Kidney supportive care: an update of the current state of the art of palliative care in CKD patients / Cuidados de suporte renal: uma atualização da situação atual dos cuidados paliativos em pacientes com DRC

ABSTRACT Chronic kidney disease (CKD) has become a public health burden worldwide for its increasing incidence and prevalence, high impact on the health related quality of life (HRQoL) and life expectancy, and high personal and social cost. Patients with advanced CKD, in dialysis or not, suffer a burden from symptoms very similar to other chronic diseases and have a life span not superior to many malignancies. Accordingly, in recent years, renal palliative care has been recommended to be integrated in the traditional care delivered to this population. This research provides an updated overview on renal palliative care from the relevant literature.

RESUMO A doença renal crônica (DRC) tornou-se um peso na saúde pública em todo o mundo por sua crescente incidência e prevalência, seu alto impacto na qualidade de vida relacionada à saúde (QVRS) e na expectativa de vida, e alto custo pessoal e social. Pacientes com DRC avançada, em diálise ou não, sofrem de uma carga de sintomas muito semelhantes aos de outras doenças crônicas, e têm uma sobrevida não superior àquela de muitas doenças malignas. Assim, nos últimos anos, recomenda-se que os cuidados paliativos renais sejam integrados aos cuidados tradicionais prestados a essa população. Este trabalho fornece uma visão geral atualizada sobre os cuidados paliativos renais discutidos na literatura relevante.

Kidney supportive care: an update of the current state of the art of palliative care in CKD patients.

Chronic kidney disease (CKD) has become a public health burden worldwide for its increasing incidence and prevalence, high impact on the health related quality of life (HRQoL) and life expectancy, and high personal and social cost. Patients with advanced CKD, in dialysis or not, suffer a burden from symptoms very similar to other chronic diseases and have a life span not superior to many malignancies. Accordingly, in recent years, renal palliative care has been recommended to be integrated in the traditional care delivered to this population. This research provides an updated overview on renal palliative care from the relevant literature.

Palliative Renal Care and the Covid-19 Pandemic.

INTRODUCTION: Palliative care is an approach aimed at relieving suffering, controlling symptoms and seeking to improve quality of life. It must be offered in conjunction with standard treatment for any disease that threatens the continuation of life, such as a Covid-19 infection. DISCUSSION: The bioethical principles and strategies used by palliative medicine can assist nephrologists in the care of patients with renal dysfunction, who face the difficulties of isolation at the beginning and follow-up of dialysis in outpatient treatment, and those who are at risk for a more serious disease progress. Some of them: - a Shared decision making, which enables the patient and family to participate as facilitators in the systematization of the team's reasoning, in addition to respecting the principle of autonomy; - Symptom Management: which should be a priority to ensure relief of suffering even in times of social isolation; - Communication skills: making it possible to alleviate suffering in announcing bad news or complex decisions through communication techniques;; - Bereavement assistance: which in acute situations such as the pandemic, causing unexpected losses, the importance of sympathy from healthcare professionals becomes even greater. CONCLUSION: The principles of palliative care are essential to face the challenges of a planet-wide crisis, which raises human suffering in all dimensions, and which requires the construction of strategies that can keep patients assisted, comfortable and with measures proportional to their clinical condition and preferences.

Palliative renal care and the covid-19 pandemic / Cuidado paliativo renal e a pandemia de Covid-19

ABSTRACT Introduction Palliative care is an approach aimed at relieving suffering, controlling symptoms and seeking to improve quality of life. It must be offered in conjunction with standard treatment for any disease that threatens the continuation of life, such as a Covid-19 infection. Discussion The bioethical principles and strategies used by palliative medicine can assist nephrologists in the care of patients with renal dysfunction, who face the difficulties of isolation at the beginning and follow-up of dialysis in outpatient treatment, and those who are at risk for a more serious disease progress. Some of them: - a Shared decision making, which enables the patient and family to participate as facilitators in the systematization of the team's reasoning, in addition to respecting the principle of autonomy; - Symptom Management: which should be a priority to ensure relief of suffering even in times of social isolation; - Communication skills: making it possible to alleviate suffering in announcing bad news or complex decisions through communication techniques;; - Bereavement assistance: which in acute situations such as the pandemic, causing unexpected losses, the importance of sympathy from healthcare professionals becomes even greater. Conclusion The principles of palliative care are essential to face the challenges of a planet-wide crisis, which raises human suffering in all dimensions, and which requires the construction of strategies that can keep patients assisted, comfortable and with measures proportional to their clinical condition and preferences.

RESUMO Introdução O cuidado paliativo é uma abordagem voltada para alívio do sofrimento, controle de sintomas e melhora da qualidade de vida. Deve ser oferecido em conjunto com o tratamento padrão de qualquer doença que ameace a continuidade da vida, como, por exemplo, a infecção pela Covid-19. Discussão Os princípios bioéticos e as estratégias utilizadas pela medicina paliativa podem auxiliar os nefrologistas no cuidado dos pacientes com disfunção renal, que, além de serem do grupo de risco para evolução mais grave da infecção por coronavírus, enfrentam as dificuldades do isolamento no seguimento do tratamento dialítico e ambulatorial. Essas ferramentas são: I) tomada de decisão compartilhada, que proporciona a participação do paciente e dos familiares como facilitadores na sistematização do raciocínio da equipe, além de respeitar o princípio da autonomia; II) manejo de sintomas, que deve ser prioridade para a garantia do alívio do sofrimento mesmo em momento de isolamento social; III) habilidades em comunicação, sendo possível amenizar dificuldades em anunciar más notícias ou decisões complexas através de técnicas de comunicação; IV) assistência ao luto, em que, em situações agudas como a pandemia, de perdas inesperadas, a importância do acolhimento dos profissionais de saúde torna-se ainda maior. Conclusão Os princípios dos cuidados paliativos são essenciais para enfrentar os desafios de uma crise humanitária, que causa sofrimento ao ser humano em todas as dimensões e exige a construção de estratégias que possam manter os pacientes assistidos, confortáveis e com medidas proporcionais à sua condição clínica e às suas preferências.

The need for training in palliative care for physicians in other specialties: Brazilian nephrologists empowerment (or appropriation) on renal supportive care.

BACKGROUND: Renal Supportive/Palliative Care is gaining gradual recognition as a patient-centered care approach that should be integrated to the traditional disease-centered model of care, mainly in elder patients with advanced chronic kidney disease (CKD). The objective of this study was to assess knowledge, perceptions, attitude, experience and interest in palliative care among renal care providers. METHODS: Online survey, administered between May 23 to June 13, 2017 to members of the Brazilian Society of Nephrology (BSN). Participants self-reported knowledge and behaviors regarding renal palliative care. RESULTS: A total of 3,738 e-mails were sent, 224 (6%) providers completed the survey. Most respondents were under 50 years old (68.5%) and were nephrologists (98.2%). A request from a competent patient to discontinue dialysis would not be honored by 46% and 63% would probably continue dialysis if a patient become severely demented. On the other hand, respondents with ≥15 years of experience were more prone to stop dialysis (P=0.01) in patients who became permanently and severely demented. Respondents working only in private practice were more willing to continue dialysis in a severely demented patient than those working in a public healthcare system or both (P=0.02). Additionally, 87% of respondents would probably withhold dialysis in a permanently unconscious patient and 92% probably would not resuscitate a patient with a Do Not Resuscitate (DNR) order. Among factors that would have importance on a decision to not initiate dialysis, patient preferences (98.2%), advanced dementia (95%), poor clinical conditions (93.7%) and family wishes (92.3%) were top ranked by respondents. Most respondents routinely evaluate HRQoL (62%), pain and other symptoms ( 79%) and were very interested (96%) in improving knowledge about renal supportive care. CONCLUSIONS: Brazilian nephrologists are often unaware of patient autonomy, more prone to withholding than withdrawing dialysis and deem wishes of the family quasi as important as patient preferences in the shared decision making process. Most Participants answered to evaluate pain and quality of life related to health (HRQoL) routinely and have great interest to learn about renal palliative care.

Implementing a patient-centred outcome measure in daily routine in a specialist palliative care inpatient hospital unit: An observational study.

BACKGROUND: Gathering clinical evidence data on patients' palliative care needs is paramount to identify changes in outcomes over time and maintaining on-going quality improvement. Implementation of patient-centred outcome measures has been widely recommended. The routine use of these instruments in daily practice is challenging and not widespread. AIM: To implement a patient-centred outcome measure in daily practice and fulfil one quality indicator: improve pain during the 72 h after admission, in at least 75% of patients. DESIGN: An observational prospective study. The Palliative care Outcome Scale was used at admission (T0), third day (T1) and weekly. SETTING/PARTICIPANTS: Hospital palliative care unit with 17 individual rooms. All patients admitted to the unit were included in the study. RESULTS: Preliminary results ( N = 84) revealed inconsistent and missing data (14%). Symptoms were sub-optimally controlled by T1. Processes changed, and only a team member could apply Palliative care Outcome Scale. Doctors were encouraged to grasp the meaning of Palliative care Outcome Scale results for each patient. The post-pilot included 317 patients. No missing data occurred. There was an improvement in most items between T0 and T1: 'pain' and 'other symptoms' presented statistical significant differences ( p < 0.05). CONCLUSION: Implementing a patient-centred outcome measure in a hospital palliative care service is feasible and improves quality of care. Controlling high pain at T0 improved (>80%) by T1. Results became more consistent and symptom control was improved overall. Patients are evaluated based on holistic domains by an interdisciplinary team and we have added a much needed measure to help guide improvement of the quality of care provided.