How to conduct research in palliative care? A perspective from Italy.

BACKGROUND: In western countries, the increasing life expectancy and the growing number of individuals with advanced chronic conditions have resulted in a greater demand for palliative care. Specifically, Italy has witnessed substantial growth in the palliative care field, marked by the establishment of Palliative Care Networks and an academic fellowship program in 2022. To further enhance this field, it is crucial to conduct high-quality scientific research that produces results applicable in clinical practice. AIM: This article explores challenges and potential solutions in conducting effective palliative care research, considering sample definition, research settings, outcomes, and ethical concerns. While focusing on the Italian context, the presented research framework can be applied to other contexts and regions. RESULTS: Palliative care research is complex and challenging due to its holistic approach, which encompasses various vital dimensions of patients and their families, including physical, emotional, and social needs. The Italian and worldwide experience provides insights into managing these challenges and enhancing the methodological rigor of studies and the practical application of research findings. CONCLUSIONS: This article emphasizes the importance of developing protocols tailored to palliative care's unique characteristics, and the necessity of dedicated funding for palliative care research, calling for increased support and recognition. The article advocates for improvement of the quality and relevance of palliative care studies, promoting better patient outcomes and enhanced caregiving.

[Chronic Kidney Disease and Cancer: Ethical Choices].

Cancer and chronic kidney disease prevalence both increase with age. As a consequence, physicians are more frequently encountering older people with cancer who need dialysis, or patients on dialysis diagnosed with cancer. Decisions in this context are particularly complex and multifaceted. Informed decisions about dialysis require a personalised care plan that considers the prognosis and treatment options for each condition while also respecting patient preferences. The concept of prognosis should include quality-of-life considerations, functional status, and burden of care. Close collaboration between oncologists, nephrologists, geriatricians and palliativists is crucial to making optimal treatment decisions, and several tools are available for estimating cancer prognosis, prognosis of renal disease, and general age-related prognosis. Decision regarding the initiation or the termination of dialysis in patients with advanced cancer have also ethical implications. This last point is discussed in this article, and we delved into ethical issues with the aim of providing a pathway for the nephrologist to manage an elderly patient with ESRD and cancer.

[Dialysis withdrawal and shared end-of-life management between nephrology and palliative care: our three-year experience].

Most dialysis patients with end-stage kidney disease (ESKD) lack access to palliative care services. According to the data of the Dialysis Outcomes and Practice Study (DOPPS), Italy when compared to other countries included in the study, had the lowest rates of dialysis discontinuation. Indeed, there is a growing interest in the implementation of international and national programs for the co-management between nephrology and palliative care in end-of-life decision-making for patients with ESKD. On behalf of this, since 2017, we started in the nephrology outpatient clinic and hemodialysis facilities of the Provincia Autonoma of Trento a shared program between Nephrology and Palliative Care Units to improve the end-of-life quality of care in ESKD patients in conservative and dialytic therapy. Methods:A retrospective analysis, from the 1st of January 2019 to 31st December 2021, of dialysis withdrawal in a cohort of patients undergoing hemodialysis and peritoneal dialysis. Results:Dialysis withdrawal and subsequent death, according to the integrated protocol with the Palliative Care resources, were 24 in 2019, 20 in 2020, and 28 in 2021. The mean age was 75 years in 2019, 78 years in 2020, and in 2021. Most of the patients were male. Dialysis discontinuation was higher in chronic dialysis patients (80% in 2019 and 2020, and 79% in 2021), and considering the annual rates of death of all the dialysis patients, those who died because of dialysis withdrawal were 38% in 2019, 31% in 2020 and 40% in 2021. Survival after dialysis withdrawal was in most of the cases less than 7 days; only few patients lived more than 30 days. Furthermore, the data, in the 3 years considered, showed a reduction of hospitalization and an increase of the rate of death at home. Conclusions:As described in the present study, strategies to expand palliative care by a shared protocol among nephrology and palliative care staff improved the quality of care in the end of life and reduced the hospitalization rates of admission of patients after dialysis withdrawal.

[Artificial intelligence and palliative care: opportunities and limitations.] / Intelligenza artificiale e cure palliative: opportunità e limiti.

The so-called artificial intelligence tools applied to palliative care (machine learning, natural language processing) have great potential to support clinicians in improving decision-making processes and in identifying those who are at high risk of mortality or at greater risk of inappropriate treatment and/or non-positive outcomes. The improvement of prognostic abilities may help to avoid that some choices of patients with serious diseases are taken only in the last days of life, in the face of treatment options not previously discussed in an adequate and shared way. These tools can facilitate some essential aspects in the practice of palliative care, for example the activation of interviews that have as their objective the advance care planning and the definition of treatments consistent with the needs and desires of patients, especially in final stages of life. The development, also in our country, of projects for the application of artificial intelligence in palliative care requires particular attention to the possible organizational repercussions and to some ethical and relational aspects. It will be necessary to reflect on the most appropriate organizational models and on the specialized resources necessary in relation to the foreseeable increase in the number and variability of patients with early identified palliative care needs. These tools must not interfere in fundamental elements of the relationship between patient and doctor, that is the ability to communicate a poor prognosis in an individualized and ethically appropriate way.

Development of a Perinatal Palliative Care Model at a Level II Perinatal Center Supported by a Pediatric Palliative Care Network.

Objective: To describe the model build up to take care of fetuses and newborns eligible to perinatal palliative care (PnPC) followed in an Italian II level perinatal center. Methods: Retrospective chart review of all fetuses and newborn infants eligible to PnPC admitted to level II perinatal center within a 4 years period. Results: Forty-five of 848 infants (0.5%) referred to II level NICU were eligible to PnPC. Twenty-seven percentage had fetal diagnosis. Twenty percentage were preterm infants at the limit of viability, 35% were newborns with life limiting or life threatening disease diagnosed in utero or at the postnatal ward, 45% were newborns not responding to intensive care intervention with high health care needs or medical complexity. Fifty-seven percentage of neonates admitted to NICU died before discharge, while 16 (35% of population considered) were discharged home. Median age at death was 4 days after birth, and delivery room death immediately after birth occurred in six patients (13%). Conclusions: Despite the paucity of our population and the high variability in disease trajectories the perinatal palliative care program build up in our region provides a reproducible method for a structured taking in charge of fetuses and neonates eligible to PnPC and their families, from the time of diagnosis to bereavement, in both outpatient and inpatient settings.