Milena Forte is a family physician and assistant professor in the Department of Family and Community Medicine at the University of Toronto.
“Now you get to see what it’s like to be on the other side doc!”, said my young and friendly pre-op nurse as she started my IV.
In fact, I’ve been on “the other side” more than a few times. The first time was twenty-seven years ago when I had knee surgery. It was an elective procedure done in my early twenties, a few months before I would enter medical school. I expected it to be a breeze and did not anticipate the grueling recovery and toll it would take on me physically and mentally. It was a transformative experience for a healthy and very social young woman to suddenly be stripped of my mobility and independence. Being reliant on others for tasks like bathing and transportation was frustrating and demoralizing. In retrospect, I became irritable and depressed. Over time, with the support of my family and friends, I returned to the activities I enjoyed. But my glimpse into that degree of vulnerability always stayed with me. Now I was having my fourth elective surgery, and I felt like a pro.
I have also been a caregiver for family members many times. I know what it is like to be worried, to the point where it is unbearable sometimes, that someone I loved might die. With my parents I have held my breath through six cancer surgeries and exhaled when they re-emerged. I have witnessed their strength and resilience and celebrated their recoveries. And I have experienced death from a variety of perspectives.
Through all of this, there was one constant that I am sure is important to almost all patients. The support of family and friends and the importance of having someone close to advocate for you. Someone to see and hear you, hold your hand and reassure you by their simple presence that you are not alone. Someone at the bedside or in the waiting room to remind you that you matter.
During the COVID-19 pandemic, the presence of loved ones has been deemed non-essential for all but the most exceptional situations: birth and death. I understand why hospitals need to restrict the volume and flow of people. We are, after all, potential vectors for disease. But we are also healers for those we care for and love. As a healthcare provider, I take exception to the fact that family, close friends and caregivers have been deemed non-essential. We are now leaving the often-invisible work of caring and emotional support to an already over-burdened healthcare workforce, that may or may not see this as an essential part of their job.
While perhaps a necessary trade-off in an exceptional time, it’s a substantial loss. And it’s worth noting it as such. Human caring and compassion, especially in times of sickness and vulnerability, are essential to human well-being. The voice of a loved one nearby or the touch of a friend can diminish pain, allay anxiety and restore hope.
As an “experienced” patient, with insider knowledge of the system undergoing a non-life-threatening elective procedure, I felt the absence of a loved one. It’s a cruel reality of COVID that the temporary vulnerability I felt lying alone and in pain has been amplified several-fold in patients far sicker and more vulnerable than me. Many cannot advocate for themselves, while family members anxiously await news of their progress on the outside.
I am grateful to have been on “the other side” during this pandemic to remind myself how crucial it is, especially now, to be kind and compassionate to those we care for. Now more than ever we need to be patient advocates and caregivers as well as healthcare providers. I see colleagues doing this everyday, out of compassion and increasingly out of necessity. I’m hopeful that soon caregivers can resume their essential and rightful place by their loved one’s side.
I tend to have mixed feelings when I read about the experiences of physicians as patients. Physicians have a level of privilege and ability to navigate the system in a unique way. Patients should not need their experiences to be validated when doctors become patients.
I have have several family members in hospital during the pandemic, and the loss of agency and support are clear.
Hospital policies that restrict essential caregivers speak to a deep paternalism in health care, under the guise of infection prevention and control.
Your article states that kind and compassionate care by health care workers are needed more than ever….my question is- are hospital health care workers given the supports they need to be kind and compassionate? I suspect many staff are already taxed and working to capacity, at the brink of burnout.
Another insightful and important piece by my sister. We often agree to disagree on any number of subjects, but I’ve always admired your passion, objectivity and eloquence. You are a terrific writer and a true advocate for your profession, peers and patients.
Malcolm M MacFarlane
An excellent article, full of compassion and self awareness. Thank you.
You write, “Many cannot advocate for themselves.” I’m left wondering what this means for informed consent and substitute decision making. Before Covid, family members were readily available to assess their loved ones understanding of treatment plans and to provide support if their decision-making was compromised by pain or medication, or if they were physically or mentally unable to advocate for themselves. What happens when this safety net is weakened or removed due to family member restrictions? It seems to me that health care professionals need to be even more vigilant in these Covid times to ensure that family members are kept fully informed and that proper consent to treatment is obtained for all aspects of care. This is truly a formidable responsibility for health care workers already taxed by the demands of this pandemic.