Kidney health

When should doctors inform people of a mild kidney impairment?

The people we spoke to were having regular blood tests, which included checking their kidney health, as well as in some cases to monitor other medical conditions they had. But not all of them knew that their kidneys were being monitored, or that their kidney function was decreased, before they were invited to take part in research.
Doctors and nurses in general practice tend to think of a mild kidney impairment mainly as a risk factor for other health problems and a possible complication of other conditions such as diabetes and high blood pressure, rather than a disease in its own right (See ‘Why is kidney health important?’). GPs may worry about informing their patients about a mild kidney impairment for fear of making them unduly anxious. As many patients with a mild kidney impairment are already being monitored and managed for high blood pressure or other co-morbidities, GPs may not want to burden patients with additional information that is going to make no difference to their clinical management.
Also, making a diagnosis of decreased kidney function is a process over time rather than a single, clear event as it requires repeated blood and urine tests. Therefore, health professionals might sometimes choose to gradually drip-feed information about decreased kidney function to their patients rather than communicate an actual ‘diagnosis’ in a more direct way. In some cases, they may even decide not to inform patients of a mild kidney impairment unless the decline in kidney function progresses to a more serious level.

We asked the people we talked to about their views on whether GPs should inform their patients of a mild kidney impairment. People differed greatly in their personal information preferences. Eric thought doctors had a moral duty to promptly pass on any kind of diagnostic information to their patients. Sarah said that “knowledge is power” and was annoyed when she found out about her kidney impairment from a copy of her test results six months after the diagnosis had originally been made. Laura felt that even though the diagnosis had worried her at the time, it had been important to face up to things and work it through psychologically. Martin felt certain that nowadays doctors were very unlikely to withhold information from their patients.
Some people, who had found out quite recently that their kidney function had been impaired and monitored for a considerable amount of time but who had not been aware of their diagnosis, said they were glad they hadn’t been told previously. Bernard, whose kidney function showed a rapid decline after he contracted pneumonia and was prescribed diuretic medication, thought even with hindsight that it’s best to “leave well alone”, while his wife Shelley, who had a nursing background, liked to be as informed as possible. Elizabeth didn’t know for six years that she had chronic kidney disease but said she was glad she didn’t know about her kidney impairment any earlier, as it would have made her worry even more. Betty said she wouldn’t want to know any kind of diagnosis unless it was a matter of life and death, and Ken commented that “ignorance is bliss”.
There was a general acknowledgement amongst the people we talked to that ‘getting it right’ for each individual patient must be challenging for doctors and nurses. People thought it was important for health professionals to be flexible in their approach and make an effort to know their patients as people, so that they would be able to judge how much information an individual could cope with based on their knowledge of that person. However, people also commented that it could be difficult to achieve personal continuity of care with a dedicated GP and build a long-term relationship when current appointment systems may make it difficult for patients to see the same doctor each time.
Some people we spoke to described having received only vague and partial information from the health professionals they had seen, resulting in them being uncertain as to whether their kidney health was something they should try and find out more about (see also ‘The words doctors used to explain kidney impairment’ and ‘People’s ongoing information and support needs’).

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