The decision seemed straightforward. Bob McHenry’s heart was failing, and doctors recommended two high-risk surgeries to restore blood flow. Without the procedures, McHenry, 82, would die.
The surgeon at a Boston teaching hospital ticked off the possible complications. Karen McHenry, the patient’s daughter, remembers feeling there was no choice but to say “go ahead.”
It’s a scene she’s replayed in her mind hundreds of times since, with regret.
On the operating table, Bob McHenry had a stroke. For several days, he was comatose. When he awoke, he couldn’t swallow or speak and had significant cognitive impairment. Vascular dementia and further physical decline followed until the elderly man’s death five years later.
Before her father’s October 2012 surgery, “there was not any broad discussion of what his life might look like if things didn’t go well,” said Karen McHenry, 49, who writes a blog about caring for older parents. “We couldn’t even imagine what ended up happening.”
It’s a common complaint: Surgeons don’t help older adults and their families understand the impact of surgery in terms people can understand, even though older patients face a higher risk of complications after surgery. Nor do they routinely engage in “shared decision-making,” which involves finding out what’s most important to patients and discussing surgery’s potential effect on their lives.
Older patients, it turns out, often have different priorities than younger ones. More than longevity, in many cases, they value their ability to live independently and spend quality time with loved ones, according to Dr. Clifford Ko, professor of surgery at UCLA’s David Geffen School of Medicine.
Now, new standards meant to improve surgical care for older adults have been endorsed by the American College of Surgeons. All older patients should have the opportunity to discuss their health goals and goals for the procedure, as well as their expectations for their recovery and their quality of life after surgery.
Surgeons should review their advance directives — instructions for the care they want in the event of a life-threatening medical crisis — or offer patients without these documents the chance to complete them. Surrogate decision-makers authorized to act on a patient’s behalf should be named in the medical record.
If a stay in intensive care is expected after surgery, that should be made clear, along with the patient’s instructions on interventions such as feeding tubes, dialysis, blood transfusions, cardiopulmonary resuscitation and mechanical ventilation.
This is a far cry from how “informed consent” usually works. Generally, surgeons explain to older patients the physical problem, how surgery is meant to correct it and what complications are possible, backed by references to scientific studies.
“What we don’t ask is: What does living well mean to you? What do you hope to be able to do in the next year? And what should I know about you to provide good care?” said Dr. Ronnie Rosenthal, a professor of surgery and geriatrics at Yale School of Medicine and co-leader of the Coalition for Quality in Geriatric Surgery Project.
Rosenthal tells of an 82-year-old patient with early-stage rectal cancer. The man had suffered a stroke 18 months earlier and had difficulty walking and swallowing. He lived with his wife, who had congestive heart failure, and had been hospitalized with pneumonia three times since his stroke.
Rosenthal explained to the man that if she operated to remove the cancer, he might land in the ICU with a breathing machine and then end up at a rehabilitation facility.
“No, I don’t want that; I want to be home with my wife,” Rosenthal recalled his saying.
The man declined the surgery. His wife died 18 months later, and he lived another six months before he had a fatal stroke.
Surgeons can help guide discussions that require complex decision-making by asking five questions, according to Dr. Zara Cooper, associate professor of surgery at Harvard Medical School:
How does your health affect your day-to-day life? When you think about your health, what’s most important to you? What are you expecting to gain from this operation? What health conditions or treatments worry you most? And what abilities are so critical to you that you can’t imagine living without them?