The caregiver's perspective on end-of-life inpatient palliative care: a qualitative study.

INTRODUCTION: Understanding patient and caregiver experience is key to providing person-centered care. The palliative care approach includes holistic assessment and whole-person care at the end of life, that also involves the patient's family and loved ones. The aim of this study was to describe the way that family caregivers experienced patients' deaths during their loved ones' last hospital admission, comparing inpatient palliative care (PCU) and non-palliative care (Non-PCU) units. METHODS: A qualitative case study approach was implemented. Family caregivers of terminally ill patients admitted to the Infanta Elena Hospital (Madrid, Spain) between 2016 and 2018 were included using purposeful sampling. Eligible caregivers were first-degree relatives or spouses present during the patient's last hospital admission. Data were collected via in-depth interviews and researchers' field notes. Semi-structured interviews with a question guide were used. A thematic inductive analysis was performed. The group of caregivers of patients admitted to the PCU unit and the group of caregivers of patients admitted to Non-PCU were analyzed separately, through a matrix. RESULTS: In total 24 caregivers (12 from the PCU and 12 from Non-PCU units) were included. Two main themes were identified: caregivers' perception of scientific and technical appropriateness of care, and perception of person-centred care. Scientific appropriateness of care was subdivided into two categories: diagnostic tests and treatment, and symptom control. Perception of person-centred care was subdivided as: communication, emotional support, and facilitating the farewell process. Caregivers of patients admitted to a PCU unit described their experience of end-of-life care as positive, while their Non-PCU unit counterparts described largely negative experiences. CONCLUSIONS: PCU provides a person-centered approach to care at the end of life, optimizing treatment for patients with advanced disease, ensuring effective communication, establishing a satisfactory professional relationship with both patients and their loved ones, and facilitating the farewell process for family caregivers.

This article describes a qualitative case study focusing on family caregivers' perception of end-of-life care during their loved ones' dying process in their last hospital admission. Differences were observed between palliative care and non-palliative care groups regarding the perception of scientific appropriateness of care and person-centered nature of care as reported by caregivers.

[Prioritization of health resources in contexts of scarcity. SESPAS Report 2022]. / Priorización de recursos sanitarios en contextos de escasez. Informe SESPAS 2022.

The COVID-19 pandemic has been a clinical challenge, but also a legal and bioethical one. These three fundamental pillars are developed in the approach to prioritizing health resources in pandemic, clinical criteria, corresponding legal framework and applicable ethical principles. Initially, clinical criteria were applied to identify patients with the best survival prognosis, combining a clinical evaluation and the use of short-term and long-term prognostic variables. But the decision to prioritize the care of one patient over another has a legal-political burden, which poses a risk of falling into discrimination since fundamental rights are at stake. The prioritization criteria must be based on principles that reflect as a vehicle philosophy that which we have constitutionally assumed as a social and democratic State of Law, which did not respond to utilitarianism but to personalism. Any philosophy of resource distribution must bear in mind the scientific and constitutional perspective and, with them, those of fundamental rights and bioethical principles. In the prioritization of resources, ethical principles must be consolidated such as respect for the human dignity, the principle of necessity (equal need, equal access to the resource), the principle of equity (which advises prioritizing the most vulnerable population groups), transparency (fundamental in society's trust) and the principle of reciprocity (which requires protecting the sectors of the population that take more risks), among others.

Bioethical Concerns During the COVID-19 Pandemic: What Did Healthcare Ethics Committees and Institutions State in Spain?

Objectives: Each new wave of the COVID-19 pandemic invites the possible obligation to prioritize individuals' access to vital resources, and thereby leads to unresolved and important bioethical concerns. Governments have to make decisions to protect access to the health system with equity. The prioritization criteria during a pandemic are both a clinical and legal-administrative decision with ethical repercussion. We aim to analyse the prioritization protocols used in Spain during the pandemic which, in many cases, have not been updated. Method: We carried out a narrative review of 27 protocols of prioritization proposed by healthcare ethics committees, scientific societies and institutions in Spain for this study. The review evaluated shared aspects and unique differences and proffered a bioethical reflection. Results: The research questions explored patient prioritization, the criteria applied and the relative weight assigned to each criterion. There was a need to use several indicators, being morbidity and mortality scales the most commonly used, followed by facets pertaining to disease severity and functional status. Although age was initially considered in some protocols, it cannot be the sole criterion used when assigning care resources. Conclusions: In COVID-19 pandemic there is a need for a unified set of criteria that guarantees equity and transparency in decision-making processes. Establishing treatment indications is not the aim of such criteria, but instead prioritizing access to care resources. In protocols of prioritization, the principle of efficiency must vary according to the principle of equity and the criteria used to guarantee such equity.

Impact of individualized management of breakthrough cancer pain on quality of life in advanced cancer patients: CAVIDIOPAL study.

PURPOSE: The main aim of the study was to assess the impact of individualized management of breakthrough cancer pain (BTcP) on quality of life (QoL) of patients with advanced cancer in clinical practice. METHODS: A prospective, observational, multicenter study was conducted in patients with advanced cancer that were assisted by palliative care units. QoL was assessed with the EORTC QLQ-C30 questionnaire at baseline (V0) and after 28 days (V28) of individualized BTcP therapy. Data on background pain, BTcP, comorbidities, and frailty were also recorded. RESULTS: Ninety-three patients completed the study. Intensity, duration, and number of BTcP episodes were reduced (p < 0.001) at V28 with individualized therapy. Transmucosal fentanyl was used in 93.8% of patients, mainly by sublingual route. Fentanyl titration was initiated at low doses (78.3% of patients received doses of 67 µg, 100 µg, or 133 µg) according to physician evaluation. At V28, mean perception of global health status had increased from 31.1 to 53.1 (p < 0.001). All scales of EORTC QLQ-C30 significantly improved (p < 0.001) except physical functioning, diarrhea, and financial difficulties. Pain scale improved from 73.6 ± 22.6 to 35.7 ± 22.3 (p < 0.001). Moreover, 85.9% of patients reported pain improvement. Probability of no ≥ 25% improvement in QoL was significantly higher in patients ≥ 65 years old (OR 1.39; 95% CI 1.001-1.079) and patients hospitalized at baseline (OR 4.126; 95% CI 1.227-13.873). CONCLUSION: Individualized BTcP therapy improved QoL of patients with advanced cancer. Transmucosal fentanyl at low doses was the most used drug. TRIAL REGISTRATION: This study was registered at ClinicalTrials.gov database (NCT02840500) on July 19, 2016.

Prevalence of the need for sodium intake restriction and the use of laxatives in palliative patients.

BACKGROUND: palliative patients usually have diseases that require a restriction of dietary sodium, although the prevalence of this requirement is unknown. Such conditions, combined with constipation, may mean that the use of laxatives with electrolytes should be avoided. OBJECTIVES: to ascertain the prevalence of the need to restrict sodium intake in palliative patients and to analyze the prevalence of constipation and the use of laxatives, including those containing sodium. METHOD: this was a multicenter retrospective, descriptive, cross-sectional, epidemiological study of both inpatients and outpatients over 18 years of age treated at the palliative care clinic (June 2015-March 2016). Demographic and anthropometric characteristics, diseases associated with dietary sodium restriction and treatments administered were recorded. RESULTS: the study sample consisted of 400 palliative patients, with a mean age of 77.8 ± 13.0 years and 52.2% were male. Of these, 68.3% were inpatients and 31.8% were outpatients. Comorbidities requiring low sodium or a sodium-free diet were found in 87.0% (95% CI: 83.3-90.0) of cases. Only 46.5% (95% CI: 41.5-51.5) of patients had been prescribed a low salt diet. It should be noted that 50.5% (95% CI: 45.5-55.5) of patients required a low sodium diet and suffered from constipation. Laxatives (polyethylene glycol or lactulose-rich products [PEG] with electrolytes in 54% of cases) were taken by 53.8% (95% CI: 48.7-58.7) of patients, 52.1% due to constipation and 42.3% as a prevention due to opioid treatment. CONCLUSIONS: a high proportion of the study cohort (87%) had some condition that required dietary sodium restriction and at least half the patients had constipation. The use of laxatives to treat or prevent constipation is common in palliative patients. A sodium-free laxative is therefore preferred in these patients.