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 DNR dilemma
In 2005, the American Heart Association changed the initials from DNR to DNAR, which stands for “do not attempt resuscitation.” The term is catching on in Canada. In my opinion, adding the word attempt is a useful reminder to everyone involved that it’s not within the powers of health professionals to guarantee a successful resuscitation. In fact, it’s quite the opposite.
A study of more than 2,600 people aged 80 and older with cardiac arrest that occurred outside a hospital showed patients had only a 3.3 percent chance of a full recovery. The more conditions you acquire as you age, the lower the chance of successful resuscitation, and most doctors believe it to be completely futile. Often, the only outcome is cracked ribs following an attempt to resuscitate an osteoporotic 90-year-old — a truly horrifying experience that I have both witnessed and caused.
Yet, although health professionals may not want to perform cardiac resuscitation, they have no choice: It’s because resuscitation is the default option. If you want a new hip or cancer chemo, you don’t get it unless a doctor recommends it. Shocking the heart, ventilating and a whole host of other last-ditch measures are the only treatments that doctors have to perform unless given permission not to. For this reason, a DNR discussion often looks like a negotiation. It’s a dance in which we doctors hope to lead patients and their families to see the futility of intervening — and call it off. The slang term is “getting the DNR,” though I’ve even heard it called “closing the deal” and “making the sale.”
Most often, families see things the doctor’s way. But sometimes they don’t, and there are two good reasons for that. First, doctors often make the mistake of turning the DNR conversation into a one-two punch: One, tell the family that their loved one is likely to die, and two, close in for the DNR. That’s okay if the family is prepared for their loved one’s impending demise. If not, the shock of finding out that death is imminent will be so great as to make a discussion about DNR next to impossible.
Second, we live in a death-denying culture. It’s the norm for some families to refuse to see just how close their loved one is to dying. It would be so much better if everyone decided these things in advance, but that seldom happens. And when there’s no meeting of minds, conflict ensues. Last year, a family sued a Toronto hospital and two physicians for $1 million. The claim was that the doctors imposed a DNR against the family’s wishes. At issue in the case, which is before the courts, is whether doctors or patients have the final say over DNR orders.
Because there is so much drama around DNR decisions, doctors sometimes try to avoid both the resuscitation and the potential conflict with families by resorting to something known in hospital circles as a “slow code.” Unlike a genuine “full code,” in which doctors race to the patient, in a slow code, they walk. They’re slow to perform every intervention, from CPR to defibrillation. To families, a slow code looks like the real deal. But the reduced speed means enough time passes to virtually guarantee the patient’s heart and brain are deprived of oxygen more than long enough for death to be inevitable. Slow codes are a deceptive practice and unethical, but it’s hard to find a doctor who hasn’t seen or heard of a slow code being done, if not participated in one. So why do they do it? Some doctors can’t bear arguing with the family. It’s easier to let death happen naturally.
A matter of life and death
There’s another kind of deception some doctors engage in when it comes to treating critical patients. Occasionally, doctors and nurses equate “do not resuscitate” with “do not treat,” holding back blood pressure and diabetes medications, antibiotics and even intravenous fluids. It was this thought that flickered briefly in my mind as my sister and I looked at each other outside my father’s room. We had taken Dad to the hospital half a dozen times with heart failure without signing a DNR. This time was different. From the doorway, I could see how frail he had become.
“Dad wouldn’t want CPR if his heart stopped,” I said to my sister. Perhaps I was channelling the futility my colleagues and I feel about performing CPR on older patients. Perhaps I was trying to get past the moment as quickly as possible by denying its emotional significance. “I agree,” said my sister, taking what seemed like the mature course of action.
“I think it’s a good decision,” said Miranda. “Let’s hope it doesn’t come to that.” At the time, it felt like the right thing to do.
By 10 p.m., I had been awake for more than 40 hours. A hospital service assistant had just brought my dad up to his bed on the cardiology floor. My wife, Tamara, joined us as my sister and I answered a long list of questions about my dad’s favourite foods and his bowel habits. I was barely able to stand, let alone think. At 10:30, my father told me to go home. “Are you sure?” I asked him. “I’d like to rest,” he answered.
Dad looked at Tamara and blew kisses at her. I muttered goodbye and took a step toward the door. Then I stopped and looked back at my father. Dad never said the words “I love you” to me. In his world, you didn’t say it. You showed it. In caring for our mother, dad had demonstrated his steadfast devotion to her.
I walked back to my dad’s bedside, kissed him on the forehead and said,“I love you.” I don’t remember the drive home. I fell asleep instantly when my head hit the pillow.
“Brian.” In that twilight state between dreaming and wakefulness, I thought I heard my name. “Brian.” This time, I felt someone shaking me. Tamara had a stricken look on her face. “He’s gone, isn’t he?” I asked. I was surprised at my composure. It was 2 a.m. I had missed my father’s death.
When we got back to the hospital Dad looked serene. The struggle to walk, to live apart from our mother, to breathe, had vanished. The corners of his mouth were curled up into the faintest of smiles, as if to say his first glimpse of death was okay.
I looked deeply at that face, trying to absorb that the man who had existed my entire life was gone, all the while cursing myself for not being there when he died. So many times I had seen impending death on the faces of other people’s fathers. How could I have missed seeing it on my own dad?
Miranda walked in wearing a scrub suit. “His heart slowed down,” she said. “His blood pressure dropped. We tried to reach you.” She had the defensive attitude I’ve often seen doctors display in the face of a death — she was gearing up for an angry outburst from me. Her concerns seemed pointless, since my father was dead. I just wanted her to leave. “Thank you for taking care of my dad,” I said to her.
In the weeks that followed, I ruminated on our decision to agree to the DNR. Did that give Miranda tacit permission to do nothing, with his life on the line? Did she believe his continued existence was futile? Was she as oblivious as me to the fact that he was so close to death?
I’d like to think my experience with my dad has made me a better ER physician. When I see a patient in dire straits, I tell family members in as kind, yet direct, a way as I can. I don’t hint anymore.
But I’m just one guy. We need better training in breaking bad news and in helping families make decisions in the best interests of loved ones near the end of life. In a frenetic ER, it’s nearly impossible to take the time necessary to explain prognoses to families in crisis. Hospitals need extra social workers and other professionals who have both the time and the training to offer families the psychological support they need to get through the most difficult of times. More and more of us are growing older. It would be so much better if we could all talk frankly about what we want and expect years before we near the end of life, instead of putting the discussion on indefinite hold.
As for my father, I have only that slight smile on his face to comfort me. I think he knew exactly what was up. He would have liked to die at home in his own bed. Hearing me say, “I love you,” gave him permission to let go. Sending us home was his last chance to exercise his will — and to tell us that death is part of life.
Brian Goldman has been an ER physician in Toronto for 25 years. He’s 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. Read an excerpt of his book on understanding the language doctors use in hospitals.