What Do You Mean You Can’t Talk To Me?

I'm Sorry. I Can't Talk With You.

10-01-23 - What Do You Mean You Can’t Talk To Me?

Written by and for people with Lived Experience - Port Alberni Community Action Team - Families Helping Families  

Let me tell you a story. It begins with loving someone in my family who has mental health and substance disorders (concurrent disorders). For this story, let's call him Rick. I found myself standing in front of a nurse who informed me that they could not share any information about the treatment or details of Rick’s condition with me. Rick’s right to privacy was the reason. Here in BC, those rights are laid out in the BC PERSONAL INFORMATION PROTECTION ACT. Other provinces either have their own version of the BC Act or use the Federal Privacy Act.

I get it. Rick is an adult and has the right to self-determination and to protect his information – even from us, his family.

 Where does that leave us, the family? We love them. We want to help them. We want to advocate for them. Just because they become adults doesn’t mean we stop caring about them or wanting to help when they’re not well. Having family advocate for people with concurrent disorders can be extremely important for their health care plan.

Often people with mental health and substance disorders don’t think as clearly as they normally would. Usually not enough to be declared mentally incompetent, but certainly enough so that they may not clearly understand the seriousness of their condition, treatment options or make the best decisions.

Now I worded that last paragraph very carefully. The way it reads would make you think the seriousness of Rick’s conditions should override all his rights. Especially as we’re his family and have only good intentions in his care plan. That’s the point about the rights we have as Canadians. They can’t be overridden apart from very exceptional circumstances. I’m not OK with many of Rick’s choices, however, Rick is, — even though I and the rest of the family don’t think he appreciates the dire picture of his situation.

Over the years, I’ve met dozens of professionals who have used the privacy line to end conversations. Sometimes legitimately, other times it’s an easy out to end a difficult and often emotional discussion with a patient's family.

When the family can’t access information, it puts them completely in the dark. That is a dreadful place to be, especially concerning the best interests of someone you love. It’s completely frustrating and terrifying for most families. You don’t spend decades bandaging bruised knees and drying tears from their faces only to be told now that you can’t be involved. That makes us feel helpless. After all, parents try and fix everything for their children. It doesn’t stop when they become adults.

Let’s get down to brass tacks. I want to spend some time giving you practical suggestions on how to communicate with professionals as a family of someone with concurrent disorders.

Let’s start with what gives you the right to be completely involved in your family member’s health. First of all, they granted their permission. So in your first initial conversations with professionals, when they say they can’t share info because of privacy laws, request them to go and ask your loved one for their permission. If you’ve really prepared ahead of time, you’ll have a Health Representative Agreement in place. Every family should have planning in place for spouses AND adult children.

So what happens when Rick or your family member says, no, I don’t want my information shared with my dad, mom or family — what then? Frankly, that pretty much seals the deal. Professionals now must protect Rick’s information.

However, as a family, we’re not completely without some strategies to work with, even when our loved ones won’t provide permission to be involved in their care plan. Before we get to those strategies, I will caution you that not all professionals will be open to walking in this grey area with family. Not much you can do if they flatly say no except hope for a better interaction with some other professional on the next shift or the next time your family member ends up in care again.

First of all, and this is really important — just because the professional can’t share information with you does not mean you and the family can’t share information with them. Often your observations of behaviour, substance use and other information can be crucial in helping professionals diagnose mental health conditions or in putting appropriate health care plans in place for your family member. Knowing you are entering into a one-way information upload is the first step in tailoring your communications with healthcare team members. Don’t ask questions. Instead, make statements of facts from your and the family’s perspective.

Okay, back to Rick. He’s told his care team not to share information with us, his family. I’ve given all the information on Rick’s behaviour to his primary care nurse. She listened very attentively and even took notes. We’re 75% there, however, nothing in our conversation has alleviated my fears about his condition today or answered any of my questions on diagnoses, treatment plans or long-term outcomes.

This is when you have to become innovative. I call it (Health Care Team Hypothetical Communications Strategies 101) — jeez, those were a bunch of big words! In short, I will try and get them to talk about a generalized version of Rick. Here’s how the conversation might play out.

Ø   “Thank you for listening to our family’s observations around Rick’s condition. I’d like to ask some general questions. If I ask something that is over the line regarding Rick’s privacy, please just tell me you can’t answer.”

Ø  “I’m not big on labels, however, I’m wondering if other patients with similar symptoms like Rick’s would best be described as being depressed?”

Ø  “If a person similar to Rick was depressed, what kind of treatment or things we the family could do that would work best to help them?

Ø  “If Rick told us he was diagnosed as schizophrenic, what would his treatment plan look like during the next 6 months?”

Ø  “If someone like Rick refused to accept his mental health diagnosis, what happens next?”

Yes, we’re speculating about some mythological patient, somewhere in Canada that might in some way resemble our Rick. That provides a huge grey area for our Health Care Professionals to enter into conversation with us. If they get it, they will not talk about Rick — they’ll talk about many people they have cared for across their career who for your questions, might have similar patient history and expected outcomes as Rick.

Many Health Care Professionals will jump at the chance to help inform the family without violating patient confidentially. Some will not and will absolutely refuse to engage in discussion. Respect their position and move on. You’re in this for the long haul. Try again tomorrow with someone else on Rick’s Care Team.

Well, there you have it. It’s not perfect in any way, however, it does work 50% of the time and is usually the only way to interact with a family member’s Health Care Team proactively without alienating them. By the way – no promises here. This strategy might work and it might not, however, it’s better than the alternative which is being in a black information hole.

As I side note, over the decades that our Rick has struggled, I have only run into a few Health Care Professionals that utilized this strategy in reverse. I suspect that it is just too risky for them to open a conversation with

— “ I can’t talk about Rick due to privacy, however, in general, when I see hallucinations in patients, it’s either driven by drug usage or psychosis or both.”

The result of this conversation is families running off and telling everyone that the nurse said Rick has drug-induced psychosis. Not cool! When Rick finds out what’s being said about him, he’ll lodge a formal complaint and that very nice nurse is now sitting on an ethical hot seat likely to result in a serious official reprimand.

Be respectful of any information you’re given. When Health Care Staff know they can trust you, more information will come your way.

Author: Ron Merk  – Ron is a person with family-lived experience. He advocates for people with substance or mental illness.

This article is an opinion commentary piece.

Families Helping Families is an initiative of the Port Alberni Community Action Team. We regularly send out "Learning Moment" articles to help folks understand substance illness. Knowledge is vital in understanding the disorder of our family members. You may copy, distribute or share our articles as long as you retain the attribution. Add yourself to our distribution list by dropping us a note at - albernihelp@gmail.com