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 Inaccurate stereotypes based on outdated information or worse, lack of interest in becoming educated about mental health conditions can lead to disruptive and unsupportive behavior.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.

YOUR TURN

  • 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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10 comments
boudiceatx
boudiceatx

While it is true that HIPAA doesn't prohibit families from giving information to the physician (i.e. writing a letter), this can backfire.  NAMI taught my parents they could go behind my back and send a letter to my psychiatrist expressing their concerns. My parents did not tell me they were going to do this so I was blindsided when my psychiatrist mentioned that they had contacted him.  Neither my parents nor my psychiatrist would tell me what my parents wrote, only stating "they're concerned."  All this did was cause even more distance between my parents and myself.  I switched psychiatrists and did not tell my parents the name of the new psychiatrist to prevent this from happening again.  Parents don't always try to talk to their children before trying to inform the treatment staff of their concerns.  Handling things this way will ensure that the patient includes their parents even less in the treatment process.  Going behind your family member's back will not make the relationship stronger, but it sure can make things worse.

StephenBonin
StephenBonin

Yesterday evening my Mom prepared a special supper for me for Father's Day. While visiting, I learned family news. My brother Paul, three years younger, recently had his first scholarly book accepted for publication, and I have, as you know, experienced significant breakthrough in healing, despite mental anguish for both of us along the way. So I resolve that it's all been worth it.

The "it" is eight months of no weekly phone conversations, whereas we used to do so every Saturday morning. Paul or I would call around 10 a.m. If only he would have communicated to me that he couldn't be counted on anymore. . .

I noticed that my calls were more frequently going to voicemail, The coup de grace occurred about the end of October, '13, when he did not return my call that Saturday. Sunday morning I called back. He picked up and asked if we could talk later because he was writing. I was not empathetic toward his deadline. Surely he could keep focus while spending a few minutes with me. I hurled sarcasm.  He tried to recover, asking about my therapist Tom. During the time that my Father was dying, 9/11 to 6/12, he would come in from out of town; about three times he enjoyed having sessions with Tom and me.

Now, four months after Dad's death, I felt livid. l told him I wanted a peer relationship now, which would exclude mention of my medical team and treatments. He hung up. The next night I hurled my cell phone into the dumpster, thereby benefitting my serenity over the next seven months without one.

Paul and I are not back on that regular calling routine--and that is more fine than ever, because I love myself more than ever before. My medical team serves one purpose; family and friends, and pets, another.  All these purposes are dynamic.

player 09
player 09

The first involve of to treatment and recovery with family members begins when your released from a intake or outake evaluation. I was assistwed by by family after a intake 4 years ago with out the help from anyone until I made the committment with a very special ICM who made the most of our meetings meaningful and in the result family especially one of my brothers become my best freind and peer support, going to doctor's visits, taking me shopping for food, and really wanting me to get the help that was going to make me stronger and smart and recover in way that I didn't have to fear letting others know I had major bi-polar disorder and medication was needed to help me realize that all would insightfully, get me through the manic episodes that were beyond crisis. Today, my family and myself are on our own journeys and I' am am trying not to be  apart of thier world. 

Since I am  in most months without enough money to get by with and so are they. On other occassions most of time i heard nothing from them to do anything social at all or even family visits. Really not looking for their ignorance  and their non-returned calls to depress me any longer.  In many circumstances when family is united to be supported or really don't care at this point in time yes privacy from them is important because you are encouraged to find real compassion through other resources and not just family alone. I personally at this point found the realization I needed to get the help and the personal privacy of enacting with information none of their business. Truly, their responses are not meeting the needs I need to have more financial freedom. And the other circumstances are that many people look for personal inforamtion to surround themselves in very confidential information.

I have made it a personal investment to do my own speaking, my own connections, and my best to be able to communicate with my personal doctors. If at a time maybe 50 years from now I'll still be speaking my mind and making my own decisions in this world. Precautions over death to be decided by someone else in like writing a note to the dead. Asking to be taking out of this world over the ignorance and selfness of caring for the diabled. I taking all precautions to being protected and supported through learning how life works. There also is a Advance directive that can be prepared so everyone knows what to do when those dreadful circumstances arrive. 

KateS
KateS

WRAP, 5 Wishes and Advanced Directive are all great topics to bring up at a visit with a provider.  I try to have a list of things to ask about during visits and these will be on mine for my next visit.  


Regarding family involvement, that seems particular to the dynamics of each family.  Some members feel that mental illness is a defect rather than a condition and it is not a topic that is welcomed to discuss.  I would rather keep it out of our sphere of discussion than have what I anticipate would be unsympathetic comments. 

StephenBonin
StephenBonin

#1: A. When Lennard became my counselor 7 weeks ago, he asked me questions to determine objectives and goals. The printout looked so organized and underscored aspects of my diagnoses that I wanted family to still be aware of. Unlike in the past, I just took time to give a copy to Mom, trusting that she will share with my brothers and others in close connection. B. Close people in my life have been kept abreast of my treatment throughout the years; however, currently,  C. participating in this mental health advocacy training is the news that replaces news of my treatment. Truly, since this training began in January, I have been growing, healing, breaking through. Truly, I am in a very good place of strength and hope. I am happy to talk with people every day--online and in person.  D. To touch on the most recent inpatient, August, 2013, hospitalization for four nights, my mother and I argued briefly on the phone. She, for the second time in a row, thought I needed to stay in longer. I was adamant about leaving. I did share with my three brothers and mother about a new medication added in that hospitalization that I felt positive about. Other close people in my life, such as support group participants, learned of that as well.

#2: If the patient communicates to the medical team concern about information that would be better kept private, then the medical team could choose to honor it in their belief the request is, as Kim wrote a good word the other day, "reasonable" and logical.

#3:P After reading about WRAP and Five Wishes today, I am going to fill out those forms, along with Advanced Directive, and give to close ones.

careforyourmind
careforyourmind moderator

Thanks for your comment. CFYM wants to hear from both family members and individuals living with a mental health condition. Feel free to comment on the portion of the question that asks "how has your family involved you, in treatment and recovery"?  Also would like to know how family members support their loved ones advanced directives.

StacyK
StacyK

In response to the Balancing Family Rights to Know with Patient Rights to Privacy article, I just want to say thank you to the contributors who graciously shared their personal insight. The post is extremely valuable to me as a family member. Sometimes, I need to be reminded that my loved one's journey, as well as mine, are two separate journeys. What I take away tonight, after reading this post, is that ultimately, and as painful as it may feel at times, we must let our loved ones live their lives. Who am I to say what is right or wrong in regard to my loved one's choices. I know that when I make a decision, whether right or wrong, it's mine to make and from that decision are opportunities for growth. Why would I ever want to stunt my loved one from growth? I wouldn't want that for myself. In fact, I'd be downright upset if someone kept me from growing in any aspect of my life. Our loved ones are no different, regardless of physical or mental illness. I liked that WRAP was talked about. I plan on visiting the WRAP website in an effort to increase my learning. Also, I had not ever heard of 5 wishes before tonight's post. I'll be visiting that website as well. Thank you again. I'll be adding this helpful article to my resource list. In regard to the questions asked tonight, I'll be refraining from answering them since they pertain specifically to the patient. I look forward to hearing others thoughts.

StephenBonin
StephenBonin

Player09, your pithy discussion of waves in the family and patient relationship easily bring me into reflection about waves in the dynamic in every patient's experience. I know the journey can be rough, because healing is needed in people on both sides. As a therapist said to me one time, "You are here in the counselor's office; members of your family are not. However, some of them need serious help also. Thanks for sharing.

StephenBonin
StephenBonin

Kate S's preference for keeping the topic of mental illness out of the sphere of discussion for families that hold degrees of lack of sympathy resonates with me because of a member of our support group who has mentioned with emotional pain in her tone her family's disbelief and disrespect. Thanks for sharing.

StephenBonin
StephenBonin

@StacyK I appreciate Stacy's gratitude for the contributors to Phyllis' interviews. Moreover, I feel the sadness of a loved one resigning to let go. Letting seems much more scary with mental illness. Then again, we know logically never to dwell on fear, for fear is False Evidence Appearing Real.

With DBSA, we focus on Hope! I enjoyed reading some person profiles in the SAMSHA site. Of the handful I read, I gathered positive connections between family and person with the symptoms. Thanks, Stacy!