AAnother day, another story about death that surprises people. As part of a recent study, palliative care and radiology specialists doctors the data viewed of their hospital’s oldest patients, to count X-rays and scans taken in the last six months of their lives. They examined the cases of one in four patients over the age of 80 who died in a six-month period in 2021. Together, these 96 patients had 389 X-rays, 92 ultrasounds, 192 CT scans and six MRI scans. The research found that burdensome tests — some of which have unpleasant and even life-threatening side effects — are being ordered and repeated even as patients’ lives draw to a close. The authors suspect that prescribing “more tests” distracts doctors and their patients from uncomfortable conversations about death.
While there may be better ways to spend limited NHS funds, it is not the financial cost of pointless medical tests that bothers me – 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 article reveals: our reluctance to name, acknowledge or discuss dying.
Patients may not realize that they are becoming so ill that death is increasingly likely. Families demand that doctors “do everything!” Doctors seem reluctant to discuss mortality and how best to help this very sick person, deviating instead to unnecessary tests or unwarranted trials of ineffective treatment, to escalating and intrusive interventions, to the ridiculous pretense that this terminally ill person might survive if we can find a cure for their latest medical complication. But don’t talk about dying.
Talking about dying doesn’t make it more likely. Death rates remain a stubborn 100% despite medical advances, a rate that is unlikely to change. What is What is changing is life expectancy. We are living longer, and we are acquiring all sorts of long-term conditions along the way. The extra decades added to our lives are not the robust, healthy decades of early adulthood or midlife: we are now in our ninth and tenth decades, with many of us spending that increased life expectancy in poor and deteriorating health. Most of us who are older are hospitalized more often for medical crises in one of our various health conditions, and the treatments for each condition can cause complications in the others. It is no wonder that about a third of patients over the age of 75 who are admitted to hospital are already in their last year of life.
Of course, access to testing and treatment should not be rationed based on age. However, health care should be provided that is of significant personal benefit to each individual patient, regardless of age. That includes identifying and protecting those in the last weeks of their lives from intrusive and unnecessary testing, from treatments that do not reflect the choices and preferences of the individual, from keeping people in hospital when they might prefer to spend the last part of their lives in calmer, more familiar surroundings.
To understand people’s choices and preferences, we need to talk to them about dying, and we do so with candor and compassion. False hope robs people of time and opportunities that will never return. The high number of tests in the last weeks of life shows us that even when the likelihood of imminent death is very high, conversations between doctors and their seriously ill patients avoid discussing the possibility of dying.
Let me take you through the ideas that are useful to have discussed. If you were likely to die in the next six to twelve months, where would you want to live during that time? What are the things that would be most important to you? These might be people, pets, places, access to TV, music, books, the outdoors, your hobbies, your place of worship, your cultural practices. It might also be your attitude toward accepting help with bathing, dressing, eating, moving around your home. You might value being very independent, or you might already benefit from aids, devices, and people who help you. What does quality of life mean to you?
Would your priority in the last year or so of your life be how long you live or the quality of life you can lead? Would you tolerate some discomfort and interference for the chance of a few extra days of survival? Or would you reject invasive treatments that might prolong your life but do not improve its quality? Perhaps your decision would fall somewhere between the two. Who knows your wishes? Who will speak for you? No one is allowed to speak for you unless you give them powers of attorney (see information on the NHS website).
Medical advances have saved countless people from preventable, premature deaths. But these advances have also led to a loss of public understanding about dying. It is time to reclaim that forgotten wisdom. We can welcome medical advances, but they should not deprive people of the opportunity to live the last part of their lives free from the harm of intrusive medical interventions of dubious personal benefit. Unless we talk about dying, we cannot talk about how to live as we wish when death approaches.