Families Are More Than Just Visitors, They Are Fundamental Extensions of Patients

Opinion: DIANA ANDERSON, MD

As a medical student, I participated in a group session to demonstrate the impact of illness on families. One patient was asked to stand, given a piece of coloured thread and asked to choose a “spouse” from the group. The chosen spouse stood too, and took the string, creating a bond. This couple pretended to have children: new string colours were chosen. The children grew up and formed their own relationships until everyone was standing with connecting strings. The room became a blend of colours, the tangled network no longer decipherable.

“Imagine someone gets sick,” said the facilitator, “what will happen to all the string?”

One person sat. We couldn’t maintain our hold, and the web plunged downward, pulling us all toward the floor.

My sister’s untimely death in 2017 reinforced this powerful lesson. But doctors shouldn’t require a family crisis to understand the family’s experience of health care. Health care that focuses only on the patient, and does not engage family, is woefully inadequate.

Tina had been ill for many of her 37 years. We as her family agonized alongside. One morning, we brought Tina to the hospital. We were ushered out. She would be monitored closely, they said. But her decompensation went unnoticed overnight.

The next morning, the hospital called my father. “Your daughter’s heart has stopped. Do you want us to resuscitate her?” they asked.

I got to the hospital first and was told to wait. To wait!

“I’m a doctor,” I said. “Is my sister is dead or alive?”

“Wait,” they repeated.

I was now on the other side of the medicine world: the family side. How many times had I acted impatiently with families, as if they were distracting me from my duties, seeing them as appendages rather than extensions of my patients? In hindsight, conversation would have helped manage my uncertainty during those devastating moments and beyond.

Being family in the intensive care unit meant abiding by the visiting hours. After several days of hopeless waiting, we made the difficult decision to withdraw care and visiting hours were lifted for us. Other waiting families watched with both pity and relief as we were buzzed in during restricted times. They were happy to be sent out, as this meant there was still a chance for their loved one.

While doctors don’t treat families directly, we frequently take on the role of advisors, interpreters and decision-makers. In increasingly complex and stressful environments, families deserve to be more than visitors. They are fundamental extensions of patients, and inclusive medical care benefits everyone. Often, families are the first to notice subtle changes in a patient’s thinking or behaviour, even before the medical team. Family engagement (even during procedures and rounding) has been shown to improve multiple aspects of care: quality, safety and even patient outcomes.

Families can bring useful and often critically important knowledge, if they are invited to do so. Word choice and setting matter. Beyond the effects on patients, what families hear and see can have longstanding impacts on their own health.

“Time of death, 3:40 a.m.,” they announced, looking at the medical monitor screen. All I could see at that moment was the wall clock for families, which hadn’t been adjusted after daylight savings. It felt like Tina died twice, one hour apart.

We must abolish the “visiting” culture and ensure space and support to stay with a loved one. Doctors should learn about family experiences, beyond the traditional doctor-patient divide. Enhancing our family dialogue skills through simulations and exposure to narrative medicine can begin this change. Experiences like the memorable string exercise help shift clinical teaching from patient-centred care toward a holistic human approach.

We all hold strings to this interconnected human web. Health care is also a family affair.

Diana Anderson is a Montrealer and a physician, and is currently doing a fellowship in San Francisco. Her sister died in a Montreal hospital.

The opinion piece first appeared in the Montreal Gazette and is republished here with permission.