When it comes to CKD we need to tell patients the whole story
The kidney tsar thinks it’s unethical not to give patients their exact diagnosis – but Margaret McCartney wonders what the benefits are in a label.
This month's British Journal of General Practice contains a challenge. It's an editorial titled ‘Telling the truth – why disclosure matters in chronic kidney disease' written by Dr Donal O'Donoghue, the renal ‘tzar', and colleagues – none of whom, notably, are based in primary care. It begins: ‘The dynamics of the doctor-patient relationship have evolved over recent decades from a model of benevolent paternalism to a framework centred around shared decision making for which patients' awareness of their diagnoses, and hence disclosure of diagnoses by healthcare professionals, are prerequisites.'
So far, so good. Of CKD diagnosis, they say that not telling patients is wrong: ‘Such practice is divergent from a patient-centred approach to chronic disease management.' They conclude that ‘we should not forget physicians have a duty, both morally and legally, to disclose truths that patients could reasonably be expected to be told in a sensitive way they would understand.'
This is a thoroughly ironic misplacement of ethics. It's absolutely necessary that patients should know what's in their notes. But it's also imperative patients are given the opportunity to decline testing when the results may give rise to unforeseen dilemmas and uncertainties.
Effectively, we have moved to CKD screening without adequate explanation or consent. We used to check renal function and get a urea and creatinine by return – now we have an eGFR and, if necessary, a stage of CKD from one to five. This is new, but have we done patients any favours?
The new test has created a group of patients who have CKD 3 but who are already having their hypertension, cholesterol or other cardiovascular risk managed. They have been given a new diagnosis – they are told that their kidneys are not working perfectly. Is this useful?
This month, the US Preventive Services Task Force, a redoubtable organisation that demands evidence before action, published its systematic review on screening, monitoring and treatment of CKD, and concluded: ‘The role of CKD screening or monitoring in improving clinical outcomes is uncertain. Evidence for treatment is strongest... in patients with albuminuria combined with diabetes or cardiovascular disease.' Which is what we've been doing anyway, whatever the grade of CKD.
It seems unfair that we concentrate on telling people the results of their CKD test without also informing them about the problems the test may create. I can't be the only GP who has noted the difficulties with holiday insurance this label has caused. Nor have we adequately studied the harms an additional diagnosis, which comes with limited opportunities to alter it, delivers to the patient. For some, being told they have something else wrong is upsetting and demoralising. I'm also troubled by the suggestion from O'Donoghue's editorial that patients with CKD will alter their lifestyles more effectively when given their diagnosis. It would be better if all people who had risk factors for CKD and cardiovascular disease could take up appropriate advice.
We are doing tests capable of a negative impact on patients without a the opportunity to reverse the results. Instead of fretting about patients having ‘non-disclosure' of their diagnosis, it would be better to concentrate on the ethical and moral issues of testing without adequate informed consent.
Dr Margaret McCartney is a GP in Glasgow