#1563 Family feedback survey on quality of dialysis withdrawal and end-of-life care on hemodialysis patients in an ICU – a single-center study from India
Authors: Nagaraju Shankar Prasad , Aziz Asbin , Damani Anuja Dwarkadas , Salins Naveen , Rao Krithika S , Swaminathan Shilna Muttickal , Bhojaraja Mohan V , Attur Ravindra Prabhu , Rangaswamy Dharshan , Rao Indu Ramachandra , Shenoy Srinivas Vinayak 
Published: May 2024

Abstract

Background and Aims
End-of-life care in hemodialysis is emerging, with limited implementation in developing countries. There is a sparsity of data on dialysis withdrawal and the quality of end-of-life care in these regions. Developing countries differ in their cultural, social, and spiritual practice compared to the Western world and family plays a major role in decision-making. No survey has been done on family's perception of dialysis withdrawal and end-of-life care in our settings. So, we studied feedback from families regarding the quality of dialysis withdrawal and end-of-life care provided to maintenance hemodialysis (MHD) patients admitted to our intensive care unit (ICU).

Method
This study was conducted at Kasturba Medical College, Manipal, MAHE, Manipal, India between January 2020 to October 2022 involving the data from end-stage kidney disease (ESKD) patients on MHD admitted in the ICU, who had withdrawn from dialysis before death and received end-of-life care as per the hospital policy (Blue Maple) from Renal supportive and Palliative care team. The baseline data was collected for all patients and indications for withdrawal of dialysis and ICU treatment and end-of-life care provided were collected. The next of kin were interviewed by telephone by a single interviewer using a modified Quality of Death and Dying questionnaire. The data was analyzed using SPSS 20

Results
Among 98 ESKD patients on maintenance hemodialysis who died in our ICU, 23 were referred to Palliative care, counselled, had withdrawal of dialysis at least 48 hours before death and received end-of-life care. Table 1 outlines baseline characteristics. The mean age was 57 ± 12.09 years, with a male predominance (82.6%). Common comorbidities included hypertension (100%), type 2 diabetes (69.5%), and ischemic heart disease (65.2%). The primary cause for ICU admission was infectious disease (47.8%). The majority of reasons for dialysis withdrawal and end-of-life care were worsening hemodynamic status (82.6%) and illness deterioration (69.5%). After consent and establishment of futility, dialysis withdrawal was done for all patients (100%), No CPR for 100%, withdrawal of inotropes in 50%, and withdrawal of ventilator was done in 80% of the patients.
A successful telephonic interview/survey was conducted with 21 out of the 23 subjects, with the majority of next of kin being the spouse (47.6%) followed by children (33.3%) and siblings (14.3%). The questionnaire and response are given in Table 2. All expressed a need for palliative care involvement. 82% accepted the decision of dialysis withdrawal and end-of-life care put forth by the doctor's team without difficulty;74% of families were present with the patient in their final hours and were grateful for the same 20% had their spiritual leader to visit during the end-of-life event. None of the family members (100%) interviewed had a guilty feeling and all had a positive rating on the involvement of the palliative care team and the need to ease patients' distress and suffering during their final hours (100%). Unfortunately, none of the patients had prior discussions of advance care planning (ACP) with their doctors regarding end-of-life care before the specific event

Conclusion
Our study highlights that families agree with the withdrawal of artificial life support measures, such as MHD, CPR, withdrawal of inotropes, and/withdrawal of ventilator in ICU settings when these interventions are considered futile for end-of-life care in ESKD patients. It also emphasizes the need for ACP, and early integration of palliative care for discussions about dialysis withdrawal, and withholding futile interventions at end-of-life care in ESKD patients, especially in resource-constrained settings like ours, for high-quality end-of-life care. This will also lead to better end-of-life care outcomes and improved patient and family satisfaction with care.