Advancing patient and family centered care in the COVID-19 era

Dr. Joshua Tepper

By Dr. Joshua Tepper

In the last 90 days hospitals have been faced with an inordinate volume of difficult decisions. One of the hardest has been dramatically restricting visitors including family members and caregivers. It was a decision made to help reduce the risk of COVID-19 being brought into the hospital and to preserve scarce personal protective equipment. While the decision was made for good reasons, it can feel like we are stepping backwards on what has been steady progress on building a patient and family-centered healthcare system, including national campaigns to create family present policies in hospitals. It is also a decision that feels counter to research by the Canadian Foundation for Healthcare improvement which shows that family involvement increases staff satisfaction and creates a sense of allyship and partnership that contributes to improved relationships between the healthcare team and the patient.

Both physicians and caregiver advocates like Julie Drury have highlighted the impact that the absence of family and caregivers during the pandemic has had on patients and the delivery of clinical care in both in-patient and ambulatory settings. Patients have greater loneliness and isolation. They may lose someone who can advocate for their needs or help manage cultural and language barriers. Providers lose key sources of information and an extra set of experienced hands who are used to providing care for that patient. It is also hard to give and receive difficult information other than face-to-face.

There have been many calls for the removal of the visitor restrictions, and some places like British Columbia have revised their policies. However, it is realistic to think that for the foreseeable future some level of restriction on visitors is going to continue. It is also understandable that some families and caregivers may be reluctant or unable to visit during this time regardless of hospital policy. The opportunity becomes how to continue our advancement of patient and family caregiver care rather than stepping back during this difficult time. There are several ways to do so.

Current policies tend to be broad in their application while clinical care can be nuanced. There may be a need for more tailored approaches for certain patients or clinical areas like labour and delivery.

There is also a role for virtual communication. North York General Hospital in Ontario, like other hospitals, now uses iPads and other tablet technology to facilitate virtual visits – timing of visits can even be arranged on-line. This is only part of the solution and there limitations including technical proficiency of patients, families or staff; the staff time required to set up and run these visits; and privacy concerns. There are also simply some things that cannot be easily communicated or accomplished virtually.  Another digital solution is portals to access a patient’s personal health information. Early in the pandemic North York General Hospital implemented MyChart which is a portal used by patients and, if they wish, their families and caregivers. Depending on implementation these portals can also facilitate two-way digital communication between the family and the care team.

Some solutions for the loss of family visitors are not as clear. For example, one of the greatest losses is the presence of families during bedside rounds. Bedside rounds for care and teaching are embedded deeply into the culture and processes of a hospital. In recent years the engagement of families and caregivers in rounds has been recognized as beneficial. Families make significant effort to be present for morning rounds for the chance to learn, facilitate shared decision making, raise key issues and help with discharge care planning. It would not be unusual to see several people waiting with the patient for the care team to arrive. The presence of families in ambulatory care settings like the Emergency Department is also missed. Solutions will require rethinking of processes, technology (including ‘old school’ phones), roles of health care providers and potentially even compensation.

We also need to think about vulnerable groups and their specific needs. For example, those with communication and cognitive challenges or advanced physical decline may need different approaches. We also need to consider those with mental health issues; who are unfamiliar with our health care system such as new Canadians; and those who have had negative experiences with healthcare in the past.

Looking beyond visitor policies, much is being written about how the pandemic is a chance to reimagine our healthcare system especially as we look towards defining our ‘new normal’. Families and caregivers must be part of this re-design process. They should help us co-design our new normal including how to appropriately and safely involve families and caregivers. Their voices and involvement matter for ensuring exceptional care.

Dr. Joshua Tepper is President and CEO, North York General Hospital.