Martina was 78 when I first met her. She had recently undergone a major operation for thyroid cancer, and had moved to be near her son. She was on a bewildering array of medications – for blood pressure, arthritis, diabetes, osteoporosis, plus three different heart conditions. Over a series of consultations, I gradually got to grips with her medical history. I also got to know her. Her voice had been rendered permanently gravelly by the surgery. It suited her understated, dry humour.
Martina wanted to be on as few drugs as possible, so I made up a “hit list” of the ones she would be least likely to miss. We managed to trim four, but in discontinuing the fifth we provoked a spectacular upset in the delicate balance with her heart. We agreed we had probably got rid of all that we reasonably could.
A couple of years later she developed neck pain that turned out to be from cancer metastases in her spine. She accepted the news with equanimity, and was happy to engage in “advance care planning” – establishing her attitudes to future care in the face of a terminal diagnosis. She had no hesitation in deciding against cardiopulmonary resuscitation (CPR) in the event of a natural death.
Over the next year Martina’s cancer deposits showed little progression. In fact, it was her ailing heart that was causing increasing problems – fatigue, breathlessness and disturbed sleep. With that and her worsening arthritis, she was no longer able to get out of the house. I began to visit her at home. She remained mentally sparky, and I enjoyed our conversations, but it was sad to witness her physical decline.
Then one weekend, she had a heart attack. Alone and in pain she dialled 999, and shortly after opening the door to the paramedics she collapsed and died. There should have been a Do Not Attempt Resuscitation (DNAR) flag on her ambulance service records, but it had failed to migrate during a system change. She had a paper DNAR notice stuck to her fridge door; the paramedics never saw it. They launched straight into CPR and, amazingly, Martina become one of the 10 per cent of patients to be successfully brought back from an out-of-hospital cardiac arrest.
I visited Martina after she had been discharged. I asked how she felt about being resuscitated against her wishes. She was sitting across from me in her lounge, bathed in the spring sunlight streaming through her window. She gave me a wry smile, gestured to the wonderful weather outside – weather she could enjoy but only through glass – and said she really didn’t know.
Over the ensuing couple of months her heart failure progressed relentlessly. Despite fine-tuning her medication, her legs became permanently swollen and her breathing was laboured with the slightest activity. There were a couple of crisis admissions during which the hospital patched up exacerbations, then it was back home for more of the same.
I felt she must surely have come to rue that unwanted resuscitation, so depressing was this subsequent downward spiral. But in fact, her brush with death seemed to have given her a renewed joy in life, despite the hardships. She even spoke of reversing her previous DNAR decision, though she had come to no settled conclusion before the next emergency admission, from which she did not return.
The burgeoning number of frail elderly patients with multiple health problems has led to an NHS-wide push to expand advance care planning. In some ways this is good, preventing futile heroics being performed on people at the very end of life. But Martina’s story illustrates how difficult it can be to imagine how we might truly feel about some hypothetical future state of health. It begs the question as to how valid these decisions may sometimes be. And it reinforces for me that, even when we professionals might judge someone’s quality of life to have become extremely poor, to them it may still be something they relish. It can be incredibly hard for any of us to know when the time has come finally to let go.
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This article appears in the 30 May 2018 issue of the New Statesman, God isn’t dead