Author: Dr Nandini Vallath
“Never believe that a few caring people can’t change the world. For, indeed, that’s all who ever have….”
India hosts a high burden of patients with chronic kidney disease, and it is estimated that 90% of them remain undetected and may die without accessing any kind of care. This also means that whatever data that we access from research papers represent just the remaining 10% of patients who actually reach the healthcare service. This is also the reason why the prevalence figures for End Stage Renal Disease in India varies from one study to another and any where between 129 – 229 per million population, with one study done in southern region of the country suggesting 870/million.
In patients with renal failure, dialysis is a valuable symptom management strategy while the patient awaits transplant, the disease modifying intervention. A 2002 study followed up 10,000 patients on dialysis. They observed that 40% of these patients had arrived for the first time to a healthcare service when they required emergency dialysis. They also noted that 60% of patients were lost to follow up. Another study in 2018, studied 13,140 patients on dialysis, and only 2% of them eventually had a kidney transplantation. 64% of patients discontinued dialysis and 17% died while still on dialysis. These numbers underscore the tremendous need for renal supportive care in the country; and not to forget the 90% who never ever reached the healthcare facilities. These are also the patients who may drift into a palliative care OPD, seeking help for their distressful symptoms, without a clear diagnosis of an advanced progressive illness.
This article briefly relates the serendipitous story of renal supportive care in India; But first and foremost, the story of generosity of spirit. Dr Frank Brennan, the renal supportive care consultant at St. George Hospital Sydney, and a core humanist and ethicist, is the true force behind whatever little that we have achieved in India Today.
It was in 2018, at the 25th International Conference of Indian Association of Palliative Care, held at the All India Institute of Medical Sciences, New Delhi, that I met Frank. He was there as an invited faculty and gave a deeply insightful lecture on the need and possibilities of renal supportive care (RSC). His gentle, open, and unassuming nature definitely influenced our interactions and discussions transitioned to planning. We exchanged emails and continued our planning conversations. Coincidentally this was also the time, when the possibilities of Project ECHO had initiated, and a super hub had recently been established in India. All of these nourished the first seeds and fructified as a series of online academic sessions on Renal supportive care planned at 6.15 AM IST (10.40 AM at Sydney) every month. You can appreciate the true yearning of the practitioners in India, to learn, improve competencies and provide better quality care for their patient populations.
The structure and processes of Project ECHO supported distance learning in a very creative, effective, and efficient manner; with Dr Brennan sitting in Sydney and the learners, the palliative care team, the palliative care physicians, and nephrologists from across India connected seamlessly. Each session consisted of didactic by Dr Brennan on a main RSC theme (symptom management, advance care planning as well as decision making around dialysis withdrawing and withholding dialysis and care of the dying patient) coupled with discussions on a patient case presented by one of the participants. The complex issues of that one case brought forth concerns faced by others at their own clinics. The sessions became interesting and engaging all the more, due to the approach and teaching style of Dr Brennan. We could watch deep listening in action, as the questions rolled, and he provided the contextual responses to them. For those unanswered, he would always come back later with recommendations based on his diligent search from recent literature or through discussions with his nephrology colleagues back home. His unique style of teaching, weaving narratives, and stories as part of the teaching methodology was at once endearing, practical and deeply impactful.
The participants of this ECHO series were senior practitioners and teachers of palliative care and they expressed deep commitment by attending all of the 8 sessions that were organised. They were also 2 additional sessions with nephrologists from the St. George Institute, Sydney as well as from India responding to clinical and practice related questions of the participants….again, a story of generosity of spirit here
While we were thus exploring the nuances of renal supportive care, The Kidney International, a most authoritative journal, published its landmark paper on ‘Increasing access to integrated end stage kidney disease care as part of Universal Health Coverage’. This paper authored by David Harris and colleagues, created ripples in the nephrology circles. The article specifically emphasised on integrating dialysis, transplantation as well as ‘comprehensive conservative care’ as the end stage renal disease treatment options. It recommended conservative care as an effective alternative under two settings; i) where the conservative care is chosen by the patient or is medically advised due to the medical status and co morbidities of the patient; and ii) where it is to be facilitated – for those who were “choice restricted”due to lack of access to any other option. The second set is where majority of Indian patients fit in. What else can we say except that it was time for India to get her act together!
Renal supportive care in India is also a story of collaboration and charismatic leadership. By 2019 KMC Manipal under the leadership of Dr Prabhu, Faculty of the Nephrology Department and Dr. Naveen Salins, In-charge in Palliative Medicine sought and organised a master class in renal supportive care. The select audience consisted of nephrologists representing academic institutions of India and National faculty in palliative care. Dr Brennan and I co-led the event. This was indeed a period of transitions….in mindsets; in attitudes towards patients with kidney disease who cannot fit into the healthcare systems and also.. transitions in focus on the disease towards the person who has the disease.
The master class was organised such that specific outcomes were achieved. The faculty from palliative care as well as nephrology were divided into six groups. They were to interact, and organised thoughts based on the specific theme given to them. The expectation was that they develop recommendations that is contextual to India and supported by evidence as well as practical for day today applications.
What are outcomes that we can be proud of today?
Some of the nephrologists disseminated their learning within their regions – e.g: effort by Dr. Ashok Kriplani through the “Mumbai Nephrology Group”; and an open, online webinar by Dr Vivekananda Jha. The Indian Nephrology Association organised a session on RSC during their national conference.
The Department of Nephrology from a tertiary care general hospital supported the integration of RSC within its academics and clinical work. This complex endevour was amply supported by the medical students, interns, the division of Medical Humanities of this centre as well as volunteers from the community who were open to learning and contributing.
The dedicated academics teamwork done by the six groups during the master class at KMC Manipal did not cease at the end of the workshop. They continued engaging together and completed the tasks of creating recommendations for the theme given to them with as much literature support as possible. The content created by these teams are now ready and will be published through a special supplement of the Indian Journal of Palliative Care this year . Besides providing approach care of Chronic Kidney Disease patients at different trajectories, the supplement features symptom management algorithms to approach and manage the most common concerns seen in such patients.
Another point of impact which I would like to mention here is that India has been invited this year as a member of the working group on conservative kidney management; organised by the International Society of Nephrology. The voice from India will be expressed in the ‘Strategic plan for integrated care of patients with kidney failure’.
All in all, renal supportive care in India is a story of commitment, focused leadership, mentoring, partnership and a story of love for India. It is also the story of acceptance, dissemination and motivated volunteering.