Introduction
Palliative care is an approach that focuses on improving the quality of life of patients and their families facing problems related to life-threatening diseases. The World Health Organisation emphasises that palliative care is an important part of integrated, person-centred healthcare and that it is a global ethical responsibility to relieve serious suffering related to physical, psychological, social or spiritual health [1]. In this integrated care, healthcare personnel in the palliative care team such as doctors, nurses, psychologists, social workers and dietitians take an active role [2]. Palliative care services are needed by patients battling life-threatening chronic illnesses, but cancer patients are among those who most frequently seek palliative care. Acceptance of the disease, informing about the disease and its complications [3, 4] and supporting patient autonomy are a part of palliative care services. De Panfilis et al. [4] emphasise that respect for patient autono- my and the individual, the concept of patient dignity, the importance of knowing the truth, the concept of quality of life, and the importance of the person’s emotional process are an integral part of the palliative care approach. Palliative care is an important part of nursing care [5], and having adequate competence is essential for the quality of care [6, 7].
In the literature, it is stated that the lack of knowledge and skills in palliative care among healthcare professionals [2, 5, 7] and difficulties in dealing with ethical problems are one of the barriers to quality care. It is important for nurses to cope well with the moral conflicts they experience in palliative care practice in order to direct the process for the benefit of the patient [8]. De Panfilis et al. [4] emphasised that an open and honest communication that fully respects the wishes and preferences of patients about the diagnosis and prognosis of a terminal illness positively affects patients; trust between the patient and healthcare professional, sense of responsibility, protection of patient individuality, quality of healthcare professional relationship and interaction are ethically important.
Palliative care is one of the areas where nurses experience the most ethical dilemmas and have difficulty in the care process. Especially in palliative care, it is very difficult to bring up and discuss the processes related to the end of life and death process. In a study conducted with nurses providing palliative care, among the difficulties experienced in care; nurses’ difficulty in understanding the reactions of patients to the death process, communication problems, giving bad news, and not informing patient relatives sufficiently [9]. Palliative care nurses have difficulties in emotional, ethical, and care issues when working with oncology patients [5, 6, 10]. The aim of this study is to determine the difficulties and ethical problems experienced by nurses working in the field of oncology in palliative care.
Material and methods
In the study, data were collected from 69 nurses who met the inclusion and exclusion criteria between February and May 2023.
Research questions
1. What is the level of difficulty experienced by oncology nurses in palliative care?
2. What are the ethical problems experienced by oncology nurses in the palliative care process?
3. What are the personal factors affecting oncology nurses to provide palliative care?
Type of the study
This study is a cross-sectional study.
Place of the research
The study was conducted in Mersin University Faculty of Medicine oncology hospital. All nurses working in Mersin University oncology hospital were included in the study.
Study population
The study population consisted of 86 nurses working in Mersin University oncology hospital.
Sample of the research
The sample of the study consisted of 69 oncology nurses working in Mersin University oncology hospital, who were not on leave or on being on leave due to illness and who agreed to participate in the study. In the sample, 80% of oncology nurses were reached.
Data collection tools
Nurses’ descriptive characteristics information form: this form consists of a total of 11 questions developed in line with the literature, including personal characteristics of the participants such as gender, age, education level, years of experience in oncology and questions about palliative care [2, 11, 12].
Palliative Care Difficulties Scale (PCDS): the Turkish validity and reliability study of the scale developed by Nakazawa et al. was conducted by Akdeniz Kudubeş et al. [2]. It consists of 15 items describing PCDS. In the scale prepared according to the five-point Likert system, it is answered as ‘1 – never, 5 – very much’. A minimum of 15 and a maximum of 75 points are obtained from the scale. The scale consists of five sub-dimensions: multidisciplinary communication, communication with the patient and family, specialist support, symptom management and communication coordination. A minimum of 3 and a maximum of 15 points are obtained from each sub-dimension of the scale. The higher the score obtained from the scale, the greater the difficulties experienced by palliative caregivers. The Cronbach coefficient of the scale was found to be 0.81 [2]. In our study, the Cronbach coefficient of the scale was 0.85.
Application of data collection forms
The data were collected by the researchers through the data collection form by including nurses working in Mersin University oncology hospital who volunteered to participate in the study. It took approximately 10 minutes to collect the data from the participants.
The ethics aspect of the research
Before data were collected, written informed consent was obtained from the participants after the purpose of the research in accordance with the Helsinki Declaration was explained. Also, participants were informed about the fact that their participation is voluntary and their answers will be kept confidential and evaluated only as scientific data.
Statistical analysis
Statistical analyses were performed using SPSS (IBM SPSS Statistics 27) package programme. Frequency tables and descriptive statistics were used to interpret the findings. In accordance with nonparametric methods, the Mann-Whitney U test (Z-table value) was used to compare the measurement values of two independent groups and the Kruskal-Wallis H test (2-table value) was used to compare the measurement values of three or more independent groups. Bonferroni correction was applied for the pairwise comparisons of variables with significant differences for three or more groups. Spearman’s correlation coefficient was used to analyse the relationship between two quantitative variables that do not have normal distribution.
Results
The mean age of the participants was 32.93 ±6.79 years and 42.02% (n = 29) were under 30 years of age. It was determined that 78.3% (n = 54) of the participants were female, 66.7% (n = 46) had been working in oncology for 2–5 years, and 33 (47.8%) had been working in the profession for 10 years or more. It was determined that 79.7% (n = 55) of the participants had undergraduate degrees, 65.2% (n = 45) did not receive training on palliative care approach, 87.0% (n = 60) did not experience ethical problems in palliative care and 50.7% (n = 35) thought that they did not provide adequate palliative care to their patients.
The participants associated the concept of palliative care with ‘care and self-care’ (21.6%) and the answers included home care, elderly care and pre- terminal patient care. ‘Death process and preparation’ (17.4%) and ‘compassion and conscience’ (14.5%), ‘improving patient quality of life’ (11.6%), ‘patient wounds’ (2.9%), ‘supporting patients and their relatives’ (2.9%) and ‘reducing patient pain’ (2.9%) are among the first answers that come to mind when the concept of palliative care is mentioned. The expressions ‘activities of daily living’ (2.9%), ‘supportive treatment’ (1.4%) and ‘love’ (1.4%) in the answers given by the participants also emphasise the holistic and humanitarian aspect of care. 20.5% of the participants did not answer the question.
The nurses stated that the biggest difficulty in the palliative care process was ‘communication’ (17.4%). This was followed by ‘pressure sores’ (11.6%) and ‘difficulty in empathising’ (10.1%). ‘Problems related to the psychological status of the patient’ (7.6%), ‘difficulties related to the family (lack of information, lack of acceptance, hopelessness, refusal of education) and insufficient materials, lack of time and equipment’ (6.2%) were among other frequently mentioned problems. In addition, ‘feeding the patient’ (5.8%) and ‘giving personal care’ (4.3%) were found to be among the important difficulties encountered by nurses. ‘The dying process’ and ‘explaining the purpose of palliative care’ (2.9%) were mentioned less frequently, while the rate of those who stated that they did not experience any difficulties was 2.9%. 25% of the participants did not answer the question.
When the mean and standard deviation values of the sub-dimensions of the PCDS were analysed in this study, the mean score of ‘multidisciplinary communication’ was 8.64 ±2.67 (min – 3.0; max – 15.0). The mean score of the ‘communication with the patient and family’ sub-dimension was 9.24 ±2.45 (min – 3.0; max – 15.0), and this value was calculated as 8.61 ±2.51 (min – 3.0; max – 15.0) in the ‘specialist support’ dimension. The mean score of the ‘symptom management’ sub-dimension was 9.82 ±2.67 (min – 4.0; max – 15.0), and this value was 9.14 ±2.51 (min – 3.0; max – 15.0) in the ‘communication coordination’ dimension. The mean score of the PCDS was 45.46 ±8.44 (min – 25.0, max – 66.0).
A statistically significant difference was found in the ‘communication with the patient and family’ subscale scores according to age groups (2 = 10,667; p = 0.014). As a result of Bonferroni corrected pairwise comparisons to determine which group the significant difference originated from, a significant difference was found between those in the 30–34 age group and those aged 40 years and older, and it was determined that the ‘communication with the patient and family’ sub-dimension scores of those aged 40 years and older were significantly higher than those in the 30–34 age group (Table 1).
A statistically significant difference was found in terms of PCDS total scores according to age groups (F = 4076; p = 0.010). As a result of pairwise comparisons made by considering the homogeneity of variances to determine which group the significant difference originated from, a significant difference was found between those in the 30–34 age group and those in the ≥ 40 age group. The palliative care difficulties scale scores of those in the ≥ 40 age group were significantly higher than those in the 30–34 age group (Table 1).
A statistically significant difference was found in terms of multidisciplinary communication scores (MCS) according to the years of experience in oncology (2 = 7968; p = 0.019). As a result of Bonferroni corrected pairwise comparisons made to determine which group the significant difference originated from, a significant difference was found between those working in oncology for 2–5 years and those working for more than 5 years. It was determined that the MCS of those working in oncology for 2–5 years were significantly higher than those working for more than 5 years (Table 1).
A statistically significant difference was found in terms of MCS according to the education level (2 = 8043; p = 0.018). As a result of Bonferroni corrected pairwise comparisons made to determine which group the significant difference originated from, a significant difference was found between those with a bachelor’s degree and those with a postgraduate degree. It was determined that the MCS of those with bachelor’s degree were significantly higher than those with postgraduate degree (Table 1).
Participants’ gender (t = 1499; p = 0.139), years of experience in oncology (F = 1122; p = 0.332), receiving palliative care training (Z = –1,539; p = 0.124), experiencing ethical problems in palliative care (t = 0.625; p = 0.534), providing adequate palliative care (t = –0.876; p = 0.384) and the total and sub- dimensions of the PCDS (p > 0.05).
A positive, weak and statistically significant relationship was found between multidisciplinary communication and communication with the patient and family (r = 0.400; p < 0.001) and symptom management (0.397 < 0.001) scores (p < 0.05). As multidisciplinary communication increases, communication with the patient and family and symptom management scores increase (Table 2).
A positive, weak and statistically significant relationship was found between communication coordination scores and specialist support (r = 0.387; p = 0.001) and symptom management (r = 0.328; p = 0.006) (p < 0.05). As the specialist support and symptom management increase, communication coordination scores increase (Table 2).
There was a positive, weak and statistically significant relationship between multidisciplinary communication, communication with the patient and family, specialist support, symptom management and communication coordination scores and PCDS total score (p < 0.05). As multidisciplinary communication, communication with the patient and family, specialist support, symptom management and communication coordination increased, the total score of PCDS increased (Table 2).
The distribution of the items with three highest averages and three lowest averages given to the PCDS is given in Table 3.
The top three highest statements given to the palliative care difficulties scale are: ‘It is difficult to talk to the patient after giving bad news.’ (3.81 ±0.90); ‘There is a lack of knowledge regarding the reduction of cancer pain.’ (3.41 ±1.03); ‘Necessary training on palliative care is not provided.’ (3.29 ±1.00). The top three lowest statements in the PCDS are: ‘It is difficult to respond when a family expresses anxiety.’ (2.70 ±1.02); ‘The method of evaluating symptoms is not consistent among teams with multiple professions.’ (2.72 ±0.98); ‘It is difficult to respond when a patient expresses anxiety.’ (2.74 ±1.04) (Table 3).
Discussion
In our study, more than half of the participants stated that they did not receive training on palliative care, more than three-quarters stated that they did not experience ethical problems in the palliative care process, and more than half stated that they thought they did not provide adequate palliative care. In contrast to our study, nurses stated in a qualitative study that they experienced the most ethical dilemma in case the patient refused treatment, which negatively affected the care process [10]. In studies, nurses stated that having greater palliative care knowledge [6, 13–17] and professional experience [14, 18] contribute to feeling more competent during care. In studies, it is emphasised that oncology nurses [5, 14] and palliative care nurses [10, 19] have insufficient knowledge about palliative care. In studies conducted with nurses, it was stated that they need training on pain/symptom management [14], ethical and legal issues, spiritual care, communication between team members [6, 13], psychosocial care, care of dying patients, and carer support [5].
In a study conducted in Spain, it was stated that the lack of sufficient knowledge of healthcare professionals about palliative care would harm the patient and reduce the quality of care [20]. Ethical problems may arise during pain control in palliative care, when patients and their relatives request aggressive treatment [16], palliative care contributes to the protection of patient dignity [21].
In our study, the concept of palliative care was mostly associated with care and/or self-care, preparation for the dying process, compassion and conscience, and patient quality of life. A low proportion of participants defined palliative care as supportive treatment, reducing the patient’s pain, and supporting the patient and relatives. In one study, healthcare professionals associated palliative care with the moment when all curative options are exhausted or the prognosis is clearly limited [22]. In a study in Turkey, nurses defined palliative care as all kinds of care given to patients and elderly individuals in their last periods [19]. In another study, it was stated that nurses perceived palliative care as moving away from the possibility of recovery, alternative care pathway, and alleviating the suffering of the patient and family [16].
Nurses stated that the greatest difficulties in the palliative care were communication, pressure sores, difficulty in empathising, problems related to the psychological state of the patient, difficulties related to the family (lack of information, lack of acceptance, hopelessness, refusal of education) and lack of time and equipment. It was found that nurses had less difficulty in providing daily personal care and feeding the patient. In qualitative studies conducted in Turkey, nurses emphasised that lack of personnel, communication problems with patients and cultural differences, difficulties in ensuring the participation of the family in the care process, and positioning the patient cause difficulties in palliative care [10, 23]. In a study, nurses stated that they experienced the most difficulties in palliative care in symptom management, especially in pain management [15].
Sociodemographic variables and Palliative Care Difficulties Scale
In our study, the mean score of the PCDS of nurses was 45.46 ±8.44. The maximum score that can be obtained from the scale is 75 and it can be said that nurses have moderate difficulty in palliative care. In studies conducted with palliative care nurses using the same scale as our study, it was found that nurses experienced moderate palliative care difficulties [24, 25]. In a study conducted in a cancer hospital in China, nurses’ perception of palliative care competence was found to be moderate [6]. In the study conducted in Turkey, the palliative care knowledge level of palliative care nurses was found to be moderate [26].
In our study, it was found that individuals aged 40 and above experience difficulties in communication with patients and families, as well as in palliative care in general. Nurses who have worked in oncology for five years or more were found to have fewer difficulties in multidisciplinary communication. In our study, four-fifths of the participants had bachelor’s degree, and their MCS were significantly higher compared to those with postgraduate degrees. Studies conducted with nurses have shown that receiving palliative care training, years of experience, level of education [5, 18, 27, 28], cultural characteristics [17, 29], and age are factors affecting nurses’ knowledge of palliative care and the level of difficulty experienced in providing care [5, 27]. In a study conducted in China with 1833 nurses, it was found that nurses with higher education levels had greater knowledge about care and that this positively influenced their attitudes toward palliative care [18]. In a study conducted in Turkey, it was determined that nurses’ education levels did not affect their knowledge levels, but did influence their perception of care behaviours [26].
Analysis of responses to the PCDS revealed that participants most frequently reported difficulty in continuing conversations after delivering bad news to patients. Following this, participants indicated a lack of knowledge regarding the management of cancer-related pain and insufficient training in symptom relief. A qualitative study similarly found that nurses experienced difficulty in delivering bad news during end-of-life care [9]. Other studies have shown that healthcare professionals often avoid discussions about end-of-life care and death with patients and their families [17, 29]. In this study, palliative care nurses reported experiencing the most difficulty in communicating with patients and families [16, 25], as well as in alleviating patients’ symptoms [25]. Another study emphasised that relieving the pain, suffering, and distress of palliative care patients is of great importance to healthcare professionals [30]. De Panfilis et al. [4] noted that the ethics of caring focuses on values such as knowing how to communicate truthfully, understanding the meaning of suffering, responding to existential questions, and establishing effective communication with patients. Karakaş [31] emphasised that delivering bad news is a communication skill in itself, and that it is essential to communicate in a manner that promotes the patient’s acceptance of their condition and supports treatment adherence.
It was also found that participants experienced the least difficulty in responding to family members’ concerns and found it easier to communicate with families. However, they reported greater difficulty in responding to patients’ expressions of anxiety compared to those of family members. Furthermore, participants indicated an overall adoption of a multidisciplinary approach in palliative care. A similar finding was reported in a study with palliative care nurses [14]. When patients and families are not adequately informed about the goals of palliative care by team members other than the nurse, the nurse’s care burden and difficulties increase [9]. In another study, nurses stated that they shared the challenges of palliative care with team members and developed solutions collaboratively [10]. Contrary to our findings, a study conducted with healthcare professionals found that more than a half experienced significant difficulties in maintaining communication among members of the palliative care team [30]. Several studies have reported that many nurses exhibit negative attitudes toward communication with patients and families regarding diagnosis, death, and end-of-life care [16, 17].
Correlation between subdimensions of the Palliative Care Difficulties Scale
Our study found that as difficulties in multidisciplinary communication increased, challenges in communication with families and symptom management also increased. Additionally, difficulties in obtaining expert support and managing symptoms appeared to contribute to increased challenges in communication among patients, physicians, and institutions. Examination of the relationships between subdimensions of the scale indicated that difficulties in one area negatively affected other areas, as well as palliative care overall. Lind et al. [16] reported that when physicians provided patients and families with clear and understandable information about treatment and care processes in palliative care, the care process became more transparent, which positively influenced care quality.
The qualitative study by Üzen Cura and Ateş [9] found that insufficient information provided to palliative care patients by other team members contributed to nurses experiencing greater difficulties in care delivery. Similarly, a study in China reported that ineffective communication with other healthcare professionals was a significant factor contributing to difficulties faced by nurses in palliative care [6]. A longitudinal survey conducted in Japan, which assessed nurses’ knowledge, attitudes, and difficulties regarding palliative care over a seven-year period, found that improvements in specialist support and communication among multidisciplinary teams positively impacted care [27]. Recognizing ethical principles, managing ethical dilemmas [4, 28], demonstrating empathy [32], and prioritizing communication during the treatment and care of palliative care patients are essential for improving care quality [4]. Communication in palliative care has been emphasised as a prerequisite for person-centred and safe care [16].
Limitations
The findings of this study are limited to the perspectives of nurses working in a single oncology hospital. Moreover, the use of only quantitative methods may have restricted the depth and comprehensiveness of the findings.
Conclusions
This study found that nurses working in an oncology hospital experienced a moderate level of difficulty while providing care to palliative care patients. It was observed that nurses most frequently associated the concept of palliative care with caregiving, preparation for the dying process, compassion, and the patient’s quality of life. More than half of the participants reported not having received formal education in palliative care. They expressed challenges particularly in communication and establishing empathy, addressing patients’ psychological issues, and coping with difficulties related to family members (e.g., lack of knowledge, denial, hopelessness, rejection of education). Additionally, issues related to time constraints and equipment shortages were identified. It is crucial to develop training programs aimed at empowering nurses, especially those working in palliative care units, to ensure they are equipped with the necessary competencies.
Disclosures
1. Institutional review board statement: This study was approved by the Ethics Committee of the Akdeniz University (approval decision no: KAEK-632, dated: 26.10.2022). Permission was obtained from the hospital administration (no: 2194596, dated: 24.11.2022).
2. Assistance with the article: None.
3. Financial support and sponsorship: None.
4. Conflicts of interest: None.
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