The Sunday March 6th Asbury Park Press ran an in-depth article about families of mentally ill patients and the Health Insurance Portability Accountability Act (HIPAA), which often forbid health care providers from sharing patient’s medical information without their consent.
Families of people with serious mental illness often help their loved ones make decisions and take care of them because their illness impairs their judgment and they often don’t recognize that they’re sick and need help.
Many health care providers don’t understand what HIPAA laws allow them to say to families and often shut families out, even in circumstances where providers are legally allowed to share information with them. Some doctors think they are protecting the privacy rights of their patients, others simply don’t want to talk to families. Sometimes it is because of differing views others because they simply can’t be bothered to call the families back.
Doing so can sometimes lead to disastrous results. The article pointed to several examples whereby some families lost their loved ones to death by suicide.
Many people in the mental health community agree there’s a problem, but disagree about how to go about fixing it. There is a bill proposed by Tim Murphy, a child psychologist and representative, which would change HIPAA itself. It would create an exception to the privacy rule in cases which the health of people with serious mental illness would suffer if families were not involved in their care.
Most who oppose Tim Murphy’s bill argue that changing the HIPAA law would cause those living with mental illness to not seek treatment because the change would not guarantee the right to confidentiality.
Advocates for domestic violence victims cite abusers can gain access to a spouses mental health records. Even though Tim Murphy’s bill does states that health information may not be shared with someone who has a “documented history of abuse”, advocates point out that many abusers don’t have a documented criminal record.
Besides shutting families out, health care providers are also prevented from sharing information with each. This can lead to problems with treatment. For example, maybe a patient’s psychiatrist knows they do better with an injectable drug, but an ER doctor not knowing that history prescribes pills that the patient will not take, resulting in a relapse. This causes some in the medical field to believe that the profession needs to undergo a change so that doctors are encouraged to reach out to families of their patients with serious mental illness, rather than shun/vilify them.
While I see the need for family involvement, I do feel there are some things that need to stay private. I believe diagnoses, medication and side effects from medication are important for families to know. Sharing from a psychiatrist to a patient’s primary care physician is important as well. This is because certain medication might cause medical issues, such as diabetes.
I believe personal notes or therapy sessions must remain private and records kept safe. There are certain specific situations whereby if a person is a danger to self or others or their illness causes them to lack judgement making skills, a note should be made to contact a pre-determined family member. This should be on a case by case basis only and not a general rule of thumb.
Having family involvement is crucial to keeping loved ones living with mental illness safe and alive if they are not in a position to take care of themselves. So often time they are the ones who see to the day to day care of them.
Blog posts are written by Shore House members and staff.