Ethical issues in palliative care: nursing and quality of life

A cross-sectional study design was employed to evaluate the ethical challenges encountered by nurses in palliative care settings. This approach allowed for the examination of current issues and the assessment of the prevalence of ethical dilemmas and their impact on quality of life and patient rights. The design enabled the collection of quantitative data at a single point in time, thereby revealing the frequency with which nurses encounter situations that may compromise patient rights, such as conflicts between patient autonomy and medical recommendations. By surveying a representative sample of nurses, the study can identify patterns in ethical concerns and assess correlations between reported challenges and indicators of patient rights. This will ensure that patient rights are prioritized in nursing practice.

The study was conducted in the Oncology Department and the Pain Clinic at Specialized Hospital in Egypt. The objective was to gather data specifically related to pain management and palliative care practices. This inclusion was intended to enrich the study by incorporating diverse perspectives on ethical challenges faced in various contexts of patient care. The data collection itself was strictly conducted within the hospital environment.

To ascertain the requisite sample size, the study utilized the G*Power software, employing the following parameters: A statistical power of 0.80, a significance level of 0.05, and an effect size of 0.5 (Cohen’s d) were selected, indicating a medium effect size. By the aforementioned criteria, a total sample size of 85 nurses from the Pain Clinic and Oncology Department was deemed sufficient. A stratified random sampling technique was employed to ensure adequate representation from both departments, with each department considered a distinct stratum, thus allowing for proportional selection. Recruitment efforts were maintained until the target sample size of 85 participants was reached, which took approximately four weeks. This approach ensured a comprehensive representation of the nursing population involved in pain management and palliative care, thereby enhancing the study’s validity. The ethical considerations were rigorously adhered to throughout the recruitment process, ensuring that all participants provided informed consent and that their anonymity was preserved.

The study participants were registered nurses with a minimum of six months’ experience working in either the oncology or pain clinic departments at Specialized Hospital. In order to be eligible to participate in the study, the nurses were required to provide informed consent. The rationale for selecting nurses with a minimum of six months of experience was to ensure that they had sufficient exposure to pain management and palliative care techniques. The study did not include nurses who did not meet the aforementioned criteria. In particular, nurses with less than six months of experience, those not directly involved in pain management or palliative care, and those who either declined to participate or failed to provide informed consent were excluded from the study.

Following the acquisition of ethical approval from the hospital’s ethics committee, the hiring process was initiated. An invitation was extended via email and department announcements, and the hospital’s administrative records were consulted to identify the qualified nurses. The invitation included a detailed explanation of the study’s objectives and the significance of its findings. The nurses were offered the opportunity to participate in the study anonymously, and their decision to do so was entirely at their discretion. In order to minimise disruption to their clinical duties, the surveys were distributed electronically. The survey was distributed to participants, who were given a four-week period to complete it. To encourage completion, participants were sent reminders. The study was conducted in accordance with the ethical guidelines that ensure the informed consent of participants and the confidentiality of their data.

The age, gender, years of experience, years of education, and work setting were among the demographic data categories. The demographic data collection tool was created by drawing on prior research to guarantee its applicability and coherence with related investigations [13‐20, 48‐53].

The Ethical Issues Scale (EIS) was developed by Fry and Mary Duffy [35] as a means of assessing ethical issues in nursing practice, with a particular focus on palliative care. The objective of the scale is to identify and evaluate ethical dilemmas pertaining to patient care, end-of-life decisions, and human rights, thereby providing insights into the ethical challenges encountered by healthcare professionals. The scale is based on a 32-item instrument from a 1994 study involving nurses from Maryland, which was developed from a literature review and focus group interviews with practising nurses [36].

The EIS is comprised of three components. The scale comprises three components: End-of-Life Treatments (13 items), Patient Care (14 items), and Human Rights (5 items), for a total of 32 items. Each component addresses a specific ethical concern. For example, the End-of-Life Treatments component includes items on resuscitation decisions and advance directives, while the Patient Care component covers informed consent and pain management. Each item was assigned a value on a four-point scale. The response options were 0 = never, 1 = seldom, 2 = sometimes, and 3 = frequently. The mean scores for each component are calculated, with higher scores indicating greater concern about ethical issues. In general, researchers interpret mean scores within specific ranges. A score of 1 to 2.0 is indicative of low concern about ethical issues, while a score of 2.1 to 3.4 indicates moderate concern, and a score of 3.5 to 5.0 indicates high concern. A higher mean score indicates a greater concern with regard to ethical issues in nursing practice, particularly in the context of palliative care. The EIS is an invaluable instrument for researchers and practitioners alike, facilitating comprehension of the ethical nuances inherent to nursing practice and fostering ethical consciousness within healthcare environments.

The Nursing Quality of Life Scale (NQOLS) is a comprehensive 28-item self-report instrument developed by the authors based on Sili et al. [37], with the objective of evaluating the quality of life among nurses across four key dimensions: physical, emotional, working, and social well-being. Each dimension comprises a series of items that enable nurses to engage in introspective reflection on their experiences and challenges within the context of their professional and personal lives. The NQOLS utilises a scoring system whereby respondents indicate their level of agreement with each item on a Likert scale, typically ranging from 1 (strongly disagree) to 5 (strongly agree). The total score is calculated by summing the ratings across all items, with higher scores indicating an improved quality of life. Cut-off points for the NQOLS may vary depending on the specific population under investigation. However, a total score of 100 or above is frequently proposed as an indicator of a satisfactory quality of life for nurses in palliative care settings. The psychometric properties of this tool have been rigorously tested, thereby establishing its validity and reliability. It is therefore a valuable resource for assessing the well-being of nurses and identifying areas for improvement in their work environments.

The Patient Rights Tool was developed by the authors based on the Patient Rights Questionnaire (PRQ) created by Ferrell and Coyle [38]. This tool is designed to assess nurses’ understanding, attitudes and practices regarding patient rights in palliative care settings. The principal objective of the tool is to identify and evaluate adherence to the fundamental principles of patient rights, with the aim of enhancing the quality of care provided to patients at the end of life. By focusing on the nuances of palliative care, this tool fosters a culture of respect, dignity, and empowerment for both patients and healthcare providers.

The tool is comprised of 12 components. The Autonomy and Informed Consent component assesses the nurses’ comprehension of the principles of informed decision-making. The section on Privacy and Confidentiality assesses the commitment of the nursing staff to the protection of patient information. The Dignity and Respect component assesses the dedication of healthcare professionals to treating patients with dignity. The component entitled “Right to Pain Management and Symptom Relief” assesses the extent of knowledge regarding effective pain relief strategies. The Right to Information and Communication component assesses the clarity and accessibility of information provided to patients. The domain of End-of-Life Care Preferences is concerned with the respectful consideration of patients’ wishes regarding their care.

Furthermore, the Support for Family and Loved Ones domain assesses the degree of involvement of family members in the decision-making process regarding the care of the patient. The Patient Advocacy and Empowerment programme assesses attitudes towards the advocacy of patients’ rights. Cultural sensitivity and competence ensure respect for the diverse cultural beliefs held by patients and their families. The domain of emotional and psychological support entails the evaluation of the provision of tailored emotional care. The domain of Access to Spiritual Care is concerned with the respectful consideration of patients’ spiritual needs, while the domain of Equity in Care Delivery is concerned with the evaluation of the fairness of care provided to all patients.

The nurses were invited to respond to each statement using a Likert scale, with 1 indicating a negative response and 5 indicating a positive response. The total score ranges from 36 to 180, with the following interpretation: a score of 36–71 indicates a need for improvement, 72–125 reflects moderate commitment, and 126–180 signifies high awareness and adherence to patient rights in clinical practice. This comprehensive tool enables healthcare institutions to evaluate and enhance nursing practices concerning patient rights, thereby promoting quality, compassionate, and equitable end-of-life care for all patients.

To ensure that the instruments employed in this study accurately captured the desired constructs, their validity and reliability underwent thorough evaluation. The Ethical Issues Scale (EIS) was originally validated by Fry and Duffy [35], and has since demonstrated its effectiveness in measuring various ethical challenges in nursing practice. In our study, we further validated the EIS through expert reviews and pilot testing with healthcare professionals to ensure its relevance and applicability in contemporary palliative care settings. This additional validation confirms that the scale remains a reliable tool for assessing ethical concerns, including informed consent, autonomy, and decision-making in end-of-life care, maintaining its high reliability with a Cronbach’s alpha of 0.85 as reported in previous studies.

The Nursing Quality of Life Scale (NQOLS) was originally validated through rigorous psychometric testing using a sample of 1,105 nurses providing direct patient care [37]. The factorial structure was confirmed through Exploratory Structural Equation Modelling, while reliability was shown to be excellent, indicated by omega coefficients. Cluster analysis revealed five distinct groups among participants, highlighting significant differences in work-related stress, emotional labor, and burnout. In our study, we also conducted further validation, including discussions on construct validity and pilot testing. Additionally, we confirmed the NQOLS’s reliability with a high Cronbach’s alpha of 0.90. Overall, the NQOLS is a reliable and effective instrument for measuring nurses’ quality of life and can be utilized for specific research inquiries.

The Patient Rights Questionnaire (PRQ) was developed to assess patients’ rights and their perceptions of how well these rights are upheld in palliative care settings. The authors conducted a comprehensive validation process, which included expert consultations and pilot testing to establish content validity. The PRQ demonstrated good internal consistency, achieving a Cronbach’s alpha of 0.88. It effectively measures dimensions such as informed consent, privacy, and respect for patient autonomy, ensuring that patients feel their rights are acknowledged during care. Overall, these validation processes affirm the PRQ’s reliability and suitability for assessing ethical issues and patient rights in palliative care contexts, enabling this study to provide meaningful insights into the challenges faced by nurses and patients in these settings.

The research project was approved by the Research Ethics Committee (REC) at the Faculty of Nursing, Zagazig University, Egypt. The study protocol was reviewed and granted ethical clearance under the following code ID: Zu. Nurse. REC#: 0186. In order to maintain the integrity and respect of each and every participant in this study, the ethical issues involved were of the utmost importance. The research was conducted in accordance with the most rigorous ethical standards established by the Faculty of Nursing. Prior to the commencement of data collection at the university, approval was obtained from the institutional review board. Prior to their participation, each subject was required to provide written informed consent. They were then provided with a comprehensive description of the study’s objectives, methodology, and potential risks. This ensured that participation in the study was entirely voluntary and that participants could withdraw from the study at any time without consequence. The utmost confidentiality was ensured throughout the entire research phase. To ensure the confidentiality of the participants, any personal identifiers were removed from the data set, and the information was stored securely to prevent unauthorised access. The research was designed in a way that would optimise benefits and minimise potential harm to participants, in accordance with the principles of beneficence and non-maleficence. To maintain the highest standards of research ethics in nursing practice and to guarantee adherence to established norms, ethical considerations were subject to regular examination.

Table 1 presents a summary of the demographic characteristics of the study participants. The sample is a diverse group in terms of age, gender, educational level, years of experience, and work setting. The majority of participants (52.9%) are aged between 35 and 44 years, with a significant proportion (29.4%) being aged 45 to 54 years, and 17.6% in the 55–60 age range. The majority of the sample is female (64.7%), and the most prevalent educational background is a Bachelor’s Degree (47.1%). The participants’ experience is diverse, with 41.2% having accumulated between six and ten years of experience. The majority of participants (52.9%) are employed in an oncology department.

Table 2 presents a summary of the ethical issues in palliative care as assessed by the Ethical Issues Scale (EIS), revealing mean scores that reflect the participants’ perceptions of various ethical dimensions. The highest mean score was observed for the category of “Patient Care” (M = 4.2, SD = 0.7), indicating a strong emphasis on the ethical considerations surrounding patient care practices in palliative settings. The category of “End-of-Life Treatments” also yielded a noteworthy mean score (M = 3.9, SD = 0.8), indicating a substantial degree of concern among participants regarding the intricacies of treatment decisions at the end of life. Furthermore, the “Human Rights” aspect achieved a mean score of 4.0 (SD = 0.7), emphasising the significance of protecting patient rights in palliative care settings. The overall mean score of 4.03 (SD = 0.74) indicates a general recognition of ethical issues within palliative care. This underscores the necessity for ongoing education and dialogue in order to effectively navigate these complex ethical landscapes.

The findings indicate a total quality of life mean score of 6.75, which is slightly higher than the initially reported total of 6.6 (Table 3). With regard to the dimensions, the highest score was recorded for the dimension of work, at 7.1, which indicates a strong sense of fulfilment related to work. The physical dimension exhibited a mean score of 6.9, indicating that participants generally perceive their physical well-being in a positive manner. However, the emotional dimension exhibited the lowest mean score of 6.2, indicating the potential for emotional health challenges that may require attention. The mean score for the social dimension was 6.8, indicating a reasonably positive social experience.

Table 4 presents a summary of the results obtained from the Patient Rights Questionnaire (PRQ), which was designed to assess nurses’ understanding, attitudes, and practices regarding patient rights in palliative care. The mean scores indicate a generally high level of awareness and adherence. The mean scores for autonomy and informed consent were 4.10 (SD = 0.60), for privacy and confidentiality 4.20 (SD = 0.50), and for dignity and respect 4.25 (SD = 0.55). The right to pain management and symptom relief was rated 4.15 (SD = 0.65), while the right to information and communication was rated 4.05 (SD = 0.70). The mean scores for end-of-life care preferences and support for family and loved ones were 4.00 (SD = 0.80) and 4.10 (SD = 0.75), respectively. The mean score for Patient Advocacy and Empowerment was 3.90 (SD = 0.85), which was the lowest of all the categories. The highest mean score was observed for Cultural Sensitivity and Competence (4.30, SD = 0.45), while the lowest score was recorded for Access to Spiritual Care (3.75, SD = 0.75). The domain of equity in care delivery achieved a mean score of 4.20 (SD = 0.60). The overall total score of 49.5 (SD = 6.8) indicates a moderate commitment to upholding patient rights, thereby highlighting potential areas for improvement in practice.

In the analysis, a Pearson correlation coefficient (r) was employed to evaluate the interrelationships between the variables, particularly with regard to ethical concerns, quality of life, and patient rights. A correlation coefficient can range from − 1 to + 1, with values closer to + 1 indicating a strong positive correlation, values closer to -1 indicating a strong negative correlation, and values around 0 indicating no correlation. The results of the study indicated a moderate positive correlation between ethical issues and patient rights (r = 0.52, p < 0.01), as well as between ethical issues and quality of life (r = 0.45, p < 0.01). Furthermore, a weaker positive correlation was identified between quality of life and patient rights (r = 0.40, p < 0.05), indicating that as adherence to patient rights increases, perceptions of quality of life also improve (Table 5).