Are doctors right to refuse patient’s demand to amputate his leg?

Nick Grey wants to have his right leg amputated just above the knee. The 54-year-old from Harworth, Doncaster, has been in constant pain since snapping a ligament in his knee in a football match 28 years ago.

Despite 12 operations, including a knee replacement, there has been no improvement. He believes the only option left is to have his leg removed.

‘I am such a burden to my family as I can no longer go anywhere or do anything,’ says Nick. 

‘I can’t do sports or be a father. I can’t walk our dogs or help my wife. When I do go out, I have to wear a leg brace and use crutches and stumble around, but the next day the pain is so bad I have to stay in bed with morphine patches. It’s no life.’

The former fireman and father-of-five believes he would have an improved quality of life as an amputee with a prosthetic leg.

But the medical team at Doncaster and Bassetlaw Teaching Hospitals NHS Foundation Trust, which runs his local hospital, disagree and have refused to carry out the surgery.

They have told him that he is experiencing phantom pain (from the original knee joint that was removed) and amputation would have no effect. ‘I don’t agree,’ says Nick. ‘If the leg was gone, there are ways to deal with phantom pain.’

He originally injured his leg after crashing into a goalpost during a match. He tore his posterior cruciate ligament, which is located at the back of the knee and stops the shinbone from moving too much.

Initial surgery to mend the ligament was unsuccessful and he has since lived with increasing pain that was significant enough to lead to his early retirement aged 51 — and he now lives on disability benefits. The leg itself is also so swollen that he can’t wear trousers, only shorts or tracksuit bottoms.

As the NHS won’t help, Nick has turned to crowdfunding to raise £40,000 to have the operation privately. He’s been in touch with a private orthopaedic surgeon, but doesn’t want to go ahead with an initial consultation until he has raised more money.

His wife Julie, 46, who works in retail, is running the London marathon to help raise more cash, despite having reservations about the amputation.

Nick, however, is adamant that the surgery is right for him. ‘I have to do something,’ he says. ‘I have thought about crashing my car in order to mangle my leg enough so it has to be amputated. I even considered chopping it off myself but I know there’s a main artery there so I realise that’s a ridiculous idea,’ he says.

His case, though extreme, raises questions about the extent to which patients can dictate the procedures they do — and don’t — have.

It’s a complex area. When it comes to refusing a treatment, the balance tends to tip towards the wishes of the patient, no matter the risk.

‘Autonomy [the ability to make your own judgment] has a high priority in medical ethics,’ says Dominic Wilkinson, a professor of medical ethics at the University of Oxford. ‘If a patient wants to reject a procedure, then that will take precedence.’

Such choices are ‘very common’, he adds. ‘Some people refuse to have any more chemotherapy, for example, as they no longer want the side-effects. Or they refuse to have a blood transfusion for religious reasons — even though that could potentially be fatal.’ However, when a patient is asking for treatment that may not be warranted medically, the decision is weighted more towards the views of the doctor.

‘Requesting an operation is not the same, as the patient doesn’t have the same autonomy,’ says Professor Wilkinson.

He gives the example of someone asking for a cosmetic procedure, such as getting their tongue split so it appears forked.

‘A surgeon can say they are not willing to perform such an operation if they feel it would be harmful and not in their best interests. A doctor’s ethical code says to first do no harm.’

Yet sometimes surgeons do operate when there is no sign of disease — for example, if someone has the faulty BRCA gene that puts them at increased risk of breast cancer.

‘If someone carries that gene there is a reasonable degree of certainty that they will get the cancer if they live to a decent age,’ says Dr Iain Brassington, an ethicist from Manchester University. ‘But if someone without the faulty BRCA gene is just terrified of getting cancer and wants their breasts or ovaries removed, then I would be a lot more wary of it being ethical, as the risk profile is much lower.’

In the case of an amputation, says Dr Brassington: ‘Medical staff will never know if refusing it is the right decision, but this is defensible based on the evidence available, and that is what matters ethically.’ However, this becomes clouded by the fact that, as Professor Wilkinson puts it, ‘each of us have a sense of what makes life meaningful’.

Dr Brassington suggests that quality of life and mental health should also be taken into account. ‘There may be situations in which a person feels that their life is not worth living with a given problem.

‘Morally, I’m sure that this would have to be a consideration. But it sets up a perverse incentive, possibly involving a kind of emotional blackmail for medical staff whose decision is, and ought to be, confined to the case in hand rather than speculations about what might happen otherwise.’

The issues become more complex in the private sector, where people can pay to have surgery or treatment that may not be allowed on the NHS.

‘I’m slightly suspicious of any procedure that is offered when the NHS has said it’s not medically indicated and it involves a private transaction with private money,’ adds Dr Brassington.

‘There could be other motives involved. If a surgeon’s judgment may be affected by the prospect of pay he presumably would not get otherwise, I guess there would be a reason to be suspicious.’

But going private to get treatment refused by the NHS is increasingly common.

A survey published in 2018 in the BMJ found that more than 540 crowdfunding appeals in the UK raised £8 million since 2012 to send patients for unproven or disproven cancer treatments.

Another analysis this year found that on average over 40 health-related campaigns are set up on GoFundMe by Britons each week.

Professor Wilkinson says there is an ethical debate about whether it is right to crowdfund for treatment that will not be given on the NHS — often due to a lack of evidence that it will work.

‘People who are strongly motivated and desperate, and have run out of other options, will put what they need on a crowdfunding page,’ he says.

‘We might feel sympathy and put our hands in our pocket, but we need to realise there might be a reason the NHS declines to do something.’

Nick is not the first to turn to crowdfunding in order to get a limb amputated.

In 2016, Hope Gordon raised £10,000 to have her leg amputated after ten years of suffering from complex regional pain syndrome (CRPS), a poorly understood condition that causes severe, long-lasting pain. For unknown reasons, her left leg had effectively stopped working when she was 12, and it hurt so much that even the weight of a duvet was painful.

She ended up in a wheelchair, taking strong painkillers and sleeping only two hours a night. She decided an amputation was the only option, but her doctors disagreed, saying they couldn’t guarantee the pain would go.

Hope had the surgery privately, and has since become a national-level swimmer, a Paralympian canoeist and a Nordic skier.

In an interview in 2019, she said: ‘It was a tough battle to get the operation… 12 hours after, the surgeon and my mum and dad said I just looked like a new person. It’s helped me massively, both physically and from a psychological point of view.’

This is what Nick, too, hopes for. Just five weeks after his ligament was surgically repaired (18 months after his accident), his knee became unstable, causing pain and difficulty walking. After an MRI scan showed the operation hadn’t been a success, he was referred to the Royal National Orthopaedic Hospital in Stanmore, Middlesex and underwent an operation where the patellar tendon — the thick band of tissue attached to the kneecap — was used as a graft to replace the ligament.

The pain and swelling continued, but he spent the next four years having physiotherapy to rebuild his wasted muscle so he could start playing football again.

‘I had a bad upbringing so football was my escape as a child, it allowed me to get away from my home environment,’ he says. Nick’s other passion was his work as a fireman. After his injury, taking co-codamol painkillers daily helped him keep working and playing football for the fire service, Bridgend Town, and the Scunthorpe United over-45s.

But when the pain became too much four years ago, he had to retire from both passions and grew severely depressed.

‘My GP said I was in mourning; both institutions are like a big family that’s very close-knit and well-respected,’ says Nick.

‘When the pain meant I could no longer do either, I considered suicide. The only thing that stopped me was the impact it would have had on my five children, particularly the two who still live at home: Neve [now 14] and Lois [12],’ he recalls.

Since his injury, Nick has seen ten specialists at six hospitals and undergone 12 operations, including a partial knee replacement in 2018 and, when that failed to support his leg, a total knee replacement in 2019.

But despite the doctors saying they have effectively cured his original injury — and tests ruling out possible causes such as deep vein thrombosis — Nick is still in pain. ‘I’m told it’s a phantom pain,’ he says. ‘But the pain is constant and the leg keeps swelling. You can push fingers into my shin like it’s memory foam: it leaves an indent for ages.

‘I’ve been to hell and back and I just want the leg off,’ he says.

It was a conversation he had with a war veteran while on holiday four years ago that made him decide on amputation.

‘Talking to him was an inspiration,’ he adds. ‘I would be happy with a metal leg like his. I’m that desperate I would try anything.

‘It’s my body, so if I want the operation, the NHS should allow me to have it.’ Doncaster and Bassetlaw Teaching Hospitals NHS Foundation Trust wouldn’t comment on Nick’s case, but its medical director, Dr Nick Mallaband, told Good Health: ‘Life-changing procedures such as the removal of a limb should only be considered when there are no other options and we are satisfied, beyond all doubt, that this will benefit the overall wellbeing of a patient.

‘If this consensus cannot be achieved, it means we are not convinced of the merit of going ahead with a particular course of treatment.’

The NHS has, however, performed similar operations. In April, Becky Humphreys, 33, a former cattery supervisor from Wakefield, West Yorkshire, had her leg amputated on the NHS after a diagnosis of CRPS.

At the age of 15 Becky stepped on a porcelain ornament which severed nerves in her toe.

She, too, had years of treatment. Her mobility deteriorated and she became suicidal before convincing doctors — after a six-year battle — that amputation was the only option.

‘The doctors wanted me to wait to see if better pain relief could be developed, but I know my body and I didn’t want to prolong it,’ she told Good Health.

‘I think a person’s physical and mental welfare should be taken into account, as well as their lifestyle. My surgeon realised amputation was the only way to help me. The same consideration should be given to others.’

Four years ago, Nick had eight weeks of counselling after telling his GP he had suicidal thoughts. ‘This really helped me mentally, but it hasn’t stopped me wanting the operation,’ he says. So far he has raised £856 to have the surgery privately.

He believes that giving him the surgery would be more cost-effective for the NHS than the numerous appointments and procedures he has undergone.

But his wife Julie doesn’t share his conviction that surgery is a good idea. ‘I have tried to get my head around the amputation but I find it very hard,’ she says. ‘I know that there is very little left to try and, of course, I don’t want him to suffer for ever. It’s the change that I’m finding hard to cope with.’

Nick believes Julie will come round. ‘She thinks it will affect her more than I realise but at the moment I’m just an object in the background at home,’ he says.

The surgery would undeniably be life-changing. Walking with a prosthetic leg requires significant effort, says Dr David Henderson-Slater, who runs the amputee rehabilitation clinic for Central Southern England.

‘People need good information about the outcome before they go through with the operation,’ he says, referring to ‘the pain they may still have, the mobility issues and the fact that this really is life-changing’.

‘Often chronic pain is in the brain and the spinal cord, so an amputation may not eliminate it,’ he says.

None of this deters Nick. ‘The doctors say it’s a major decision, but not for me. I’ve done my research and come to terms with what life would be like without my leg. I said to my surgeon that either my leg goes or I go, as I just don’t want this life any more.’

n gofundme.com /f/operation-legless

Under the microscope

CAN YOU RUN UP STAIRS?

I can. But I tripped over a loose paving stone recently and ended up bashing my right knee. When I started rehearsals for a play at the beginning of August, I had to wear a knee brace. I’m fine now, though.

EVER DIETED?

I’m lucky in that both my parents [actor Sir John Mills and writer Mary Hayley Bell] were naturally slim so I think I’ve inherited that gene. I’m 5ft 3in and weigh around 9st 7lb.

There was a time in my teens when I was conscious of developing as a young woman and I knew — or, at least, I thought I did — that the industry and the public wanted me to remain a child. I became bulimic. But that lasted only a matter of months.

I occasionally follow the principles of the Hay diet by not mixing starch and protein in the same meal.

GET YOUR FIVE-A-DAY?

YES. I was a strict vegetarian for about 20 years when I was younger. I still get my five-a-day, although I now eat chicken and fish.

ANY VICES?

Cheese and crisps. And I love breakfast: I could live on tea and toast.

ANY FAMILY AILMENTS?

My mother’s sister had cancer when she was very old, and I had breast cancer in 2008. I needed three sessions of chemotherapy, after which I transferred to Herceptin [a drug that blocks cancer cell growth]. Mercifully, it has never returned.

POP ANY PILLS?

I take supplements — astragalus to protect the immune system and ashwagandha or winter cherry, which is said to reduce stress and anxiety.

TRIED ALTERNATIVE REMEDIES?

Absolutely. I’m a great believer in meditation and visualisation — in other words, mind over matter. When I had cancer, I’d visualise the cells being devoured and rejected.

COPE WELL WITH PAIN?

when I broke my leg, I screamed my head off. But I was ten.

EVER HAVE PLASTIC SURGERY?

I had the bags under my eyes tidied up about 20 years ago and had a couple of sessions of Botox more recently.

WHAT KEEPS YOU AWAKE AT NIGHT?

My mistakes. At the moment, I also wake up worrying about committing my lines to memory.

HOW DID THE PANDEMIC AFFECT YOU?

I wrote my autobiography with the help of my elder son, Crispian. I’d go down to the little flat under the house and write all day. I loved the fact that I was confined to quarters.

ANY PHOBIAS?

Yes, spiders and daddy longlegs.

LIKE TO LIVE FOR EVER?

I’D like to be around a lot longer, yes, but not for ever because then I’d see all the people I love dying around me.

n Hayley stars in The Best Exotic Marigold Hotel, which is touring (marigoldshow.com).