Implication of the Cost of End-of-Life Care

Implication of the Cost of End-of-Life Care

Chapter One

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 patient

CHAPTER TWO

LITERATURE REVIEW AND THEORETICAL FRAMEWORK

This chapter presents a detailed review of relevant literature pertaining to the study. It was discussed under the following subheadings:

Palliative care: conceptualization and issues

Palliative care (from Latin „palliare‟ to cloak) is a specialized area of healthcare that focuses on relieving and preventing the suffering of patients. Unlike hospice care, palliative medicine is appropriate for patients in all disease stages, including those undergoing treatment for curable illnesses and those living with chronic diseases, as well as patients who are nearing the end of life (Morgan, 2000). Palliative medicine utilizes a multidisciplinary approach to patient care relying on input from physicians, pharmacists, nurses, chaplains, social workers, psychologists, and other allied health professionals in formulating a plan of care to relieve suffering in all areas of a patient’s life. This multidisciplinary approach allows the palliative care team to address physical, emotional, spiritual, and social concerns that arise with advanced illness (Regnard & Kindlen, 2001).

Medications and treatments are said to have a palliative effect if they relieve symptoms without having a curative effect on the underlying disease or cause. This can include treating nausea related to chemotherapy or something as simple as morphine to treat a broken leg or aching related to an influenza (flu) infection (Clark, 2000). Although the concept of palliative care is not new, most physicians have traditionally concentrated on trying to cure patients. Treatments for the alleviation of symptoms were viewed as hazardous and seen as inviting addiction and other unwanted side effects (Seymour, Clark & Winslow, 2004). The focus on a patient’s quality of life has increased greatly during the past twenty years. In the United States today, 55% of hospitals with more than 100 beds offer a palliative-care program (Joanne, 2004). A relatively recent development is the concept of a dedicated health care team that is entirely geared towards palliative treatment: a palliative-care team. Palliative care is provided by a team of doctors, nurses, and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment (Hill, 2007). Non-hospice palliative care is appropriate for anyone with a serious, complex illness, whether they are expected to recover fully, to live with chronic illness for an extended time, or to experience disease progression. In contrast, hospice care is also palliative, the term „hospice‟ applies to care given to patients with a prognosis of six months or less to live (Jeffrey, 2003).

WHO (2002) defined palliative care as an approach that improves the quality of life of patients facing the problems associated with life threatening illnesses and their families through prevention and relief of suffering by early identification, and relief of pain and other problems be it physical, psychological or spiritual. However, the goal of palliative care is to promote the quality of life across the illness trajectory through the relief of suffering, including care of the dying and bereavement follow-up, Coyle (2002:579) reported the exact words of a palliative care patient:

My life‟s work is done, but I am not able to die. How can the day to day time I have left be given a sense of meaning?” The hardest thing is living without a goal a new way of being-just being that is the hardest thing: I know that I‟m going to die at some point, but I don‟t want it to be a painful and undignified death. This is the most important time in my life and yet I feel disconnected from it Its hard to talk to my family about how I feel-they don‟t understand.

As reflected by the words of the patient quoted, illness both affects and is affected by all aspects of the individual‟s being, Kearney (2000) opined that the potential for healing in the face of progressive disease is a potential rooted in the special relationship between the healer and the sufferer. The genuine warm and compassionate relationship of a palliative care or hospice care provider, with his or her patient is frequently a healing relationship. The health care team gives attention to the physical, psychological, social, spiritual and existential aspects of the patient and family i.e whole person care (holistic) Morrow (2004) described palliative care as a combination of state of the art clinical competence with fidelity to the patient, the ability to listen and to remain present in the face of much suffering and distress and communication at a deeply personal level with the patient and family. Palliative care involves having a genuine interest in the person as an individual and the ability to convey hope even in the face of death. In the view of Coyle (2002), specialised education and training as well as mentoring by seasoned palliative care team is recognised as a needed foundation for palliative care and hospice care, without such training, health carers inevitably find themselves in situations where they are unable to provide necessary symptom control and amelioration of suffering for those living with advanced progressive disease and those near death.

There is a particular thought that sometimes run through the minds of health care givers which is their inability to adequately care for the terminally-ill due to ignorance, this experience is as true today as it was several decades earlier, it is rather impossible for any health care giver to practise what they do not know, and it‟s usually traumatic if this thought haunts somebody after the ill person has died. However, when under the care of a skilled palliative care personnel, patients and their families struggling to live in the face of progressive, symptomatic and debilitating disease can be well cared for and supported through this process, and find meaning and peace even in the face of death. This is the essence of skilled palliative care giver-to facilitate the “caring” process through a combination of science, presence, openness, compassion, mindful attention to detail and team work (Brazil, Howell & Bedard, 2005)

In the view of Kuhl (2002), even with the knowledge and art to control the majority of symptoms that occur during the last months, weeks, and days of life, there is much to learn about how to alleviate the psychological and spiritual distress that come with life threatening illness, listening to the experts, the patients and their families will help obtain the necessary knowledge. Kathleen (1998) commented that advances in health care have changed the trajectory of dying, improved nutrition and sanitation, preventive medicine, wide spread vaccination use, advancement in appropriate antibiotics and an emphasis on early detection and treatment of disease have resulted in fewer deaths in infancy and childhood, and fewer deaths from acute illness. Majority of deaths occur after a long progressive debilitating illness like cancer, heart disease, kidney disease, lung disease and acquired immunodeficiency syndrome (AIDS). Palliative care needs of children have long been ignored, and in response to this, it has now been expanded by building on the long tradition of hospice care and models of excellent care within the hospice. Palliative care for children represents a special albeit closely related field to adult palliative care. Palliative care for children is defined as the active, total care of the child‟s body, mind and spirit and also giving support to the family. it begins when illness is diagnosed and continues regardless of whether or not a child receives treatment directed at the disease, (WHO 1998). Effective palliative care for children also requires a broad multidisciplinary approach that includes the family and makes use of available community resources that can be successfully implemented even if resources are limited, It can be provided in tertiary care facilities, community health centres and even in the children‟s home.

CHAPTER THREE

RESEARCH METHODOLOGY

Research design

The research design adopted for this study was the descriptive survey research design of the ex-post facto type. This is chosen because it provides the researcher the opportunity to collect data without manipulation of the independent variables which had already occurred.

Population of the study

The population of the study was 587 and were in three categories and comprised 202 terminally-ill patients from wards and clinics as well as 202 family caregivers representing one family caregiver for one patient while the third category were the health workers made up of doctors, nurses social workers and physiotherapists selected also from the same wards and clinics totalling 183 health workers. Total respondents for the study were 587.

Sample and sampling technique

The study adopted proportionate, stratified and purposive sampling procedures to ensure actual representation of respondents from the three categories. i.e Health workers, patients and family caregivers. The health workers were stratified into four strata based on their professions (doctors, nurses, physiotherapists and social worker). Sixty percent of the total population of health workers‟ category were chosen from each stratum because they constituted a good representation in the health workers category.

From the chosen eight wards and three out-patients clinics, 202 terminally-ill patients were chosen excluding the unconscious patients in each of the chosen wards. The same applies to their family care-givers selected at the ratio of one family caregiver to one patient (202 respondents each from the two categories).

CHAPTER FOUR

RESULTS AND DISCUSSION OF FINDINGS

This chapter deals with the results and discussion of findings based on the information collected from the 587 respondents used for this study. The results obtained were clearly presented and exclusively discussed starting with the demographic status of the respondents in part “A”. Furthermore, results of the analysis of quantitative data on the three hypotheses and two research questions were presented in tabular forms followed by detailed discussion in part “B”. These were complemented with report from the qualitative data obtained from in-depth- interview.

CHAPTER FIVE

SUMMARY, CONCLUSIONS AND RECOMMENDATIONS

This chapter presents the summary, conclusion and recommendations based on the findings of this study. The educational implications, limitations and possible areas for further studies are also discussed in this chapter.

Summary

This study examined psychosocial supports and family integration as determinants of palliative care of the terminally-ill patients in the University College Hospital, Ibadan, Nigeria. To achieve this, the study was divided into five chapters. Chapter one dealt with the introduction with sub-headings such as: background to the study, statement of the problem, research objectives, research questions, significance of the study and scope of the study. The chapter ended with the operational definition of relevant terms.

Review of the related literature was extensively done in chapter two giving insight into previous studies as they are related to the present one. Empirical studies relevant to the study were also reviewed. In the same chapter, two theories were reviewed that provided theoretical framework. Upon appraisal of literature and formulated hypotheses, within which this study was hanged.

The third chapter of the study was on research methodology. This comprises of the research design, population, sample and sampling technique, research instruments, validity and reliability of the instruments, procedure for data administration and collection of data, a pattern of conduct of in-depth interview (IDI) as well as procedure of data analysis.

Chapter four of the study provided results of the findings and their discussions. The data collected were coded, analysed and presented with the use of descriptive and inferential statistical tools. The use of mean (X ) scores for the research questions and Pearson Product Moment Correlation and Multiple regression for the research hypotheses. The findings of this study revealed that:

Diversional support, behavioural supports, counselling services, emotional support and educational conselling were psychological factors that significantly correlated with palliative care for the terminally ill patients which was about 62% of the variation which was accounted for by the independent variables. The joint effect of the independent variables on psychological factors (diversional support, behavioural support, counselling services, emotional support and educational counselling) on palliative care was significant at 38.0% of the variation which was accounted for by the psychological independent variables.

Psychological variables were significantly related to palliative care. Emotional support had the highest value with r= .686**, followed by educational counselling withr=.610**, next is diversional support with r= .538**, followed by behavioural support with r= .500** and counselling services with r= .451**.

Companionship, spirituality, rehabilitative supports and regular visitations were social factors that significantly correlated with palliative care for the terminally ill patients which was about 26.0% of the variation which was accounted for by the independent variables. The joint effect of the independent variables (social factors) (companionship, spirituality, rehabilitative supports and regular visitations) on palliative care was significant at 74.0% of the variation which was accounted for by the social independent
Social variables were significantly related to palliative care. Regular visitations had the highest value with r= .410**, followed by spirituality with r= .334**, followed by rehabilitative supports with r= .308** and companionship with r=.066**
Financial assistance, life-style modification, and re-allocation of roles were family integration factors that correlated significantly with palliative care which was about 54.0% of the variation accounted for by the independent variables. The joint effect of the independent variables-family integration (financial assistance, life-style modification, and re-allocation of roles) on palliative care was significant at 46.0% of the variation that was accounted for by the family integration
Family integration factors were significantly related to palliative care. Financial assistance had the highest value with r= .648**, followed by life-style modification with r= .316** and re-allocation of roles also with r=.316**
The in-depth interview conducted among the selected health workers, social workers and the family care givers revealed that collaborations and supports among the earlier mentioned personalities enhanced palliative care services provided for the terminally ill patients. Also, since palliative care involves amalgamation of various roles and responsibilities. The interviews conducted revealed that these roles and responsibilities of the individuals and groups must be so coordinated to see to the less suffering and bring about hopes even is the face of

Conclusion

The place of palliative care for terminally-ill patients cannot be overemphasised. The belief that the terminally-ill would or could close life at any stage of illness becomes the basis of anxiety on what the outcome of illness could be. A lot of previous researches have been conducted on the transition from curative care to palliative care in which they have little knowledge about the potentially complex situation. Evidence, thus, revealed that continuity of care and multidisciplinary collaboration are crucial to improving the experience of the patients. However, the sensitivity of the illness and possible outcome have been a major concern to the health care team and the sufferers.

Policy Implication of the study

There is the need to have a policy that will ensure that all persons with all forms of terminal or life limiting illnesses visit nearest health care facility, so as to make early diagnosis and selection of referral to appropriate hospital in order to assess comprehensive care.

Also, the psychosocial supports of the terminally ill should point towards solution for individual challenges in interacting with the management of the illness and the outcome.

Policies in palliative care practice should be periodically reviewed and be the standard of care right from when diagnosis is made, throughout the period of management irrespective of prognosis. Through this, psychological well-being of patients and family caregivers would be at equilibrium. Besides, in-service education on palliative care practice should be for all health workers in health institutions so that they would have an in-depth knowledge and function effectively in health centres for the effectiveness of the palliative care programme.

Recommendations

Premised on the findings, this study, therefore recommends that;

All health centres (Hospitals) should give priority attention to psychological factors determining palliative care for the terminally
Social factors such as companionship, spirituality, rehabilitative supports and regular visitations are key factors towards enhancing the capacity of the terminally Efforts should be made to encourage these factors by all the care-givers

Financial assistance, life-style modification and re-allocation of roles must be the concerns of the extended family members, philanthropists, and government

All these are apt towards reducing the stress of the terminally ills and his/her family members. Health insurance schemes should function to care for the needy.

The government should allocate more funds for the management of terminally-ill person. This would make them seek health care early and their financial constraints could be attended to. Medicines and investigations must be subsidized for theterminally-ills.
For effective palliative care for the terminally ill, the government should provide vehicles to ease transportation for those involved so that home based care can be rendered, those needing hospital admissions can be brought with the vehicles provided this would improve their psychological well-being and families would be comforted even if the inevitablehappens

Contributions to knowledge

This work has brought to limelight the issue of palliative care and its relevance in the plight of those with terminal-illness. It has highlighted the importance of quality of life and the need to see both the patient and family as a unit of care because whatever happens to this patient would inadvertently affect the family members;

The study had been able to establish the fact that effective palliative care prolongs the life of patient who is expected to have died within a short period of time; the study had identified that early presentation of terminal-ill patients prolongs their life because when diagnosis is made, early high possibility of reduction of spread of the illness is possible.

The need for financial assistance has been discovered as key in crucial to for the terminally ill, hence life style modification, reallocation of roles, rehabilitative support with financial support are essential factors in good delivery of palliative care process.

Finally, counselling services, emotional support and spirituality supports are sensitive factors to be given consideration even in the face of uncertainty by all including the health workers, social workers and the family care-givers.

Limitations to the study

The study covered terminally ill patients in seven selected wards and four outpatient clinics in University College Hospital. Financial constraint on the part of the researcher made it impossible for all the terminally-ill patients in all the wards to be included in the study. The nature of this study would, however, not allow this to happen because the unconscious terminally-ill patients could not be included in the study. The diagnosis of the terminally-ill patients used for this study were limited to those with cardiac problems, end stage kidney diseases, neurological problems, cancer and HIV. The study would have been more extensive if all terminally ill conditions present in the hospital were used, but time and finances could not make this possible.

There was also the issue of ethical approval from UI/UCH ethical committee, which took a long time as the proposal of this research protocol required a lot of scrutiny and corrections before ethical approval was obtained. Even after being granted the ethical approval, the researcher had to seek permission from the chairman medical advisory committee of the hospital for approval to distribute copies of the questionnaire on the wards, while letters had to be written to the various heads of unit for approval before questionnaires were distributed within the neurological wards and clinics. There was administrative bottle neck in which one of the heads of unit prevented the researcher from distributing questionnaires among the patients, giving reason that their diagnosis were personal to them and their carers. So, questionnaires were not allowed. Other relevant wards were used instead.

However, regardless of the problems identified, the findings of the study are reliable and sustainable empirically to be generalised for all the wards and clinics of the tertiary health institutions within which the study was carried out.

Suggestion for further studies

Sequel to the limitations of this study, the researcher wishes to state that other researches could be carried out further in other comprehensive health facilities offering palliative care, and also, a comparative study can be carried out on palliative care of patients with terminally illness in Federal medical health institutions and those receiving care in the traditional-based homes.

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