I miss my patients.
I’ve been caring for people in their homes for 15 years as a palliative care physician. When the pandemic hit, like many of my colleagues, I converted my practice to virtual-based care. I have always struggled with technology, so I had to learn the bare minimum to continue to look after my patients. At first, I thought virtual care would revolutionize my practice; after all, it would minimize driving time and maximize the number of patients I could care for in a day. But it didn’t take long for me to realize something was missing.
For the first months of virtual home visits, I thought the stress of the pandemic might be affecting my memory because, unlike previously, I was losing important elements of my patients and their surroundings between consults. Their faces were blurred and I couldn’t recall any physical images of them by name or address. It used to be that a team member would mention a patient’s name followed by, “You know, the woman with all the cats,” or “The man with the artwork covering his walls.” Immediately, I would remember the patients; their faces would come into focus and their overarching illness story would replay in my mind. “Yes, of course I remember her,” I would say. I was proud to know all my patients.
So, what was happening? Why couldn’t I remember my patients anymore? What brought this tedium upon me? I chalked everything up to “the pandemic,” even though I wasn’t quite sure how my dissatisfaction was the result of the changes made in my practice. “These are crazy times” was another way of explaining any shift from normal.
It’s taken the entire year of the pandemic for me to figure out what the problem was. Because now, more than ever, I am convinced that home-based medical care is critically unique from all other types of care delivery. Home-based care requires a skill set that isn’t taught in medical training. We home-care clinicians use all of our senses when we meet patients and their families while doing an assessment.
This starts from the time we drive up to the home, notice the state of the grounds, the type of garbage in the bins, the unshovelled snow on the unsalted driveway or unwatered flowers wilting in garden pots. The state of the home and the caregiver is often a clue to a patient’s wellness and provides insights to what is happening inside the home. This intel gathering continues as we notice how long it takes for the door to be answered, who comes to the door, what they are wearing and the state of their readiness for the visit.
For example, Mrs. Jones, the caregiver to her husband, James, is very unkempt compared to her baseline tidiness. She’s not usually dressed in her PJs at 2 p.m., we realize. Our patient is lying in a hospital bed in the makeshift bedroom that was the dining room last week. Their home is more disorganized and there are dishes piled high in the sink. The porcelain doll collection is standing guard in the cabinet. The dolls make me feel like I’m being watched. James is awake. He smiles and gives me a big wink. The room is heavy with the smell of cigarette smoke and kitty litter. When I leave, I can taste the rancid air in my mouth and it lingers in my hair until I write my consult note that evening.
I never take notes while I’m in the home. Later, as I sit down to document, the patients’ story will replay in my mind and the details remain vivid. In the following weeks, someone will say to me, “You remember James, don’t you? The man in the dining room with the porcelain dolls watching over him?” Boom, James is in perfect view in my mind.
But not now. I’ve lost a part of my patients … and their families. Once or twice, I have even wondered if I was experiencing early dementia.
It’s not the pandemic per se. It’s the virtual practice. I no longer feel I know my patients because my lens has narrowed; my senses are limited and I’m caring for people through tunnel vision.
And I am convinced that the patients and families feel the same way about me. “Which doctor are you again? Why has this visit been scheduled?” they might ask.
Caring for people virtually at home is limiting. It is closer to the limitations of institutional care than it is to quality home-based care. It is like caring for “person A in bed B” instead of James with the porcelain dolls displayed behind him. Now, my patients have been reduced to their diagnosis. The guy with bladder cancer … instead of James with the dolls. James with the porcelain dolls standing as sentinels on the shelf is a unique person, in a unique environment, with a unique family care team. I can connect with “James” and his family but I have a vague relationship with “the guy with bladder cancer.”
I chose home-based care for a reason … for the colour, the smells, the unique vibe of each family and home. This is what made me fall in love with community-based care over 15 years ago.
For me, virtual care is not a perfect proxy to house calls. It’s just “good enough.” So taking a long view, when the pandemic is controlled, virtual visits will become the exception instead of the rule for my practice.
I miss my patients.
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Great article and also great podcasts with Waiting Room Revolutions.
I have a slightly different view on virtual care. Our group in Windsor had been dragging our feet on virtual care for years. Despite multiple visits from the LHIN, OTN and others, it just didn’t stick. We felt that patients and caregivers would always value home visits over video conferencing and telephone calls.
And then the pandemic hit. And we had no choice. COVID-19 was a big scary unknown. PPE was scarce. Patients and caregivers were scared.
We pivoted quickly to virtual care for our home care patients. We selected a platform that was easy to use and reliable (doxy.me). While we continued to make home visits, we replaced a lot of our follow up visits with virtual care, either by telephone or video conferencing.
A few things happened:
1) Our patient roster increased by almost 50% and continues to climb.
2) We have done more consults and provided more patient “visits” than ever in our history.
3) We are providing more same day/next day “visits” than ever before.
4) Patients and families reported high levels of satisfaction with virtual care.
I agree. Virtual care should not replace F2F care. Home visits are a special tool in community based palliative care. But in search of that elusive Holy Grail known as “improving access to palliative care,” virtual care has done more for improving access in the past year than just about anything else in the past 10 years since the Declaration of Partnership was signed in 2011.
While it is not the panacea, it is a small step for luddites like me, but a giant step for patient care in Ontario.
I thought I was reading my own thoughts when I read Dr. Winemakers, “The Fog of Virtual Care”. Incredible reflective piece from a premier force in the delivery of palliative care. Knowing Dr. Winemaker as a compassionate palliative physician as I do, I can actually see her perspective and that this piece could not have been written more heart fully.
Aptly shared Dr. Winemaker. Thank you!
Virtual care is satisfying to neither patient or physician.
Preach Dr Winemaker, preach. We go into community palliative care because we love our connections with people, their families, the beloved pet and the weird decorations. I love the seasons of care. Clearing snow to get into the elder one’s home, daffodils, roses in the summer and the cool leaves rustling in fall. The seasons help me think about prognosis. I met you in the winter thinking you might pass in the summer and here it is Christmas again. The passing seasons of living with an uncertain future is very palpable as you visit their home.
We miss the connection. Mask up, vaccines in. We will never take this multisensory connection for granted.
Honest peek into the mind of a healthcare provider while delivering care via ZOOM. You cannot be the only one. It makes me reflect on how all this virtual care is leading to disconnection, which also leads to increased burn out amongst providers. I predict we will have an epidemic bubble of health care worker burn out when all this is over.
Thank you for writing this, very interesting from your perspective. It ties in with what Kate Crawford talks about with artificial intelligence and virtual care really can be thought of as under the umbrella of artificial intelligence I think reading this: “Artificial Intelligence and Its Role in Virtual Care” –https://healthtechmagazine.net/article/2020/06/ata2020-artificial-intelligence-and-its-role-virtual-care
Now for Kate Crawford whose new book looks at some broader social implications of AI:
“In Atlas of AI: Power, Politics, and the Planetary Costs of Artificial Intelligence, to be published April 6 by Yale, Crawford reveals how the global networks underpinning AI technology are damaging the environment, entrenching inequality, and fueling a shift toward undemocratic governance. She takes us on a journey through the mining sites, factories, and vast data collections needed to make AI “work” — powerfully revealing where they are failing us and what should be done.
While technical systems present a veneer of objectivity and neutrality, Crawford shows how they are designed to serve and intensify existing systems of power. Drawing on a decade of original research, she shows how the new infrastructures of AI reflect the beliefs and perspectives of a small group of people and serve the interests of the few at the expense of the many.”