Privacy versus patient health under spotlight
Pressure is mounting for mental health workers to change the way they deal with the privacy concerns of suicidal patients, in the face of concern the issue is contributing to New Zealand's suicide problem. Julia Hollingsworth investigates.
Robert* hadn't wanted to tell anyone he was there. He was scared, unwell, wanting to die and felt he had run out of options. He planned to go to the hospital, talk to someone and leave again - as he puts it now - a little better equipped to deal with the world.
Instead, the 22-year-old says in May this year he found himself being assessed under the Mental Health Act for compulsory treatment. The psychiatrist explained that as Robert was at risk of committing suicide, he would have to stay at Dunedin's Wakari Hospital that night. "We have to tell your family," the psychiatrist told him.
But Robert protested, so the psychiatrist asked Robert's friend Hazel*, who had joined him in the waiting room, to witness the assessment instead.
Two days later, Hazel says a nurse rang her and she turned up, signed a form, and left with Robert and a prescription for sedatives and anti-depressants.
Hazel says that, contrary to the Ministry of Health's guidelines for people at risk of suicide, Robert's family was not informed of his situation during assessment, or of the risk involved in his discharge and there was no discharge plan. She says he left the hospital with no support set up, no counselling and some strong medication.
Hazel is still angry about it, particularly because after he was released, Robert's condition worsened.
"It was absolutely unacceptable . . . for them to have released him into my care. I am young, have no expertise in mental health and am a woman, meaning Robert could easily have overpowered me if he wanted to. I had no way of supervising Robert, he did not live with me, I did not even know his family, and I didn't have a car. I was about the worst person to be made responsible for him.
"I should have stood my ground. I feel abused by the fact that they convinced me to sign the release forms when the results could have been so disastrous."
The Southern District Health Board was twice approached for comment, but declined saying it did not have the authority from the patient. However, a spokeswoman said its policy was to follow the guidelines under the Mental Health Act.
There's increasing evidence that a desire to prioritise a patient's privacy over other considerations is partly to blame for New Zealand's grim suicide toll.
Take two cases, both from March 18, 2008. Canning Ormond Pere committed suicide in Upper Hutt. The coroner's report states his family hadn't been properly consulted and the possible side effects of his medication hadn't been explained to them.
The same day, Marily Fentress Scanlon died in Christchurch. She was being treated for depression, but her husband hadn't been told there was a risk that his wife of 28 years might take her own life. Coroner Garry Evans' report recommended amending the Privacy Act 1993. He said patient risk management plans should be shared between clinician, patient and the family - unless there was good reason not to.
Chief Coroner Neil MacLean says one of the most common recommendations in suicide cases is that the Privacy Act 1993 should be reviewed.
Under the health information privacy code developed through the act, doctors can't share the details of a patient's case, with a few exceptions. A doctor is allowed to disclose information to the family of a patient who is about to be or has been released under the Mental Health Act. And a doctor is allowed to disclose information to a person who can actually help prevent or lessen a "serious" or "imminent" threat to public health or safety, or to the life or health of the patient or another individual.
The problem is, no-one seems to agree on when someone is sick enough that there is an "imminent threat" to their life.
The problems aren't just with sharing information between the medical professionals and the family, says Judge MacLean. Various coroners' recommendations show medics aren't talking to each other enough about their patients, or to other authorities such as police.
"There's a breakdown in communication about the seriousness of the situation," says Judge MacLean.
He isn't the only one who thinks the law needs changing. A 2011 Law Commission review of the privacy law resulted in the Privacy Amendment Bill 2011, which is at the select committee stage. The main change would be to remove the word 'imminent', so doctors are allowed to disclose information about a patient when the threat is "serious". It's the very change that was recommended in Mrs Scanlon's case.
Sebastian Morgan-Lynch, a senior policy adviser in health at the Office of the Privacy Commissioner, says the bill would make the threshold clearer and more usable.
"If it improves clarity, that's a really good thing for people who are dealing with difficult issues like mental health."
But many are unconvinced the wording change will make any difference.
Associate Health Minister Peter Dunne - who helped draft the Privacy Act two decades ago - says the problem is not the act, but how it's interpreted.
"The bigger issue is a lot of it is attitude and practice change."
He maintains that often sharing could be done under the existing law, but doctors choose not to. He thinks the law could be rephrased, so that instead of an exception allowing doctors to tell family members, they should be obliged to do so in certain situations.
"Should a family have access to information about the circumstances affecting a family member? I would say nine times out of 10, absolutely."
Mr Dunne is focusing his effort on talking to change things. He says the director of mental health, the chief coroner, the privacy commissioner and himself will reach an agreement, and then consider if the law needs changing.
The director of mental health at the Ministry of Health, John Crawshaw, was not available for an interview but said in a statement that he will be meeting with the chief coroner in coming weeks, when information sharing is likely to be discussed.
He says clinicians often have to balance a tension between consumer privacy and family or whanau desire for involvement.
But policy and politics only go so far - ultimately there must be changes at the hospital bedside, so to speak. So what do those who help patients in crisis think?
Many mental health staff find it difficult to speak publicly for fear of professional repercussions. But one DHB mental health worker says it's only in the past couple of years that some mental health units have had an electronic records system, giving them instant access to a patient's medical history.
The team member agrees the Privacy Amendment Bill probably wouldn't make any immediate difference.
"I think many people would just keep doing what they're doing. I don't know how many professionals wait for it [a patient's situation] to be imminent."
Judge MacLean says the police are working on an initiative where they track and record profiles of mentally ill people in the community. If the person's actions become more worrying or increase in frequency, the police will have a mental health professional accompany them to check up on the person.
In the past, Judge MacLean says, "if it wasn't a crime, [the police] would sort of calm them down, drive them home and kind of just write them off."
Senior police media adviser Victoria Evans would not confirm the initiative, but said police are working on a memorandum of understanding with the Ministry of Health.
Suicide expert Annette Beautrais of the University of Auckland says there must be a balance between the patient's right to privacy and steps to make them better. While family support can help, a feeling of control over their affairs can also help the patient.
"In an age where we're trying to give self-efficacy and self- empowerment to people with mental health problems, it's difficult to decide in terms of privacy issues that their wishes should not be respected or should be over-ruled by the family's demands for information."
Robert is wary of any changes.
"Amending the Privacy Act and going behind people's backs seems from a subjective patient perspective to make this behemoth of a dehumanising system even worse."
Families and support people think change is needed, but differ on the approach needed.
Mrs Scanlon's husband (who didn't want to be named) says, "mostly GPs are uncertain about what to do, and can cower behind a literal interpretation of the act. This can be - and has been - a tragic omission."
He feels the threshold for when doctors are able to share information should be lowered, and any amendment to the act should encourage - or even require - that the doctor discuss such information with a primary carer or responsible family member.
For Hazel, when asked if the proposed amendment would have made any difference for Robert, the answer is clear: No. Because the psych team had decided to follow Robert's wishes they probably wouldn't have told Robert's family anyway.
She says ultimately, information sharing is only as good as what someone can do with it. The health information privacy code says when there's a serious or imminent threat, disclosure must be made to a person who can actually help - but whose responsibility is it to make sure that a person is equipped to help?
"Sharing the information is probably a bit pointless if the families aren't properly able to deal with it. I think you can't just share information and say 'Oh look, we shared information, it's off into the ether, the email has been sent, the phone call has been made therefore it's fine'. There needs to be some kind of procedure where once you share the information, there's a support base.
"Until they do that, I think people will keep dying, or if not dying, living in such a way that it causes a lot of pain to themselves and the people around them."
*Names have been changed to protect the identity of 'Robert', who is still undergoing treatment.