There’s been so much trust broken since the pandemic began. Our family no longer trusts that school environments will keep my son safe, so he withdrew from school in September. I didn’t trust that I’d get my third COVID shot in a timely way, so I went elsewhere to get my booster.
I don’t trust the official data about the number of people who are sick with COVID in our province, because it is nearly impossible to get any kind of COVID test here. I know that the COVID cases numbers are artificially low. Other people don’t trust the government because they think the numbers are exaggerated and that they are too high. Lack of transparency from the government immediately lends itself to mistrust both ways. As the saying goes, trust starts with truth and ends with the truth.
Health care is based on relationships between human beings. You cannot have a healthy relationship without trust. A wise mom once told me that relationships were built on this premise: See you, know you, like you, trust you.
When I was diagnosed with cancer, I was introduced to a medical oncologist who did nothing to build trust and in fact, eroded it at every turn. She often sent in a resident to talk to me (I did not see her), I knew nothing about her at all (I did not know her) and she was cold and minimized my concerns (I had a hard time liking her). When she told me I didn’t need chemotherapy, I thought: why should I trust you?
I once went to the Emergency Department writhing in pain with a burst ovarian cyst, and the male doctor dismissed me because nothing showed on the ultrasound. If he did not trust what I said, how could I trust what he said? Trust is a reciprocal creature.
Health care environments are precarious. We are expected to strip naked and allow ourselves to be cut open by virtual strangers. I know there are shortages and staff are suffering during this pandemic – how can I trust that I will be taken care of if I have to go to the hospital? I don’t, and that makes me fearful.
As patient leader Amy Ma says in Ducks in a Row, “There needs to be a recognition that the health system does real harm to people. There is racism here in Canada, even if we are more polite and subtle about it.” It is impossible to trust a system that has already hurt you, and health care has caused a great amount of harm to people who are BIPOC, LGBQT2+ and disabled. So much so that Anaesthesiologist Dr. Alika Lafontaine and his brother, dentist Dr. Kamea Lafontaine, created Safespaces Network for Indigenous people to report racism they’ve experienced in health care settings so they know where the safe spaces are to seek care. There is no trust in unsafe spaces.
When the people that are supposed to care for you actually don’t care for you at all, this is called betrayal trauma. This includes our families and health care professionals. The late Erin Gilmer explained this well, and I quoted her in a tribute that I wrote for her for The Patient Revolution:
“Each instance where trust is broken over and over, where individuals and systems demonstrate that our well-being is not kept at the heart of all care is a type of betrayal trauma no matter how big or 'small' that event might be.”
Friday Reads has a chilling article about how the wellness industry is leaning towards the white supremacy-fuelled anti-vaxx movement – and how this began with a mistrust of the medical community. If it starts with mistrust, then it ends with mistrust.
How do we build back trust in our public health officials? They have to start being honest, transparent with data and admitting when they have made mistakes. This is not happening in my province. In fact, our Public Health Officer recently said, “I’m not sure I’m at the point where regrets are what we need.” Other officials have expressed regrets, but such humility does not exist everywhere.
Can I trust the health care system ever again? I’m not sure. I do know I can trust individual people who work in the system, and that’s a start. My family physician who called me randomly to see how I was doing during my cancer treatment. The pediatrician who sat on the floor with my then-two year old to have a good chat with him. The surgeon who held my daughter’s hand as she was wheeled into the operating room. The mammogram tech who brushed my hair out of my face during my breast biopsy.
Paraphrasing Dr. Kristen Meisinger, if you feel cared for, you will care for yourself. Feeling cared for is the foundation of relationships in health care. It is health care after all. Where has the care gone? We need to infuse it back in, starting with the basics: respect, dignity, information sharing and partnership. It begins with compassion and demonstrations of kindness.
I’m not talking about the fake ‘be kind’ doled out by officials. Dr. Jillian Horton talks about this type of kindness gaslighting in the Globe and Mail, “If you’re a politician, medical expert or government official enacting or defending plans that have resulted in thousands of people getting unnecessarily sick and dying, you have no right to talk about it.” This type of kindness feels like this: be kind, but only to me, for I devalue other human beings.
Demonstrating that we care for one another with true tangible actions is the way back to rebuilding relationships. In my first book, I call these actions warm blankets. The warm blankets of compassion are not small things. They are the one thing that will start to mend these broken relationships.
In health care settings, a smile in the hall (I can still see the smile in your eyes, above your mask), a hand on a shoulder, an encouraging word can start to build back trust. Amends need to be made before the trust is forever fractured.
Organizationally, it is imperative that health care reaches beyond its brick walls to engage with the people. Mistrust is invading at all levels and that will do nothing but cause irreversible harm.
The state of today’s polarized world shows me that if we don’t have trust, we have less than nothing.
Become part of the groundswell.
You can buy a copy of my second book Ducks in a Row: Health Care Reimagined here. It is a book of encouragement for those who reject the status quo and who pine for change in health care. Packed with ideas, and importantly, practical ways to overcome barriers to change.