Right to know

How can you consent when you have no knowledge?   You may imagine this seems obvious.  So obvious it doesn’t need to be explained.     But it wasn’t always like this.

Consent, knowledge, making informed choices, has shifted into the foreground of medical treatment.   But even now the law’s interpretation of consent is still evolving.

In my chaotic childhood in the early 1960s Doctors, Social Workers, Lawyers, Teachers, all knew what was right.   As did some family members, that is the ones who weren’t looking after the family.  And, of course, Magistrates, and Judges, they really did know what was right.

Children didn’t.  And weren’t asked their opinions, or thoughts.  Or anything.

Parents, well, they were some way down the pecking order, too; and they were told what they should tell, and what they should not tell, their ungrateful offspring.

In the early 1980s my father died from stomach cancer.  He was 48.  Before he died he became a minor media personality because of his cancer (which wasn’t talked about much then).  Or rather, to be precise, because he claimed he had a right to know about his diagnosis of cancer before his pointless surgery was performed.

Chat-shows and tabloid newspapers found newsworthy his grim determination to hold a mirror up to the know-it-all medical profession.

His complaint was that Doctors decided to perform surgery just to have a look inside his tumour-ridden digestive system.   At that time there was no Access to Medical Records Act 1988, no entitlement to read your own medical records.   Doctors knew best.   They told you what you should be told to you. They decided what you should know. If they decided they’d cut you open to have a look, that was justified, even if they didn’t need to (because they knew), and even if the surgery would make no difference. My father disagreed.

Later in the 1980s the case of Sidaway v Board of Governors of the Bethlem Royal Hospital (so Dickensian sounding!) started to re-write the terms of the duty owed by Doctors concerning consent.

Sidaway moved the focus from Doctor knowledge, to patient knowledge.

Now, even though our expectations are now heavily weighted in favour of knowledge, Doctors, and other health professionals, still fail to discharge this duty.

It isn’t enough that consent forms are pages long, that the consent-obtaining process is a formal stage of many treatments, including surgery, forms still get changed after treatment, or don’t get signed at all, or miss out key details of the treatment planned, or are pure fiction in the sense that the patient may have signed but never read, or never had explained, what he or she was/is consenting to.

There may be a right to know, but, sadly, as lawyers who practise in this area of law do know, it is usually not the right itself that is our concern, but the failure to honour the right, the failure to enable a patient to exercise the right, and the consequent detriment to a patient resulting from the lack of knowledge of risks.