Choosing life in the face of death
‘If we can, we should’ has become a kind of mantra in modern medicine. Faced with a choice between certain death, long-term chronic ill health or the tantalising prospect of a cure, few of us can resist choosing more treatment. But the experience of many who choose medical intervention isn’t what they imagined.
There’s good evidence to show that people who choose interventions to address life-limiting conditions endure more illness, more complications and less autonomy than those who choose palliative and hospice care.
They’re more likely to die in an intensive care ward of a hospital, tethered to tubes and machines, with little privacy or dignity, often in a setting that imposes a relentless routine of disruption. Deep restorative sleep is rare, as anyone who has spent time in hospital knows.
This isn’t what folks imagine for themselves, nor is it what they expect from modern healthcare. Further, it’s light years from the enlightened care that can and should be available to dying people and their grieving loved ones.[i] [ii]
For people with terminal and life-shortening illnesses, the allure of gaining more time through a medical miracle can mean a fantasy of a life hardly interrupted by medical care. They imagine, perhaps like I did, that life-extending or curative therapies involve a small or temporary change in circumstances. Unfortunately, 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.
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 last-gasp 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.’ [iii]
Multiple myeloma is a treatable but incurable blood cancer, and I’ve now lived ten years being treated for it. A decade of uninterrupted chemotherapy has shattered my body, altered my brain and messed with my moods. I retired from work five years ago because cancer and its treatment made it physically and psychologically impossible.
Together, chemo and myeloma have flattened my immunological defences, and I have experienced a litany of consequent diseases, including metastatic melanoma, which was recently cut out of my chest after invading my lymphatic system. I’m now chained to the medical system, and take a daily cocktail of pills and potions to treat cancer, neuropathy, blood clots, bone loss and more besides.
When is enough, enough?
So, when is enough, enough? Why continue treatment when more time means more time to live my dying? I press on because I am still independent and have a high quality of life. Further, I feel happy and purposeful, and I’ve created ways to make positive contributions to the lives of my family and friends and local community. In the five years since I retired, I successfully advocated for the funding of a new palliative care unit at Nepean Hospital, I published a book and podcast series about living and dying well and I refreshed my therapeutic skills by completing a graduate diploma of counselling.
I’ve now begun working past-time as a psychotherapist at Finding Space in Sydney’s eastern suburbs (and via tele-health) and contribute some of my time as a palliative care support volunteer. These individuals are in palliation for end of life and life-limiting medical conditions — people much like me. I support them with regular home visits, conversation and practical issues such as transport to medical appointments and shopping. I also bring value by hosting men’s circles that provide men with opportunities to speak candidly about their lives and the challenges they face. This compliments my contributions to men’s rite of passage experiences through the Mankind Project.
But pressing on with treatment isn’t everyone’s choice — something I’ve witnessed first-hand as a patient and palliative care volunteer. Every procedure, every incision, every dose of drugs and radiation has an unintended consequence for a person already weakened by their disease and what’s done to them in the name of healthcare.
So when the time comes, people have a host of different reasons for ending life-extending treatments. Some are philosophical, some spiritual, some financial — and some come down to a conviction that, whatever they might gain in terms of more time, more life isn’t worth the cost anymore. [iv]
The writer and surgeon, Atul Gawande, has noticed these end-game decisions many times and says people with serious diseases often have higher priorities than prolonging their lives. But not always. Sometimes, people in these circumstances find themselves agreeing to new and even aggressive procedures even though, deep down, they have quite different goals and desires for themselves. Sometimes, the mantra that says ‘if we can, we should’ is too damned seductive.
Gawande notes that ‘surveys find that their (patients’) top concerns (for ending life-extending therapy) include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete.’
Yet at the same time, he notes, ‘our system of technological medical care has utterly failed to meet our needs, and the cost of this failure is measured in far more than dollars.’[v]
Dying well
Dr Linda Sheahan is a palliative care doctor who consults to health professionals about issues that come to the fore as people approach dying and death. As a palliative care specialist, she’s also responsible for the medical needs of dying people.
Dying, and dying well, is more than just a physical experience, she argues.
‘Dying well is really no different from living well insofar as it calls for conscious awareness, reflection, planning, and being mindful and good hearted about how we conduct our relationships.
‘Dying well is like an action phrase,’ she says. ‘People die well as part of how they live their life. It’s part of the journey, so thinking about it as something separate to life is a category mistake. To the question what does dying well mean, I’d say it means the same thing as living well and ageing well.
‘Of course, there are some extra features to mention. From a medical viewpoint, it includes good pain and symptom control. It also calls for good preparation for death — being aware that it’s coming and getting ready for dying, and clear decision-making as people approach dying that is informed by clear goals and priorities.
‘There are also important existential issues to consider. One is to achieve a sense of completion, meaning that life has fulfilled its meaning. Another is to consider what our legacy is going to be and to complete a life review as part of achieving completion and what we leave behind.
‘Achieving completion has several important community dimensions to it, including the gathering together of friends, communion with loved ones, and the resolution of interpersonal conflict. There’s also something to consider in terms of reciprocity and our capacity to give something back — to carers, family and loved ones.
‘I also think that having an absence of fear helps us to die well — that some sort of peace has been come to — that dying is here — and that it’s part of living, and that it’s okay. I think this is one of our biggest problems, not just in the medical milieu but in society more broadly. Seeing that our time for dying has arrived can help us to frame the time that is left.’[vi]
But with so much cultural impetus driving us to seek cures and the allure of more time, who can guide us on the road less travelled? Who will support us in saying enough is enough? And who can mentor us in our preparations for dying and death?
Resources and inspiration
The Death Letter Project. Tina FiveAsh, 2017.
What is death? What happens when we die? Fifty Australians were invited to write a letter responding to these two questions.
A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death (TED Talk), Dr BJ Miller.
Wise words and solid advice from BJ Miller, who thinks deeply about the end of life as head of the Zen Hospice Project.
Falling Into Grace: Insights on the End of Suffering, Adyashanti. Sounds True, 2011.
A crystal-clear account of why we suffer and how to end suffering by waking up from the illusion that we are a separate self.
Last Acts of Kindness: Lessons for the Living from the Bedsides of the Dying. Judith Redwing Keyssar, CreateSpace Independent Publishing, 2010
When Plato was asked to sum up his life’s work, he said, ‘practice dying.’ Last Acts of Kindness provides a glimpse into this practice through the stories of those who have lived and died.
The Four Things That Matter Most: A Book About Living. Ira Byock, Atria, 2014
Stories from people who have turned to this life-altering book in their time of need. This book about what really matters reminds us how we can honour each relationship every day.
The Ultimate Journey: Consciousness and the Mystery of Death. Stanislav Grof, Multidisciplinary Association for Psychedelic Studies, 2006
A book that draws on old wisdom and modern science to reveal the significance of birth and death. Alive Inside (film). Michael Rossato-Bennett, Ximotion Media, 2013
A joyful cinematic examination of music’s capacity to awaken our souls and probe our humanity.
Extemis (film). Dan Krauss, Netflix, 2016
An extraordinary documentary that reveals the devastation experienced by three dying patients and their families because they didn’t speak up sooner about life and death choices.
Consider the Seed. Shozan Jack Haubner, Tricycle Magazine, Fall 2013
Reflecting on our cosmic origins, a wayward monk reveals how nature demands that we must die in order to grow.
Zen Mind, Beginner’s Mind. Shunryu Suzuki, Weatherhill Inc, 1970
A popular and easy-to-read book on Zen and Buddhism in the West.
Death’s Summer Coat: What the History of Death and Dying Can Tell Us About Life and Living. Brandy Schillace, Pegasus Books, 2016
An absorbing exploration of the history of death and dying and the rituals that surround it, this book examines the many ways that humans have dealt with mortality throughout history.
When Breath Becomes Air. Paul Kalanithi, Random House 2016
A life-affirming reflection about facing death and the relationship between being a doctor and patient, by a gifted writer who became both. Neurosurgeon and father, Paul Kalanithi died at age 37 while working on this profoundly moving book.
Death Is Hard Work. Khaled Khalifa, Faber & Faber, 2019
An old man dies in a hospital bed in Damascus but tells his youngest son, Bolbol, his final wish is to be buried in the family plot in their ancestral village in the Aleppo region. Bolbol and his estranged siblings embark on an odyssey through war-ravaged Syria to honour their father’s wish. Hard Work is an unforgettable journey into a contemporary heart of darkness.
No Mud, No Lotus: The Art of Transforming Suffering. Thich Nhat Hanh, Parallax Press, 2015
The secret to happiness lies in recognising and transforming our suffering, rather that running from it. Zen master, Thich Nhat Hanh recommends practices such as stopping, mindful breathing, and deep concentration to foster mindfulness so that we can be in touch with our suffering without being overwhelmed by it.
References
[i] Martin, CE (2015). Zen and the Art of Dying Well. The New York Times, August 14
[ii] Mooallem, J (2017). One Man’s Quest to Change the Way We Die. The New York Times, January 3
[iii] Jenkinson, S (2014) Die Wise: A Manifesto for Sanity and Soul. North Atlantic Books, Berkeley, California, p35
[iv] Smith, NM (2016). Other People review: cancer comedy lets Molly Shannon wring all types of tears, The Guardian, January 23
[v] Gawande, A (2014). Being Mortal — Illness, Medicine and What Matters in the End, Profile Books, p155
[vi] Sheahan, L (2015), Dying well — Dr Linda Sheahan, palliative care medical specialist, YouTube, October 8
