Weeks before major surgery, a patient cancels his appointment with our geriatric oncology service, declaring it unnecessary. An astute nurse convinces him otherwise.
In his mid-80s, the patient has been diagnosed with an early cancer. The surgeon advises that surgery would be the only cure but, noting the lack of urgency, sends him to see me. I can see why. The proposed procedure is long and complicated; in elderly people, even temporary setbacks can result in long-term effects.
I start by asking the patient to describe his day.
Each morning, he tends the garden before having coffee with old friends. He returns home with the fresh salad leaves his daughter-in-law relishes. After dinner, which sometimes includes the grandchildren, he retires early. His son adds that his father’s memory is beginning to falter but an established routine keeps him functional. They both praise his quality of life as being ideal.
My patient hates the notion of an “intruder” in his body.
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“I just want it gone,” he says.
I reassure him that this is understandable but we should discuss in some depth his decision to undergo surgery. The patient balks, his son is eager to talk.
I explain that his risk of any complication is high and even reversible events such as delirium, infection and electrolyte imbalance can cause prolonged difficulties. Patients often worry about “dying on the table” but that’s rare – it’s the aftermath that matters.
The surgeon and I estimate the early cancer is unlikely to cause problems during his lifetime. I say we are not opposed to the surgery itself, rather we want to make sure he understands its ramifications.
But by now, the patient has tuned out.
“I know you’re tired, so here’s a simple question,” I try. “At this point in your life, what matters to you?”
His face lights up. “Meeting my friends. And buying salad leaves for my daughter-in-law.”
The son is visibly surprised by this beautiful sentiment.
“And if you were no longer able to do this independently?”
“Then it’s not a life I would want.”
This one articulation becomes the turning point that allows an honest discussion about what he values and the perceived cost of lost independence. I can’t help but notice that the patient who engages in this more personal conversation is entirely different from the patient who had lost interest in a generic discussion of the benefits and risks of an operation.
I ask the pair to reflect on our talk. Later, when they cancel surgery, their explanation is telling – making a fast initial decision, even the inappropriate one, had relieved the distress of indecision. But once the patient had voiced what mattered to him, the right decision was clear.
I recalled this encounter as I heard a thoughtful talk at a conference about shared decision-making in healthcare.
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At its simplest, this involves equal parts doctor and patient – the doctor bringing medical knowledge and the patient contributing personal preferences to reach a collaborative decision that is right for that patient in those circumstances.
Doctors might say it’s what they do but, far too often, patients report not understanding that they have a real choice, which includes saying no. This is reflected in decisional regret: “If only I had known then what I know now.”
This is not a result of either party’s motivations, “care factor” or even attention to detail. How can doctors and patients make a shared decision if they don’t speak a shared language?
This is the first challenge of shared decision-making. Words like rare, likely and tolerable are subjective. In advising that a particular intervention “might help”, doctor and patient might sit at opposite ends of hope and reality.
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Time is another challenge. Pressed doctors can be tempted to “do” informed consent from a bygone era: speed through a list of risks and say, “Sign here.” Most people will.
But a thorough discussion of risks should contain risks specific to thatperson.
Another challenge is a knowledge gap. Exhorting shared decision-making as a tenet of good medicine but not explicitly teaching how to go about it leaves doctors to construct their own definition. Variation in practice is inevitable. A recommendation should be accompanied not only by the scientific evidence (notably derived from highly selected patients) but also a deliberate discussion of the pros and cons for thatpatient with those goals.
Given this, how should patients better advocate for themselves when it comes to important healthcare decisions?
Spearheaded by a geriatrician, an Australian website contains a plain-language (and translated) guide designed with the patient for the patient. A one-page “before your appointment” sheet contains questions every patient or carer should consider. I routinely recommend it to my family. The clinician section has nuanced questions that all doctors can learn to ask. I use it myself to keep me on track.
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Another useful site comes from the NHS in the UK.
For an ageing population with multiple conditions and a banquet of interventions – often pricey, not always friendly and sometimes downright dangerous – shared decision-making must go from idea to reality.
The tools are free; if patients insist on using them, doctors will follow.
