Brian Goldman, an ER physician in Toronto for 25 years, has been the host of White Coat, Black Art on CBC Radio and the author of The Night Shift: Real Life in the Heart of the ER and The Secret Language of Doctors: Cracking the Code of Hospital Slang. Over at Chatelaine, Goldman wrote a heartbreaking story about his own experiences with the health care system as the caregiver of his father. Read an excerpt below, and the full story here.
I walked into my home in midtown Toronto following a night shift in the ER. It was noon on an autumn Saturday just over a year ago and it had been 31 hours since I’d last slept. I planned on heading straight to bed, but the phone rang.
It was a nurse, calling from the retirement home where my dad, Sam Goldman, had been living for three years. “I’m with your father now,” she said. “He felt tired this morning and didn’t come to the dining room for breakfast.”
Breakfast was one of the few things that could still rouse any sense of pleasure in my dad, who viewed retirement homes as prisons for the elderly. “He’s complaining of chest pain,” the nurse continued, before passing the phone to my father. I flinched. Dad had a heart condition.
“Dad, are you having chest pain now?” I yelled into the phone. My father was quite hard of hearing. “I went to the washroom,” he said, sounding weary. “I just want to rest in bed.” The non sequitur was typical of Dad. He wasn’t cognitively impaired; he’d just always found it difficult to describe his bodily complaints. He was evasive even with his doctors — as if giving a history was a violation of personal privacy. “I think you should call an ambulance,” I told the nurse when she got back on the phone.
As I sped toward the retirement home in the north end of the city, I considered the likely diagnosis of my dad’s symptoms. He could survive a heart attack — provided the damage to his heart was limited. I dealt with this kind of situation every day on the job, but now suddenly it felt different. It was personal.
By 2021, nearly one in five Canadians will be 65 or older. By 2051, that number will be closer to one in four, which means a significant proportion of the population will be battling everything from heart disease to dementia. To the diseases of old age, add mobility problems and psychological issues, such as depression and anxiety, and you get a complex assortment of health concerns that most doctors are ill-equipped to deal with. It’s a problem that affects every demographic, too, because those of us who aren’t facing ill health ourselves will soon be supporting those who are.
In most cases, doctors are good at fixing the everyday things that go wrong with people’s bodies. What we’re not so good at is helping patients realize that correcting a problem won’t necessarily improve their quality, or duration, of life. It’s the rare physician who prepares patients to die well, or who will even acknowledge that death is possible, much less imminent. This is a major issue in how doctors interact with their patients — and although I’ve been an ER physician for more than 25 years, it was my father’s illness that made me realize the enormity of the problem.
For most of my life, my dad was the healthiest guy I knew. Not healthy in an athletic sort of way, but he had a good constitution. Then in 2010, just shy of his 89th birthday, he had his first heart attack, and it robbed him of his vitality. Congestive heart failure took away his breath, and every few months his lungs would fill up with fluid, causing him to nearly suffocate.
The harbingers of a looming heart attack — sudden weight gain caused by retained fluid, swollen ankles and a wheezy sound to his breathing — had been obvious. Still, I could never get my dad to pay attention.
Like many older caregivers, my father had neglected his health while looking after my mother, who was in the end stages of Alzheimer’s disease. The Canadian Community Health Survey shows that more than one-third of Canadians age 45 and older provide informal or unpaid care to a senior. (If they were paid a decent salary, their work would be valued at an astonishing $25 billion a year.) For 15 years, my dad focused on my mother’s needs at the cost of his own health.
On days when Dad’s heart got so bad he could barely breathe, he wouldn’t tell us in so many words. My sister and I learned to stay vigilant, watching for extra orneriness — a subtle yet reliable clue of impending heart failure. We’d drag him to the ER, where doctors would give him powerful diuretics to get the fluid off his lungs.
Dad’s recoveries were only a temporary reprieve, and I knew that his coronary arteries were one pea-sized clot away from triggering the heart attack that would almost certainly kill him.
Secrets and lies
My sister, Joanne, and I arrived at the retirement home simultaneously. The paramedics placed my dad on a stretcher and loaded him into the back of the ambulance. He looked comfortable, as though his chest pain was gone.
When we arrived at the hospital a service assistant was already moving Dad from the hallway of the ER into a cubicle. I noticed that he didn’t look as well as he had earlier. When a nurse asked him to sit up, his heart rate skyrocketed. “How is your chest pain?” she asked. “Not too bad,” he replied.
Then an internist I’ll call Miranda appeared, carrying my dad’s ER chart. “Deep breath, Mr. Goldman,” Miranda said to my father. Like the nurse before her, Miranda quickly gave up trying to get much of a history from my dad. She moved to the physical examination. In my experience, few physicians are completely comfortable treating fellow doctors’ family members — I know I’ve always hated looking after the parents of my colleagues, with all of their questions and doubts about my clinical acumen. I resolved not to second-guess her.
“Your dad has acute coronary syndrome,” said Miranda as my sister and I sat on chairs in a room not far from our father’s cubicle. Acute coronary syndrome, or ACS, is what we used to call a heart attack. It’s what happens when the blood supply to the heart muscle is blocked suddenly. There’s no good reason for the name change, aside from the fact that doctors like inventing complex terminology that obscures the meaning to outsiders.
In an ACS, there are three ways to unblock the coronary artery: angioplasty, coronary bypass surgery or a clot-busting drug. Miranda mentioned none of them. “I’d like to give your dad blood thinners to prevent more clotting of the coronary arteries,” she told us. “And nitrates to get more oxygen to his heart.”
It felt weird being on the other end of a conversation I’ve had hundreds, if not thousands, of times. I found myself receiving the information while evaluating the young doctor delivering it. Physicians often get little training on how to talk to patients and have astonishingly little insight into how they come across. A growing body of research has concluded that more detailed, straightforward and compassionate explanations from physicians about serious illnesses and end-of-life care mean patients actually have a better quality of life as they near the end.
My sister nodded as Miranda explained the options. Meanwhile, I was trying to process what she wasn’t saying. Doctors are notorious for hinting, a habit that I think comes from a fear of being too certain about a diagnosis or prognosis, and then being proven wrong. Hints allow a bit of wiggle room. Clues a doctor is doing this include unclear language and heavy use of technical jargon. The only way to cut through it is to ask questions like “What does that mean?” until you get either more clarity or an admission of uncertainty, in which case a second opinion might be in order.
While there may have been good clinical reasons for not offering all of the treatment options to my father, I wondered if there was one more thing not put up for discussion: his age. At 92 and in ill health, my dad had seen his best days. Physicians genuinely believe that surgery is just too risky in seniors, but the line between age-appropriate clinical decision making and ageism is often quite blurry.
Ageism is rampant in the culture of medicine, just as it is in society in general. Studies show that seniors with heart attacks are less likely to get angioplasty or coronary bypass, and if they do receive these invasive interventions, they often wait significantly longer than patients half their age. “If I’ve got a 50-year-old and a 92-year-old in the resuscitation room and both need my attention, I help the 50-year-old first,” a colleague once told me. “Sometimes, you’ve got to make choices.”
Geriatrics is still a relatively low priority in medical school, where institutions have done a poor job of recruiting students who like taking care of patients like my dad.
“We’ll admit your father to a telemetry bed on the floor,” Miranda told us. The “floor” refers to the general wards and not to the better-equipped — and better-monitored — coronary care unit (CCU), where acute heart patients usually go. Still, I didn’t question Miranda’s judgment. Like any other family member, I wanted the doctor to be right.
At 7 p.m., Miranda motioned my sister and me out into the corridor by Dad’s room. “Have you thought about what your father would want if he suffered cardiac arrest?” she asked, sounding respectful, yet emotionally detached. As powers of attorney, we were being asked to sign a DNR form giving Miranda permission to do nothing should his heart stop, which is how it’s done at most hospitals. DNR is short for “do not resuscitate.”
I’ve been in Miranda’s shoes hundreds of times. You try to look concerned about the patient and the family while hoping the decision doesn’t turn into hours of anguished hand-wringing. Here I was on the other side, in a hallway of a busy ER, and it felt different — this smart yet inexperienced woman young enough to be my daughter was asking my sister and me to play God.
The rest of this story is at chatelaine.com. Click here to read on.