What do we know about experiencing end-of-life in burn intensive care units? A scoping review.

OBJECTIVES: The aim of this article is to review and synthesize the evidence on end-of-life in burn intensive care units. METHODS: Systematic scoping review: Preferred Reporting Items for Systemic Reviews extension for Scoping Reviews was used as a reporting guideline. Searches were performed in 3 databases, with no time restriction and up to September 2021. RESULTS: A total of 16,287 documents were identified; 18 were selected for analysis and synthesis. Three key themes emerged: (i) characteristics of the end-of-life in burn intensive care units, including end-of-life decisions, decision-making processes, causes, and trajectories of death; (ii) symptom control at the end-of-life in burn intensive care units focusing on patients' comfort; and (iii) concepts, models, and designs of the care provided to burned patients at the end-of-life, mainly care approaches, provision of care, and palliative care. SIGNIFICANCE OF RESULTS: End-of-life care is a major step in the care provided to critically ill burned patients. Dying and death in burn intensive care units are often preceded by end-of-life decisions, namely forgoing treatment and do-not-attempt to resuscitate. Different dying trajectories were described, suggesting the possibility to develop further studies to identify triggers for palliative care referral. Symptom control was not described in detail. Palliative care was rarely involved in end-of-life care for these patients. This review highlights the need for early and high-quality palliative and end-of-life care in the trajectories of critically ill burned patients, leading to an improved perception of end-of-life in burn intensive care units. Further research is needed to study the best way to provide optimal end-of-life care and foster integrated palliative care in burn intensive care units.

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.

Depressive symptoms in the last days of life of patients with cancer: a nationwide retrospective mortality study.

OBJECTIVES: Depressive symptoms are common in patients with cancer and tend to increase as death approaches. The study aims were to examine the prevalence of depressive symptoms in patients with cancer in their final 24 h, and their association with other symptoms, sociodemographic and care characteristics. METHODS: A stratified sample of deaths was drawn by Statistics Netherlands. Questionnaires on patient and care characteristics were sent to the physicians (N=6860) who signed the death certificates (response rate 77.8%). Adult patients with cancer with non-sudden death were included (n=1363). Symptoms during the final 24 h of life were assessed on a 1-5 scale and categorised as 1=no, 2-3=mild/moderate and 4-5=severe/very severe. RESULTS: Depressive symptoms were registered in 37.6% of the patients. Patients aged 80 years or more had a reduced risk of having mild/moderate depressive symptoms compared with those aged 17-65 years (OR 0.70; 95% CI 0.50 to 0.99). Elderly care physicians were more likely to assess patients with severe/very severe depressive symptoms than patients with no depressive symptoms (OR 4.18; 95% CI 1.48 to 11.76). Involvement of pain specialists/palliative care consultants and psychiatrists/psychologists was associated with more ratings of severe/very severe depressive symptoms. Fatigue and confusion were significantly associated with mild/moderate depressive symptoms and anxiety with severe/very severe symptoms. CONCLUSIONS: More than one-third of the patients were categorised with depressive symptoms during the last 24 h of life. We recommend greater awareness of depression earlier in the disease trajectory to improve care.

Ethical Decisions in Palliative Care: Interprofessional Relations as a Burnout Protective Factor? Results From a Mixed-Methods Multicenter Study in Portugal.

BACKGROUND: Ethical decisions are part of contemporary practices in palliative care. The need of making such decisions is associated to higher burnout levels and other work related problems among healthcare professionals. AIMS: As part of the project entitled "Decisions in End-of-Life Care in Spain and Portugal" (DELiCaSP), this study aims to (i) identify the most common ethical decisions made by Portuguese palliative care teams and (ii) understand how the making of such decisions relates to burnout. METHODS: A mixed methods study was conducted with 9 palliative care teams, using (i) questionnaires of socio-demographic and professional variables, work-related experiences, (ii) the Maslach Burnout Inventory, (iii) interviews and (iv) observations. These teams were geographically dispersed across the country, covering the North, Centrum and South regions, and heterogeneous: Five palliative care units for inpatients; three home care teams; and one hospital support team. A total of 20 interviews and 240 hours of observations were completed until reaching saturation. RESULTS: The most common ethical decisions were related to communication issues (information disclosure of the diagnosis and prognosis), forgoing treatment and sedation. Although perceived as stressful, emotionally demanding and challenging, ethical decisions were not significantly associated with burnout. CONCLUSIONS: Making ethical decisions is not associated with higher burnout levels among professionals working in Portuguese palliative care teams. This can be explained by the interprofessional decision-making process followed by these teams, which promotes a sense of shared-decision and team-based empowerment; and by the advanced level of interdisciplinary education in palliative care that these professionals have.

[Economic cost of treating pressure ulcers: a theoretical approach]. / Custo econômico do tratamento das úlceras por pressão: uma abordagem teórica.

The present study consisted of a theoretical approach to the problem posed by the economic costs associated with pressure ulcers (PUs). The initial aim was to assess the target problem from a conceptual perspective and then to report the results of prevalence studies that formed the basis for investigations of the disease's economic impact. The purpose of the present article is to discuss the economic costs associated with PUs from both the global point of view (appraising their financial repercussion) and the individual point of view (addressing the intangible costs). Regarding the economic impact of the costs associated with PUs, the total cost of treatment per healthcare setting was estimated relative to the Autonomous Community of Azores. The total cost of all the PU categories was EUR 7,086,415 in the homecare setting, EUR 1,723,509 in the hospital setting, and EUR 1,002,562 in older people's homes. Therefore, the estimated total treatment cost of all the PU categories was approximately EUR 9,812,486 in Azores. However, the emotional impact of this disease imposes high costs on patients and their relatives as a function of the resultant suffering. Indeed, PUs impose high costs not only related to the treatment but also related to the intangible costs of the suffering caused to patients and their caregivers.

Custo econômico do tratamento das úlceras por pressão: uma abordagem teórica / Costo economico del tratamiento de las ulceras por presion: una aproximacion teorica / Economic cost of treating pressure ulcers: a theoretical approach

O presente artigo consiste numa abordagem teórica sobre a problemática dos custos económicos das úlceras por pressão. Parte-se do conhecimento do problema, numa perspetiva conceptual, para, de seguida, apresentar resultados de estudos de prevalência, a partir dos quais foram delineados estudos de impacto económico. O objectivo deste artigo é o de reflectir sobre os custos económicos associados às úlceras por pressão, quer numa perspetiva global, considerando a repercussão financeira, quer numa vertente personalista, atendendo aos custos intangíveis. Relativamente ao impacto económico das úlceras por pressão, foi efectuada uma estimativa ao nível da Região Autónoma dos Açores do custo total do tratamento por ambiente de cuidados. Nos cuidados domiciliários o custo com o tratamento de todas as categorias é calculado em 7.086.415 euros; nos cuidados hospitalares, em 1.723.509 euros, e nos cuidados prestados em lares de idosos, em 1.002.562 euros. Nos Açores, a estimativa do custo total do tratamento das úlceras por pressão, considerando todas as suas categorias, ronda os 9.812.486 euros. Quanto ao impacto emocional associado, este tem elevados custos para pessoa e para os familiares, nomeadamente pelo sofrimento gerado. De facto, as úlceras por pressão acarretam elevados custos económicos associados ao tratamento, bem como custos intangíveis pelo sofrimento vivenciado por pessoas e cuidadores.

El presente artículo consiste en una reflexión teórica sobre el problema de los costos económicos de las úlceras por presión. Se empieza por el conocimiento del problema, desde una perspectiva conceptual, y, a continuación, se presentan los resultados de estudios de prevalencia, a partir de los cuales se diseñaron estudios de impacto económico. El objetivo del artículo es reflexionar sobre los costos económicos asociados a las úlceras por presión tanto en una perspectiva global, considerando la repercusión financiera, como en una vertiente personalista, de acuerdo a los costos intangibles. En cuanto al impacto económico de las úlceras por presión, se realizó una estimación de la Región Autónoma de Açores del costo total del tratamiento por ámbito de atención. En la atención domiciliaria el costo con el tratamiento de todas las categorías se estima en € 7.086.415, en la atención hospitalaria, se estima € 1.723.509 y en la atención en los asilos se estima en €1.002.562. En Açores, el costo total estimado del tratamiento de las úlceras por presión en todas las categorías, es de alrededor de € 9.812.486. En cuanto al impacto emocional asociado, éste tiene elevados costos para la persona y para los familiares, principalmente, por el sufrimiento causado. De hecho, las úlceras por presión implican altos costos económicos asociados con el tratamiento, así como, costos intangibles generados por el sufrimiento experimentado por los individuos y los cuidadores.

The present study consisted of a theoretical approach to the problem posed by the economic costs associated with pressure ulcers (PUs). The initial aim was to assess the target problem from a conceptual perspective and then to report the results of prevalence studies that formed the basis for investigations of the disease’s economic impact. The purpose of the present article is to discuss the economic costs associated with PUs from both the global point of view (appraising their financial repercussion) and the individual point of view (addressing the intangible costs). Regarding the economic impact of the costs associated with PUs, the total cost of treatment per healthcare setting was estimated relative to the Autonomous Community of Azores. The total cost of all the PU categories was EUR 7,086,415 in the homecare setting, EUR 1,723,509 in the hospital setting, and EUR 1,002,562 in older people’s homes. Therefore, the estimated total treatment cost of all the PU categories was approximately EUR 9,812,486 in Azores. However, the emotional impact of this disease imposes high costs on patients and their relatives as a function of the resultant suffering. Indeed, PUs impose high costs not only related to the treatment but also related to the intangible costs of the suffering caused to patients and their caregivers.

Burnout in palliative care: a systematic review.

Burnout is a phenomenon characterized by fatigue and frustration, usually related to work stress and dedication to a cause, a way of life that does not match the person's expectations. Although it seems to be associated with risk factors stemming from a professional environment, this problem may affect any person. Palliative care is provided in a challenging environment, where professionals often have to make demanding ethical decisions and deal with death and dying. This article reports on the findings of a systematic review aimed at identifying described burnout levels in palliative care nurses and physicians, and the related risks and protective factors. The main findings indicate that burnout levels in palliative care, or in health care settings related to this field, do not seem to be higher than in other contexts.