Choosing whether someone lives or dies is hardly most people’s idea of an easy decision. But for Sir Mark Hedley, who in January retired from his role as a judge at the Court of Protection, arbitrating over life and death can be the least complex part of the job.

The court’s role is to make major care and medical decisions on behalf of those deemed to lack mental capacity. The court can rule on everything from where a person should live, to granting permission for an abortion, to whether life support machines can be switched off.

“In a lot of these life-and-death decisions, actually everyone knows what the answer’s going to be – and if there were a serious doubt then you wouldn’t be making a life-or-death decision, you’d be erring in favour of life,” he explains. “The ones where you’re authorising the end of life are ones where you’re pretty crystal clear in your own mind… In the life-and-death ones, for the most part, I don’t think I’ve had a huge amount of difficulty in deciding in my own mind what the right answer is.”

Throughout his career, Sir Mark, 66, has faced some of the most critical life-and-death cases the bench can throw up. In 2004, he ruled in the notorious case of the premature baby Charlotte Wyatt – deciding that her life support machines should be turned off.

“Part of welfare is having a proper place for a ‘good death’,” he says of the case. “Although it’s very difficult to define what a good death is, it’s quite easy to define what it’s not. There’s a natural human longing to have a good death and part of welfare is to permit that happening. That, for me, manifests itself principally in babies that if they’re going to die, they should die in the arms of parents and not wired up, isolated from human contact, in the course of some futile treatment or other.”

Telling desperate parents that their baby should not be kept alive sounds impossibly difficult. But Sir Mark says that when it comes to the law, there are much harder calls to make. “The hardest decisions are often those where you’ve got real choices that are fundamental to people’s quality of life, often because they haven’t got very much of life left,” he says.

“And for me, people’s emotional welfare towards the end counts for rather more than anything else. The fact that you can add a few months on to their life by good physical care is not irrelevant, but it doesn’t weigh very heavily with me.”

The case he found trickiest came about four years ago, in the early days of the Court of Protection. Like almost all of the court’s cases it was never reported, but involved a woman with “major learning difficulties” who was institutionalised and a chronic smoker. She was at serious risk of gangrene and he had to decide, “Do you take a leg off or just let her smoke herself to death?”

“That I suppose was a more difficult one, because it was one of those where the evidence was she wouldn’t understand what anyone was up to if they took her leg off, and she’d never emotionally recover from it and the rest of it,” he recalls. “The medics were completely divided about what should happen. That was a difficult one because there was a real choice there. I decided they weren’t to take her leg off.”

Sir Mark’s presence on the bench will be missed by journalists, for whom he became a champion in recent years, opening up the previously closed court to media scrutiny.

He made legal history in May 2010 as the first judge who allowed journalists into the Court of Protection. The case, which The Independent campaigned for the right to report on, decided the fate of the autistic pianist Derek Paravicini, whose family successfully applied to make decisions on his behalf.

Since then, the court has been opening up ever more to the press, a move that Sir Mark supports. He says: “I would like us to do as much in public as we can, for our own sakes as much as anybody else’s, because nobody particularly wants to be the subject of complaints about secret courts and so on where they shouldn’t be. My opinion is that on the whole we shouldn’t be frightened of publicity.”

He adds: “Frankly it leads to more sympathetic as well as more accurate reporting, because there’s a sudden realisation that these cases can be quite difficult.”

But he has more reason than most to be sympathetic to journalists. “I come from a journalistic family, so I’m probably less anxious about the press than some are,” he says. “I’ve known lots of good members of the press and I’ve no reason to think they’re out to get me.”

He was brought up in Marylebone, central London, so that his father could be near Fleet Street, where he would work until the early hours as chief sub-editor at the Daily Express. His brother followed their father into the trade and is a sub-editor at the Sunday People.

But not everyone in the judiciary shares Sir Mark’s view of the media. “Perhaps some took the view that I was willing to stick my neck out more than most,” he concedes – although he is diplomatic about the reactions of his fellow gavel wielders. “There was a certain amount of shrugging of shoulders and that sort of thing, but there were no ‘barbarians at the gates’ kind of anxieties.”

Explaining the nervousness of some, he says: “You have to take the culture into account. The whole culture of the Court of Protection was that it was in private. It was about including people that had never been included.”

He hopes the rules will now change to make things even simpler to report. At the moment judges have to decide at each hearing of each case whether the press can attend, meaning laborious requests at every stage. Sir Mark believes this could be simplified so that the first judge’s ruling about publicity applies throughout the case.

“I think the best you would hope for in a change is so the burden is reversed, so that if a judge gives permission for publication then that will apply throughout [each court hearing] unless someone changes it,” he says. “Whereas at the moment the assumption each time you go into court is privacy unless the judge rules that there’s good cause.”

The court is busier than ever – it now hears more than 24,000 cases a year. Sir Mark thinks this caseload is only going to grow. “The Court of Protection is going to be the jurisdiction of the future, I suspect,” he says.

“I think there are three reasons for it. One is far more disabled youngsters are surviving into adulthood than was ever the case. Secondly, we have a much greater understanding of learning difficulties and learning incapacities and the consequences of those. And thirdly we just have a much larger ageing population and all the consequences of dementia and allied conditions.”

As the caseload continues to grow, he is concerned that changes to legal aid will make it harder for justice to be done, as it is increasingly hard for those families who disagree with the wishes of their mentally impaired relatives to get separate legal representation.

“It’s difficult for people who are not ‘P’ [the patient] to get legal aid,” he explains. “I suspect ‘P’ will be publicly funded in one way or another. But if you’re the family … well, you get a lot of family members acting in person.” Sir Mark believes an increase in cases where family members represent themselves “could seriously impair justice in the cases where facts or diagnosis are an issue”.

A recurring issue for Sir Mark during his time on the bench has been his own faith. A practising Christian, he came under fire from The Guardian for being the most senior judge in the Lawyers’ Christian Fellowship, a group which has campaigned for socially conservative causes, including changes to the abortion law.

He is defiant about the influence of religious beliefs on the judiciary. “Of course our views influence our decision-making,” he says. “It’s hardly worth having a faith if it doesn’t influence you. What you have to do is remember you’re administering a secular law, because from a faith point of view, I remind myself regularly that all Christians are volunteers, so you can’t compel the faith on anybody. If people choose to live their lives in some other way then that’s up to them and I respect that.”

He adds: “The question is the extent to which you make allowances for [faith]. So, for example, you’ll find me quite strong on personal autonomy, because I consciously have to keep in mind the fact that people are allowed to make their own decisions, whatever I might think of those decisions. The great question for judges in most of these cases is, ‘what is the proper subject of my responsibility here?’ And if it’s not my responsibility, then whatever I think of it, I stay out of it. If it is my responsibility, well, then I have to do it within the integrity of my conscience.”

Court of protection: landmark cases

Future care

Derek Paravicini, a 30-year-old blind and autistic pianist, made legal history in 2010 when the Court of Protection was opened to the media for the first time as his care was discussed. His parents and sister were eventually given the power to look after his welfare.

Deprivation of liberty

Mark Neary won a landmark court victory in 2011 after a local council unlawfully separated him from his autistic son, Steven. His son was awarded £35,000 in damages and the judge said a “lesser man” might never have got his relative back.

First public sentencing

Earlier this year, Wanda Maddocks became the first person known to be jailed by the court when she got a five-month sentence for contempt. The sentence was delivered in private with Maddocks neither present nor represented by a lawyer.

Right to request abortion

In January the court was asked to decide whether a young pregnant woman with sickle cell anaemia and impaired mental faculties should be allowed to keep her unborn child. The judge ruled that while the woman lacked the ability to litigate, she had enough capacity to decide to continue with her pregnancy.

Capacity for sexual consent

In 2011 a judge ruled that a gay man with an IQ of 48 should be stopped from having anal sex because he lacked capacity to consent to sexual relations. However, the judge also accepted that he might be able to make decisions about safe sex with the right sex education.