Have we become so obsessed with staying alive that we have forgotten how to have a good death, wonders Claire Black
The very nature of death, the mystery that surrounds it, breeds uncertainty,” Haider Warraich writes. “Uncertainty breeds fear, and contrary to general perception, never has death been as feared as it is today. The more medicalised death gets, the longer people are debilitated before the end, the more cloistered those who die become, the more terrifying death gets.”
As bedside manners go, Warraich opts for straight-talking. He graduated from medical school in Pakistan in 2009, and has lived and worked in the US since 2010. Currently a fellow in cardiology at Duke University Medical Center in North Carolina, Modern Death is his first book. A wide-ranging examination of a still culturally difficult subject, Warraich’s contention is that we need to get to grips with not only how to speak about death, but also with understanding what dying is, in order that we might question developments in end of life medicine as well as know something of what we want for our own deaths.
There is much to admire in Warraich’s book – its scale and ambition, the assiduous research evident throughout. He draws upon his personal experience as a clinician as well as medical history (details include Alexis Carrell, a French doctor who pioneered the stitching together of blood vessels and was aided in his practice by the teaching of Madame Leroudier, one of Lyon’s finest embroiderers), theology and ethics to examine not only how we die but also how medical and social developments are impacting on death, finding much of it troubling.
Many of us want to die at home but most of us don’t. It is estimated that by 2030 only one in ten people in the UK will die in their own home. A UK survey from 2012 found that while a third of people think about dying on a weekly basis, two-thirds were not comfortable talking about death. The interventions available to keep us alive are growing more complex and powerful and yet we – patients and doctors – struggle to speak openly enough to differentiate between needs and wants, impacts and outcomes. “In innumerable ways, medicine has made life better, and certainly longer,” Warraich writes. “But death itself is more harrowing and prolonged today than it has ever been before.”
Warraich’s thesis isn’t new. In fact, he quotes the American psychiatrist, Elisabeth Kubler-Ross, who pioneered the hospice movement in the US. “I think there are many reasons for this flight away from facing death calmly,” Kubler-Ross said in 1969. “One of the most important facts is that dying nowadays is more gruesome in many ways, namely, more lonely, mechanical and dehumanised; at times it is even difficult to determine technically when the time of death has occurred.”
Warraich’s aim is to push the debate onwards. He begins at the cellular level. The level of detail may seem almost absurdly microscopic, but Warraich seeks to extract a larger lesson. In simple terms, our cells are in a constant process of living and dying. Our health and wellbeing is dependent upon this process, “the ecology and mechanisms of death among cells denote how truly linked life is to death. In fact, when a cell ‘forgets’ how to die, it ends up becoming something that threatens to bring the entire organism down. Those are cells that cause cancer.” The message is clear: cells die to promote the good of the organism. The warning is stark: “the only thing worse than a cell that forgets how to live is one that refuses to die.”
Warraich considers the thorniest of ethical issues – resuscitation, vegetative states, assisted dying. The human stories he shares are filled with the kinds of everyday tragedy that makes many of us marvel at what doctors do. He poses the most difficult of questions: who has the right to end a life? How do the rights of the individual patient intersect with the medical establishment and society beyond that? What I was struck by, particularly when reading the harrowing descriptions of resuscitation efforts, was how little we see and know of the reality of these processes. As with childbirth, cultural representations tend to be grossly oversimplified and sanitised.
Warraich’s foray into this most contested of territories couldn’t be more timely as demonstrated by the cases of 11-month-old Charlie Gard and that of Noel Conway, the 67-year-old with Motor Neurone Disease whose legal challenge to the UK’s ban on assisted dying has in recent weeks reached the High Court.
There are no easy answers here, but Warraich is refreshingly honest. He advocates legally binding living wills (known as Advance Decisions in the UK) and the rights of terminally ill patients to “demand and acquire the means to end their suffering with the aid of a physician”.
The truism that Warraich seeks to challenge is that there’s nothing worse than death. In fact, from his position on the frontline of medical care, there are many things. This is useful information, vital one might say, and unsurprisingly not always easy to digest.
Modern Death: How Medicine Changed the End of Life is published by Duckworth Overlook, £20
Claire Black is a Gestalt therapist, based in Edinburgh