Hector Baillie MD FRCPC (biography, no disclosures)
What I did before
They say “Good judgement comes from experience, and experience comes from … poor judgement”. There is no doubt that, as one ages, we learn from experience. Hopefully, we pass this knowledge on to our residents and students.
What changed my practice
Last year, I read 2 books; books that made me reassess what I do, and made me think how I might improve. The first, ‘Being Mortal’ by Atul Gawande, is probably the better known. Dr Gawande, a cancer surgeon, starts with the simple sentence, “I learned about a lot of things in medical school, but mortality wasn’t one of them”. He cites the suffering of Tolstoy’s Ivan Illyich, dying from an unknown disease, longing for the pity and comfort that one expects with terminal illness. Gawande describes one of his own patients, with metastatic cancer, for whom remarkable intervention (extensive surgery) could not realistically have prevented his imminent demise. Yes, his patient made a bad decision, to proceed: but more importantly, he observes “how much his doctors avoided talking honestly about the choice before him”. Gawande and his team were pursuing a delusion as much as the patient was. Rather than a palliative approach, a frank discussion and comfort measures, they offered him ‘another treatment’. In modern times, the care they gave was not much better than that received by Ivan Illyich.
Gawande notes how scientific advances have turned the process of ageing and dying into medical experiences, managed by a gaggle of health care professionals. Death equates to a failure of medical care, rather than an inevitability of the human journey. There is ‘nothing more threatening to whom you think you are – than a patient with a problem you cannot solve’. And in a futile charge to establish our sense of control and competence, we prescribe treatments and interventions that “addle their brains and sap their bodies for a sliver’s chance of benefit”.
His book is a cornucopia of medical, social and political wisdom. We learn of the worldwide aging demographic, attributable more to advances in social well-being and public heath than any medical intervention. From pillars of stability and security, the aged have now become a liability to their far-flung offspring. A century ago, 60% of retirees lived with a child. Today 10% of Europeans over 80 live with family, and half are entirely alone. When we cannot look after ourselves because of age and infirmity, what do we do?
This book is a powerful text, one that our students and residents should read and learn from. And economists and politicians, doctors and nurses, social workers, our children and their children. Learn what it is to be a care-giver, a healer, a fellow human being. To focus on the quality of our lives as much as the quantity. Maybe what is needed is not be another pill, or another test, or a remarkable device. It might be a kind word, a home visit, a podiatrist visit, or a family conference. And are we training enough geriatricians for this tsunami of the elderly?
It is at this point I should introduce Katy Butler’s book, ‘Knocking on Heaven’s Door’. Where Dr Gawande’s book is peppered with patient stories, anecdotes and insights, Ms Butler’s is from a different perspective: a caring daughter with ailing parents 3,000 miles away. Her father, Jay, a 79 year old professor, has a devastating stroke. She describes him in hospital following this event: “stripped of his usual clean clothes, commanding Oxford accent, and confidence, now in a wheelchair, catheterised, naked beneath a hospital gown, a member of the classless fraternity of the stricken”.
Shortly thereafter he was noted to have an asymptomatic bradycardia. To facilitate hernia surgery, a pacemaker was inserted. Her book describes his descent into advanced dementia, her mother’s role as primary caregiver, and the medical establishment’s failure to act as compassionate navigators in dark times. The focus is on fast medicine rather than slow medicine, with the predictable strain on family and friends. As his incapacity worsens, and his dependence increases, his wife, Val pleads with Katy: “Please help me get your father’s pacemaker turned off”.
Early on, Jay Butler filled out the requisite papers – power of attorney and DNR. These turned out to be ‘expensive and flimsy amulets’ – when dementia took away his intellect and right to self-determination. An age-old faith in institutional medicine and its practitioners was not rewarded with the support the Butlers’ needed. The cult of saving lives (at great cost), and transforming death (usually in an ICU) was driven by the values (sic) of a healthcare system built on past successes. Katy notes the fiscal realities that support interventional medicine, in particular in her review of pacemaker companies marketing strategies and profit margins. And she describes our new way of dying: “Often there were no last words because the mouths of the dying were stopped by tube of respirators, and their minds sunk in chemical twilights to keep them from tearing out the lines that bound them to Earth”.
Jay dies of pneumonia. Val takes back her moral authority from a broken medical system, and declines surgery on her aortic stenosis. She dies soon after.
I think the juxtaposition of these 2 books made their impact all the greater. It did change my view on medicine. As an internist, I am fortunate to have the time to spend with older patients and their spouse, to review more than one problem, to do my best to optimise their care. But I don’t do home visits. My family interactions are short. And even though I resist external influences, I am the target of marketing by pharma and the device world.
What I do now
When a very old patient comes to my hospital for a pacemaker, I now spend longer with them. I explain what this device can do, and what it cannot do. Do they understand? Where are your family members, they need to understand too? I take time to get informed consent, when previously obtaining the signature was the most important part of the exercise. I tell the patient and their families, this device (like ICDs (implantable cardioverter defibrillator)) can be turned off in the event of catastrophic illness. I always assess mental competence before advocating extraordinary measures to prolong quantity. Without quality, who wants quantity? And I am more circumspect when treating the very elderly with aortic stenosis, who – it seems – are encouraged to sign up for a tAVR (Transcatheter Aortic Valve Replacement): especially if frailty is present, and symptoms might be allayed more conservatively in the final year of life. I see these patients in the Heart Failure Clinic, where we strive for the best but must also prepare, in practical terms, for the worst.
In short, I have a greater respect for ‘slow medicine’ in those who have aged less well, and who fear the future more than dying. I hope my successors will be well versed in all aspects of elder care: one day, we will depend on their compassion and their wisdom.
- Being Mortal: medicine and what matters in the end. Atul Gawande (2014) 282 pages. Doubleday Canada. (Request from CPSBC or UBC)
- Knocking on Heaven’s Door: the path to a better way of death. Katy Butler (2013) 336 pages. Scribner. (Request from CPSBC or UBC)