Dying with end stage kidney disease: factors associated with place of death on a palliative care program / Fim de vida na doença renal terminal: fatores associados ao local de óbito num programa de cuidados paliativos

Abstract Introduction: End of life care of patients with end-stage kidney disease (ESKD) may be particularly challenging and requires the intervention of a specialized palliative care team (PCT). Objective: To characterize the population of ESKD patients referred to a PCT and evaluate the determinants of planned dying at home. Methods: We performed a retrospective observational cohort study of all patients with ESKD referred to our PCT between January 2014 and December 2021 (n = 60) and further characterized those with previously known ESKD regarding place of death (n = 53). Results: The majority of the patients were female and the median age was 84 years. Half of the patients were on conservative treatment, 43% were on chronic hemodialysis, and the remainder underwent hemodialysis on a trial basis and were subsequently suspended. Of those with previously known ESKD, 18% died at home and neither gender, age, cognition, performance status, comorbidities, CKD etiology, or treatment modality were associated with place of death. Anuria was significantly associated with dying at the hospital as was shorter time from dialysis suspension and death. Although not reaching statistical significance, we found a tendency towards a longer duration of palliative care follow-up in those dying at home. Conclusion: Dying at home is possible in a palliative domiciliary program regardless of age, gender, etiology of CKD, major comorbidities, and treatment modality. Anuria and shorter survival from RRT withdrawal may be limiting factors for planned dying at home. A longer follow-up by palliative care may favor dying at home.

Resumo Introdução: Os cuidados de fim de vida em doentescom doença renal terminal (DRT) podem ser desafiantes e necessitar do apoio de uma equipa especializada em cuidados paliativos (ECP). Objetivo: Caracterizar a população de doentes com DRT encaminhada à ECP e avaliar os determinantes para um fim de vida planeado no domicílio. Métodos: Realizámos um estudo de coorte observacional retrospectivo dos doentes com DRT encaminhados à ECP entre janeiro/2014 e dezembro/2021 (n = 60) e caracterizámos aqueles com DRT previamente conhecida relativamente ao local de fim de vida (n = 53). Resultados: A maioria dos pacientes eram mulheres comidade mediana de 84 anos. Metade dos doentes encontrava-se em tratamento conservador, 43% em hemodiálise crónica e os restantes suspenderam diálise iniciada agudamente. Daqueles com DRT previamente conhecida, 18% morreram em casa. Não foi objetivada associação entre género, idade, cognição, status funcional, comorbilidades, etiologia da DRC ou modalidade de tratamento da DRT e o local de óbito. A anúria e a menor sobrevida após suspensão de diálise associaram-se a um fim de vida no hospital e verificámos uma tendência para o fim de vida em casa nos doentes com mais tempo de acompanhamento pela ECP. Conclusão: O fim de vida no domicílio é possível num programa domiciliário de cuidados paliativos, independentemente de idade, sexo, etiologia da DRC, principais comorbilidades e modalidade de tratamento. A anúria e o menor tempo de sobrevida após suspensão da TRS podem ser fatores limitantes. Um acompanhamento mais longo em cuidados paliativos pode favorecer o fim de vida no domicílio.

Dying with end stage kidney disease: factors associated with place of death on a palliative care program.

INTRODUCTION: End of life care of patients with end-stage kidney disease (ESKD) may be particularly challenging and requires the intervention of a specialized palliative care team (PCT). OBJECTIVE: To characterize the population of ESKD patients referred to a PCT and evaluate the determinants of planned dying at home. METHODS: We performed a retrospective observational cohort study of all patients with ESKD referred to our PCT between January 2014 and December 2021 (n = 60) and further characterized those with previously known ESKD regarding place of death (n = 53). RESULTS: The majority of the patients were female and the median age was 84 years. Half of the patients were on conservative treatment, 43% were on chronic hemodialysis, and the remainder underwent hemodialysis on a trial basis and were subsequently suspended. Of those with previously known ESKD, 18% died at home and neither gender, age, cognition, performance status, comorbidities, CKD etiology, or treatment modality were associated with place of death. Anuria was significantly associated with dying at the hospital as was shorter time from dialysis suspension and death. Although not reaching statistical significance, we found a tendency towards a longer duration of palliative care follow-up in those dying at home. CONCLUSION: Dying at home is possible in a palliative domiciliary program regardless of age, gender, etiology of CKD, major comorbidities, and treatment modality. Anuria and shorter survival from RRT withdrawal may be limiting factors for planned dying at home. A longer follow-up by palliative care may favor dying at home.

Palliative care in heart failure.

INTRODUCTION: Heart failure is a prevalent clinical syndrome with high morbidity and mortality rates. Palliative care has an important role in symptomatic control. This study was designed to characterize the population referred to a palliative care unit and to identify those who benefit from early and regular intervention. AIMS: To characterize heart failure patients referred to a Palliative Care Team and identify those who would benefit from a regular intervention. METHODS: We performed a retrospective analysis of all the heart failure patients referred to our palliative care team between January 2015 and December 2017. RESULTS: A total of 54 patients were included with a mean age of 80 years. The mean score on the Palliative Performance Scale was 57. The median duration of disease was 46 months, 61.1% of patients were in NYHA class III, 57.4% had ejection fraction >40%, and 51.9% had ischemic cardiomyopathy. Most patients (94.4%) were referred during hospitalization; 60.8% were discharged, half with home-based assistance. Mortality one month after referral was 53.7%, and 83.3% after six months. We found no variables predictive of mortality within a month of referral. CONCLUSIONS: This study contributes to the characterization of the heart failure population referred to palliative care. No clinical sign was predictive of one-month mortality, but the high mortality rate shows that patients are referred in advanced stages of the disease or frailty.

Predicting prognosis in patients with advanced cancer: A prospective study.

BACKGROUND: Prognosis is one of the most challenging questions with which physicians are confronted. Accuracy in the prediction of survival is necessary for clinical, ethical, and organizational reasons. AIM: Evaluate young doctors' clinical prediction of survival and the aids they could get: expert opinion, Palliative Prognostic score, and Palliative Prognostic Index. DESIGN: Prospective, observational study. SETTING/PARTICIPANTS: Advanced cancer patients under observation of an inhospital palliative care team, from April to July 2014. A total of 38 patients were included, mostly male (65.8%), average age 68.5 years. Average survival time was 24 days. Follow-up concluded with death or after 90 days. RESULTS: Young doctors' clinical prediction of survival was adequate at 10.5%, with 55.3% severe errors in an optimistic direction. Palliative care experts were more adequate (23.7%) and made less severe errors (42.1%). Palliative Prognostic score and Palliative Prognostic Index were even more adequate (47% and 55%, respectively) and made even less severe errors (0% and 11%, respectively). The best correlation with observed survival was achieved when palliative care experts used palliative prognostic score ( rs = -0.629; p < 0.01). CONCLUSION: Young doctors' clinical prediction of survival is often inadequate. Palliative Prognostic score, which includes clinical prediction of survival, calculated by palliative care experts had the best performance. Our results support the recommendation of using clinical prediction of survival together with prognostic scores.

A survey of the sedation practice of Portuguese palliative care teams.

AIM: The purpose of this study is to study the practice of sedation by Portuguese palliative care teams. METHODS: The teams included on the website of the Portuguese Association for Palliative Care were invited to participate. Data from all the patients sedated between April and June 2010 were recorded. Sedation was defined as the intentional administration of sedative drugs for symptom control, except insomnia, independently of the consciousness level reached. RESULTS: Of the 19 teams invited only 4 actually participated. During the study period, 181 patients were treated: 171 (94 %) were cancer patients and 10 non-cancer patients. Twenty-seven (16 %) patients were sedated: 13 intermittently, 11 continuously, and 3 intermittently at first then continuously. The rate of sedation varied substantially among the teams. Delirium was the most frequent reason for sedation. Midazolam was the drug used in most cases. In 21 cases of sedation, the decision was made unilaterally by the professionals; in 16 (76 %) of those, the situation was deemed to be emergent. From the patients on continuous sedation, 9 (64 %) patients maintained oxygen, 13 (93 %) hydration, and 6 (43 %) nutrition. Two patients who had undergone intermittent sedation were discharged home and one was transferred to another institution; the reason for sedation in the three cases was delirium. CONCLUSION: There is a substantial variation in the sedation rate among the teams. One of the most important aspects was the decision-making process which should be object of reflection and discussion in the teams.