shift: 'it's unclear how patient, family and caregiver partners were engaged during covid-19'

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 alone ,  to 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.

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’

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.”

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.