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.
References:
- 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)
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Thank you Dr Baillie for your effort to “slow” medicine. Because I talk with patients to know them and those that matter to them, l have always been a slow doctor. My Family Practice waiting room filling as the day progressed and I got further behind. As a Hospitalist, I am usually the last of us on shift to finish. Physicians need to remember that to alleviate suffering requires time and that alleviating suffering may main not treating
Dr. Baillie;
Good article and timely whether it is a rush to judgement concerning implantation of a pacemaker or other technology cardiac device. The indication must be very clear, the patient and family must understand exactly what is happening and why, and the physician must also understand why he/she is doing this procedure. And it must be clearly defined who and how will this patient be followed. Who then becomes the most responsible physician.
No regrets.
Your article reminds us to respect quality of life.
Dr. Arthur Dodek
Thank you, Dr. Baillie, for your thoughtful article. I also read “Being Mortal” and agree that it should be required reading for every medical student, resident and physician…No matter which area of medicine….
Dr. Vera Frinton
Beautifully put Dr Baillie. I couldn’t agree more. Thank you.
Great observations and judgement of the elderly/frail human care and their loved ones!
Dr Baillie
A great piece, thank you for adding this to a forum in which the emphasis is often place on the use of new tools and medications, rather than on taking a step back and seeing the patient as a whole.
I think our dialogue around death and dying needs to be much more open in order to ensure patients get the right kind of care at the end of life. Speaking about it early and planning for it really allows for people to have good deaths. These are full of bright moments, dignity, and human connection, including with those (like us) who support the medical aspects of their health along with the whole person.
As you know my passion is “Less is More in Medicine,” hoping to ensure patients get what they need but that they are also not harmed by unnecessary tests and treatments. This kind of thinking – with an emphasis on patients at the centre, evidence as information but not law, shared decision-making with truly informed consent, and sensibleness – goes by many names around the world. I quite like Dr V. Montori’s work on this, called “Minimally Disruptive Medicine,” which reminds us that all the appointments and tests and treatments and processes that we ask patients to undertake can, themselves, be a barrier to well-being. Unsurprisingly, with a nod to the slow food movement, “Slow Medicine” is well established in Italy. We could all use a little more of that.
It is fantastic to see Nanaimo so well-represented in this discussion; we are lucky to have specialists like you and Dr Carson in our community.
Jessica
Thank you for addressing this rather sensitive issue. Well said.
I also appreciated Being Mortal.
Very worthwhile contribution to this excellent series; thank you, Dr. Baillie. I agree that Atul Gawande’s book is a seminal work in the re-discovered area of doctors learning to accept our mortality.
My patients generally have no difficulty with accepting that their time is fast approaching; it is us doctors that mess things up badly, often, by offering that sliver of hope, where really, we are peddling an illusion, to consciously or unconsciously justify our role as treating physicians.
I would love to see a compulsory course on “End of Life’ being taught in all medical schools; particularly with ‘Doctor assisted dying’ now being legislated. Come on, UBC – there is a challenge !
Thank you, Dr. Baillie, for your wise insights.
A wonderful article that encompasses the need for good palliative care and discussion.
Well summarized and written – and such an important and timely topic. Thank you
Thanks very much Dr. Baillie for sharing your insights about this important – even critical – aspect of the work that we do. It has also been my experience that patients are often ready to discuss end of life care and plans, hopes and goals, if we allow a little space in the conversation.
I want to clarify the “turning off of the pacemaker” issue. I had a patient (who also ultimately died of pneumonia) but who, for 3-4 years prior to his death, had a pacemaker – defibrillator. The defibrillator functioned well, firing approximately once every 3-6 weeks and clearly keeping him going. His CHF continued to worsen, and his function declined. He became tired of the unpredictable and troublesome defibrillator firing. He simply wanted to be allowed a natural death. While we were able to convince cardiology to disable the defibrillator, they would not turn off his pacemaker. Some literature reviewed at the time (admittedly now 3-4 years ago) suggested that one would no more turn off the pacemaker if it was what was keeping someone alive, than one would remove a transplanted organ if one depended on that organ for life. The difference, in the ethics literature at the time being that the “thing” was now part of the patient. (One could stop dialysis, but not remove an organ; one could stop an external pacemaker, but not an internal one).
Perhaps there is a greater body of literature to guide this, and perhaps we have simply moved as a society to being more fully able to grapple with the question about allowing life to come to an end on one’s own terms. I note that you mention that d/c’ing the pacemaker function would be OK in “catastrophic illness”, but perhaps we are not yet at the point of being able / willing to do so in the event that someone is tired of the functional limitation that comes at the end of many chronic diseases like end stage CHF or COPD.
I look forward to your insights, and thank you again for sharing your reflection.
Good article. It voices my sentiment
Sarah
You make an important point. Deactivating an ICD seems straightforward. It is analogous to deactivating the airbag in a car when the car is no longer drive-able. It is a simple process, one that allows an arrhythmia to take us (I would argue there aren’t many better endings to terminal illness than a gentle VT in bed one night). We can write an order to deactivate an ICD, in the knowledge that sudden demise is unlikely to happen. When I do this (in patients with failing heart function), the patient and family are universally RELIEVED.
Deactivating a pacemaker (particularly in those who are dependent on it for heartbeats) is another matter. A physician has to be there with the family, in the expectation of a bradycardic event and asystole. It is something a pacemaker technician cannot do in isolation. Guidelines are less clear.
Whether the device or treatment is internal or external seems an exercise in semantics. We have the ability to artificially perpetuate existence: often improving quality, but in some cases, doing harm.
My sense is that this discussion (“a pacemaker can be turned off when catastrophic illness turns up”) does not happen at implant, or during the progressive decline in health this population can reasonably expect within the lifetime of a device. We need to address this topic, and create algorithms that ‘permit natural death’ – particularly if devices, designed to extend longevity, become agents of needless suffering. Palliative Care doctors, and Cardiologist-Geriatricians, should define best practices and compassionate care mechanisms in these very difficult circumstances.
HMB
I suspect this very important discussion with patients about ‘quality’over ‘quantity’ at the end of life will become more important than ever as my generation (baby boomers) come to realize that in spite of the best technology and medical interventions we will not, in fact, live forever, nor would we want to. Thanks for the reminder.
Thank you Hector for your valuable insight and a well-written article. My ICU practice has really evolved over the last 15 years – I now give a more informed approach to offering mechanical ventilation. Not surprisingly, many choose to maintain autonomy over length of life, especially when informed that their family will be asked the tough questions if they are intubated and ventilated. It makes for a meaningful discussion, in any case.