That one patient who changed my life

It sounds somewhat improbable now, but Ellen de Visser’s bestselling book started off as a “filler” newspaper column, the kind often used by newspapers to get through the quieter, more uneventful summer months. For de Volkskrant, one of the Netherlands’s biggest newspapers, health journalist de Visser was assigned to interview doctors, nurses, and other healthcare professionals on the one patient that had changed their outlook on work, or life, forever.

Within weeks, de Visser knew she had unearthed something special. Every week as she sat down with a healthcare professional, she came up against simple stories of human tragedy, miraculous recovery and the complexity of the human condition. The patients in question ran the gamut, from a toddler who was evidently a victim of domestic violence to a terminally ill man who wanted his doctor to end his life, via assisted dying. In another instance, a woman wants to end her own life by telling doctors that she has attempted suicide. Later, it transpires that she hadn’t in fact attempted to take her own life.

“I was flabbergasted by that story,” de Visser admits. “The doctor in question had already made a judgment, ‘Why are we helping this woman? She wants to take her own life’. When he found out that [she hadn’t attempted to take her own life] he felt so guilty, and ashamed of all his negative feelings around the case. It changed his attitude completely. Whatever a person’s age, profession or prior medical history, he realised that everyone deserves care.”

The resulting collection of columns, entitled That One Patient, is a phenomenal snapshot of humanity but also the vagaries of working within the health and care professions. All of life, and death, is here.

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“I never knew what they were going to tell me before the interview and so many times, they’d tell the story with tears in their eyes. I’d go outside and think, ‘Wow, what an amazing story. These people are outstanding’,” de Visser recalls.

More than anything, her collection of interviews puts a singularly human spin on the experience of being a professional at the very precipice of life and death.

“One doctor told me about a terrible mistake he had made when he was a very young doctor,” de Visser notes. “He’d never talked about it before. He told me, ‘I became a better doctor because of that. I’m not quick to judge others anymore’. He made his mistake over 40 years ago, and the unwritten rule back then was that doctors don’t make mistakes, and if they do, they certainly don’t talk about it. The experience of losing that patient had haunted him – he thought about that patient every week.”

Among the interviewees in the book is Dr Anthony Fauci, the American physician-scientist and immunologist serving as the director of the National Institute of Allergy and Infectious Diseases and then chief medical adviser to former US president Donald Trump. In a fortuitous quirk of fate, de Visser interviewed Fauci before the coronavirus pandemic, when he gave a public lecture in Amsterdam.

“I remember asking him if there was one patient in his mind that he’d never forgotten, and he replied, ‘Oh, that’s interesting, wait a minute. He began searching his desk and found a letter from an Ebola patient that he successfully treated in Sierra Leone. We see him as a scientist, but he’s clearly also a very emotional man, as evidenced by the fact that he still kept this letter.”

What surprised de Visser most was realising that the doctors and nurses she spoke with didn’t just treat their patients like nameless cases on their professional “to-do” list.

“We might think we are simply a number for doctors, and many times we are, but I also think that people were heartened to read that in many cases, patients weren’t.

“They even have a word for it – they call it ‘professional empathy’,” de Visser explains. “It means that they feel for their patients, but to survive, they must sort of keep their own feelings at bay. Imagine you are an oncologist – you can’t cry for all the patients that you lost. But the most intriguing thing was finding out that patients broke through the barrier and managed to really move their doctors. I also didn’t realise that doctors learn so much from their patients.”

In some instances, the medical professionals realised that they had to take the lead from the patient when it came to a pathway of treatment.

“Several doctors who told me that they learned that helping people can also mean knowing when not to treat them,” de Visser recalls. “The doctor is not always the one that knows best, and that was a very important lesson for them. Some doctors feel that they went to school for several years, so they know best on this stuff but sometimes that’s not always the case.”

What did their work with patients teach these medics about living in their own lives?

“Very simply, how to value the simple things like having a coffee with their wives or spending time with friends,” de Visser says. “As one doctor said, ‘Create as many beautiful memories as you can, because farewells will be coming’.”

In the Netherlands, assisted dying is legal and part of the country’s healthcare framework. Four per cent of deaths in the country – about 6,000 in all – happen via assisted dying. Still, that doesn’t mean that healthcare professionals treat it lightly. It’s an option that has offered many patients a peaceful, dignified and respectful death, but de Visser realised that though they recognise it as the ultimate act of mercy, the professionals involved didn’t sleep for nights before the procedure.

De Visser’s own brother-in-law, a terminally ill cancer patient, died via assisted dying, giving her a particular insight into the experience of both patient and doctor.

“It is always the patient who asks for euthanasia, never the doctor who proposes to perform it,” de Visser explains. “For patients who are terminally ill, it can be an enormous relief to know that they can decide for themselves when they can no longer continue because their pain, their suffering have become unbearable. I have seen how terrible my brother-in-law Huib’s situation was in the last week of his life.

“For doctors euthanasia is by far the hardest thing to do, they don’t sleep the night before, nor the night after. But when patients are so terribly ill they don’t want to abandon them. They regard euthanasia as an act of humanity, an act of mercy, of deep compassion for their patients.”

More recently, de Visser has found herself at the coronavirus coalface, visiting frontline workers treating Covid-19 patients in hospitals.

“I interviewed doctors and nurses during the first wave and there was so much gratitude right then,” she recalls. “The hospital received lots of presents like chocolate, pizzas, flowers and gift cards, the doctors and nurses got priority in the supermarket, our king [in the Netherlands] even mentioned their work in his speech. Two days before Christmas I went back to the same hospital: eight months later, there were no presents anymore, gratitude had changed into aggression, there was even a security guard on the Covid ward, because relatives didn’t accept the rules of the hospital anymore. The patients were as sick as during the first wave, the doctors and nurses worked as hard as then but the world outside the hospital had changed completely. And that made them so sad, so frustrated and sometimes even angry.”

That One Patient has quickly found a global readership, from Taiwan and Korea to Egypt and Japan; something that has astounded de Visser.

“Initially I thought, ‘Well what could a GP in Amsterdam or Maastricht ever mean to foreign readers?’” she admits. “It just goes to show you – the lessons are universal. These experiences are truly meaningful.”

That One Patient: Doctors and Nurses’ Stories of the Patients Who Changed Their Lives Forever by Ellen de Visser is out now via 4th Estate.

Irish doctors and healthcare professionals recall That One Patient

Prof Donal O'Shea, consultant endocrinologist at St Vincent's University Hospital and St Columcille's Hospital, Dublin

“In 2009, we started Margaret, a lady in her 60s, on a new treatment for diabetes. She came back within days saying her psoriasis (a skin condition) had cleared. We told her it was a coincidence, as this new treatment was for diabetes with no described effects on skin. A few months later she had to stop the treatment because of a side effect and to our surprise – but not hers – the psoriasis came back. There was only one logical explanation for this – that the new class of diabetes drug was also affecting immune cells in the skin – and in turn all over the body. She had been right all along. We reported her case in one of the major diabetes journals and she kickstarted a programme of research in the area that has led to 30 further publications and several PhDs. She was a gem of a person. Even when we didn’t believe her assertion that the new drug had healed her psoriasis, she gave me a Christmas present of 12 crocheted angels with a card saying ‘Happy Christmas – that treatment helps psoriasis’. They are the first decorations to go on my tree every year.”

Aine Burke, consultant haematologist at Sligo University Hospital and member of the Irish Hospital Consultants’ Association

“There is one lady who comes to mind. I met her during my specialty training, and she’d had leukaemia for months. She had daughters my age, which we initially bonded over. I sat on her bed and watched William and Kate’s royal wedding with her. She returned to the hospital, although I wasn’t looking after her at the time. I stuck my head behind the curtain to see how she was doing and it transpired that she was dying. The two of us bawled crying. We cleared our eyes and she said, ‘Tell me something nice’. I told her I was pregnant with my first child, and she told me, ‘The one thing I wish for you is a short labour. I’ll be upstairs by then, so I’ll have a direct word with the man himself.’ That bit will stay with me forever. She was angry and upset but over the coming weeks she thought about death and talked about it with her kids and she faced it head on. She died at Easter and in June, my 9lb son was born in four hours.”

Ray Walley, chief Covid adviser to HSE

“A female patient had come to me post-Covid. She had buried her two elderly brothers two weeks apart, even though they had behaved appropriately and adhered to guidelines. She realised at the funerals that people were coming up to commiserate with her but she realised she was spending too much time in contact with them. She was forced to tell a lot of them to go away. I remember her saying, ‘I should never have gone to my brothers’ funerals’. More than anything she was worried her children or grandchildren might get sick. It was a very stark thing to hear.”

Prof Alfred Nicholson, former professor of paediatrics at Temple Street Children's Hospital

“One evening I was cycling home, and at 5pm was about halfway between Temple Street and the house, passing the Dáil. I got a call, that this little girl – a beautiful little girl, aged 3 – had come in with a condition like meningitis, called group A strep. Generally, you can spot it and everything goes fine, but this afternoon, one of the staff had told me that this little girl didn’t look quite as well as she had done. I did what anyone would have done, which is turn the bike around. Within 50 minutes, this little girl was on her way to intensive care. This condition can get very bad. What struck me about it was that everyone involved – the radiology staff, the orthopaedic staff, the nursing and ICU staff – was completely hellbent on seeing her through to the next phase. Between the jigs and the reels she went home perfectly well. That was a real save, but the most important thing was the team effort. A time when most people were thinking of the weekend starting, that’s not what happened. Everyone went way beyond the course of duty. And it’s what happens a lot in children’s hospitals all around the country.”

Pat Harrold, GP in Nenagh, Tipperary

“You never know how many people you’ve saved. One man came to me regularly, a Northerner who was a man of few words, although he told me he was a bit depressed. I got the feeling that I never knew what he was thinking. I had plenty of questions, but the answers were always non-committal and one-word. I suggested counselling and a course of anti-depressants. I never really felt I got somewhere with him. Much later on, he came in and told me, ‘If it wasn’t for you, I’d be dead’. I never knew he was that bad, but it meant more to him than I ever knew. I was there. It made me realise that being in a position to help is a real privilege, and it made me appreciate the value or what I do every day.”

Ciara Kelly, broadcaster/former GP

“The patient that stands out in my mind is one I met early in my career, and the first person I ever told that they were going to die. I was 26 and qualified for a grand total of six weeks. It wasn’t supposed to happen this way, but the consultant and most senior people were away, so that the patients that came through A&E were our responsibility. The registrar on duty with me was also newly qualified. This woman had come in to A&E, and we did an endoscopy and realised it was a massively advanced cancer. The patient was put into a private room, and the registrar and I stood outside, bracing ourselves. The patient was with her partner and two small children. We told her, in as best and gentle a way as possible, that it wasn’t what we had been expecting. She asked about her prognosis, and we had to tell her that no treatment would be happening, that it wasn’t a possibility. The woman didn’t flinch, didn’t miss a beat. “I need you to help me,” she said, matter-of-factly, pointing to her family. “I need you to get them a house.” I’ve never forgotten it – even in that moment, she was so incredibly selfless and brave.”

Noel McCaffrey, former GAA footballer and founder of ExWell Medical

“I specialise in clinical exercise prescription, using exercise to prevent and treat chronic illness. One patient stands out. Marlou came to Ireland from the Philippines in 2011; his wife and children followed four years later. He worked as a theatre nurse at the Mater, and his wife worked there too. Marlou had two very bad strokes in 2019 – he was at work in theatre. He was left profoundly disabled – he became immobile and was unable to speak. He has been attending our programme for over a year and he has made remarkable progress. He is able to do relatively little by way of keeping up with the class, but he is determined to do what he can. His progress has been incredible – he is now walking, and enjoying himself. He’s an absolute inspiration to all of us.”

Edel McGinnity, GP based in Blanchardstown, Dublin

“He loomed across the desk, well over 6ft, with his brooding face and many scars from a violent history I had heard about second hand. It wasn’t the day of his usual weekly visit for methadone. Today was different. He was agitated and restless and had asked to be seen at short notice. “It’s my methadone – it got spilled,” he said. We sat down and the room went quiet as I hand wrote the convoluted script. When I looked up, I saw that he was crying. “What is it?” I asked. “You believe me,” he said, “no one has ever believed me before”. Two years later he was dead, from complications of hepatitis while I had become a GP hoping to make a difference. That day, it was him who made the difference to me.”

Nina Byrnes, MICGP, Generation Health Medical Clinic, Dublin

“There is one family who will always stay in my mind. In my GP registrar year, I was assigned to care a for a little boy who had cancer and was dying. At the time I had one child who was just turning a year old. I visited this boy and his family many times over a period of about six months and it was my first experience in the community of caring for someone at the end of their life. Visiting and caring for this boy was a huge emotional challenge. I cried many times on returning from visits to their home. Mostly I felt completely inadequate and yet somehow the family always seemed grateful I was there. This little man’s honesty and courage changed forever my opinion of what dying can and should be.”

Dr Margaret O’Riordan, president of the Irish College of General Practitioners and a GP based in Tipperary

“To the outside observer, she appeared to be a middle-aged woman cheerfully getting on with life with no reason to make her stand out from the crowd. We had forged a close therapeutic relationship over many years. I had seen her diagnosed with a severe enduring mental illness, several chronic physical illnesses and live through many social, familial and economic challenges. She had every reason in the world to be sitting in a corner feeling sorry for herself, yet time and time again her approach was, ‘what can I do to help myself?’. She was inspirational – she encouraged me to try to be a better doctor and to appreciate my own good fortune. She passed away a number of years ago now but I will never forget her.”

Paula Barry, midwife at the Coombe Women and Infants University Hospital, Dublin

As a midwife for 20 years, I have many experiences and memories of thousands of women I met both in the labour ward and at my clinic, which I have been running for 13 years.

Women are all individuals with varying needs, wishes, fears and anxieties. The beauty of continuity of care is that you get to know women and you gain insight into their lives, seeing beyond their pregnancy. You picture them at home with their family and friends.

Anna* was living in direct provision accommodation. Anna came alone for visits. Initially she was quiet but, as the weeks went by, she opened up and we developed a relationship. She told me about her war-torn country, her family scattered throughout the world, her son who she had not seen for four years. Anna had to get two buses to get to the hospital, and in the winter time she often arrived soaked to her skin. But she did everything she could to stay well and healthy and never missed an appointment. She would giggle as I palpated her abdomen, both of us guessing the weight and sex of her baby.

Anna gave birth to a beautiful baby boy. I visited her on the ward following the birth where she proudly showed off her new baby. She wasn’t surrounded by cards, gifts and visitors, but her eyes sparkled and she shyly smiled introducing me to her baby boy. I remember thinking how privileged I was as a midwife, to be allowed to share in these precious moments. I was getting to hold her baby when her mother and son would only get to see him across the miles over the internet. What a wonderful, resilient woman Anna was, and I am lucky to have met her.”

(*name has been changed)

Dr Dara Hume, GP based in Cavan

“J had terminal cancer. He wasn’t afraid of dying, but he was terrified of dying in pain. I had promised him that I would not let that happen.

That afternoon, I called to his home. He was in pain. He hadn’t long to live. We talked. I gave him medication, and showed him the remainder in the syringe, that I could come back and administer again as needed. We held hands. As I was leaving, I heard ‘Doc’. I turned around. He gave me the thumbs up. J died about two hours later, peacefully, at home, pain free. His dignity in dying was humbling. The peace a person’s face attains before their last breath is beautiful to behold. What a privilege it is as a GP to be trusted with the most intimate thoughts and fears of our patients.”