Planning for dying

Dr Elena Mucci FRCP is a Consultant Geriatrician, Stroke Consultant and Leadership Tutor at Conquest Hospital in Hastings.  She is a strong believer in personalised advance care planning to help her patients to achieve the best quality of life and death through early recognition of frailty, patient education and empowerment.  She uses Instagram to talk about geriatric medicine.

This ward round was the funniest and happiest but also the most educational, I have ever had.

Funniest because my patients made me laugh so much I was in tears. Happiest because together we made care plans which empowered them and put them in control of their future. And educational because my junior doctors saw how dying patients can be full of life! The key to dignified end of life is in our hands – the hands of healthcare professionals.

Rose, at 107 years old, was the oldest patient on the ward. She was admitted after having had a fall and was waiting for a care package to be sorted out. I addressed all her medical issues and asked what else I could do for her?

“Dr Mucci, can you find me a husband please? I have been a widow for 30 years. I think I am ready for a new relationship”, she said.

I immediately sensed a fellow woman with a witty sense of humour and replied, “Rose, I will struggle to find anyone of your age. Will a man in his 90s do?” Her reply made us all laugh - “A toyboy on the NHS?”

This was Rose’s first admission to hospital since she had had her children, and the last. She knows she is in the final stages of her life and the last thing she wants is to spend another day in hospital. She will be too busy dating, she says! The advance care plan we made for her reflected her wishes.

John, on the other hand, had had five admissions to hospital in the last year. This time he was on my ward with cholecystitis, again. He is too frail for gallbladder surgery. Instead, he is having recurrent admissions from his nursing home with delirium, which clears with antibiotics. I treated him fully and when the delirium cleared, I asked what he wanted to do in the future.

John’s answer surprised me. “I want you to throw your shoes into that bin, Dr Mucci,” he said, looking serious.

I smiled politely, my juniors thought he was still delirious, but John’s nurse joined the conversation and told me to do as he said and laughed! It turned out that John was a shoemaker and had even been commissioned to make Churchill’s shoes. He had been admiring my shoes and discussing them with other patients every day, but on this occasion, I had disappointed him! We laughed and went on to discuss his end-of-life care plan. John was relieved. Everybody had been so kind to him in the last year, but he is tired, he is ready to go, and he does not want these treatments anymore. But nobody had given him a chance to have this conversation.

John left the hospital with a detailed end-of-life care plan; when the next infection or medical problem comes, he does not want any treatment apart from comfort measures and pain control.

Future care plan discussions must become a mandatory part of patient care in any healthcare setting. These discussions must start early, at the time of chronic illness diagnoses, and not when the patient is wheeled into intensive care or about to arrest. Only by doing so will we be able to provide personalised care to our patients. As John had commented, the care plan I made for him felt like a snug, fine pair of personalised shoes that he used to make for his customers: it is unique, and it is made only for him.