Risky Medicine: A Doctor-Son's Take
This week on White Coat Black Art, we explore the risk inherent in health care, how we differ in our understanding of risk and how your decision-making may or may incorporate our understanding of risk. When an aging loved one has trouble swallowing, health professionals may recommend a feeding tube. Dr. Michael Gordon, one of Canada's most celebrated geriatricians, says he's having conversations about the pros and cons of feeding tubes with patients and their families more and more these days. He talks to me about those conversations. But what I really wanted him to talk about was the experience he had with his medical colleagues when they suggested a feeding tube for his dad, the late Max Gordon. In the end, Gordon stared down his dad's physician and said no despite the risk. I'd heard Michael talk about that at a conference put on last April by Fraser Health Ethics Services. I loved Gordon's compassionate and empathetic words because they run counter to the sterile, risk averse culture of modern medicine.
Many of the people who care for you are determined to avoid letting patients take risks. Nobody wants patients to die on their watch. If that happens, the resulting investigation alone makes you determined to avoid it again. Who wants to get sued for negligence? Who wants to be second-guessed by families who say in hindsight that they didn't appreciate the risk? In the "do no wrong" hospital culture we work in, our boss may be standing by ready to say 'gotcha' the moment a bad outcome happens to a patient.
All these thoughts coalesced in my mind because of my mother, Shirley Goldman. I've spoken about my mum often on the show. She is in the late stages of Alzheimer's disease, which has robbed her of her memories and - oftentimes - her dignity.
Until two years ago, my mother lived with my dad at the home they shared for more than fifty years. Then, my mum developed severe dehydration and had to be admitted to hospital. There were many reasons for this. The most important was that my mother had lost the motor and cognitive skills needed to feed herself.
I can remember very clearly the day in hospital when my mother started feeling better after receiving fluids by intravenous drip. An orderly brought a tray of soup and beverages to my mother's bedside. Not being too far removed from my infant feeding days, without even thinking, I picked up a spoon and started to feed my mother. I was delighted that she responded to me - not with words - but with facial expressions. Soon, she was using smiles, eye rolling and furrowed brows to teach me that a beverage alternated with pureed pasta helps the main course go down more easily, thickened juices are more delicious than plain water, and dessert is always welcome even when the main meal is not.
I will always remember with bitter regret that for far too many years, I saw only my mother's cognitive deficits but failed to see that in every other way, she was still here. Feeding my mother has allowed me to reconnect with her in an elemental way. How much harder would it be to spend time with her if I wasn't permitted to feed her?
This is no idle concern. A study published in 2011 in the Journal of the American Geriatrics Society said ninety percent of patients with advanced dementia have problems feeding themselves, lose weight or choke on food. Within a short few months of developing feeding problems, many such patients die of aspiration and pneumonia.
I had seen my mother cough occasionally when I fed her fluids - more so than pureed solids. I especially noted her tendency to cough more when she was fed thickened milk. We stopped that and it seemed to help.
Then, last spring, my mother was again admitted to hospital with dehydration. I was on vacation abroad with my family when my sister called me frantically. She said the people looking after our mother were quite concerned that she couldn't protect her airway; that's code for saying they feared she would aspirate food and beverages every she tried to swallow them. My sister said the medical team in charge of our mother's care ordered as swallowing study to see if she could protect her airway well enough to be permitted to swallow.
Remembering Michael Gordon's wise remarks at the conference in April, I remembered how much my mother enjoys dessert. Even at the end of a long journey with Alzheimer's disease, if all else fails, I can still coax her to accept some pudding or ice cream.
"But what if she aspirates," my sister asked me. I could sense that my sister was talking the same language as the risk-averse health care team.
"What if she can't have dessert again?" I countered.
"We can't do that," my sister said.
And that was that. My sister and I have Power of Attorney for our mother's health decisions. Like Michael Gordon, we said no the 'no-risk' culture of health care. In the end, our mother passed her swallowing test well enough that the team didn't think she was at imminent risk of choking or aspirating her food.
That was six months ago. Since then, my sister and I and a personal support worker we hired have continued to feed my mother her meals. My heart skips a beat or two whenever she has a coughing fit. But we've decided the taste of ice cream in our mother's mouth is worth the risk.
Though we'll never know for sure, we'd like to believe our mother agrees with our decision.