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.

Sedación paliativa con propofol en una unidad de cuidados paliativos de un hospital de tercer nivel / Palliative sedation in a palliative care unit at a tertiary hospital: is emotional or existential suffering frequent?

ANTECEDENTES Y OBJETIVOS: El aumento de pacientes paliativos genera más situaciones de sedación paliativa complicada. Múltiples factores influyen en la dificultad para realizar una sedación: tolerancia farmacológica, interacciones medicamentosas, afrontamiento emocional... En situaciones de resistencia a fármacos sedantes habituales se precisan otros fármacos como el propofol. El objetivo principal es revisar el uso de propofol en cuidados paliativos y describir varios pacientes que precisaron sedación paliativa con propofol en una Unidad de Cuidados Paliativos (UCP). MATERIAL Y MÉTODO: Estudio descriptivo retrospectivo. Se incluyeron, durante 10 meses, los pacientes que precisaron propofol por una sedación complicada y dos pacientes que fallecieron durante la inducción con propofol. Se registraron múltiples variables y comentarios de las historias clínicas para aclarar el motivo de precisar propofol. RESULTADOS: Existe poca literatura acerca del uso de propofol en cuidados paliativos, basada en casos clínicos aislados o series cortas de pacientes. Cuatro pacientes de nuestra revisión precisaron sedación con propofol. Estos casos fueron significativamente más jóvenes (55,5 años; p = 0,01) y la sedación fue más prolongada (7,5 días; p = 0,05). Los principales motivos para la sedación fueron sintomatología física múltiple o sufrimiento emocional. Todos los pacientes habían precisado dosis altas de otros fármacos sedantes y tuvieron mala respuesta a rescates de otros sedantes en las horas previas. Se propone una guía clínica para el uso de propofol en cuidados paliativos. CONCLUSIONES: - El propofol es un fármaco poco usado en cuidados paliativos, en general con buenos resultados. - Los pacientes que precisaron propofol por una sedación complicada fueron más jóvenes y tuvieron una sedación más prolongada. Destaca el intenso sufrimiento emocional. - Existen factores de sedación complicada o resistencia al midazolam que pueden ayudar a iniciar lo antes posible otro fármaco sedante más eficaz. - Se propone un protocolo para el uso de propofol en paliativos, recomendando comenzar con dosis bajas. - Es necesaria una mayor difusión en el empleo del propofol en una sedación complicada. - Son necesarios estudios que aclaren aspectos dudosos en el uso del propofol

BACKGROUND AND OBJECTIVES: The more patients cared for in palliative care, the more complicated situations arise - for example, palliative sedation due to a refractory symptom. Many factors may complicate a difficult sedation because of drug tolerance or interactions and psychological assessment. Resistance to usual sedative medications is frequent in these situations, and other pharmaceuticals like propofol, with limited use in a palliative care unit (PCU), are needed. The main objectives of this study were to research the available literature, and to report various PCU cases in a tertiary hospital where palliative sedation with propofol was needed. MATERIAL AND METHODS: A descriptive and retrospective study was performed during 10 months. Sedated patients with propofol were included. Also, two patients who died when induction doses of propofol were administered. Many variables were recorded. The clinical records of patients were also reviewed to elucidate the reason why propofol sedation was needed. RESULTS: Few studies exist examining the use of propofol in palliative care based on case reports or small series of cases. Four patients required sedation with propofol. These patients were younger (average age, 55.5, p = 0.01) and had a longer time between sedation onset and death (average time, 7.5 days, p = 0.05). The main symptoms motivating sedation were multifactorial and emotional suffering. All patients receiving propofol needed high-dose maintenance sedation with other sedative medications, and had responded minimally or not at all to rescue doses in previous hours. Updated guidelines for propofol use in PCUs have been drafted, with recommendations and dosages in case of complicated sedation. CONCLUSIONS: - Propofol use is limited in palliative care, usually with good results. Patients where propofol was needed were younger and sedation was longer. There was high emotional suffering in these patients. - There are factors responsible for complicated sedation or limited response to midazolam. Knowledge of these factors might help in providing earlier, more effective sedation. - Guidelines for propofol use in the PCU setting are proposed, recommending low maintenance doses initially. - A more widespread use of propofol as sedative medication in PCUs is recommended when complicated sedation occurs. - Further studies are needed to clarify many aspects of propofol use

Prevalencia de la necesidad de restricción de ingesta de sodio y de necesidad de laxantes en pacientes paliativos / Prevalence of the need for sodium intake restriction and the use of laxatives in palliative patients

Antecedentes: la población paliativa suele sufrir patologías que requieren una restricción de sodio en su dieta, aunque se desconoce la prevalencia de este requerimiento. Estas patologías, junto al estreñimiento, hacen que pueda desaconsejarse el uso de laxantes con electrolitos. Objetivo: conocer la prevalencia de la necesidad de restringir la ingesta de sodio en pacientes paliativos y analizar la prevalencia de estreñimiento y del uso de laxantes, incluidos los que contienen sodio. Método: estudio epidemiológico, multicéntrico, descriptivo, transversal y retrospectivo en pacientes mayores de 18 años recibidos en la consulta hospitalaria de paliativos (junio 2015-marzo 2016) tanto externos como hospitalizados. Se recogieron las características demográficas y antropométricas, enfermedades asociadas a la restricción de sodio en la dieta y tratamientos usados. Resultados: se incluyeron 400 pacientes paliativos (edad 77,8 ± 13,0 años, hombres 52,2%). El 68,3% fueron pacientes hospitalizados y el 31,8%, externos. En el 87,0% (IC95%: 83,3-90,0) existía comorbilidad que precisaba una dieta baja o ausente de sodio. Solo el 46,5% (IC95%: 41,5-51,5) tenía una recomendación de dieta baja en sal. Cabe resaltar que el 50,5% (IC95%: 45,5-55,5) de los pacientes presentó la necesidad de dieta baja en sodio y sufría estreñimiento. Un 53,8% (IC95%: 48,7-58,7) de los pacientes tomaba laxantes (54% productos ricos en lactulosa o polietilenglicol [PEG] con electrolitos), el 52,1% debido a estreñimiento y el 42,3% como prevención al tratamiento con opioides. Conclusiones: un alto porcentaje de la población estudiada (87%) padece algún trastorno que requiere la limitación de sodio en su dieta y al menos la mitad presenta estreñimiento. El uso de laxantes, como tratamiento o como prevención del estreñimiento, es frecuente en los pacientes paliativos. Por tanto, la elección de un laxante sin sodio será preferible en este tipo de pacientes

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

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.