Another day, another story about death being a surprise to people. As part of a recent study, palliative care and radiology specialist doctors reviewed the records of their hospital’s most elderly patients, to count X-rays and scans performed in the last six months of life. They examined the case-notes of one in four of all the patients over the age of 80 who died in a six-month period of 2021. Between them, these 96 patients had 389 X-rays, 92 ultrasound scans, 192 CT scans and six MRI scans. The review found that burdensome tests – some of which have uncomfortable and even life-threatening side-effects– are being ordered and repeated even as the patients’ lives are drawing to an end. The authors speculate that ordering “more tests” diverts doctors and their patients from uncomfortable conversations about dying.
Although there may be better ways to spend limited NHS funds, it is not the financial cost of unhelpful medical tests that disturb me – rather it is the human cost to dying people and their families. After a long career in palliative care in an NHS hospital setting, I recognise the scenario this paper reveals: our reluctance to name, to recognise or to discuss dying.
Patients may not perceive that they are becoming so sick that death is increasingly likely. Families demand that medics “do everything!” Doctors seem reluctant to discuss mortality and how best to serve this very sick person, diverting instead to unnecessary tests or unwarranted trials of ineffective treatment, to escalating and intrusive interventions, to the farcical pretence that this terminally ill human might just survive if we can find a cure for their latest medical complication. Just don’t mention dying.
Talking about dying won’t make it more likely. Death rates remain a stubborn 100% despite medical advances, a rate that looks unlikely to change. What is changing is life expectancy. We are living longer, and we collect various long-term conditions as we go. The extra decades added to our lives are not the robust, healthy decades of early adulthood or midlife: we now survive into our ninth and 10th decades, many of us spending that increased life expectancy experiencing poor and deteriorating health. The most elderly of us are more likely to be bumped into hospital by a medical crisis in one of our several health problems, and the treatments of each condition can cause complications in the others. No wonder, then, that about one-third of patients over the age of 75 admitted to hospital are already in their last year of life.
Of course, access to tests and treatment should not be rationed on the grounds of age. However, healthcare should be provided that is of significant, personal benefit for each individual patient, at any age. That includes identifying and protecting those who are in the last weeks of life from intrusive and unhelpful tests, from treatments that do not align with the individual’s choices and preferences, from keeping people in hospital when they might prefer to spend the last part of their lives in a calmer and more familiar setting.
To understand people’s choices and preferences, we have to talk with them about dying, and to do so with candour and compassion. False hope robs people of time and opportunities that will not come again. The high rate of tests during the last weeks of life shows us that even when the possibility of imminent death is very high, conversations between doctors and their very sick patients avoid discussion of the possibility of dying.
Let me walk you through the ideas it’s helpful to have discussed. If you were likely to die within the next six to 12 months, where would you like to live over that period? What are the things that would matter most to you? That might include people, pets, places, access to TV, music, books, the outdoors, your hobbies, your place of worship, your cultural customs. It might include your attitude to accepting help with washing, dressing, eating, getting around your home. You may value being highly independent, or you may already benefit from aids, appliances and people who assist you. What does quality of life mean to you?
Over the last year or so of your life, would your priority be how long you live for or the quality of the life you can live? Would you tolerate any discomfort and intrusion for the chance of a few days’ extra survival? Or would you decline invasive treatments that may extend your life but not add to its quality? Perhaps your decision would be somewhere between those two. Who knows your wishes? Who will speak for you? Nobody may speak on your behalf unless you give them powers of attorney (see information on NHS website).
Medical advances have saved innumerable people from avoidable, early deaths. Yet this progress has also resulted in the loss of public understanding about dying. It’s time to reclaim that forgotten wisdom. We can welcome medical progress, but it should not deprive people of the chance to live the last part of their lives away from the harms of intrusive medical interventions of dubious personal benefit. Unless we talk about dying, we can’t talk about how to live the way we want to as death approaches.
Dr Kathryn Mannix is a retired palliative care doctor, and author of With the End in Mind and Listen
