Not many people will have heard of Donal O’Donoghue, He was a nephrologist from the North of England. He was a professor and very respected. When the role was introduced he become the Clinical Director of Nephrology for the NHS. He was known as the “Renal Tzar” a name he used when witing a regular blogs about kidney issues of the time. This is when I first heard of him around 14 years ago.
It was an article he wrote about the doctor – patient relationship . It stunned me. He encouraged patients to ” get off their knees ” and doctors to “step down from their pedestals”
He emphasised humility, partnership and patient centred care in medicine. It was his philosophy that healthcare should be collaborative rather than hierarchical.
By urging patients to “get off their knees,” he encouraged them to be active participants in their care, empowered to ask questions, make informed decisions, and engage in self-management. He viewed them as active participants not passive.
Whilst highlighting the need for clinicians to practice humility, listen actively, and respect patients’ perspectives.
A recent story on aHUS social media made me wonder about what Donal would say to the doctor and patient in the story.
The patient had been living with aHUS for 10 years in a shared care multidisciplinary arrangement with a haematologist and nephrologist. Most of those years there was not even an aHUS diagnosis.
There are several situations where an aHUS patient has to make a decision about their care. Transplants , pregnancy , treatment switching, treatment stopping and genetic testing. Proposals for each of these can be initiated by both the patient and doctor and discussed and decisions made on what is best to do.
In years the patient had aHUS there was no genetic testing done for a complement predisposition in the patient or of family members. The patient was keen to know. So the patient brought up the request from time to time. The nephrologist would recommend the patient ask the haematologist as it was presumed to have been done at the time of an aHUS diagnosis.
When asked the haematologist confirmed that no testing had been carried out and it was not needed now. He was of the mind that because the patient’s treatment was working no good would come from knowing about any predisposition to the disease. Treatment works so no need to fix it. End of discussion. The patient had to accept and go with flow, the haematologists was not perfect but there are so few doctors who are aware of aHUS.
But the patient continued to feel the need to know about there being a familial predisposition and whether it could have passed to a child. The patient had heard from others that they had had familial testing and they knew their families status too. The haematologist countered that with there may be no genetic reason found and if there was it did follow that someone would have the disease. So there was to be no genetic testing. Requested denied go with the flow.
The nephrologist was of the same opinion but for the reason that the patient would not come off treatment because the aHUS had left the patient with very little residual kidney function. In fact was also of the opinion was that the patient would not survive discontinuation of treatment.
The level of residual kidney was known but whether there was any genetic predisposition which would mean a certain relapse was not. As for an immediate death prognosis when a return to treatment was possible it suggests misunderstanding or lack of awareness of the stopping treatment protocols emerging from aHUS experts around the world. The patient was aware that others were doing so safely but the patient was not empowered to make that point.
More so as the “little residual kidney function” was at the top of 3a kidney disease. No action needed . In fact it was the haematologist who was monitoring the patients kidney results closely and supported the patient discussing results with the nephrologist. The haematologist was not so supportive when the patients asked to switch from eculizumab to ravulizumab. The immediate reaction was no – for the conservative “ain’t broke” reason given.
On a second request the patient explained about experiencing transport problems which were interfering with infusion visits and raising a concern about relapse if there was delay. Two month treatment intervals would be a lot easier for the patient finding transportation. The haematologist relented and a switch was made and has been the routine for six years, The patient stood up and doctor came down all for the better.
On the flip side when the patient had blood pressure problems reaching 180/120 the haematologist decided unilaterally to stop the complement inhibition treatment. Go figure given previous advice about not stopping treatment. Meanwhile the patient’s Primary Care doctors was working on adjusting BP meds. Treatment was discontinued for six months with no monitoring. Even the PC doctors was unsure that the haematologist would relent with their intervention. And the haematologist did. Phew. But six months in remission that is some knowledge gained. Particularly if that could be related to the patient’s genetic status for which testing has been denied. Go with the flow though..
Even a patient focussed PC doctor who is now in favour of and helping the patient get testing done remained wary that even with the knowledge the Haematologist and Nephrologist would then have, they would not sit down with the patient and together make a decision about discontinuation,
Maybe in the absence of any thing else accept the patient wanting to talk through the Global Action Patient Decision Aid for stopping treatment with them. That could be a starting point.
Both sides respectful and listening, both sides gathering the knowledge evidence needed. and taking mutual responsibility for the outcome they both decide on.
Donal would have welcomed the chance to do so in a multi disciplinary way including the PC Doctor and maybe an Expert Genetic Counsellor and how much better it could be for all.
Donal died in 2021 from COVID. when still at the height of his professional career. He is much missed by his colleagues patients and many friends worldwide. The Donal O’Donoghue Renal Research Centre and the annual O’Donoghue Lecture continue to honour his vision of a healthcare system where patients are partners and doctors serve with empathy and respect.
Professor Donal O Donoghue born15 August 1956 died 3 January 2021
Article No. 816
