By Julie Drury, Maggie Keresteci and Claire Snyman

First posted in Medium

COVID-19 is forcing us to make what were previously unthinkable choices like “Who gets to have a family member with them when they are sick?” “Who gets the technology required to connect with family” or “Who among us should have to die alone?” These decisions cannot possibly be made by doctors or administrators alone. If ever there was a time to give new life to the well-worn phrase “caregiver engagement” this is it. Now is the time to breathe new life into engagement by reviewing and revising the blanket no visitor policies that were put in place at the beginning of the pandemic with and not for caregivers and families.

A blanket “No Visitor” policy is not a policy at all, it is a blunt instrument put in place as an immediate reaction trying to address a nuanced issue. That blunt instrument is not working during COVID-19 in Canada. It is time to galvanize caregivers and families to work with the health system to develop a realistic, relevant and safe policy that differentiates between social visitors and family members or caregivers who are essential partners in care.

There will be time, on another day when the ravages of COVID-19 are better managed, to examine how caregivers and family members became powerless spectators where previously they had been welcomed as essential care partners. Now is the time to course correct so that patients and their families are reintegrated into care teams during this time when they are most needed.

As caregivers we are often the one constant in our loved one’s care, the main source of unique information about them, an advocate, and an important source of support for our loved one and for the overburdened health care providers involved, especially nurses. Who then is filling this role during the time of the pandemic?

As caregivers, we carry with us a sense of responsibility for those we care for, and the restrictions that keep us away from the caregiver role causes emotional distress for us and will add to trauma being experienced by all.

So, how did we get here and how do we navigate our way to a sensible and constructive policy?

Blanket ‘No Visitor’ policies were put in place out of fear in the early days of COVID-19. Fear of transmission, fear of the unknown and fear of the potential for the health system to be overwhelmed. The intentions behind the policies are not in question. The continued adherence to a policy that is clearly not working in the best interest of patients, their families and the system is what is in question here. While many argue that policy change takes time, we are of the view that this is patently incorrect. We have seen massive changes in healthcare policy implemented in a matter of days and weeks. Virtual care has gone from a “dream” to a reality across most of the country. Family presence policies were changed overnight, and are no different.

In our rush to contain COVID-19, we have both minimized and mis-characterized the essential role family and caregivers of patients with complex needs serve as the backbone of the health system. Without them playing an active role in care, the fact is there will be an unmanageable additional burden on health care providers tackling COVID-19.

It is time for some sober second thought followed by the inclusion of families and caregivers in collaboration to co-design caregiver and visitor policies that move away from risk management tunnel vision to a truly patient and family inspired policy that differentiates between social visitors and those who serve in the role as essential care partners at the bedside, in the moment, required from day to day while in virtually any congregant setting.

Evidence suggests that COVID won’t be eliminated quickly and that there may be subsequent waves of the virus. That means that we have to address access to non-COVID healthcare, how we care for our vulnerable populations and we have to address blanket ‘No Visitor’ policies that restrict caregivers in a multitude of healthcare related settings. We can’t wait for this pandemic to end. The longer no visitor policies are in place, the more likely it is that they will become normalized.

We offer the following recommendations:

1) Immediate recognition of the difference between ‘Visitors’ and family caregivers as ‘Essential Partners in Care’

2) Collaboration on an immediate reintegration strategy for family caregiver presence that is based on a triage methodology. This includes i) identifying specific high risk and high needs patient and resident groups; ii) allowing for applications for exemptions to any family caregiver and visitor policy and iii) a review committee for these exemptions (of which family & caregivers are a part of). iv) appropriate screening, information and PPE (when available for 1–2 identified family caregivers as essential partners in care.

3) Assurance that where family caregiver presence is not physically possible, essential partners in care are offered virtual means to connect to either i) daily rounds with the clinical team and/or ii) a daily update about the status of the patient.

4) Assurance that all patients will be supported with access to technology; tablet, cellphone, email etc. in order to stay connected with family caregivers and that access to this technology will not be restricted unnecessarily and will be supported by the institution.

4) Immediate and continual reassessment of visitor policies and emerging reintegration strategies and family presence policies with caregivers, patients and families as the COVID-19 situation changes.

It’s time to reflect on the very real needs of patients and the healthcare providers that serve them. There is deep concern about the emotional wellness and mental health toll of these restrictive policies, and there is evidence building of issues related to patient safety for vulnerable patients.

We want to find our way back to allyship; where together we will find solutions to this dilemma. There is no fault, no blame, just a call for partnership working towards the shared goal of providing the best care possible for patients in Canada that recognizes and respects the role of family and caregivers as essential partners in care and in system design.

Julie Drury is a champion of patient, family and caregiver partnership across the Canadian healthcare system, and regularly writes, speaks, consults on authentic patient engagement policy and practices.

Maggie Keresteci is a family caregiver. She advocates with caregivers across all sectors of the Canadian healthcare system to support co-design of patient and caregiver inspired policies and programs.

Claire Snyman is an author, speaker and advocate for patient and healthcare collaboration. She is passionate about inspiring people to put their health in their own hands.