RAJIV GANDHI UNIVERSITY OF HEALTH SCIENCES,
BANGALORE , KARNATAKA
PROFORMA FOR REGISTRATION OF SUBJECT FOR DISSERTATION
1. / NAME OF THE CANDIDATE AND ADDRESS / BEENAMMA KURIAN1 YEAR M.Sc NURSING
IKON NURSING COLLEGE
BHEEMANAHALLI.
B.M MAIN ROAD. BIDADI,
RAMANAGAR TALUK AND DIST
BANGALORE-562109
2. / NAME OF THE INSTITUTION / IKON NURSING COLLEGE
BANGALORE
3. / COURSE OF THE STUDY AND SUBJECT / 1 YEAR M.Sc Nursing
Medical Surgical Nursing
4. / DATE OF ADMISSION / 10-05-2010
5. / TITLE OF THE TOPIC / “To assess the Knowledge and Attitude of nurses regarding End of life Care with a view to develop a pamphlet on End of life Care at a selected hospital in Bangalore”.
6. BRIEF RESUME OF THE INTENDED WORK
6.1 INTRODUCTION:
“We shall draw from the heart of suffering itself the means of inspiration and survival”.
- Sir Winston Churchill
At the end of life often matters most to the person who is dying is simply being taking time to held a hand, give support and just be…
The focus of end of life has changed overtime, as has cause of death. Until the mid 20th Century the cause of death was infectious disease with the advent of antibiotics after World War II, the most common cause of death become complication from chronic illness. Through new evolving technology, many illness and conditions that shortened the life could be cured, however the dying process was prolonged. Nurses are the most visible member in the health care team & helps patient and family make important decisions about end of life care.
Improved quality of life is of paramount importance with terminal illness. Therefore end of life care be regarded as integral and essential element of nursing. Since they can be provided in a simple and inexpensive they shall be available in every contain country shall we shall continue to be given high priority especially in developing countries.
Those who involved in the end of life care movement try to take active, total care of patient, whose disease is no more responsive to treatment. This means taking care of patients’ physical, emotional, social and spiritual well-being. The end of life care movement in India is very poorly developed in most part of our country. In a country, that has few resources to tackle, curable diseases care of terminally ill is often a few priorities.
But lack of finance is only one of the problem, for a culture, that blame the fate for all the seemingly insurmountable problem, the pain of a terminally ill patient is to born stoically submitting to ones fate. Such an attitude itself is not contusive to exploring means to alleviate ones pain. This is clear from the fact that though India export morphine to rest of the world due to its irrational narcotic regulations its own people are denied access to it. The WHO and Indian Association of Palliative Care to amend and simplify the narcotic regulations have so for persuaded only 7 states in our county.
BACKGROUND OF THE STUDY :
End of life care is not a known entity in most of our medical and nursing colleges. We need to create awareness among health care professional regarding the need to alleviate the suffering of our terminally ill patient. As an educator and resource it is essential for nurses to be knowledgeable about end of life care. For many life support interventions have not helped to mitigate their suffering, but have rather added the agony and burden of a prolonged dyeing process. Death which we all wish to be peaceful and occur in the presence of loved once, has become artificial away from the family surrounded by the paraphernalia of modern critical care. Prolonged and futile life support as undoubtedly imposed enormous economic strain on patient and families. Sitting goals appropriate to clinical situation and integral part of End of life care.
6.2 NEED FOR THE STUDY
Death and dying are inevitable in human beings and hence have been studied in many disciplines including nursing. Nurses have an important and integral contribution to make in the provision and enhancement of end of life care through the research various roles in practice, education, research, administration and policy1
The debate on end of life care is just beginning in India. But has been going on in developed countries for some decades. Since our conditions are markedly different from those in Europe or America, it is good that we are charting our own paths2.
End of life care education is vital for nursing curriculum and in service education to improve nurses’ attitude towards death and dying and consequently improve quality of nursing care of dying patient.
Part of India’s end of life care problem might be “perceptions of death and cultural taboo’s”. The India has a score of 2/5 in public awareness of end of life care, which the report attributes in part of Indian’s reluctance to openly discuss death and dying. This may come as a surprise in light of Hindu beliefs about reincarnation. But as Dr.Rajgopal explains “when it actually happens to somebody in your family, you deny it and don’t want to talk about it [and] don’t want the patient to be told that they’re dying. So, they prevent open communication with the patient.”
It also rated each of the forty countries on availability of painkillers on a scale of one to give again, India scored abysmally, receiving a one, the lowest score of all since every other country received at least a two. Dying in India means a lot suffering3.
In a study to nurses designated as expert in caring for dying patients were interviewed. These experts said that providing patients families with a peaceful, dignified bedside scene was the most important task. These nurse expert also indicated that responding to the needs of the patient families for information about treatment and about patients response to that treatment was a high priority as was helping patients family. An additional way to provide comfort care was talking to patients about their concerns and listening to them in a non-judgmental way. Some expert nurses were also able to show empathy and respect towards families who were expressing anger. Although the nurses understood that the anger was not really directed at them, they still admitted that withdrawing from angry family members was at times the only option4.
6.3 STATEMENT OF THE PROBLEM
To assess the Knowledge and Attitude of nurses regarding End of life Care with a view to develop a pamphlet on End of life Care at a selected hospital in Bangalore.
6.4 OBJECTIVES
1. To assess the level of knowledge nurses on regarding end of life care.
2. To assess the attitude of nurses regarding end of life care.
3. To correlate the knowledge and attitude of the nurses regarding End of life care .
4. To associate the knowledge and attitude of nurses regarding end of life care with their demographic data.
5. To develop a pamphlet on end of life care.
6.5 OPERATIONAL DEFINITION
KNOWLEDGE:
Knowledge refers to degree or range of understanding and awareness of the nurses regarding end of life care.
ATTITUDE:
It refers to opinion, belief and feeling expressed by nurses regarding the merits of blood donations.
NURSES:
Registered nurses working in a selected hospital in Bangalore.
END OF LIFE CARE :
End of life care refers to care not only if patients in the final hour or days of their lives, but more broadly medical care of all those with a terminal illness or terminal conditions that has become advanced, progress and incurable.
6.6 ASSUMPTIONS OF THE STUDY:
It is assumed that
· The selected sample may have some knowledge regarding end of life care.
· The selected sample may have favorable attitude regarding end of life care.
· There may be significant co-relations between knowledge and attitude of selected sample regarding end of life care.
· There may be significant association between knowledge, attitude and demographic variables of the selected samples.
· A pamphlet on end of life care will be distributed to the selected groups.
6.7 HYPOTHESIS:
· H1: The selected group will have limited knowledge on end of life care
· H2: There will be significant association between knowledge and attitude of selected nurses with their demographic variables regarding end of life care.
6.8 REVIEW OF THE LITERATURE:
The term literature review refers to the activities involved in identifying and searching information on a topic and developing an understanding of the state of knowledge on the same. Also review of literature is a written summary of the state and the art of a research problem. Literature review is an essential step in the whole process of research. Therefore the researchers has reviewed literature with regard to problem by referring books, journals, thesis etc.,
Literature review is done for the study is presented under the following heading :
1. Studies related to general information regarding end of life care
2. Studies related to the socio economic and demographic variables of end of life care.
3. Studies related to knowledge and attitude about end of life care.
1. Studies related to general information regarding end of life care
In an article review it is observed, In the United States, the presumption is that the patient is the decision-maker. When a diagnosis is made and the individual is found to have a life-threatening illness, the patient is informed so that he or she can decide what treatment and care is desired. In India, with its long history of a strong patriarchal culture, respect for dignity may be shown differently, according to my dialogue with clinicians, nursing faculty, and administrators in these three facilities. Often, it is the most senior male member of the family to whom a patient’s diagnosis of a life-threatening illness (e.g. cancer) is first communicated, and it may be this person who makes treatment decisions. This then creates an ethical dilemma for some health care providers in cases where they must provide cancer treatment when the patient is not informed as to why the additional treatment is needed. So the provider is faced with the dilemma of how to communicate with the patient, telling him or her that it is a “growth”, or that the tests were negative, or simply delaying in telling the patient his or her diagnosis directly or right way, there is a gradual shift occurring, as voiced by some of the clinicians and administrators suggesting that it would be better to tell the patient the diagnosis directly and let him or her make decisions about active treatment or palliative care5.
A Study was conducted to describe the practices in intensive care units in Mumbai hospitals regarding limitation and withdrawal of care at the end of life. Intensive Care Units of four major hospitals. The proportion of hospital deaths that occurred in an intensive care unit was 14% in the cancer hospitals 23% in the public hospitals, and 58-73% in the two private hospitals (chi-square test for trends, p< .0001). Of the 143 deaths that occurred in intensive care unit, limitation of care occurred in 49 patients. Twenty-Five percent of these patients were not intonated terminally, 67% were initially intubated and ventilated but failed to recover and subsequently had no further escalation of therapy and 8% had withdrawal of therapy. Therapy was limited in 19% of deaths in the public hospital intensive care unit (odds ratio, o.44; 95% confidence interval, 0.2-0.97) vs. 40%, 41%, and 50% of deaths in the other three intensive care units. Therapy is limited in a significant proportion of intensive care unit patients. Significant differences in the practice of limitation of therapy exist between public and private hospitals. Lack of access to a limited number of intensive care unit beds, especially in the public hospital, may constitute implicit limitation of care6.
A study was conducted to describe nurses’ perceptions of Knowledge and ability, work environment, support for staff, support for patients and patient’s families, and stress related to specific work situations in the context of end-of-life care before and after implementation of approaches to improve end-of-life. The approaches were a nurse-developed bereavement program for patients’ families, use of a palliative medicine and comfort care team, preprinted orders for the withdrawal of life-sustaining treatment, hiring of a mental health clinical nurse specialist, and staff education in end-of-life care. Nurses in 4 intensive care units at a university medical center reported their perceptions of end-of-life care by using a 5-subscale tool consisting of 30 items scored on a 4-point Likert scale. The tool was completed by 91 nurses. This results in improvements overall mean scores on the 5 sub-scales indicated that the approaches succeeded in improving nurses’ perceptions. Most of the subscale overall mean scores were higher than a desired criterion.
Analysis of variance indicated that some improvements occurred over time differently in the units’ other improvements occurred uniformly. It is observed that practice development is needed in end-of-life care issues7.
A study was conducted to assess the nurses’ perceptions of End-of-Life care after multiple interventions for improvement. Despite high mortality rates, surprisingly little research has been done to study chronic kidney disease (CKD) patients' preferences for end-of-life care. The objective of this study was to evaluate end-of-life care preferences of CKD patients to help identify gaps between current end-of-life care practice and patients' preferences and to help prioritize and guide future innovation in end-of-life care policy. A total of 584 stage 4 and stage 5 CKD patients were surveyed as they presented to dialysis, transplantation, or predialysis clinics in a Canadian, university-based renal program between January and April 2008. Participants reported relying on the nephrology staff for extensive end-of- life care needs not currently systematically integrated into their renal care, such as pain and symptom management, advance care planning, and psychosocial and spiritual support. Participants also had poor self-reported knowledge of palliative care options and of their illness trajectory. A total of 61% of patients regretted their decision to start dialysis. More patients wanted to die at home (36.1%) or in an inpatient hospice (28.8%) compared with in a hospital (27.4%). Less than 10% of patients reported having had a discussion about end-of-life care issues with their nephrologists in the past 12 months Resulting the Current end-of-life clinical practices do not meet the needs of patients with advanced CKD8.