The Neonatal Palliative Care Attitude Scale: Psychometric properties for Portuguese neonatal nurses.

BACKGROUND: This study is aimed to perform the translation and cultural adaptation of the Neonatal Palliative Care Attitude Scale (NiPCAS) and evaluation of its psychometric properties with Portuguese neonatal nurses. METHODS: The research started with a scoping review that allowed the identification of the NiPCAS. It was a methodological study with a quantitative approach. The semantic equivalence of the items was adjusted with the participation of 20 neonatal nurse experts. They performed facial and quantitative content validation. Psychometric validation of the NiPCAS was performed on a nonprobability nurses sample (n = 283) in 13 level 3 neonatal units between July 2021 and February 2022. Confirmatory factor analysis using the polychoric correlation matrix was performed to estimate factor validity using the "lavaan" package for R statistical software. Internal consistency was estimated using Cronbach's alpha coefficient, and item sensitivity was assessed using the asymmetry and kurtosis coefficients. Empirical indices were considered: chi-square over degrees of freedom; comparative fit index; normed fit index; Tucker-Lewis index, and root mean square error of approximation; average extracted variance and composite reliability were used to assess convergent validity. RESULTS: Asymmetry and kurtosis were <|3| and <|7|, respectively, suggesting psychometric sensitivity. The convergent validity of the factors was: F1, FCF1 = 0.90 and for F2, FCF2 = 0.80, and a lower value for F3, FCF3 = 0.40. According to the squared correlation criterion average variance extracted (AVE) between the factors, there was no discriminant validity for F1 and F2, but there was discriminant validity for F1, F3, F2, and F3. SIGNIFICANCE OF RESULTS: This instrument has implications for providing end-of-life care to newborns and their families. The use of this instrument reveals several barriers and facilitating elements inherent in the organization and culture of the facility and nursing education.

Palliative care nursing involvement in end-of-life decision-making: Qualitative secondary analysis.

BACKGROUND: Nurses are the largest professional group in healthcare and those who make more decisions. In 2014, the Committee on Bioethics of the Council of Europe launched the "Guide on the decision-making process regarding medical treatment in end-of-life situations" (hereinafter, Guide), aiming at improving decision-making processes and empowering professionals in making end-of-life decisions. The Guide does not mention nurses explicitly. OBJECTIVES: To analyze the ethical principles most valued by nurses working in palliative care when making end-of-life decisions and investigate if they are consistent with the framework and recommendations of the Guide; to identify what disputed/controversial issues are more frequent in these nurses' current end-of-life care practices. DESIGN: Qualitative secondary analysis. PARTICIPANTS/CONTEXT: Three qualitative datasets including 32 interviews from previous studies with nurses working in palliative care in Portugal. ETHICAL CONSIDERATION: Ethical approval was obtained from the Ethics Research Lab of the Instituto de Bioética (Ethics Research Lab of the Institute of Bioethics) (Ref.04.2015). Ethical procedures are thoroughly described. FINDINGS: All participant nurses referred to autonomy as an ethical principle paramount in end-of-life decision-making. They were commonly involved in end-of-life decision-making. Palliative sedation and communication were the most mentioned disputed/controversial issues. DISCUSSION: Autonomy was highly valued in end-of-life care and decision-making. Nurses expressed major concerns in assessing patients' preferences, wishes, and promoting advance care planning. Nurses working in palliative care in Portugal were highly involved in end-of-life decision-making. These processes embraced a collective, inclusive approach. Palliative sedation was the most mentioned disputed issue, which is aligned with previous findings. Communication also emerged as a sensitive ethical issue; it is surprising, however, that only three nurses referred to it. CONCLUSION: While the Guide does not explicitly mention nurses in its content, this study shows that nurses working in palliative care in Portugal are involved in these processes. Further research is needed on nurses' involvement and practices in end-of-life decision-making.

End-of-Life Decision Making in Palliative Care and Recommendations of the Council of Europe: Qualitative Secondary Analysis of Interviews and Observation Field Notes.

BACKGROUND: End-of-life decisions (ELDs) are embedded in clinical, sociocultural, political, economic, and ethical concerns. In 2014, the Council of Europe (CoE) through its Committee on Bioethics launched the "Guide on the decision-making process regarding medical treatment in end-of-life situations," aiming at improving decision-making processes and empowering professionals in making ELDs. OBJECTIVE: To analyze if end-of-life decision making in palliative care (PC) is consistent with this Guide and to identify if disputed/controversial issues are part of current ELDs. DESIGN: Qualitative secondary analysis. SETTING/SUBJECTS: Four qualitative datasets, including 44 interviews and 9 team observation field notes from previous studies with PC teams/professionals in Portugal. MEASUREMENTS: An analysis grid based on the abovementioned guide was created considering three dimensions: ethical and legal frameworks, decision-making process, and disputed/controversial issues. RESULTS: The majority of the professionals considered the ethical principle of autonomy paramount in end-of-life decision making. Justice and beneficence/nonmaleficence were also valued. Although not mentioned in the Guide, the professionals also considered other ethical principles when making ELDs, namely, responsibility, integrity, and dignity. Most of the interviewees and field notes referred to the collective interprofessional dimension of the decision-making process. Palliative sedation and the wish to hasten death were the most mentioned disputed/controversial issues. The nature, limitations, and benefits of qualitative secondary analysis are discussed. CONCLUSIONS: End-of-life decision-making processes made by Portuguese PC teams seem to be consistent with the guidelines of the CoE. Further research is needed about disputed/controversial issues and the actual use, effectiveness, and impact of ethical guidelines for end-of-life decision making on professionals' empowerment and for all parties involved.

Symptoms other than pain in palliative care in Portugal.

OBJECTIVE: To study the burden of patients' symptoms other than pain and their treatment by Portuguese palliative care teams. METHODS: Of the 21 Portuguese palliative care teams identified, 10 accepted to participate. Data from all patients observed on the 18th week of 2011 were collected. RESULTS: One hundred and sixty-four patients were included in this study. One hundred and fifty-one patients (92%) had cancer. The patients' median age was 71 years (16-95) and 84 (51%) were females. The main symptoms were fatigue (116 [85%]) and depression/sadness (107 [65%]). Many different drugs were used for symptom control and other aims. Symptoms and drugs used here are similar to those practiced in other countries. CONCLUSION: The practice of palliative care in Portugal seems to be similar to those in other countries.

A cross-sectional survey of pain in palliative care in Portugal.

OBJECTIVE: The purpose of this work is to study the prevalence, intensity, and treatment of pain in Portuguese palliative care teams. METHODS: Twenty-one palliative care teams were invited to participate in a cross-sectional survey. Ten of these accepted and were included in the study. Data of all patients observed on the 18th week of 2011 were collected. The data collected concerning pain were: demographic data, pain intensity, drugs prescribed, and invasive techniques. The intensity of pain was rated using a five-point verbal rating scale from none to maximum. The Pain Management Index (PMI) was used to calculate the adequacy of the analgesia. RESULTS: A total of 164 patients were included in this study. One hundred fifty-one (92 %) had cancer. The median age was 71 years (16 to 95). Eighty-four (51 %) were females. Pain was directly assessed in 136 (83 %) of the patients, whereas 27 patients could not report pain because of cognitive failure. Of those directly assessed, 77 (57 %) had pain when they were assessed: 42 (55 %) mild, 25 (32 %) moderate, 9 (12 %) severe, and 1 (1 %) maximum. Non-opioid analgesics were used: paracetamol in 61 (37 %) and NSAID in 20 (12 %). Tramadol was the only opioid for mild to moderate pain used in 25 (15 %) patients. The opioids most used for moderate to intense pain were: morphine 74 (45 %), transdermal (TD) fentanyl 32 (20 %), and buprenorphine TD 28 (17 %). The adjuvants most used were: corticosteroids 38 (23 %), gabapentin 37 (23 %), and amitriptyline 15 (9 %). Only five (4 %) patients had a negative PMI, meaning an inadequate analgesia. CONCLUSION: The general prevalence of pain is similar to that reported by other. The prevalence of moderate to severe pain is also similar to that reported in other studies, although severe pain is somewhat lower than indicated in most reports. According to the PMI, pain control was acceptable to good.

A cross-sectional survey of the activity of palliative care teams in Portugal.

Of the 21 Portuguese teams identified, 10 accepted to participate in the study. A total of 164 patients were included with a median of 15.5 per team (4-32). Of all the patients included, 60 (37%) were identified as inpatients in palliative care units; 59 (36%) by an intrahospital support team; 26 (16%) as outpatients; and 19 (12%) at home. The median age was 71 years (16-95). Fifty-one percent were females. The diagnosis was cancer in 151 (92%) patients. The most common cancer was colorectal in 22 (15%) patients, followed by gastric 17 (11%), head and neck 17 (11%), breast 15 (10%), and lung cancers 14 (9%). All patients were treated by doctors and nurses experienced in palliative care.

Advance directives: Portuguese palliative care professionals' views.

Advance directives are a controversial subject in Portugal at present, particularly among health professionals. Although some health professionals consider them to be important tools that are helpful in making proper decisions and promoting patient autonomy, others think that they may interfere with the human and relational dimension of care. It is therefore timely to investigate health professionals' views of advance directives in more detail. This study aimed to identify and reflect on Portuguese palliative care professionals' perspectives of advanced directives and their relevance to end-of-life decision making. A qualitative exploratory methodology was adopted in which interviews were conducted with two physicians, six nurses, two psychologists, and one social worker from four palliative care teams based across Portugal. The findings emphasize the relevance of advance directives to ethical decision-making processes in palliative care. However, debates are needed regarding whether advance directives should be legally binding.