How should doctors break the news to a patient that there is no hope? this painful question was brought home to me recently when my younger sister, Militza, was diagnosed with terminal ovarian cancer at the age of 63. She was told of the poor outlook by several doctors, always in such a brutal manner that it left her terrified.
Militza was referred to hospital last April after complaining to her GP of sharp pains in the abdomen. It was after three days of tests that a registrar, in his late thirties, said to her brightly: “and what do you think you might have?”
My sister, who had never known a day’s illness in her life, did not have a clue. Appendicitis?
He told her sharply: “You have cancer, and it has spread.” She was alone when the news came. no request had been made for family to be present. She had to stagger back alone to her ward, collect her belongings, and arrange to go home. my brother, who dropped what he was doing to collect her, found her shocked and shaking.
Some weeks later, at another hospital, she was diagnosed as having stage 4 ovarian cancer. It was a tough summer, with Militza undergoing further tests and chemotherapy. Her morale did not improve when a bright, young gynaecologist told her straight out: “You have only a few months at best.”
Again, she was left reeling and started having regular nightmares, also uncontrollable feelings of terror. when I tackled this doctor, she stood her ground. “I was asked the question,” she told me. “that is my obligation according to GMC [General Medical Council] guidance.” yet I believe that whatever my sister had asked, she was not looking for a final departure date.
As next of kin I had been privately warned that, at best, treatment offered only a 25 per cent chance of any improvement. I pleaded with her consultant that, while it was important to be open, Militza should not be frightened out of her wits. despite the poor outlook, she needed something to work towards, even if it was a small chance that chemotherapy would help.
After several sessions of chemotherapy, she was alone in her room in July when another registrar, again in his late 30s, came in and said: “I have to tell you that the chemo has not worked. You now have three weeks to three months at the very best. we are sending you to a hospice right away.”
She was moved within two hours. All hope was now gone: she was hit by the utter finality. Her nightmares increased in ferocity. She experienced a sense of rushing into a large, white wall and crashing into it.
I called the consultant: he was polite and concerned. when I called the registrar, he told me that “we have to be realistic”.
The nightmares never went completely, but in the final two weeks she was calmer, comforted by the constant presence of family and friends. She met her end with courage and dignity. the hospice controlled her pain very well, and one junior house doctor was careful to describe what her final days would be like, when I was present.
I accept that by the time my sister’s cancer was diagnosed it was too late for her. Perhaps because it all happened so quickly, it was also difficult for doctors to take account of her ability to handle the news, or to break it gradually. Still, whenever she was told bad news, she was alone, with no support or counselling provided.
Having spoken to other patients and families, I realise that my sister’s experience was not unusual – and I wonder if accusations that doctors lacked openness in the past have resulted in the brutal directness used today.
A GP friend told me that training on how to talk to patients with terminal illness is very poor. “many young registrars are very clever, ambitious and arrogant,” he added. “Death to them is a remote event, many years off. and the lack of continuity of care means they rarely see a patient more than a few times.
“There is also pressure on hospital beds. If a patient is not going to recover, the attitude tends to be – tell the patient, tick the box that they are going, and move on.”
Niall Dickson, chief executive at the GMC, said that towards the end of life, while patients’ questions need to be answered honestly, doctors should always approach these conversations sensitively.
“It is hard to exaggerate how important it is to have good communication between doctors, patients and their families – it is at the heart of good care of dying patients.”
Militza died last August – a brief 14 weeks from her first symptoms.
Cancer Research UK – one of the Telegraph’s Christmas appeal charities – runs an advice line on all aspects of the disease: call Freephone 0808 800 4040.