Balancing Family Rights to Know with Patient Rights to Privacy

CounselingFamily members are an inescapable fact of life for most of us—good and bad. So how do peers navigate personal decisions about their own treatment options and living a life of recovery with their family members? Today we continue our series on HIPAA with peers sharing their thoughts on the role of family members vs the right to direct their own treatment and recovery.

Balancing Family Rights to Know with Patient Rights to Privacy
It can be difficult for family members, who often have the best interest of their loved ones at heart, to provide enough space for their loved one to accept their disorder, seek treatment and build a life of recovery based on personal choice. But when speaking with individuals living with a mood disorder, many state that this is exactly what needs to happen. While it can be tempting to place oneself in a position of “knowing what’s best,” loved ones may need to recognize that they are on their own separate journey with an unknown destination.

Creating space for recovery to take root
Contributors to today’s post stated that their journey to recovery, began with a personal acceptance of a need for help. Providing space for that journey to evolve is often at odds with a loved-ones desire for things to “just get back to normal”.

Choosing the course treatment takes may also require family members to keep a comfortable distance. For many people, making the step to embark on treatment is the apex for developing feelings of empowerment, embracing an attitude that they are capable of rebuilding their lives, and believing that they have some control over their own destiny.

Family dynamics as well as stigma can also play a role in making the decision to keep family members at bay. Inaccurate stereotypes based on outdated information or worse, lack of interest in becoming educated about mental health conditions can lead to disruptive and unsupportive behavior.

To quote SAMSHA, many peers tell their loved ones:
We are human beings and we can speak for ourselves. We have a voice and can learn to use it.

Supporting family members
An often expressed concern from family member is that they need to speak to their loved-one’s clinician because the loved one is not telling the truth. Although well-intended, these attitudes germinate and take root in a lack of trust and understanding that the road to recovery is one of personal self-discovery.

So what can a family member do when they believe that their input is vital? HIPAA does not stipulate that a family member is prohibited from reaching out. Family members can write a letter, send an email or leave a voice mail.

It is not uncommon for the desire to contact the provider to originate from a yearning to “speed up” the recovery process and get things “back to normal”.  Attending DBSA family support groups or family education programs from NAMI has helped many family members adjust to a “new” normal.

Ongoing communication
The peers contributing to this post, hold a common belief that family communication can mitigate the HIPAA debate. One person sent emails to his family telling them he was doing well and needed space to develop his recovery. If anything, he was a little put out that they respected his request too well. Another peer shared with her mother her personal WRAP®. It describes and outlines behaviors of a bipolar episode that would warrant an intervention from a family member. Yet, another peer interviewed for this post has a 5 Wishes document. This document is notarized, is on-file with her doctors and provides instructions for care in the event that she is incapacitated.

Studies have suggested that family involvement is important when recovering from a mental health episode and sustaining a life lived in wellness. Recognizing that recovery is a personal journey of self-growth can be difficult to accept when someone you love is hurting. It is a natural human instinct to want to help your loved one. As difficult as it might be, creating the space for a loved one to take that journey may result in open family communication that could make some of the controversial parts of the HIPAA discussion obsolete.


  • How do you involve your family, or how has your family involved you, in treatment and recovery?
  • Are their circumstances where privacy needs to be protected from family members?
  • What precautions have you taken to allow others to make treatment decisions for you should you be incapacitated?

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