http://doi.org/10.33698/NRF0020 Suksham Chopra, Indarjit Walia, Prem Verma
Abstract: For maintaining optimal quality of life, patients with cancer require comprehensive care which is multidisciplinary in nature and involves application of appropriate curative and palliative treatment. Twenty eight nurses who were participants of the workshop on palliative care were included in the study. Over 42 percent were below 30 years and 60.7 percent of them were married and had one-to-two living children. Majority of them were of the view that palliative care should be a team effort. Patients should be told about diagnosis either at the initial stage or advance stage. Doctor should be the right person to communicate end of life care issues with the patients. Disclosure of such information to the patients may help them to take care of their unfinished tasks.
Key Words: Palliative care, attitude, end of life care.
Correspondence at:
Dr. (Mrs.) PremVerma
Lecturer,
National Institute of Nursing Education, PGIMER, Chandigarh, India.
Introduction
Despite scientific progress in regard to cancer treatment and care, cancer-related mortality is still quite high. Current evidence suggests that over 50 percent of cancer patients ultimately die.1-2 Of late, a great deal of stress has been laid on the necessity of taking care of cancer patients, both in developed and developing countries. This is because they exhibit a variety of symptoms-physical and psychological which can be dealt with. It has already been documented that apart from experiencing physical symptoms, patients with incurable cancer suffer from depression and suicidal icleation3-4. For maintaining optimum quality of life, patients with incurable cancer require comprehensive care which is multidisciplinary in nature, and involves application of appropriate curative and palliative treatment. Undoubtedly, care of such patients constitutes a major part of work-load of oncologists. Besides, it is a stress on health care resources.
We may mention here that WHO defines palliative care as the “total active care of patient whose disease is not responsive to curative treatment.” The WHO also recognizes the importance of families receiving inputs from palliative care services identifying the patient and the family as the unit for care’. In developing countries like ours, the challenge today is to apply the philosophy and principles of palliative care in such a way that it provides compassionate, appropriate, cost-effective and innovative care not only to cancer patients but also to their care givers in accordance with their needs. In the terminal stage of cancer, coping mechanism of cancer patients depend on many factors including pain, unpleasant symptoms, side-effects of previous treatment and fear about death.
In India, we rarely come across studies related to the attitudes of health workers, especially nurses, towards palliative care. The present study was especially designed to explore attitudes of nurses towards palliative care. Investigators made an attempt to understand their coping capacities and potentials for providing palliative care to cancer patients in settings like ours with the limited health facilities. We assured that such understanding would be of considerable help in the planning and execution of palliative care for the cancer patients.
Materials and methods
For the purpose of this study, a group of 28 nurses, who were participating in a workshop on Palliative Care during March, 2004 at the National Institute of Nursing Education of PGIMER Chandigarh were interviewed. The workshop was financed by the Ministry of Health and Family Welfare, Government of India. Data was gathered by a trained investigator in social sciences, with the help of semi-structured interview schedule, which was pretested. Nurses participating in this study received special training on different aspects of palliative care through lectures delivered by experts. The purpose of the workshop was to reorient the nurses on this subject. In addition, group discussions were held to clarify their doubts and to allow them to express their opinions related to cancer patients in a free and frank manner.
Results
Over 42% of the respondents were below 30 years, and of the rest 46.4 percent were in the age group of 31-50 years, 10.8 percent were above 50 years. The bulk of them came from the Union Territory of Chandigarh and Punjab and only one of them represented Himachal Pradesh. More than Seventy percent of them had 6-20 years of job experience. However, 11 percent of them had more than twenty years of job experience. Nearly one-third of them were either graduates or postgraduates in nursing and rest all possessed a diploma in general nursing and midwifery. Moreover, 60.7 percent of them were married and had one-to-two living children (Table-1).
Table-1: Socio-demographic characteristics of nurses
| Socio-demographic Characteristics | No. | Percentage | |
| (i) | Age Group (in years)
Less than 30 31-50 51 and above |
12 13 03 |
42.8 46.4 10.8 |
| (ii) | Professional Qualifications
Diploma in Nursing Graduates in nursing Postgraduate in nursing |
19 07 02 |
67.8 25.0 07.2 |
| (iii) | Marital Status
Married Unmarried |
17 11 |
60.7 39.3 |
| (iv) | Professional Experience
Less than 5 years 6-10 years 11-20 years 21 and above |
05 12 08 03 |
17.8 42.9 28.5 10.8 |
All of the respondents were frank enough to express their opinions in regard to how cancer patients should receive palliative care. It may be mentioned here that five of them also had personal experience of interacting with family members who suffered from cancer. It seems that personal experience of such respondents acted as a motivational factor for giving palliative care to all cancer Patients. Significantly, a majority of respondents (64.2%) were of the view that Palliative care should be a team effort and that the oncologists should involve other health Professionals, especially nurses, in the management of physical and psychological symptoms of the cancer patients. Needless ‘D say that those who come in direct contact with the patients can render this service better, provided they are adequately trained for dealing with patients’ emotional and psychological needs.
At present, nurses seem to be in need of further training for interacting with these patients in a wholesome manner. Findings in this regard revealed that 64.2 percent of respondents felt emotionally burn out and 67.2% felt depressed while caring for cancer patients. In fact, 57.1 percent of them were of the view that someone else should look after such patients. Yet, 82.1 percent were confident of helping in the management of patients’ physical symptoms. But all the respondents were concerned about the inadequacy of communication skills in discussing with the patients about their limited life span and related issues (Table-2). It may be worthwhile to mention here that physicians in general
Table-2: Attitudes toward management of symptoms
| Socio-demographic Characteristics | No. | Percentage | |
| A. | All cancer patients should receive palliative care | 28 | 100.0 |
| B. | Medical oncologists should be involved/coordinating/ managing: | ||
| (1) | Physical symptoms | 25 | 89.2 |
| (2) | Psychological symptoms | 22 | 78.5 |
| (3) | Family members | 16 | 57.1 |
| (4) | Team members | 20 | 71.4 |
| (5) | End of the life care issues | 18 | 64.2 |
| C. | Personal views while dealing with cancer patients | ||
| (1) | I feel satisfied while managing physical symptoms | 23 | 82.2 |
| (2) | I find difficult to disclose information | 21 | 71.4 |
| (3) | I feel depressed | 19 | 67.2 |
| (4) | I feel emotionally burn out | 18 | 64.2 |
| (5) | I like someone else to look after my cancer patients | 16 | 57.1 |
like such patients to be aware of their diagnosis and also about their eventual reslt Of late, a great deal of stress has been laid to recognize patients’ right to participate in decision-making process regarding their care. The International Codes of Human Rights law also accept the right to autonomy or self- determination and it is perceived as necessary to human dignity’. In our settings, patients rarely raise such issues on their own. It is therefore, the responsibility of the health professionals, including nurses, to make appropriate assessment of patients’ needs for information about prognosis. It would be necessary to perform this task with some measure of hope. In this regard, over sixty percent of our respondents (64.2%) were of the view that patients should be told about their diagnosis at the initial or advance stage.
However, 14.2 percent of them were ot in favour of disclosing the diagnosis to the patient at the terminal stage as they apprehended that such communication at this stage may dampen their will power in fighting the disease (Table-3).
It is viewed that communication of the diagnosis at the initial or advance stage could motivate the patient to seek timely medical assistance. Nearly one fifth of respondents (21.4%) expressed the view of not disclosing the diagnosis to the patients regardless of the stage of development of the disease. They thought that this would depress the patients. Majority of the respondents were also of the view that in view of the greater trustworthiness the doctor
Table-3: Attitudes toward disclosure of terminal illness to the cancer patient
| Attitude toward terminal illness | No. | Percentage |
| Disclosure of information | ||
| Yes | 22 | 78.6 |
| No | 06 | 21.4 |
| Stage | ||
| Initial | 12 | 42.9 |
| Advance | 06 | 21.4 |
| Terminal | 04 | 14.3 |
| Not to be told | 06 | 21.4 |
| By whom | ||
| Doctor | 17 | 60.7 |
| Nurse | 05 | 17.9 |
| Not to be told | 06 | 21.4 |
| Reasons for disclosing/not disclosing* | ||
| To finish unfinished tasks | 20 | 71.4 |
| Can take better care | 18 | 64.2 |
| Patient has the right to know | 16 | 57.0 |
| Patient will be depressed | 08 | 28.5 |
| Discouraged to fight against disease | 06 | 21.4 |
*Multiple responses should be the best persons to disclose the diagnosis to the patients. They recognized the fact that doctors alone possessed complete knowledge of their patient’s condition. About sixty percent (60.7%) of our respondents were in favour of disclosing the information to some trustworthy members of the patients’ family. They felt that patients’ family members would know better patients’ emotional and psychological need and also as to how to provide them the required social support. It may also be mentioned here that disclosure of such information to the patients may help them to take care of some of their unfinished tasks in time.
Discussion
The exploratory study makes it abundantly clear that the development of palliative care for cancer patients, in settings such as ours, would require a great deal of effort on the part of all concerned. Presently, palliative care is still in its infancy. One has to recognize the fact that one has not only to manage physical symptoms of the patients but also to take care of their emotional and psychological symptoms. One has also to recognize that the management of such symptoms of the cancer patients requires a great effort on the part of all care givers. While physicians, including oncologist, may need to strengthen their intervention strategies. Nurses on their part would need to plan a combination of inputs, ranging from management of physical symptoms of the cancer patients to handling of their end-of-life care issues. Studies have shown that even medical oncologists had not received adequate training during their residency period in palliative care, management of cancer pain and communication skills’-“. Other Surveys from the U.S., also report that 20-25 percent of oncologists had revealed that dealing with end-of-life care issues of the patients was the worst part of their being oncologists. In fact, 10 percent of them had experienced a sense of failure when their patients ‘became terminally ill12. In present study, a majority of nurses expressed that they felt comfortable in managing physical symptoms of the cancer patients. At the same time, more than seventy percent of respondents had expressed that it would be difficult for them to disclose the diagnosis to the patient or to their family members. It has also been reported that the phenomenon of burnout among medical oncologists is often associated with depression and depersonalization which adversely effects the patient care.
Thus for providing appropriate palliative care to cancer patients, we need to routinely organize workshops on palliative care for the nursing personnel so that they are well-informed and well-prepared to deal with the situation. Nurses must be thoroughly trained to do full justice to their role in providing palliative care to the cancer patients. It is high time that nursing trainers, representing recognized nursing institutes, play their due role in this regard. After all, nurses are an integral part of the medical care team dealing with all kinds of patients including cancer patients.
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