Health

Cyril was terrified of death. In the end, my hospital failed him


At the very end, Cyril* was terrified of death. A nasty infection had developed in his chest and he was struggling to breathe. All members of the team believed that he had only a matter of days to live. Cyril himself was aware in his more placid moments that his time was nearly up. He was accepting of this and, I believe, would have preferred more conservative treatment. However his daughter, understandably struggling to deal with her father’s mortality, was adamant that we try everything.

Cyril was in his late 80s. Yet at his daughter’s insistence we continued to treat Cyril for his infection and used medicine to help drain fluid from his lungs. He became completely dependent on a machine to force oxygen through his nose, something patients have likened to sticking your head out of the window of a car on the motorway. In light of such discomfort and with the added burden of near total respiratory failure, I believe Cyril’s daughter was asking the wrong questions and we, the doctors, were providing the wrong answers.

As doctors, we tend to define ourselves by our patients. Motivated by compassion, we often go above and beyond for them. I’m sure most doctors can think of a time when they perhaps went a little too far in trying to save a patient.

On the other side of the doctor-patient relationship are families who are seeing a loved one struggle and want only to alleviate their suffering. Living in an age of information at your fingertips also means expectations are naturally raised. As such, recognising a situation that is likely to overwhelm a patient, and knowing when to shift focus from active treatment to ensuring comfort, is difficult for all parties to navigate.

This shift in focus is only something that can happen if there is a cultural change from doctors, patients and society as a whole. A 2016 audit by the Royal College of Physicians identifies that training in palliative care for doctors is only mandatory in 19% of trusts, while 87% of doctors would welcome extra training.

Similarly, many patients approaching the end of their lives (and their families) want to work together with the medical team to ensure comfort and support rather than treating at all costs. However, there are still situations where that dialogue goes awry and we together – doctors, patients and families – put ourselves through more suffering than is necessary.

Each patient is unique and we should therefore err for a more personalised approach over generalised frameworks. But at the heart of these discussions we need to recognise that often, in a small number of patients, we cause immeasurable harm and trauma in the pursuit of a very finite amount of extra time.

Cyril plodded along for about a week. Although he looked relatively well his oxygen requirements were slowly creeping up until, early one morning, he became acutely short of breath and agitated. He went into respiratory failure and died.

I believe we failed Cyril. We were tasked with making the decisions required to care for him and we should have provided a kinder, more dignified end of life. I recognise that after directing our energies to prolonging life when faced with adversity, this is against our very nature. However, everyone will at some point come face to face with their own mortality and have difficult discussions about dying. We are definitely starting to see this change occurring but it won’t happen overnight.

Accepting that dying is a normal part of life and changing the culture around end of life care is a huge challenge we face at an already tumultuous time for the NHS. Yet hopefully with time, compassion and hard work, those in the same position as Cyril and his daughter will not be terrified of death but more accepting of their fate, spending their last moments comfortable and pain-free.

Name and some details have been changed

If you would like to contribute to our Blood, sweat and tears series about experiences in healthcare, read our guidelines and get in touch by emailing sarah.johnson@theguardian.com



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