I struggle a lot with privacy as a family caregiver. We have nurses in our home around the clock to tend to Sophia’s medical and physical needs. They report to a private Healthcare Agency…who then reports to our regional Nursing Support Services coordinator at Fraser Health. Our NSS coordinator then reports to a whole other layer within our social health care system regionally and provincially.
We are, also, a part of a pediatric hospice and dozens of specialty clinics at our local children’s hospital. Then there’s life skills, PT, OT…oh, and let’s toss in pharmacists while we are at it. And don’t even get me started on the list of Sophia’s educational support workers. The list of those involved in supporting my daughter is comprehensive.
Some days I feel like there isn’t anyone who doesn’t know our personal business and I sometimes long for the days when I could slip into my home unnoticed, walk around in my pajamas and have the freedom to simply ‘be’.
But the reality is we need all these people and organizations to help support Sophia in her disease process and quality of life. So where lies the balance? Or can there be? It got me thinking about the difference between privacy and confidentiality.
Privacy is the state or condition of being free from being observed or disturbed by other people. Whereas confidentiality is having another’s trust or confidence; entrusted with secrets or private affairs.
I’d like to believe everyone that comes into our lives ensures confidentiality. I almost take that for granted and want to know it to be true. But I wonder if those in our lives understand the difference between confidentiality and privacy and although the nuances may seem so small, the impact on family caregivers is actually quite big.
We have no privacy…which means we are always being observed in our home, in our communities, during hospital or respite stays, medical appointment visits. This naturally makes the family caregiver and the person who is being cared for feel incredibly vulnerable and protective. So we rely on confidentiality.
I get really defensive about who sees our information, where is it being sent to, who has access to what. Just because the right hand funds the left hand, shakes the right leg and extends up the left side doesn’t mean those in our circle of support shouldn’t or can’t be cognisant of information sharing and be respectful of our desire for consent 100% of the time. This lends to developing trust.
We need to trust in order to feel safe. And we know that trust requires vulnerability. For those around us to tend to our needs and to my daughter’s care, we have to feel safe in order let go of our privacy and open ourselves up to being vulnerable.
So if it all comes down to trust, where does the responsibility of building trust lie?
I think that falls predominantly on the organizations, the agencies, the departments, the clinicians, the support workers, to firstly…understand the relationship between privacy and confidentiality and then co-create a space to build trust with family caregivers and their loved one. And it may simply be always asking for consent. Or, documenting and communicating what and who they’ve shared information with.
On a deeper scale, it would mean sitting down with the family caregiver and loved one and asking what privacy and confidentiality means to them. Understanding where privacy can be maintained and ensure the family care giver feels they have space where they won’t be observed and disturbed. Same goes for the loved one. What does privacy mean to the person being care for?
Right now, the only thing we can fall back on are these Privacy and Confidentiality policies governed Provincially.
This isn’t a criticism more of a ‘huh’ question mark. With more and more families caring for loved ones at home, there needs to be a specific focus on what true privacy means for families and how to make them feel safe amid the vulnerability their disease process entails.
And I believe that begins with organizations and agencies sitting down with the family caregivers and their loves ones, to determine just what the looks and feels like…
For me, it is not just about being informed of where and what information is being shared and respecting my desire for privacy amid all the eyeballs in our home and life. Privacy, for me, is just as much about the space in which we live and occupy based on my daughter’s needs at any given moment.
Beverley Pomeroy is an awarded and highly sought after Community Engagement Strategist, Speaker, Author of Living Grief; The Profound Journey of Ongoing Loss. Beverley’s community service began with a fifteen year career in private health care working for MDS Inc (LifeLabs). This community health care role developed her acumen not only for serving people in need, but also her strength in business management and organizational renewal.