SHIFT: 'It's unclear how patient, family and caregiver partners were engaged during COVID-19'

If organizations don't value lived experience in a health crisis, exactly what is it going to take to patients and caregivers to the table?

Lisa Machado 7 minute read January 24, 2022
Female patient in wheelchair with intravenous drip

There's no question that patients and caregivers would be supportive of health-care facilities implementing flexible visitor policies. GETTY

If there was ever a doubt whether or not the perspectives of family and caregivers are valued by our health care system, the pandemic has finally cleared up any confusion.

Between the triaging of patients, deciding who gets life-saving treatment, and visitor restriction policies, it’s never been more clear that though health care organizations like to banter around terms like patient-centricity and patient-centred and person-focused care, there’s nothing like a crisis to reveal the reality.

In the last two years, there have been countless stories of people forced to go it alone once they walked through the doors of health care institutions. From women giving birth without their partners, to people having cancer treatment aloneto patients dying in hospital without their families by their side — health care has felt like it’s anything but focused on the patient.

Perhaps it wouldn’t be as shocking and disgraceful if we didn’t already know the damage this can do. A report last July by the British Pregnancy Advisory Service (BPAS) found that seven in 10 new mothers on postnatal wards with visitor restrictions said they felt lonely, almost half reported being very unhappy and almost six in ten felt they needed their visitors to deliver practical help healthcare staff were not providing. They described feeling “deeply anxious,” “abandoned,” and that “the system had completely failed them.”

For people facing cancer, the diagnosis in itself is terrifying, let alone having to endure treatments and painful tests without the support of family and friends. We also know that families whose loved ones die in ICU are more likely to experience severe PTSD causing anxiety, depression and a reduced quality of life — and that’s when they are involved in their loved ones’ care. Prevent them from saying a final goodbye, and well, it’s not hard to fathom the degree of devastation.

‘A nurse scrambling to arrange a video call is unacceptable’

Early in 2021, palliative physicians Dr. Richard Leiter and Dr. Samantha Gelfand recognized the need for change and wrote an opinion piece about the importance of “families at the bedside,” calling for a national strategy aimed at addressing the trauma that visitor restrictions cause loved ones. They urged hospitals to put programs in place to ensure that families have regular contact with patients throughout their hospital stay.

“The inequitable chaos of the status quo — usually a nurse scrambling to arrange a video chat, often on her or his personal phone — is unacceptable,” they wrote.

Sadly, two years in, this is still the experience for many patients, loved ones and health-care providers across the world.

Leiter and Gelfand posited a solution that suggested the Centers for Disease Control create “evidence-based standards for visitor policies” that would see hospitals with lower rates of positive COVID more open to visitors, and incorporate flexibility with restrictions around the critically ill. They also recommended regulations governing connecting patients to loved ones when they cannot be together, particularly: “hospitals should step in to meet the needs of patients who cannot communicate on their own or lack communication devices.”

But there was a critical component missing: the patient and caregiver perspective.

While there’s no question that patients and caregivers would be supportive of health-care facilities implementing flexible visitor policies, making patient and family connections a priority, and coming up with a system-wide protocol that designates loved ones as essential to patient care, Leiter and Gelfand’s piece is yet another example of decisions being made about patients without the feedback of, well, patients.

Things like how visitor policies will address large families, and what processes will be in place to accommodate people who require translators, or have cognitive challenges, and why on earth does it cost more than $25 to park each day at most hospitals?

“Our health care system is a leaky boat,” a friend said after describing how his mother took an ambulance to a local hospital’s emergency department to fast-track tests that she would have otherwise had to wait almost a year for. He had laid awake through the night waiting to hear news on her well-being after not being able to get through to the hospital. When she finally called, she explained she was only able to do so after a hospital volunteer lent her his personal phone.

This isn’t a leaky boat, man. It’s a gigantic shipwreck and patients, their families and health care workers are stranded. And it’s not just doctors and nurses, but also the very people who have committed to improving the patient experience — family and caregiver partners who hope to change health systems through advisory and leadership roles and weighing in on governance and policy, planning and the design of programs and services.

And the longer the pandemic drags on, the worse things get, it seems.

A report released last week that studied the impact of COVID-19 on patient engagement notes that there have been many challenges of the pandemic that would have benefited from patient feedback and the sharing of lived experience, such as the “prioritization of health care services, allocation of vaccines and triaging of life-saving treatment and the development of visitor restriction policies.” Yet, the authors wrote, it’s “unclear how patient, family and caregiver partners were engaged in the system during COVID-19.”

‘Nothing about us, without us’

They go on to share what patient engagement looked like in other parts of the world. Patients in France were excluded from key committees and not consulted on lockdown measures, while those in the U.K. saw large drops in funding that supported patient engagement, and in Australia, any engagement opportunities not focused on COVID-19 happened less or were cancelled.

To get a better idea of how Canadian patient (and caregiver and family) engagement was affected by the pandemic, the researchers implemented the Canadian Patient Partner Study (CPPS) survey. While the results found that patient engagement work, for the most part, continued during COVID-19 — albeit with delays or a reduction of activity — many of the respondents reported feeling “a sense of being cut out of the work,” “abandoned or ignored by the organizations and groups they partnered with,” as if they had been “tossed us overboard like extra baggage.”

Most of those surveyed felt that the pandemic was a time when engaging patient partners was especially critical — particularly since decisions would directly affect fellow patients and caregivers. Being excluded was “like showing up for work to find the doors locked. No one reached out, decisions were being made that affect me as a patient, but I wasn’t included in the discussion,” one respondent shared. The report’s authors noted that the lack of inclusion left some patient partners wondering if their contributions were ever valued, and one person commented: “If my ideas had been heard, perhaps less people would have died or we would have less mental health issues.”

It’s long been one of the most important messages communicated by patient and caregiver advocates — you could even call it a mantra — “nothing about us, without us,” and yet, the value of lived experience continues to be overlooked when it comes to health care policy development.

And although some health care organizations — pharmaceutical companies and policy makers, too — have made efforts to form patient partner advisory committees and councils, invite lived experience advocates to speak at conferences (and pay them!) and include patients and caregivers on their boards, it’s unclear whether or not these contributions are truly recognized as valuable, or simply just a way to check a box.

After all, as the report’s authors point out, if organizations are truly committed to patient, family and caregiver engagement, it should continue during times of crisis — not be stalled or diminished.

And certainly, if the people who made the rules and formed policies took a moment to ask the opinion of anyone who has ever given birth without their partner, or had to undergo cancer treatment alone, or lost someone special without having a chance to say a final goodbye, we would all be in a much better place right now.

The critical question is, if a health crisis isn’t enough to get patients and caregivers to the table, exactly what is it going to take?

Lisa Machado is the executive producer of Healthing. She can be reached at
This story originally appeared in the Healthing Weekender. Subscribe here.
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