The COVID-19 pandemic has exposed many gaps in healthcare systems around the world. No country or health system has been spared the harsh spotlight. Yet over the last few months, there has been one gap that has not gotten a lot of press – the lack of access of caregivers to their loved ones in long-term care or other healthcare institutions.
When the pandemic hit, many healthcare facilities (hospitals, elder care, adult care homes, facilities for disabled children + adults, etc) banned visitors. This effectively cut off families from their loved ones and deprived these vulnerable patients from their primary health advocates. Suddenly there was no one to translate for non-English speaking grandmothers, to remind dads to take their medicines or help keep children calm when it was time to eat.
As the months passed by, the voices of caregivers and their families grew, but their complaints and ideas largely fell on deaf ears. The healthcare system prioritized stopping the spread of COVID-19 above everything else – even if it meant putting patients in discomfort (and perhaps at risk) by barring loved ones from entering.
I must admit, I am fortunate right now that none of my loved ones were in a healthcare facility during COVID-19. It’s a poor excuse, but because of it, I didn’t realize the extent of this issue until I started reading Julie Drury’s @SolidFooting tweets, like this one:
Honestly, a week or so off of Twitter and we are still talking about ‘visitors’
These essential caregivers are NOT VISITORS!!!!
(Yes, that’s me yelling and yes residents and families are at risk and suffering every day bc of these poorly designed policies. DO BETTER!) https://t.co/Ea8X60qvDK
— Julie Drury (@SolidFooting) August 14, 2020
It is because of Drury that I learned about the hashtag #MoreThanAVisitor which I have now been following more regularly. I would highly encourage you to spend time exploring the hashtag, but BE WARNED, there are many heartbreaking and enraging stories from families that have been shared. Here’s a recent story that Susan Mills @Priorhockey shared about another LTC family (with permission):
Hi everyone. The past few months have been horrific for our family. We were denied visitation with my mom even though she had cancer that was not treatable. She died two weeks ago of acute renal failure. I only got to be with her an hour and a half before she died. There were so many missteps and mistakes made and i’m struggling to find peace. We have had it out with the administration and all they do is finger point at each other.
I have written to the ministry of health, the premier, my local mps to try and bring awareness of the effects and consequences of this lockdown for residents and their families but no one will respond. I’ve turned to social media to share our families story in the hopes it can help at least one person out there. Im sharing the story over days as it is too long to share in one post but ive made the post public and i ask you to read it and share it.
There is so many important aspects of our story that people need to know about. I just want to help one person from not feeling the hurt and pain that i do right now. Thanks to you all
The core argument being made by families is that there is a difference between a “visitor” and a “essential caregiver/partner”, yet everyone is lumped into the same designation when it comes to healthcare policies. What’s the difference you ask? Here is a simple graphic from CFHI that explains it:
See CFHI’s excellent resource on re-integration of family caregivers which is full of useful tips and strategies.
The key for me is the decision making that essential caregivers provide. I believe this has been completely overlooked by policy makers and facility managers. This is not just about wanting to be sitting by mom or dad’s side, it’s about having someone of sound mind in the room to help ensure mom or dad is getting the care they need…especially at a time when staff are stressed and overworked.
Petitions to open up LTC
- Recognize that essential caregivers (often family members and support persons) are more than just visitors, and that individuals have the right to access their essential caregivers in their agreed upon, preferred manner
- Ensure that the provincial government cannot unilaterally develop policies regarding access to essential caregivers, and must consult residents, patients, families, experts and workers when developing new policies
- Ensure that individuals cannot be prevented from accessing their essential caregiver(s), including during the state of emergency or the pandemic (COVID-19), while giving congregate settings the resources they need to safely implement this
- Includes a strategy that stabilizes staffing in congregate care settings and ensures the role of essential caregivers is to supplement care and support.
It generated over 2,100 signatures. A similar petition from Seniors Voice 2020, generated over 3,800 signatures.
Not just about seniors
It’s important to note that this isn’t just about seniors, there are also many families with loved ones who are developmentally challenged or disabled who are in facilities that have banned visitors during COVID-19. For these families not even video calls via tablets are much help since their loved ones often become even more confused when “seeing” familiar faces or hearing familiar voices but not having them in the room with them.
What has been frustrating for caregivers is that reason for barring their entry to facilities has been “safety”…yet people who work at the facility pose just as much risk to the patients as caregivers. Both are free to go about their daily lives outside of the facility. Both are equally likely to contract the COVID-19 virus which does not discriminate between healthcare works and family caregivers.
Solutions exist for mitigating the safety concerns:
- Testing caregivers for COVID-19 as frequently as staff
- Put patients with essential caregivers in one area/floor and those without in a different area
- Provide guidelines for the needed PPE that caregivers would have to have
- Implement a consistent policy across the healthcare system
In recent weeks, more and more healthcare facilities have begun to allow “visitors” back in but sadly, for many it’s too little too late.
Caregivers + 2nd wave
Most experts agree that there will likely be a second wave of the COVID-19 pandemic and that restrictive physical distancing measures will once again be needed. Can we avoid making the same mistake with essential caregivers that we made in this first go around? Can we get organized and put enough pressure on healthcare leaders to carve out a special designation so that these important parts of our collective care network can help in a time of crisis?
That’s what I would like to discuss with the #hcldr community this week. What can we do to help ensure caregivers are not lumped in with visitors again? Join me Tuesday September 8th at 8:30pm ET (for your local time click here) as we discuss:
- T1 How would you define a visitor vs an essential caregiver?
- T2 Should there be qualifications/criteria that must be met before being designated an essential caregiver? Too much of a barrier?
- T3 What needs to be done to ensure caregivers aren’t barred during future waves of this pandemic?
- T4 What other support do essential caregivers need?
End Note: On September 3rd the Ontario Government changed the policy and announced that designated caregivers can visit long-term care residents even during outbreaks.
Drury, Julie. “Family Caregivers as Essential Partners in Care: More Than Just a Visitor”, Longwoods, 20 April 2020, https://www.longwoods.com/blog/4383-2/, accessed 7 September 2020
Shapiro, Joseph. “Hospital Visitor Bans Under Scrutiny After Disability Groups Raise Concerns Over Care”, NPR, 17 May 2020, https://www.npr.org/2020/05/17/857531789/federal-government-asked-to-tell-hospitals-modify-visit-bans, accessed 7 September 2020
Mega, Kathleen. “Hospital visitor bans fail disabled patients, complaint says”, CT Mirror, 27 May 2020, https://ctmirror.org/2020/05/27/hospital-visitor-bans-fail-disabled-patients-complaint-says/, accessed 7 September 2020
Karlawish, Jason et al. “Continued bans on nursing home visitors are unhealthy and unethical”, Washington Post, 13 July 2020, https://www.washingtonpost.com/opinions/2020/07/13/residents-good-nursing-homes-should-consider-re-allowing-visitors/, accessed 7 September 2020
Karlawish, Jason. “Hospitalized adults need their caregivers — they aren’t visitors”, Stat News, 29 March 2020, https://www.statnews.com/2020/03/29/hospitalized-adults-need-their-caregivers-they-arent-visitors/, accessed 7 September 2020
“Some Ontario doctors, families worry rules for care home visits causing harm to residents”, CBC News, 16 June 2020, https://www.cbc.ca/news/canada/toronto/ontario-long-term-care-visits-1.5613417, accessed 7 September 2020
Pinkerton, Charlie. “Ontario’s nurses seek special visitor status framework for caregivers at long-term care homes”, iPolitics, 16 July 2020, https://ipolitics.ca/2020/07/16/ontarios-nurses-seek-special-visitor-status-framework-for-caregivers-at-long-term-care-homes/, accessed 7 September 2020
Rogers, Sharon. “Why can’t I visit? The ethics of visitation restrictions – lessons learned from SARS”, Critical Care, 31 August 2004, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1065028/, accessed 7 September 2020
Eltawansy, Sherif. “When Hospital Visitors Do More Harm Than Good”, Doximity, 18 September 2019, https://opmed.doximity.com/articles/when-hospital-visitors-do-more-harm-than-good, accessed 7 September 2020
Kaufmann, Bill. “Caregivers and families of developmentally disabled target UCP over privatization fears”, Calgary Herald¸ 25 July 2020, https://calgaryherald.com/news/local-news/caregivers-and-families-of-developmentally-disabled-target-ucp-over-privatization-fears, accessed 7 September 2020
“Editorial: Opening up long-term care homes to family visits is the right move”, Ottawa Citizen, 4 September 2020, https://ottawacitizen.com/opinion/editorial-opening-up-long-term-care-homes-to-family-visits-is-the-right-move/wcm/ac53b9e2-548d-425b-8152-d524250d0b39/, accessed 7 September 2020
Payne, Elizabeth. “Family caregivers will no longer be locked out of long-term care during COVID outbreaks”, Ottawa Citizen, 3 September 2020, https://ottawacitizen.com/news/local-news/family-caregivers-will-no-longer-be-locked-out-of-long-term-care-during-covid-outbreaks/wcm/9bdbee61-1a8d-4b7f-89bf-9fad43ca5d83/, accessed 7 September 2020
Young, Robin and McMahon, Serena. “Patient Advocacy Group Offers Advice For Sick Loved Ones And Families Facing Coronavirus”, NPR, 15 April 2020, https://www.wbur.org/hereandnow/2020/04/15/patient-advocacy-group-coronavirus, accessed 7 September 2020
Deggans, Eric. “When A Beloved Life Ends, Virtual Hugs Can’t Replace Human Touch”, NPR, 3 May 2020, https://www.npr.org/sections/health-shots/2020/05/03/844806361/when-a-beloved-life-ends-virtual-hugs-cant-replace-human-touch, accessed 7 September 2020
Trogen, Brit. “Do hospital visitors impact patient outcomes?”, Clinical Correlations, 3 August 2018, https://www.clinicalcorrelations.org/2018/08/03/do-hospital-visitors-impact-patient-outcomes/, accessed 7 September 2020