A descriptive study to assess the knowledge, attitude, practices, perceived barriers, and support regarding palliative care and end-of-life care among critical care nurses of tertiary care medical institute
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/IJPC.IJPC_227_19
Source of Support: None, Conflict of Interest: None
Keywords: Attitude, barriers, critical care nurses, end-of-life care, knowledge, palliative care, practices
According to the World Health Organization, “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems; physical, psychosocial and spiritual.” End-of-life care (EOLC) may be defined as “the active, total care of patients who are unresponsive to curative treatment.” There is a working culture among health-care workers due to which center of interest is on cure and purposefully or accidentally, the vast majority of them maintain a distance from the dying patient. The role of nurses in the provision of palliative and EOLC is determined by their interest, willingness, attitude, and rapport with the patient and family members.
The role of critical care nurses in overall management of critically ill patients is paramount and irrefutable. The involvement of nurses in critical decision-making along with adequate training in palliative and EOLC needs to be emphasized.,,, However, there are not sufficient data from critical care nursing personnel with regard to the understanding of palliative and EOLC.
The objectives of the study were to assess the knowledge, attitude, practice, perceived barriers, and support regarding palliative and EOLC among critical care nurses. This will be helpful in understanding a portion of the sufficiency as well as deficiencies among critical care nurses in regard to various aspects of palliative and EOLC. The secondary objective of this study was to determine the association of knowledge, attitude, and practices regarding palliative and EOLC with the selected variables.
This descriptive cross-sectional study was carried out at critical care units of a tertiary care teaching Institute after institutional ethical committee approval vide Ref. No. IECPG-43/28.02.18. The critical care nurses, who were registered nurses and working in critical care units for at least 1 year, were enrolled for the study and written informed consent was obtained to participate in the study.
Data collection tools
Data related to demography and study parameters were assessed and recorded using the following tools [Appendix]:
It consisted of demographic datasheet.
Self-administered knowledge assessment questionnaire: It was developed by the researcher based on a review of the literature and validated by experts for its content, face, construct, and criteria (r = 0.88). It included 20 multiple choice questions with four options each. The areas covered were philosophy and meaning of palliative and EOLC, patient assessment, management of airway, breathing, pain, constipation, delirium, oral health, death, and loss. Each question was scored, as 1 score will be given for correct answer and 0 score for incorrect/unanswered answer. Knowledge was categorized as per the review of literature as poor <10 scores (<50% of total score), satisfactory 10–13 scores (50%–65% of total score), good 14–17 scores (66%–85% of total score), and excellent >17 scores (>85% of total score).,,,,
Frommelt Attitude toward Care of the Dying Scale for attitude is 30-item standardized tool with 5-point Likert scale to indicate respondents' attitudes toward caring for dying patients. It includes 15 positively and 15 negatively worded statements with response options: strongly disagree (1), disagree (2), uncertain (3), agree (4), and strongly agree (5). Possible scores ranged from 30 to 150. Attitude scores were categorized, as per the review of literature, as favorable ≥90 scores (>60% of total score) and unfavorable <90 scores (≤60% of total score).,,,,
Self-reported practice checklist: It was developed by the researcher based on a review of the literature and validated by experts for its content, face, construct, and criteria (r = 0.94). It included 10 items with subitems (with a total of 27 items) and scored as 0 for no and 1 for yes. Maximum scores were 27. The practice was categorized by the researcher as per the review of literature, as satisfactory >20 marks (>75% of total score) and poor ≤20 marks (≤75% of total score).,,,,
It consisted of self-administered scale for perceived barriers and open-ended questionnaire for perceived support. This is a 3-point Likert scale with response options: not at all, some extent, and large extent. It contained four main items – environmental factor, family related factors, knowledge and skill, and treatment policy with subitems. Two open-ended (optional) questions were to measure perceived support for critical care nurses [Appendix].
The various data shall be summarized and correlation shall be statistically sought for various demographic parameters and study parameters with regard to attitude knowledge and practice.
The sample size was calculated based on data obtained from a pilot study among 40 nurses. Based on the estimated prevalence of knowledge as 50%, with margin of error as 5% and confidence interval 95%, 386 critical care nurses were enrolled for the study. Collected data were coded and entered into Microsoft Excel 2010 spreadsheet and checked for errors. SPSS (IBM Corp. Released 2016. IBM SPSS Statistics for Windows, Version 24.0. Armonk, NY: IBM Corp.) was used for descriptive and inferential statistical analysis (independent t-test [for two groups, i.e., gender, marital status, and additional qualification pertaining to palliative care and EOLC] and ANOVA [for more than two groups, i.e., age, qualification, and experience in critical care units and working critical care units]) to find frequencies, percentage, and mean of variables under the study. The level of significance was set up as P ≤ 0.05.
Of 400 nurses, 386 critical care nurses were recruited for the study and were analyzed for the outcome parameters, as the rest did not meet the inclusion/exclusion criteria [Figure 1].
The demographic profile revealed that majority nurses were females, married, graduates, and >2 years of experience in critical care units [Table 1].
Knowledge, attitude, and practice scores regarding palliative and end-of-life care (n = 386)
The mean knowledge score was 9.83 ± 2.50 where 51.6% of the nurses had satisfactory knowledge, 41.4% had poor knowledge, and 7% had good knowledge regarding palliative and EOLC. The mean attitude score of nurses was 104.91 ± 13.04 where 88.1% of the nurses had a favorable attitude and 11.9% of the nurses had an unfavorable attitude toward palliative and EOLC. The mean practice score of nurses was 17.61 ± 4.36, with 63.5% of the nurses having poor practices, whereas only 36.5% of the nurses had satisfactory practices regarding palliative and EOLC.
[Table 2] shows that various perceived barriers were reported by critical nurses. Out of that, minimal (4.9%) number of nurses reported that workload is not a barrier in providing palliative and EOLC. Family members do not accept patient's poor prognosis (88.6%), difference in physician's opinion about treatment (84.7%), nurses being continually called for information (83.6%), and family members do not understand the meaning of lifesaving (82.6%) are some of the barriers reported by critical care nurses [Table 2] and [Table 3].
The association among the studied parameters was analyzed [Table 4]. It revealed that the younger age group had a statistically higher mean attitude score. Female nurses had more mean knowledge score than the male nurses. The mean knowledge as well as the practice score of nurses who had additional training was statistically higher than those who had not additional training. Postgraduate nurses had statistically higher practice as well as attitude mean scores than other lower qualification group. Nurses working in neurology/neurosurgical critical care units had statistically higher mean attitude score.
The correlation of the age of nurses with their attitude, knowledge, and practice was −0.13, −0.05, and 0.03, respectively (P = 0.01, 0.32, and 0.50, respectively). There was a significant negative correlation of age of nurses to their attitude regarding palliative and EOLC. The correlation of the practice of critical care nurses with their knowledge and attitude was 0.14 and 0.34, respectively (P = 0.01 and 0.001, respectively). The practice of critical care nurses is significantly correlated to the knowledge and attitude of critical care nurses regarding palliative and EOLC.
We observed from our study that 41.4% of the nurses had a poor knowledge with regard to palliative care and EOLC with many perceived barriers. Furthermore, the knowledge score of female nurses regarding palliative and EOLC is significantly higher than male nurses. In the present study, a significantly higher knowledge and attitude score was found among nurses who had additional training regarding palliative and EOLC.
Similar findings have been reported by other studies as well., The new findings from our study revealed that there is an utter need of higher structured training for nurses that would not only increase knowledge but also change attitude and practice pattern with regard to palliative care and EOLC. Not only higher education but also additional training like in-service training program for nurses would be helpful for better provision of palliative care and EOLC. Hence, higher education among nurses needs to be encouraged and supported. Nurses need to be timely motivated and reinforced to maintain the continuity of best care.
It appears that neurological/neurosurgical critical care units had more chronic debilitated patient in views of nature of diseases, so the understanding of palliative and EOLC appears to be better among critical care nurses in these specialties. An appropriate protocol may be developed and made available to nursing staff based on findings of the current study, and the outcome from these may be translated across all types of critical care units.
In the present study, one of the most reported perceived barriers by critical care nurse was their workload (95.1%), which is comparable to the study findings of Attia et al. where all the nurses (100%) reported workload as a barrier in providing palliative and EOLC. This needs a policy consideration to include palliative care nurses as a part of routine care for patients with chronic diseases, and the nurses should be involved in treatment planning as well. New nursing post can be created as nurse counselor, palliative nurse, etc. Other barriers reported by nurses included the absence of understanding lifesaving terminology (82.6%) and denial for acceptance of poor prognosis among family members (88.6%). This indicates the need of counseling for family members and involvement of nurses as well. Majority of nurses reported that availability of good communication between health-care team (77%), provision of in-service training for nurses (68%), and involvement of family members in patient's care (81%) could support them in rendering effective palliative and EOLC.
The strength of the study lies in the adequacy of sample size, selecting the participants from the critical care units with different specialties and using a standardized tool for assessing the attitude of critical care nurses toward palliative and EOLC.
We conclude that the role of nurses for the provision of palliative and EOLC in critically ill patients is paramount. However, there appears to be a significant gap between knowledge and practices of critical care nurses related to palliative and EOLC. The barriers perceived by critical care nurses need to be addressed with administrative and clinical policies for optimal delivery palliative and EOLC. The appropriate training, policy change, and involvement of nurses in treatment planning would help in avoiding many of the barriers in the provision of effective palliative and EOLC.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
Tool I: Sociodemographic datasheet
1. Age(completed years)________________
3. Educational qualification
4. Marital status
5. Years of experience in critical care _____________
6. Any previous training in palliative and end of life care,
6.1. If Yes, mention details of training
Last training month/year ______________
Place of training_______________
Duration of training____________
7. Presently working ward/ICU _________________
Tool II: Knowledge assessment questionnaire for nurses
Instructions – These are multiple choice questions to evaluate your knowledge on palliative and end-of-life care. Read all the sentences carefully and encircle the correct option. All your answers will be treated as strictly confidential. 1 score will be given for correct answer and 0 score for incorrect answer.
1. Palliative care is defined as
2. Hospice care is given
3. Palliative care should begin
4. Deterioration of physical function towards the end of life is
5. What do you mean by ESAS
6. After patient admission, APACHE II score is calculated
7. Lowest and highest score for Glasgow Coma Scale (GCS) are
8. A range of pharmacological interventions for breathlessness include
9. Which intervention is not recommended in the management of respiratory tract secretions at the end of life?
10. Adjuvant analgesic in palliative and end of life care means a drug whose
11. Which of the following is weaker opioid
12. WHO analgesic ladder for moderate to severe pain includes
13. All are common anticholinergic adverse effects EXCEPT
14. Which of the following are sign of opioid toxicity
15. Oral candidiasis needs treatment because
16. The most appropriate first line treatment for the management of constipation is
17. Patient who are opiate dependent will
18. Which of following is a clinical feature of delirium
19. Which form of euthanasia is considered to be illegal in India
20. The period of acceptance of loss and grief during which the person learns to deal with loss is known as
[Table 1], [Table 2], [Table 3], [Table 4]