionate and stratified random sampling techniques were used to select 587 respondents, namely, 183 health workers (50 doctors, 83 nurses, 24 physiotherapists and 26 social workers), 202 terminally-ill patients and 202 family caregivers from purposively selected eight wards and three out-patient clinics. Three instruments were used: Psychosocial Support Scale (r=0.67), Family Integration Scale (r=0.65) and Palliative Care Services Scale (r=0.71). These were complemented with ten sessions of in depth interview with the health workers, terminally-ill patients and family caregivers. Two research questions were answered and three hypotheses tested at 0.05 level of significance. Data were analysed using descriptive statistics, Pearson product moment correlation, multiple regression and content analyses.
The respondents were 218 male, and 369 female with age of 38.54, ±SD=9.78; with 202 terminally-ill patients; cancer (86), cardiac problems (42), neurological disorders (33), end stage kidney problems (22) and HIV/AIDS (19). Psychosocial supports and family integration significantly correlated with palliative care of the terminally-ill (F(12.189)= 25.25, R=.79); and jointly accounted for 62.0% of the variance in their palliative care. Psychosocial supports (β =
.55) and family integration (β= .51) relatively contributed to the palliative care system. Components of psychological supports had significant positive relationship with palliative care as follows: emotional support (r=.69), diversional support (r=.54), behavioural support (r=.50) and counseling services (r=.45). Also, components of social supports had positive relationship with palliative care: regular visitation (r=.41), spirituality (r= .33), rehabilitative support (r=
.308) and companionship (r= .066). Observed relationship among family integration factors and palliative care were: financial assistance (r=.65), life-style modification (r=.32) and reallocation of roles (r=.32). Problems facing the utilisation of palliative care system include: irregular training on palliative care for health workers (64.0%), problem of early diagnosis (62.0%), non- availability of pain control medication (58.2%) and non-affordability of treatment (23.0%). Patients expressed anxiety over the outcome of illness, difficulty in adaptation to life style modification and fear of death in the face of poor patient-health workers communication.
Psychosocial support and family integration positively influenced palliative care system for the terminally-ill patients at the University College Hospital, Ibadan, Nigeria. Therefore, adequate provision of funds, pain control medication and staff retraining are required to ensure effective treatment in palliative care. In addition, the terminally-ills and their family members should be appropriately counselled on the need for life-style modifications and role reallocation.
TABLE OF CONTENTS
Abstract
CHAPTER ONE: INTRODUCTION
1.1 Background to the study
1.2 Statement of the problem
1.3 Objectives of the study
1.4 Research questions
1.5 Research Hypotheses
1.6 Significance of the study
1.7 Scope of the study
1.8 Operational definition of terms
CHAPTER TWO: LITERATURE REVIEW AND THEORETICAL FRAMEWORK
2.1 Palliative care: conceptualization and issues
2.2 Psychological support and palliative care
2.3 Diversional support and palliative care
2.4 Counselling services and palliative care
2.5 Social support and palliative care
2.6 Spirituality and palliative care
2.7 rehabilitative support and palliative care
2.8 Regular visitation and palliative care
2.9 Family integration in palliative care
2.10 Financial assistance in palliative care
2.11 Physical care and palliative care
2.12 Lifestyle modification and palliative care
2.13 Re-allocation of roles and palliative care
2.14 Centre for palliative care Nigeria
2.15 Empirical studies
2.16 Theoretical framework
2.17 Appraisal of literature
CHAPTER THREE: METHODOLOGY
3.1 Research design 76
3.2 Population of the study
3.3 Sample and sampling technique
3.4 Instrumentation
3.5 In-depth-interview
3.6 Translation of protocol to local languages
3.7 Administration of instrument
3.8 Method of data analysis
3.9 Ethical consideration
CHAPTER FOUR: RESULTS AND DISCUSSION OF FINDINGS
4.1 Analysis of Demographic characteristics of the respondents:
4.2 Test of contribution and strength of the relationship among the core variables
CHAPTER FIVE: SUMMARY, CONCLUSIONS AND RECOMMENDATIONS
5.1 Summary
5.2 Conclusion
5.3 Policy Implication of the study
5.4 Recommendations
5.5 Contributions to Knowledge
5.6 Limitations to the Study
5.7 Suggestion for Further Studies
References
Appendix
CHAPTER ONE
INTRODUCTION
- Background of the study
Terminal illness is a medical term popularised in the 20th century to describe a disease that cannot be cured or adequately treated (Glare, Virik, & Jones, 2003). This term is more commonly used for progressive diseases like cancer, complicating heart disease, end stage kidney disease, neurological problems and HIV/AIDS (Pass, 2000; Morrison, 2006).
In traditional African societies, including Nigeria, health and disease are not only closely related, but also have religious and cultural contexts (Udoh, 2002). Among indigenous spiritual deities in the African societies, there is a prevailing belief about humanity‟s relationship to the supernatural forces, which have implication for health condition of the individuals (Udoh, 2000 & 2002). For instance, it is believed that the state of terminal illness in an individual is caused by the anger of the gods, the actions of wicked persons, or the anger of the displeased ancestors. Within this context, terminal illness can be caused by natural, supernatural and mystical factors (Boston 1984; Udoh, 2000). Natural causes are diseases brought about by natural factors and invisible media (Erinosho, 1989) while the supernatural causes are diseases originating from the actions of evil persons, witches and sorcerers. Mystical causes are brought about by dissatisfaction of ancestors and deities (Udoh, 2000) and they are directed against individuals, families and communities (Oke, 1980; Erinosho, 1989).
Udoh (2002) explained that illnesses such as cough, scabies, small pox and epilepsy are considered to be of natural origin among the Igbo people of Eastern Nigeria. The Igbo people also believe that these diseases may be caused by invisible elements. The Yorubas of Western Nigeria believe that diseases such as cancer, small pox, measles, hepatitis, tuberculosis and mental illness attributed mostly to unnatural causes, evil persons, aggrieved deities or ancestors (Erinosho, 1987). As a result of these traditional beliefs, terminal illnesses are generally believed to be due to supernatural and mystical causes (Lucas & Hendrickse, 1990). Hence, there is the need for a traditional healthcare delivery system that is utilised in the care of patients with terminal illness.
The traditional medicine system which is the same as folk medicine is popular in the rural communities of Nigeria (Oke, 1989; Udoh, 2002). Given the consultative pressure from orthodox medical practitioners, its utilisation has not earned widespread government acceptance and recognition (Anderson, 1998). The main objection to traditional or folk medicine is based on personal and professional interests of orthodox medical practitioners, who have argued that indigenous medical practices are crude and unscientific (Sorochan, 1998).
Deducing from the above argument of the orthodox medical practitioners, it is, therefore, an accepted knowledge that the modern healthcare delivery system provides the best medical intervention, competence, state of the art physical assets and infrastructure to attend to terminal illnesses. However, there are some terminal illnesses that are fatal in their complexity, orientation and conclusion. They will surely lead to death, no matter the level of orthodox healthcare attention provided. The conclusive outcome cannot be reversed (Balogun, 2007). Such illness is reasonably expected to result in the death of the patient within a relatively short period of time.
In popular use, indicates a disease which will eventually end the life of the sufferer. A patient who has such an illness may be referred to as a terminal patient or terminally ill or simply terminal. Often, a patient is considered to be terminally ill when life expectancy is estimated to be six months or less, under the assumption that the disease will run its normal course (Borneman, 2004). A patient may be considered terminal, this is not a guarantee that the patient will die within six months (Taylor, 1988). Similarly, a patient with a slowly progressing disease, such as AIDS, may not be considered terminally ill because the best estimates of longevity were greater than six months. However, this does not guarantee that the patient will not die unexpectedly early (Grealish, Lomasney & Whiteman, 2000).
The medical personnel and their supportive staff do not give up and ignore or suspend the care given to the terminally ill (Collin, 2008). The patient is therefore transitioned into palliative care. Palliative care is a specialised care, focused not on cure but on the pain, symptoms, stress and quality of life associated with serious illness (Seymour, Clark & Winslow, 2004). World Health Organisation (2002) defined palliative care as an approach which improves the quality of life of patients and their families facing the problem associated with life threatening illness, through the prevention, and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other physical, psychosocial and spiritual problems.
Soyannwo (2004) submits that palliative care is “the active holistic care of patients with advanced progressive illness, management of pain and other symptoms with provision of psychological, social and spiritual support”. Palliative care is designed to provide the best quality of life for patients and their families. Hence, it is Soyannwo‟s contention that palliative care should be provided by two categories of health and social care professionals. Those providing day to day care to patients in their homes and hospitals and those who specialise in palliative care (consultants, clinical nurses, social workers, physiotherapists, chaplains and other religious leaders). The patient feels better, feel supported and have more control over his/her care. Palliative care improves the quality of life for both patient and family. Doctors, nurses and other specialists work together with the patient‟s other care givers to provide an extra layer of support.
Soyannwo (2004) stresses further that palliative care services in Nigeria are undeveloped. There is continuing resistance to some palliative care concepts including opiate use, the multidisciplinary team approach to the management of medical problems and the inclusion of patient and family as the unit of care. Salako (2009) reports that palliative care services face some challenges in Nigeria, which include: lack of awareness, lack of knowledge and skills set relative to palliative care. The effective palliative care service require more than prescriptions and ingestion of drugs. A synergy of healthcare professionals working cohesively to ensure the physical, social, psychological and spiritual wellbeing of the patient is paramount.
Palliative care requires a multidisciplinary approach to be effective (Blanch, 2002; Holloway, 2003). With different integrated factors which can impact on the psychological and social support, as well as family integration which need to be incorporated in order to achieve effective palliative care services of the terminally ill. Psychological supports are the different behavioural features that are carried out to assist and reduce the distress and agony faced by those with terminal illness. Social support, on the other hand, is an interpersonal process that is context specific and involves exchange of information and perception that the terminally ill is cared for and adequately reassured. The family integrated component to terminal patient care allows the patient not be treated as an individual with problems and symptoms, but also as a family member whose reactions interlock with the support system (Tanchel, 2003). The family of the terminally ill patient is at the centre of the unit of care and their support and education are vital because losses suffered by the patient will be experienced in parallel by the family. Therefore, it is important to give family members opportunities to talk as individuals as well as in groups regarding the palliative care services provided to their loved ones (Davies & Steele, 1995).
Previous researches have looked at the role of palliative care in the era of anti retroviral therapy and vice versa with emphasis on equitable distribution of drugs, its accessibility and affordability. This is only limited to those with HIV/AIDS receiving palliative care and not other terminal illnesses (Oyebola, 2007). Secondly gender issues in palliative care was also reviewed with particular emphasis on the plight of women with terminal illness, cultural and community expectation of the roles women play were highlighted and also that most women underplay their symptoms and so do not receive adequate support in order not to disrupt the family (Akeredolu, 2008). Besides, most of these previous studies on palliative care had concentrated efforts on the clinical components of palliative care in Nigerian hospitals, covering such areas as symptom control in palliative care (Soyannwo & Kuye, 2007), palliative care in the 21st century; a tale of four African nation (Onyeka, 2013), palliative care experience in breast and cervical cancer patients in Ibadan (Elumelu, Adenipekun, Soyannwo & Boadu, 2013), and ethical issues in palliative care (Ogundiran, 2007) . Observably, none of these past studies had bothered to focus on the totality of the predisposing factors of palliative care which indicates the combination of psycho-social supports and family integration as determinants of effective palliative care of terminally il; hence the need for this study.
1.2 Statement of the problem
Mankind has always been frightened and in awe of death, even though it is an irreversible end of life everyone would go through. The terminally ill experiences a lot of pain and anxiety which can lead to suffering and threat to quality of life which refers to an individual‟s total well- being and includes all emotionally, social and physical aspects of an individual‟s life. One major hindrance in rendering palliative care in the Nigerian environment is the taboo of speaking of an impending death. There seems to be a culture of “death denial” among patients, their relatives and health care professionals. Where death is accepted, African prefers natural prolongation of the dying process and want to be at home so that they can make their peace, say farewell, and give final instructions to immediate relatives. As a result of this, many terminally ill keep away from medical treatment for fear of hospitalisation. There is also a form of professional or cultural taboo against open communication about death among physicians. Health care professionals, in many cases, censor the information given to patients in an attempt to protect and prolong the news about the „inevitable‟. Patients with terminal illness are not given the full picture about their diagnosis and prognosis.
Illnesses remain the major cause of mortality among the human population and it increases enormously in the developing countries. An individual faced with terminal illness is generally unhappy and withdrawn, his psychological well-being is traumatised and this negatively affects his self-esteem, he feels bad with himself due to inability to perform the roles expected of him. The total being is affected, ability to cope with the basic challenges of life become traumatised and sees himself at the mercy of other people. Self-efficacy, however, is an individual‟s ability to be at adequate level of performance that can influence events positively. The terminally ill is not capable of functioning at this optimal level which can be quite depressing.
On few occasions, when patients are educated about their illness and the possible outcomes, some patients have rejected and rebuked the idea. The very nature of the work entails ambivalence and uncertainty, with the result of the intervention less immediate and often intangible. The patient, therefore, is cared for not only as an individual but also as a family member whose reaction interlocks within the support system. This, therefore, raises the salient question: Is palliative treatment necessary when it cannot cure the terminal illness? Considering the cause-effectiveness, is it worth providing palliative care knowing (fully) that death is the end result of terminal illness? Ethically, it is the client‟s right to have peaceful death, of what importance is psychosocial support and family integration in providing palliative care? It is on this basis that this study investigated the extent to which psychosocial supports and family integration contribute to the palliative care of terminally-ill patients at University College Hospital, Ibadan.
Hence, the study is epitomised on this central issue that: Will the incorporation of the independent variables of diversional support, counselling services, spirituality, rehabilitative supports, financial assistance and life style modification help in improving the palliative care of the terminally ill?
1.3 Objectives of the Study
The objectives of the study were to:
- determine the perception of health workers, patients and family care givers on the effectiveness of palliative care services;
- determine the extent to which psychosocial support and family integration affect to palliative care of terminally ill patients in UCH;
- examine the relationship between the components of psychological support (diversional support, emotionally support, behavioural support and counselling services) and palliative care of the terminally-ill patients;
- examine the extent to which social supports (spirituality, rehabilitative services and regular visitation) relate to palliative care of the terminally-ill;
- assess the relationship between the components of family integration (financial assistance, physical care, life style modification) and palliative care of the
1.4 Research questions
- What is the perception of health workers, terminally ill patients and family care givers on palliative care of the terminally ill patients?
- To what extent does psychosocial support and family integration improve palliative care services of the terminally ill patients in UCH?
1.5 Research hypotheses
Ho1: There is no significant relationship between the components of diversional support, counselling services and palliative care of terminally-ill patients in UCH.
Ho2: There is no significant relationship between the components of social support and palliative care of the terminally-ill patients.
Ho3: There is no significant relationship between the components of family integration and palliative care of the terminally-ill patients.
1.6 Significance of the study
For individuals and health care authorities, this study would provide the opportunity to create awareness about health and illness, including the inevitability of death. The inclusion of death and dying education in the educational curriculum would be highly beneficial.
Palliative care improves the quality of life of the terminally ill and also provides opportunity for the patient to benefit from holistic care. So, the study would add value to adult educational research and the society at large in the area of gerontology as the underlying psychosocial support that surrounds palliative care would be brought to the forefront in order to forge a better strategy for the care of those with terminal or life threatening disease condition.
Policy and intervention programme recommended from the study, If adopted, can serve to sensitise stakeholders in palliative care including government, relevant local and international agencies and non-governmental organization. This would address the need for improvement in palliative care practice and subsidise the management of terminally ill in tertiary hospitals, to encourage wider patronage of those with life limiting illnesses.
1.7 Scope of the study
This study focused on the extent to which psychosocial supports and family integration determined effective palliative care of terminally-ill patients in University College Hospital, Ibadan. This study was delimited to patients with cancer, complicating heart diseases, end stage kidney disorder, HIV/AIDS and neurological problems in radiotherapy ward and clinic, neuroscience wards, medical wards and children‟s ward. This is because children, also have terminal illnesses and require palliative care too. Diagnosis period is within four weeks of presentation. The terminally-ill patients were drawn from different wards within the University College Hospital which were; Radiotherapy Ward and Clinic, South West Four, East One, West West One, East Two, South East Two, West West Two, West Three, Surgical Outpatients and Medical Outpatients. The clinics and centres are utilised by those that are not on admission but come on outpatient basis for treatment.
The choice of UCH for the study was occasioned by its position as a tertiary health institution with different areas of specialty. The radiotherapy ward and clinic attend to patients with malignant diseases. The palliative care of this group of patients is complimented by the Centre for Palliative Care Nigeria (CPCN) which is the first palliative care centre situated in Nigeria. Patients do visit the centre at regular intervals from their respective homes for psychosocial and spiritual wellbeing.
1.8 Operational Definition of Terms
- Counselling Services: This is the professional advice given to the patients with Terminal illness and their family
- Diversional Support: The support encompasses all forms of activities that can shift the attention of the patients from their distress of diagnosis to other therapies that would relieve their
- Family integration: It is the involvement and participation of the patient‟s family in his or her care, which includes financial assistance, physical care, life style modification and role reallocation.
- Holistic Care: This refers to the total care that is given as a result of coming together of all health workers, spiritualists and family caregivers in the interest of the terminally-ill
- Palliative Care: An approach that improves the quality of life of patients and their families facing the problems associated with life threatening
- Palliative Care Services: This refers to the specialized care offered by the health care team which includes relief of pain, prevention of suffering spiritual care and improved quality of life.
- Psychological support: This refers to all the activities given to the terminally-ill aimed at reducing the patients‟ distress. It includes diversional support, emotional support and counselling
- Quality of life: Is the terminally ill patient‟s ability to live a fulfilled life during illness. It involves all activities that would help the person‟s physical health, psychological wellbeing, adequate level of independence and meaningful life.
- Social support: The sum total of all the assistance from significant others that help an individual faced with terminal illness to make him/her function maximally and be part of a supportive social network. Such components include companionship, rehabilitative support, spirituality and regular
- Spiritual Wellbeing: This deals with all the religious aspects of the patients‟ aimed at raising their hope and increase their faith in the trying period of
- Patients: These are sick people that have been diagnosed to have terminal conditions after confirmatory investigations have been
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