Assessment of Knowledge about Palliative Care among Registered Nursing Professionals: A Prospective Cross-Sectional Study in a Tertiary Care Hospital in Central India
Objective: This study aimed to assess the palliative care knowledge among the registered nurses working in tertiary care hospital in Madhya Pradesh.
Methods and materials: A prospective cross-sectional study was conducted on 160 registered nurses working in different departments in tertiary care hospital in Madhya Pradesh, who were selected through a purposive sampling technique. The data was collected through an online questionnaire for the socio-demographic variables and validated a self-report questionnaire to measure the knowledge of health care professionals in palliative care and the data was analysed by IBM-SPSSv26.
Results: A total of 160 participants enrolled in the study. Basic knowledge care was quite high among the samples (83.75%). Item 1,2 of pain in palliative care was quite high (83.43%) and item 3,4,5 has (22%) only, overall management of pain knowledge was (47%) which is on the lower side. The use of Morphine was 31.04%, Dyspnoea Management it was 38.33%, and in the communication of prognosis, it was 81.56%. Resuscitation knowledge was 46.85%, Psycho spiritual was 24.06% and Bereavement care was 69%.
Conclusion: One of the biggest challenges in providing excellent palliative care is that nurses don’t know enough about it. Therefore, improving the quality of palliative care services provided to patients could be accomplished by increasing their knowledge through in-service education and retraining on the job.
Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to maintain and improve the quality of life of patients, their families and their caregivers .
Palliative care and end-of-life care is included in the undergraduate medical curriculum as per the National Health Policy, in 2017. The impact of this essential step on the delivery of care in the country is noy yet appreciable. India is at the 59th position in ‘Quality of death index” among 81 countries studied . The parameters included in calculation of “quality of death Index” are: (a) management of pain and discomfort (b) clean and safe space for the patients, and (c) whether or not patient is treated kindly . These issues can best be addressed by educating medical professionals and creating public awareness; The fragmented delivery of palliative care in present day needs to change towards a better understanding of the enormous symptom burden during long term care, end -of life scenarios.
There are approximately 1000 palliative care units in India, ninety percent of these being located in a single state of Kerala with a population accounting for three percent of the country’s population . As per Palliative care directories, there are 16 palliative care centres active in the state Madhya Pradesh with a population of five percent of total population of India [4,5].
Patients and their families have the right to receive palliative care in the end of their life, the nurses are not well-trained in palliative care and lack basic knowledge [6,7]. There is a need to educate nurses in order to provide high-quality palliative and end-of-life care. As there is limited research on palliative care with nurses, the first step is to assess their baseline knowledge of palliative care. The findings of this cross sectional study among nurses from a variety of disciplines will be the basis of formulating a program of sensitization and education of nursing professionals so that effective palliative care can be delivered to patients.
1. To assess the knowledge of palliative care in registered nurses working at tertiary care hospitals.
2. To find an association between the duration of nursing experience with the knowledge of palliative care.
Materials and Methods
The study was conducted by means of a purposive sampling technique on registered nurses working in various departments of a multispecialty tertiary care hospital in Madhya Pradesh. All participants were required to provide their written informed consent prior to their participation. Consented participants were given the survey questionnaire using an online survey questionnaire. The study utilized a self-report questionnaire “The Palliative Care Knowledge Questionnaire-Basic (PCKQ-B)” recently validated by Pruthi et al. to measure the knowledge of health care professionals about palliative care in the Indian context . The scale had 25 items for each of which the person had to answer ‘Yes,’ ‘No,’ or ‘Don’t Know.’ Items 1 for definition of palliative care (1 Item), 2 to 6 indicates philosophy (5 Items), 7 to 11 for pain in palliative care (5 Items), 12 to 14 for morphine in palliative care (3 Items), 15 to 17 for Dyspnoea (3 Items), 18 to 19 for communication of prognosis (2 Items), 20 to 21 for Resuscitation in palliative care, 22 to 23 for psycho-socio-spiritual issues (2 Items) and 24 to 25 for Bereavement care (2 Items). The obtained data was analysed using SPSS version 26. Chi-Square test was used to evaluate the significance of association between the self-report questionnaire and duration of work experience at 0.05 level.
The study group had 160 participants (97 female and 63 male) working as registered nurses in tertiary care hospital. Their median age was 23 years (22 to 50 years), 95 (59.4%) had a BSc Nursing degree. 78 participants had work experience of >3 years (48.8%) (Table 1).
|Item||Frequency (percentage) N=160|
|Median Age (Range)||23 (22 to 50)|
|<3 years||82 (51.2)|
|≥3 years||78 (48.8)|
|Number of terminally ill patients ever cared for|
|1 to 10||56 (35)|
|10 to 50||37 (23.1)|
|50 to 100||17 (10.6)|
|Number of cancer patients ever cared for|
|1 to 10||55 (34.4)|
|10 to 50||36 (22.5)|
|50 to 100||16 (10)|
|Non oncology||123 (76.8)|
|Participation in educational activities related to palliative care|
Basic knowledge of palliative care
The response of the nurses to the need of palliative care: 128 (80%) responded in the affirmative, that palliative care is necessary across domains like chronic illnesses, HIV / AIDS; cancers, heart disease (Table 2).
|Experience (<3 years)||Experience (>3 years)||p-value|
|Yes (%)||No (%)||Don’t know (%)||Yes (%)||No (%)||Don’t know (%)|
|When do you think palliative care is needed?|
|2. Care of patients with advanced cancer||80 (97.6)||11 (13.4)||3 (3.7)||77(98.7)||2 (2.6)||5 (6.4)||0.035|
|3. Total care of chronically ill patients||69 (84.1)||9 (11)||4 (4.9)||68 (87.2)||6 (7.7)||4 (5.1)||0.776|
|4. HIV/AIDS patients||56 (68.3)||18 (22)||8 (9.8)||65 (83.3)||9 (11.5)||4 (5.1)||0.086|
|5. Chronic non-malignant diseases such as end-stage heart failure||66 (80.5)||10 (12.2)||6 (7.3))||67 (85.9)||8 (10.3)||3 (3.8)||0.568|
|6. Palliative care should start at the time of diagnosis of a life-threatening illness||66 (80.5)||13 (15.9)||3 (3.7)||71 (91)||6 (7.7)||1 (1.3)||0.16|
|Pain in palliative care:|
|7. Is pain a vital sign?||61 (74.4)||21 (25.6)||0 (0)||64 (82.1)||12(15.4)||2 (2.6)||0.109|
|8. Severity of pain determines method of pain treatment.||72 (87.8)||9 (11)||1 (1.2)||70 (89.7)||7 (9)||1 (1.3)||0.915|
|9. Most effective drug for cancer pain is fortwin +phenargan.||52 (63.4)||23 (28)||7 (8.5)||50 (64.1)||23 (29.5)||5 (6.4)||0.873|
|10. Use of placebos is appropriate in some types of pain.||54 (65.9)||18 (22)||10 (12.2)||61 (78.2)||12 (15.4)||5 (6.4)||0.202|
|11. A patient on morphine does not need NSAIDs (e.g. diclofenac)/paracetamol.||58 (70.7)||18 (22)||6 (7.3)||61 (78.2)||15 (19.2)||2 (2.6)||0.325|
|Morphine in palliative care:|
|12. Causes addiction in terminally ill patients||59 (72)||9 (11)||14 (17.1)||62 (79.5)||14 (17.9)||2 (2.6)||0.007|
|13. Causes death in all dying patients||40 (48.8)||35 (42.7)||7 (8.5)||34 (43.6)||40 (51.3)||4 (5.1)||0.463|
|14. Always causes nausea/vomiting||53 (64.6)||23 (28)||6 (7.3)||46 (59)||28 (35.9)||4 (5.1)||0.526|
|15. Patient with lung metastasis having breathlessness must be intubated (in palliative care)||58 (70.7)||13 (15.9)||11(13.4)||50 (64.1)||26 (33.3)||2 (2.6)||0.004|
|16. Are you aware of problems and practical care of patient with colostomy?||62 (75.6)||10 (12.2)||10 (12.2)||63 (80.8)||12 (15.4)||3 (3.8)||0.145|
|17. Oxygen supplementation may help in last difficult breaths.||68 (82.9)||8 (9.8)||6 (7.3)||65 (83.3)||12 (15.4)||1 (1.3)||0.114|
|Communication of prognosis:|
|18. Prognosis should always be clearly communicated||71 (86.6)||6 (7.3)||5 (6.1)||75(96.2)||2 (2.6)||1 (1.3)||0.096|
|19. Prognosis should only be informed to family members||55 (67.1)||19 (23.2)||8 (9.8)||60 (76.9)||17 (21.8)||1 (1.3)||0.059|
|Resuscitation in cancer patients:|
|20. Resuscitation must always be performed if a patient is crashing irrespective of advanced metastatic cancer.||57 (69.5)||16 (19.5)||9 (11)||56 (71.8)||19 (24.4)||3 (3.8)||0.205|
|21. Patients (if possible) and relatives both should always be involved in ‘Do Not Attempt Resuscitation (DNAR/ DNR)’ decision making.||53 (64.6)||17 (20.7)||12 (14.6)||62 (79.5)||12 (16.7)||3 (3.8)||0.038|
|22. Role of nurses is to take care of physical aspect of disease only, psychological issues must be dealt by psychiatrist or other professionals.||60 (73.2)||19 (23.2)||3 (3.7)||58 (74.4)||17 (21.8)||3 (3.8)||0.978|
|23. Role of nurses is to take care of physical aspect of disease only, social issues must be dealt by social worker or other professionals.||56 (68.3)||19 (23.3)||7 (8.5)||52 (66.7)||22 (28.2)||4 (5.1)||0.581|
|24. Do you know what bereavement is?||57 (69.5)||12 (14.6)||13 (15.9)||59 (75.6)||7 (9)||12 (15.4)||0.524|
|25. Are you aware of concept of bereavement care?||50 (61)||19 (23.2)||13 (15.9)||57 (73.1)||12 (15.4)||9(11.5)||0.263|
Nurses with > 3 years-experience have responded significantly better when asked about need of palliative care in advanced cancers in comparison to staff having experience < 3 years (p=0.035) (Table 2). Pain management is the most important aspect of palliative care and the awareness about pain among nursing staff is quite good with approximately 83% responding in the affirmative. The difference in response with years of experience was not statistically significant. Knowledge of different mechanisms mediating pain seemed inadequate. Only 22% responded correctly identifying the mechanism irrespective of their years of experience. The role of morphine is pivotal in management of pain in terminally ill cancer patients and only 30% of the nurses responded correctly, with staff having experience of 3 years responded significantly better (p=0.007). The use of endotracheal intubation and assisted ventilation is not well understood. Only 28/160 (18) of respondents identified it correctly. The knowledge of the futility of intubation in dying patients was significantly better among experienced (> 3 years) staff than others (p=0.004). The need for resuscitation was identified correctly by about 46% respondents. mentioning “do not attempt resuscitation” decision making (p=0.038). on communication of prognosis About 56 % nurses responded correctly about communication of prognosis and those having >3 years responding significantly better (p=0.059). Nearly 23% responded satisfactorily about psycho-social-spiritual issues, irrespective of the length of experience (Table 2). The knowledge about bereavement is common among the nursing staff with 69% responding correctly with no significant difference in response based on experience.
Nurses are in close contact and spend long hours with patients in a palliative care unit, and develop a unique bond with them. Their training will go a long way in delivering effective palliative care. The present study is an early attempt to gauge the knowledge level of nurses about palliative care. and is the first step in prioritizing holistic culture specific palliation of the enormous symptom and distress burden that cancer patients in our country suffer from. The study has brought out that the patients’ need for palliation is probably being assessed by most nurses correctly; however, the understanding of pain pathway-specific medication and of the futility of invasive resuscitation is not been understood well by nurses. Ronaldson et al, Proctor et al in their study showed that most nurses have inadequate knowledge of pain management, use of morphine, knowledge of resuscitation and psycho spiritual well-being of patients [9,10]. Possibly, the paucity of instruction in palliative care outside oncology centres explains this deficit. Nurses graduating from non-oncology institutes are not much aware about palliative care. Knowledge of palliative care improves over a period of time with experience of working in an institute providing palliative care . Such experience is insufficient as shown in our study and underscores the need of a formal palliative care training to help deliver state of the art services.
Some misconceptions are brought out in our study. Most respondents know the importance of pain and its severity (PCKQ-B, question number 7-8), but were unable to access the need of pain medication and use of morphine, as well as the common side -effects associated with the pain medications and morphine (PCKQ-B, question number 9 -14). This is consistent with the other studies done in Canada by Brazil et al. and in Ethiopia by Kassa et al . The probable cause is the non-availability of morphine in most of the institutes due to strict regulatory control over stocking, dispensing and prescription of morphine, Paucity of hospices and of designated training programs or continuous medical education activities for the nursing staff, also contribute to this gap in care delivery. Knowledge of oxygen supplementation and intubation is not adequate (PCKQ-B, question number 15 and 17) irrespective of the years of nursing experience. This may be because of lack of nuanced understanding of the use of oxygen and intubation in advanced cancer, and of the futility of such efforts at the end of life.
There is an association between the years of experience and the work area of staff nurses with self- report questionnaire; the knowledge increases with experience and nurses with less experience lack the basic knowledge, however, the proportion with satisfactory knowledge is still low .
Basic knowledge, communication of prognosis and bereavement care are other domains with few nurses having adequate understanding. The median age for most cancers in India is a decade earlier than that in the western world. Consequently, the lifetime burden of symptoms: emotional, social and spiritual is higher, necessitating holistic palliative care nursing.
The high burden of symptoms in our country also mandates that the transfers to intensive care of patients with advanced cancer be minimised or avoided, so that triage of services directed at palliation of symptoms is performed well by nurses, like in the developed world. The key words in this endeavour remain: modify “knowledge, attitudes and practices.”
In conclusion, the study, one of the early exercises in assessment, shows that nurses’ knowledge about palliative care is inadequate. It highlights the need of training of nurses in this sub specialty. Further studies can be conducted to understand the challenges encountered in capacity building and delivering effective and sustainable palliative care.
The authors gratefully acknowledge the participation of staff nurses at the Sri Aurobindo Institute of Medical Sciences Indore (Madhya Pradesh). They further acknowledge the support and co-operation of the administrative authorities of the institution.
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