‘goodbye, inhaler!’
Chronic illness as a Sisyphean bargain.
Sisyphus was a legendary king of ancient Greece who was condemned by the gods to eternally roll a rock up a hill, only to have it roll down again each time as it neared the top.
Many people with chronic illness today may be able to relate. Chronic illness can mean years or even decades of worsening symptoms and ever more complex medication and treatment regimens, side effects of treatments, treatments for side effects, monetary pressures, activity limitations, a sense of separateness from the legions of the merely ‘walking worried’ around us, and the subtle pervasive tension and vigilance of never quite knowing what might come next.
The ironies of advanced medicine.
The assumption, of course, is that all the effort is worth it. And it is: many of us benefit from, or know people who benefit from, drugs that keep them alive when 50 or 100 years ago they would have died long ago, or keep them able to walk, or breathe without a struggle, or sleep without excruciating nerve pain or the itching of terrible skin sores, and so on. Life has always been about compromise; these are simply new refinements of a universal equation.
The fantasy of freedom.
That said, nearly everyone with one or more serious chronic illnesses has fantasized about freedom at some point—a sudden cure, or, that failing, just waking up one day and throwing all the equipment and vials and syringes and pill bottles right in the trash. This is even more the case, one might easily imagine, among the terminally ill, especially those who’ve seen a gradual curtailing of possible freedoms and meaningful activities, a closing in of life to a series of steadily shrinking islands in a sea of general near-emergency.
Choosing your ‘own death.’
This month’s Reflections essay, “A Patient’s Final Freedom,” is about just that kind of existential decision, that simple act of refusal in saying, “No more!”—or, to quote Melville’s famous character Bartleby the Scrivener, “I’d prefer not to.” The illustration, of an inhaler flying through the air, conveys an aspect of a patient’s newfound freedom in her choice to die on her own terms.
Written by a nurse practitioner in Toronto who was asked by a terminally ill COPD patient to be present at her final moments (medical aid in dying, MAiD for short, is legal in Canada), the essay manages in one page to capture all the awkwardness, strangeness, and intensity, the peculiar mix of humor and the otherworldly in this event shared by a patient and a roomful of loved ones and clinicians.
The actual event.
While aid in dying is not legal in much of the United States yet, and some nurses may recoil from the facts of the basic situation, or disagree with this patient’s choice, the encounter described here is faithfully rendered and without any apparent attempt to persuade. As we continue to debate possible changes to laws in our own states to allow patients such choices, it may help us to have such pictures to refer back to.
My aunt, then in her early eighties, had an infected knee prosthesis and she was advised to remove it, be knee-less for a period of time, and then a reimplant, with, of course, the caveat that that one might be infected by occult leftovers from the first one too. She was a brilliant woman, mathematics faculty in her day. She said no. She had had entirely enough of hospitals and “rehab,” of which there was none. She was adamant. They tried to get her declared incompetent, but her family said she sure as hell wasn’t, and that was that. Her mother died in her own bed of cancer having outlived her physician, and under the care of home nursing with good pain relief. Her brother ate a bottle of oxycodone when his condition became unbearable. While we miss all of them, none of us have the least bit of unhappiness at their choices, least of all me, the only medical person in the family. By contrast, another more distant relative, a physician himself, died a prolonged and very ugly death of widely-disseminated carcinoma with no identified primary, tubed and vented and somewhat sedated (so as not to “hasten” things) in the ICU. His children have that memory for the rest of their lives. “The quality of mercy is not strained / It droppeth as the gentle rain from heaven / Upon the place beneath. / It is twice blessed: / It blesseth him that gives and him that takes … We do pray for mercy / And that same prayer doth teach us all to render / The deeds of mercy … ” ~ Portia, in The Merchant of Venice, Wm Shakespeare.