Holy grail: live fully, die well
At the first glance there’s a paradox in the stories of people with terminal conditions who do all they can to live longer through medical interventions only to change their mind, stop therapy, and allow themselves to die.
Why not fight to the end? some ask. Why waste all the effort that you and your doctors have put into extending your life only to throw it away?
Anyone who has signed up for life-preserving therapies, as I have, knows the cost of living longer with a terminal disease.
Endless treatment. Mounting side-effects. The emotional rollercoaster we ride as the disease rises and falls (and rises and falls). The pain and indignities we endure from recurrent surgery, radiation and medications. The way our diaries have morphed from a vast array of work and social and recreational entries down to interminable medical appointments.
I’ve had many painful things done to me in the name of treating recurrent, refractory myeloma. I will not bore you with the details but suffice to say that now, after nearly seven years in treatment, the holy grail of remission has arrived. The graph below shows four years’ of data and is typical of the ups and downs of “successfully” treating an incurable disease.
For the first time, cancer has been brought to its knees, but so have I.
Whether it’s the impact of the new experimental immunotherapy drug (Belantamab), the cumulative effect of seven years of chemotherapy, the myriad effects of persistent myeloma in the body, simply growing older, or some/all of the above, I feel I can’t go on living this way much longer.
Despite being in remission thanks to Belantamab, I’m still in treatment as part of a clinical trial that gives me access to the drug. Under the terms of the trial, treatment will continue until one of the following occurs: myeloma progresses because the drug becomes ineffective; the side effects become too harmful or unacceptable; patient death; or I decide for whatever reason to cease treatment.
For people with terminal and life-shortening illnesses, the allure of cadging more time through medical treatment often involves a fantasy of a life that’s barely interrupted by therapy. Many imagine that life-extending or curative therapies will simply involve a benign and temporary change in circumstances. This is rarely the case.
Too often, the side effects of surgery, radiotherapy and other aggressive interventions diminish a person’s ability to resume their former life, to say nothing of fulfilling their hopes for a better, longer life.
For five years, Stephen Jenkinson was program director of a palliative care outreach program at a major teaching hospital in Canada. In that role, he witnessed the often-devastating impacts that medical interventions had on terminally ill people.
He also saw people who were wholly unprepared for the existential crisis triggered by living longer in the face of a delayed death.
“More time, when it finally kicks in, is the rest of a dying person’s life, and the rest of that life will be lived in the never-before-known shadow of the inevitability of their dying. For the first time in their lives they will live knowing that they will die from what afflicts them. More time means more time to live their dying.
“It means more symptoms, more drugs for the symptoms, more drugs for the side effects of the first drugs, more weakness and diminishment and dependence to go along with more time with the kids or grandkids or walks in the park with the dog.
“That’s not all it means, not necessarily, but more time almost always means more dying. No one is born, no one walks in the park or sits looking out the window knowing how to die like that, slowly and visibly and knowingly. Very few here on these shores, where death phobia rules, learn how, or want to.”
Stopping treatment would allow the dormant myeloma to surge again and, in the absence of any other treatment, I would die of the disease and its complications. That was always going to be the case but now it feels like I’ve reached the crossroads. I got seven more years of life and I’m grateful for the unique and exquisite experiences it afforded. But as Stevenson suggests, there comes a time when the existential and physical toll of living this kind of life becomes unsustainable. Unacceptable. Unliveable.
Ceasing treatment and dying from myeloma is likely to be painful and protracted. It’s not the kind of death I want even with access to enlightened palliative care, which is rarely the case for most people. I do not want to die in a hospital or a hospice, gasping for air, filled with pain, begging for morphine. In practical terms, that leaves physician assisted suicide (voluntary assisted suicide) or taking one’s own life.
Individuals who want an assisted suicide that’s approved by the state need to qualify by satisfying many criteria, such as having a terminal illness, proving they’re of sound mind, voluntarily expressing their wish to die, and taking a specified, lethal dose of drugs themselves. A doctor’s assistance is usually limited to writing a prescription for lethal drugs. Voluntary assisted suicide is not available where I live.
Exit International is an organisation that advocates for the legalisation of voluntary assisted suicide. Because this is legal in just a handful of countries, Exit International supports people who want to kill themselves by providing information about how to procure lethal substances and procedures that cause a quick, painless, peaceful death.
The organisation was founded by Dr Philip Nitschke, who was the first doctor in the world to administer a legal, lethal voluntary injection under the short-lived Rights of the Terminally Ill Act in Australia’s Northern Territory.
Avril Henry was an English activist who campaigned for the legalisation of voluntary euthanasia and a former professor of English medieval culture at the University of Exeter. She was 81 years old when she died at her home in the UK. She died of a Nembutal overdose.
She had planned her suicide for some time, telling friends and extended family that she had had a wonderful life but now was the time to go. At the time of her death, she was confined to a wheelchair, living alone, with a rapidly deteriorating quality of life. She’d decided that a trip to Switzerland for an assisted suicide was too difficult and besides, she wanted to die at home and be buried in her orchard.
Being the organised person that she was, Avril took matters into her own hands. She got a copy of the Peaceful Pill Handbook through Exit International and imported the same drug that she would have been given in Switzerland, sodium pentobarbital (Nembutal).
With her funeral and burial pre-paid, she was buried soon after her death in her beloved orchard, just as she had wanted. She left a lengthy suicide note explaining her actions.
You can hear her full story at The Longreads podcast program.
Would I take my life if I had no other alternative? I’ll wait and see. If dying is bearable, the pain can be well managed and I’m not stripped of my dignity and self-control, then I’m open to dying naturally. If not, I will make a quick exit.
Dan Gaffney is a teacher and author. He leads workshops and educational events and hosts a men’s group in the Blue Mountains. His book and podcast series, Journey Home — Essays on Living and Dying was published in November 2019.
