“I am worried that you’re getting sicker. Help me understand your wishes.”
In a way, this is an impossible question for a man too breathless to talk. The moment his oxygen mask shifts, what little he says is lost in the jangle of machines. The flashing numbers are not compatible with life but, disturbingly, the final question is always the same: intubate or palliate? One invites lights, machines and a stab at prolonging life. The other is a path away from heroics and towards an acceptance of mortality.
For two vastly dissimilar choices, it’s astonishing how often they are perceived and offered as equal. Having never met him, I don’t know his values and he says to ask his sister.
His sister is his 80-year-old twin, devout of faith and misguided about medicine. “Darling, you can fix him.” This is no time for niceties. I tell her that with his collection of prior serious illnesses, the pneumonia will be a fatal event. If, by chance, he survives, he will require another facility and his independence will not return.
I worry that he will be intubated. Medicine frequently errs on the side of doing too much, lest it be accused of not doing enough. The intensive-care physician is waiting in the wings; I observe that sometimes the way forward is to explicitly relieve conflicted relatives of the burden of decision-making and bear the weight ourselves. Beyond this, I can’t do any more, which troubles me.
I’m rueing the situation when an email arrives. You’ll enjoy this, my book publisher promises.
A terminally ill cancer patient has one final wish: to know how Hilary Mantel’s third and final book about Thomas Cromwell in the court of Henry VIII ends. But there is a problem, for The Mirror and The Light has yet to reach the shelves at that stage. Cancer can be fickle, and what oncologists deem weeks to live can quickly turn into days. Not taking any chances, the patient’s daughter sets out on a bold mission and makes the improbable happen.
I reach out and she sends me a photo that says it all: a beaming daughter is reading Mantel to a smiling mother resting in bed. Love illuminates the space. And while who knows what private regrets they harbour, what one sees in the picture is undeniable dignity and peace. What a memory to cherish, I think, involuntarily thinking of my hapless patient.
I don’t know these people, but I can’t help wondering how this patient made the decision that others find unthinkable. Perhaps she was always the thoughtful and deliberate type who knew that when the end came, she would value quality of life versus its extent.
Most people have never considered their death. On one hand, this is unbelievable in the literal sense. Everyone must die and we have all lost someone we love. But on the other hand, it is not unbelievable that in a glossy world that craves instant gratification, there is no pressing need to contemplate mortality, and the question of how to conduct ourselves at the end of life becomes so foreign as to be confronting. When I ask patients what they want at the end of life, many are genuinely bewildered. “I don’t know. I didn’t think it would happen to me.”
Being an oncologist, I can’t help wondering if the patient had a doctor who held her hand and discussed the options with honesty and transparency, neither abandoning her nor lending false promise. Cancer treatment has entered an era where there is always “something else” on offer. But whether that something else delivers benefit, and at what financial and psychological cost, is a whole different conversation, one that takes a different quality of investment and interest in the whole person. Cynics might say those days are gone but I don’t believe so, although admittedly the style of modern medicine makes the task much harder.
Perhaps her doctor was prepared to help her navigate difficult decisions at the end of life. Or she had a skilled nurse who counselled her to not lose sight of what mattered to her. Or she possessed a firm mind of her own and had the backing of her family, who listened to her without imposing its will on her actions. Whatever the combination, it allowed her to stay out of hospital, spend time with her children and leave them with good memories. This is no simple feat. Indeed, it is increasingly difficult to achieve, even as the population ages and quality of life takes a hiding in the aftermath of unnecessarily aggressive interventions.
The pandemic has exacerbated many worries, among them the anxiety of “missing out” on a ventilator. For certain patients, intensive care makes the difference between life and death. But for many others, especially those with poor function and pre-existing serious illnesses, it is merely prolonging the inevitable with the addition of pain and suffering. Consequently, asking whether everyone deserves to go on a ventilator is the wrong question. The real question is who benefits from one.
The patient I consult on eventually dies in hospital. No one ever got to decide how he’d die; as a result, he went in the same desultory fashion of many patients, undergoing tests and piecemeal interventions until the end. No one considers this good medicine, but sadly it happens every day in every hospital.
Long after my publisher’s email, I leap at my own copy of The Mirror and The Light. Reading it, I can’t help thinking of a fellow human reading the same book with a special urgency I never had.
But how to ask someone if her dying mother got through a book? Would it be uncouth, uncaring or, more concerningly, unkind? After arguing with myself, I write to the daughter explaining that her mother’s story is an antidote for our times.
To my relief, she responds immediately and warmly. Her mother lived long enough to enjoy the book. They skipped some pages but got to the powerful end and the author’s notes. Amid failing health, they found animated times and a wonderful way to stay connected until she died. The family misses her but is fortified by her courage. I tell her we could all learn something from the way her mother lived and died, but I think she knows that.
Later, she sends me a note to tell me that for her memorial, her mother chose this quote from Jane Eyre: “There is no happiness like that of being loved by your fellow creatures and feeling that your presence is an addition to their comfort.”
This article was originally published in The Guardian and has been republished with the author’s permission.