Years ago, I saw an elderly woman in the emergency department who was in the advanced stages of a neurodegenerative disease. The family had brought her to the emergency department because they felt they could no longer care for her at home. There was no compelling medical reason for her to be admitted to the hospital. The woman was obviously cared for extremely well and she had no acute medical issues that required immediate admission to the hospital. She was thin, although well-nourished on a pureed diet, and she wasn’t dehydrated. She didn’t have pneumonia, and she didn’t have a fever.
Still, the family members were at the end of their proverbial ropes. At the time, I did not see that. Frankly, the situation annoyed me somewhat. The disease had robbed my patient of speech. I felt as if I couldn’t get to know her and I found myself irritated by the insistence of her family members that she be admitted to the hospital. I saw them as demanding and pushy.
I did what they asked, but I did so in a begrudging way. In medicine, my patient is sometimes referred to as a ‘social admission.’ It’s jargon for a patient who has no acute life-threatening medical issues like fever or pneumonia, yet still needs to be admitted to hospital. Social admission is an unkind term, but I did not think of it that way at the time. As an ED physician, I have made many such referrals to the internist on call. I hated making them because I feared having to do a bit of a grovelling dance to get the internist to say yes to an admission.
It’s not all their fault. The system has a chronic lack of long-term care beds and a level of comprehensive home care than can enable seniors and others with extra special needs to live at home. In our current system, a ‘social admission’ can tie up a bed at an acute care hospital for months.
The internist agreed to see my patient. But, because the patient wasn’t acutely ill, he took his time. The family kept asking me things like when she’d get seen and when she’d get a bed in the hospital.
I grew increasingly defensive. It’s a character weakness of mine. I didn’t have the authority to admit her, and I couldn’t answer their questions. I felt stupid and inadequate. At one point, one of the family members asked if I had actually made the referral, and I snapped at her.
Eventually, the internist on call admitted the woman to the hospital, and I moved on to seeing other patients in the ED. I reminded myself that one of the few perverse advantages of being an emergency physician is that with difficult patients, once they’re referred, they’re someone else’s problem.
A few weeks later, the woman passed away. A few months after that, the woman’s husband wrote me a letter in which he said that I had been unkind to him and to his family. He asked me to meet with his family because he wanted to see if a human being lurked under that abrupt demeanour.
The husband didn’t call me incompetent. When a patient or a family member calls the doctor incompetent, he or she can brush it off. That’s because it’s rare to find a layperson who understands the difference between clinical skills and a good bedside manner. When they call you unkind, there’s a good chance they know what they’re talking about.
I was on the giving end of unkindness. Many years later, I understood what it felt like to be on the receiving end.
On Saturday, October 19, 2013, I rushed to the hospital to be with my 92-year-old father Sam, who was complaining of chest pain. He had advanced coronary artery disease and congestive heart failure. My dad had his first heart attack at the age of 89. On admission, he was found to have hypertension and type 2 diabetes complicated by chronic kidney injury. An angiogram showed severe three-vessel disease that was not amenable to angioplasty. He had a consult with a cardiac surgeon who felt that my father was not a good candidate for coronary bypass.
As a veteran ED physician, I knew he was living on borrowed time.
During his final admission to the hospital, the admitting internist told me and my sister he’d try and manage my dad’s chest pain with medications. An attendant moved my dad to the cardiology floor of the hospital. A nurse took his vitals and helped to settle him in.
By 10 p.m., I wasn’t thinking clearly. I had done a night shift the night before and had not slept in nearly 40 hours. Settled in bed, my dad told my sister and me to go home. “I’d like to rest,” he said. I drove home and was so exhausted I don’t remember climbing into bed after we drove home. A few hours later, I received the call that my dad had died. My sister Joanne and I drove back to the hospital and returned to our father’s bedside. He had a calm and peaceful look on his face. As if the health problems that had made the final years of his life miserable were at an end.
For loved ones, those first moments of realisation are all-encompassing. They’re sacred. You want them to last forever because it’s simply too terrible to contemplate the moment after when you have to live the rest of your life without them. The moment was interrupted by the arrival of the internist and night duty nurse.
The internist looked uncomfortable. He spoke in sentence fragments. “His heart rate slowed,” the internist said. “His blood pressure went down. We tried to reach you.”
At this point, I was still trying to digest what had happened. Even so, I could recognise that the internist was acting defensively. Perhaps telling us my dad’s heart rate and blood pressure went down made it sound as if his death was inevitable no matter what he did or failed to do. Perhaps saying he tried to reach me while being unable to do so made me a party to what had happened.
The thing is, had I been him, I may have acted as he did. But I was not him, I was my father’s son. And in that moment of intense emotion, I felt no warmth from him. No words of consolation, no acknowledgement of the shock we felt. Not even a pat on the shoulder. The internist was keenly focused on my next move. What he could not have known is that I didn’t want to be the notorious ‘doctor-son from hell’, grilling him about the treatments he did or did not offer my dad. I just wanted him to leave.
“Thank you for looking after our father,” I said to him. The internist’s face relaxed. I think he realised the threat of a tense argument had passed.
“Take all the time you need,” said the internist, before disappearing from the room and from our lives.
In the weeks following my father’s death, I thought of that woman at the end stage of a degenerative disease and her family. The people I had been unkind to so many years before.
I thought of my dad, who at the time of his death had been married to my mother for more than 62 years. I remembered how tenderly he had cared for her when she was diagnosed with Alzheimer’s disease. How he moved gracefully from being my mother’s social convenor and business manager to her occupational therapist. And finally, her personal care aid. Going through each painful step along the downward spiral seamlessly and largely without complaint.
I remembered too that he had his first heart attack just five months after he had finally admitted he could no longer care for my mother at home. A move that broke his emotional heart even as his physical heart was becoming compromised too.
For the first time in my career and in my life, I had a pretty good idea of how that family felt.
Broadly speaking, there are three aspects to empathy. Emotional or affective empathy is the physical pain one feels when you watch your toddler get stitches. It’s the pain of the despair you feel as you watch a parent draw their last breath. We don’t want health professionals to feel too much of that. If an orthopedic surgeon routinely felt the post-operative pain of her patients, she’d stop replacing knees and hips that day.