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Talking about death is a part of my work – I worry I say the wrong thing

I am a NHS hospital consultant and work in a healthcare team that specialises in the care of adults with cystic fibrosis (CF). This is a genetic condition that affects various organs, but primarily the lungs. It results in recurrent and severe chest infections that ultimately cause the lungs to fail. There have been considerable advancements in new therapies that we are hopeful will change the natural history of the disease. Nevertheless, it remains a life-shortening illness and coping with the death of young adults brings many challenges to the team that I work in.

Patients move to our CF centre when they are 18 years old. The doctor-patient relationship is a dichotomous and delicate balance of professional distance and empathy. But it does not fully guard against emotion when we see those we look after approach death. Over the years we develop bonds with our patients and their families and witness many life events. We share in their laughter and tears. Occasionally I am the focus, a patient recently said to me: “You’ve lost weight … you need to look after yourself better.” That made me chuckle.

Patients strive to lead normal lives and I am frequently in awe of their achievements. Some of their journeys are truly Homeric in stature. But years of infections and damage to the lungs take their toll. The hope of a better tomorrow is a powerful support but the reality of declining health can dismantle the scaffold. Broaching these end-of-life conversations is often difficult as the words uttered can confirm patients’ fears.

It is so important to choose those words carefully as they can linger in the family’s memory. I remember one young 22-year-old woman who was not responding to treatment in hospital; her death was imminent. It was important for her to have some sort of control. I asked her: “You are in the driving seat now, what would you like us to do with your treatment?” She wanted to stop it, and I did. Some months after her death her mum called into the hospital and said: “Thank you for putting my daughter in the driving seat”. I’ve cherished those words.

Many patients now have young families of their own and the death of a parent is a traumatic experience. We arrange for our patients to engage with a specially trained counsellor to express their thoughts in words and pictures. A personalised memory book is produced, which includes advice for the future without them.

I’ll always remember the young girl, after losing a parent, who put her thoughts down in a letter. It was a remarkable achievement for one so young. She said the book helped her and reminded her of the parent she had lost. The presence and tactility of a book is tangible. A father whose son died wrote to me: “It is impossible to balance the awfulness of our heartbreak with the comfort that this book provides, but what is paramount is that it provides amazing comfort to us all.” Their letters are the most powerful I have ever read.

In the liminal transition from life to death a peace descends in the half light. I reflect on what I could have done differently. Should I have changed the treatment plan? Could I have phrased things a little better? Some parents have lost all their children to this disease and they have been made to endure grief that is simply unendurable. So when I go home at night my family are hugged that little bit tighter, as nobody is immune to loss. Death casts light on my own mortality and the impermanence of life comes sharply into focus.

In the following days and weeks we redouble our efforts. Clinical care satisfies the needs of today, but research brings the hope for tomorrow. It is so important to be part of that hope. I walk into the hospital ward to hear new stories and guide as best I can. It is an enormous privilege to do what I do.

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