Lexi Daken's parents to be given hospital records as long as they don't share them

Lexi Daken's parents have finally been granted approval to see the late Fredericton teenager's hospital records but only the last two visits and only if they agree to not share the details with anyone else.

Chris Daken said he feels as if he's been "strong-armed" into silence.

But he's desperate to discover the details of what happened to his daughter, so he plans to agree to keep the information secret.

Sixteen-year-old Lexi went to the emergency room at a Fredericton hospital on Feb. 18 and asked for mental health help. After waiting eight hours, she left without any mental health interventions. She died by suicide less than a week later.

"We don't agree with having to sign this disclosure to get her health records. As administrators of Lexi's estate, I thought that legally, we were entitled to her health records without any conditions attached."

While the letter from Horizon Health Network's lawyer doesn't mention a formal non-disclosure agreement, it states thatthe records will be released "pursuant to an implied undertaking" that the Dakens keep the information to themselves.

The letterstipulates that the documents "not be conveyed to any third parties outside of legal counsel or experts." It specifically states that the records cannot be provided to the media or shared on social media.

Daken believes keeping quiet is the only way he and Lexi's mom, Shawna, will be able to see the information they requested months ago.

"We are very adamant that we think it's a wrong decision that we're basically being forced to sign to see them. So, you know, they're kind of putting our backs against the wall or pushing us into a corner and saying, 'Oh, well, yeah, we'll give them to you, but it's going to be under our rules.'"

The Dakens went public about the circumstances surrounding their daughter's death in February in the hopes of improving the province's mental health care system and ensuring that other parents don't have to endure what they did.

Now they fear that the gag order will hurt their pursuit of those goals.

"We've been so public with everything else that it's kind of a kick in the gut that we can't share everything, even though we would probably want to," said Daken.

Lexi's death sparked widespread debate over the gaps in the mental health care system. Health Minister Dorothy Shephard quickly acknowledged that the system was broken, and she vowed to fix it.

In May, Shephard announced that the government will implement 21 recommendations this fiscalyear to help do that.

A longtime mental health advocate from Ontario said there's definitely something wrong with New Brunswick's mental health care system when the parents of a 16-year-old have to go to court for access to health records.

Bill Wilkerson, the co-founder of Mental Health International, said adding a non-disclosure clause to that access is "outrageous."

"How I would interpret that nondisclosure requirement is that they, in fact, perceive they have a risk and perhaps have something to hide. Otherwise, why would you impose such a condition on a family who's going through the most egregious form of loss possible?"

Wilkerson, who has been advocating for another New Brunswick mother in a similar situation, said hospitals should willingly provide families with such information to allow them to grieve and absorb what happened to their child.

He said the two New Brunswick cases indicate "a malaise within the Horizon culture that is putting lives at risk."

And while 16 may represent some sort of legal threshold that excludes parents from access to private information, Wilkerson said 16-year-olds are still children and parents should automatically be entitled to inclusion and access to their health records.

Daken doubts whether parents would allow their 16-year-olds to make their own decision about cancer treatment, for example.

Since Lexi had been experiencing mental health issues, Daken doesn't believe she was capable of being in charge of her own health-care decisions.

We were just her parents.- Chris Daken

"A lot of decisions she would have made were probably not in her best interest because, obviously, her mind wasn't well."

Dakensaid he never would have dreamed that once a child turned 16, their parents wouldno longer be entitled to access health-care records.

Daken said that's part of why they wanted to go public with Lexi's story so that parents understand what happens when a child turns 16, as Lexi did the month before her death.

In April, when Lexi's parents asked for her hospital records, they were told they would have to apply to the courts to be made "administrators."

"We were just her parents," said Daken, who had to get a lawyer to help with the process. "Her health records were hers and we weren't entitled to them."

Daken is disappointed that if there is something in the 143 pages of documents that might be beneficial to others, he can't tell anyone about it. He's still hopeful what he's shared of Lexi's story so far has made other parents moreaware of the difficulties that exist when trying to access documents.

Patty Borthwick is well aware of the difficulty.

She's been trying for months to get access to her daughter's hospital records.

Borthwick's 27-year-old daughter, Hillary Hooper, was a patient in the psychiatric unit at the Saint John Regional Hospitalwhen she took her own life on Dec. 2.

Hooper had made several suicide attempts in the months leading up to her death, and she was admitted to the hospital after a particularly close call on Nov. 13.

With her daughter's history, Borthwick wondered how Hooper was able to die in a secure psychiatric unit. In February, when she was strong enough, Borthwick started asking questions and getting the runaround from hospital officials.

She has yet to receive answers to her questions.

After hearing about Horizon's letter to the Dakens' lawyer, Borthwickwrote a letter to Horizon officials, asking"how the family of Lexi Daken was afforded the courtesy of receiving her medical records."

She said she's been asking repeatedly since February for the same thing in her daughter's case to no avail.

"Since you have set this precedent at Horizon Health and have gone against the very Health Quality and Patient Safety Act that you quote, along with the Personal Health Information and Protection of Privacy Act that you are all so fond of hiding behind and using as an excuse to deter me, can you please explain why I am not afforded the same information that the Daken family was given?"

Earlier this month, Wilkerson sent a letter to Premier Blaine Higgs, calling on the government to investigate the circumstances surrounding Hooper's death.

Wilkerson said he was particularly appalled when hospital officials "used the privacy con game that hospitals use frequently to not communicate information."

The Horizon Health Network was asked for comment on Tuesday about the Daken case, and a spokesperson forwarded a response from Margaret Melanson, vice-president quality and patient-centred care.

"As stated previously, any decisions related to the release of confidential health records are carried out in accordance with New Brunswick's Personal Health Information Privacy and Access Act."

On Wednesday afternoon, Horizon provided additional information, including that "legislation imposes an ongoing responsibility upon custodians in this case, Horizon Health Network to protect the privacy of patients, even after their death."

If you are in crisis or know someone who is, here is where to get help:

CHIMO hotline: 1-800-667-5005 /http://www.chimohelpline.ca

Kids Help Phone: 1-800-668-6868, Live Chat counselling atwww.kidshelpphone.ca

Canada Suicide Prevention Service: 1-833-456-4566