Cracks in patient and family centred care exposed by the pandemic, author says

by Sue Robins for CBC First Person

Sue Robins worries hospital policies brought in during the pandemic, such as restrictions on visiting and allowing patients to have family with them, have been made without much patient input.

"There are instances of compassion… But I worry that they have become the exception," the author and health-care advocate told Dr. Brian Goldman, host of White Coat, Black Art.

Dr. Samir Sinha, the director of geriatrics at Sinai Health System and the University Health Network in Toronto, said concerns about the pandemic and the spread of COVID-19 have led hospitals to be even more risk averse.  

"I think when you have a virus that frankly has been full of surprises and has been a lot different than other traditional beasts out there and has left a massive death toll across Canada and around the world, the last thing you want to do when you're scared and you're worried is to do something that causes harm. So sometimes it's just safer to say just don't touch because we're not sure. I think that's what really underlines this."

As a parent of a son with Down syndrome, Robins has navigated the health-care system. She's also been a hospital insider, in her roles as a patient engagement expert at two children's hospitals in Canada. More recently, she's been a patient herself, as she faced a breast cancer diagnosis.
 
She says she has seen some of the cracks the pandemic has exposed when it comes to patient and family centred care up close. 

I walk into the cancer hospital for my breast ultrasound appointment. I arrive alone and I'm wearing my mask. There's a tall man, a staff member, who is screening for COVID at the door.
 
The first thing he says is, "You can't wear that mask. You have to wear our medical one." "OK," I say, and go back outside to switch masks. The medical mask smells awful. I go back into the building.
 
"Can you please let me into the stairwell?" I ask. I knew from a previous visit that the outside stairwell that is nearby is locked and a staff member has to let you inside with their card. My son is immunocompromised and I'm cautious in public buildings. I avoid elevators if I can.
 
"No, I can't."

I'm confused because the last time I was there two weeks ago, a screener let me in. "I don't want to take the elevator in a pandemic," I say, repeating my request.
 
He shrugs.
 
I'm close to tears. I don't have my husband with me, as I usually would, because I'm not allowed to bring a support person. I walk dejectedly towards the elevator, which I know from previous visits, at least prior to the pandemic, is usually packed with people.
 
My mind is racing to think of another tactic. I go back and ask politely, "Can you show me an internal stairwell and I'll go there?"
 
"I don't know where they are." Another shrug.

I feel silly, but I'm actively crying now. I can't think of a recourse. I give up and take the elevator. It's empty, so there's no risk to me. I know I shouldn't be crying, but I'm also totally stressed out to be going for this ultrasound to see if my breast cancer has returned in the other breast. There are "suspicious spots."
 
I call my husband when I get to the third floor and wail into the phone. He's waiting in the car outside in the pouring rain. "Do you want me to come?" he asks, concerned. "No," I say, "they won't let you inside anyhow." 

This no big deal is a big deal

I dry my tears off in the ultrasound change room. The ultrasound hurts a lot. The tech is pressing really hard on my breast and in my armpit. I have a male tech and I'm not happy about that, but what can I do? I'm passive and compliant as they want me to be.

I've had many ultrasounds I don't remember it hurting so badly. I'm silent, my eyes shut tight, my teeth clenched. People keep coming in and out of the ultrasound room while I'm lying there, my breast exposed to the world. It is painful and humiliating.
 
Did the whole experience need to be this way? No, no it didn't. Once again, I get the feeling that I'm just a bother to the staff in the hospital.
 
On my way out, I pass the drop-off area at the front of the building. There's an elderly gentleman parked there, waiting in the rain for someone, perhaps his wife.

There's a man at the window of his car speaking to him loudly, and I can't help but overhear.

It is the driver of the interhospital transfer van. He's angry the elderly man is parked in the drop-off zone.

"Get out of the way," he yells, "you can't park here."

It feels like a betrayal when the people who are supposed to care about you actually don't care about you at all.- Sue Robins

Witnessing this exchange makes me even sadder because I know that it isn't just me who is the recipient of unkind behaviour. 
 
It feels like a betrayal when the people who are supposed to care about you actually don't care about you at all.
 
I've learned that kindness is an active choice. You can choose to do nothing, to do the bare minimum of your job, or you can choose to go over and above your call of duty to be kind. The screener could have opened the stairwell for me. If he couldn't leave his post, he could have asked someone else to do it. He could have found out where another stairwell was. But he chose not to.
 
I have been called a whiner, oversensitive, dramatic and hysterical when I speak up about these little cruelties in health care. I reject this name-calling. Sticks and stones, folks.
 
I have a friend who has metastatic cancer and has signed up for medical assistance in dying (MAID). She won't go back to the hospital because of the way she has been treated there. Not just by her physician, but by everybody who works in the facility.

I have a chapter in my book called Everybody is a Health Professional – every single person who works in health care – whether they are a clinician or not – has an effect on patient care.
 
I have another friend who has Stage 4 cancer and goes to the same cancer hospital regularly for treatment. She describes the way she is treated there as "death by a thousand cuts." Cuts from the parking attendant who won't smile, the switchboard operator who is curt, the greeter who forces you to take the elevator, the receptionist who reluctantly looks up to check you in like you are the last person she wants to see in the world. Another staff who yells your name across the waiting room to come in.
 
It shouldn't be a surprise that patients already feel shitty because we have cancer. All those tiny cuts contribute to making a cancer patient feel even shittier than we already do.

The solution is compassion

This is the realization that every single person presenting to you in the cancer hospital is having a hard day. A welcome, a smile, even underneath your mask. Giving the sense that you are glad to see me and that I'm not an interruption to your day. Going out of your way, even a little bit, to be actively kind.

The opposite of kind is cruel. Little microaggressions teeter on cruelty. You have the power to make a patient's day a wee bit better. If you just try one tiny kind action today – help someone lost in the hall, smile and say hello to everybody you pass, do a small act that's out of your way – I can guarantee it will help brighten your day too, even in a pandemic.
 
Kindness begets kindness. Please pass it on.
 

This piece originally appeared on her website and is used with her permission.