Change HIPAA for Better Care

Nancy Sharby profileNancy Sharby

This is the second week of our series discussing HIPAA regulations with regards to mental health care. In this post, we provide a family perspective.

Good and Bad Experience with HIPAA
As a mother, I have had positive and negative experiences with HIPAA, with an example for each.

The negative event happened when my adult son was hospitalized while I was out of town. I knew he was in that particular hospital because that is where the ER told me they were sending him. His doctor, who had permission to talk with me, was the one to tell me which ER he was in. I called the hospital where I knew he was and tried to tell hospital staff about his medications. The staff person kept insisting that they could not confirm or deny that my son was at the hospital, and they refused to hear what I was telling them about his meds. I knew he was there and didn’t need them to confirm it. What I really needed them to do was to take the information about his medications. They would have it to use if he was there, and they could throw it out if he wasn’t.

The person’s stubborn refusal to take this information didn’t help my son, because they did not know his current medications or history and could not give him what he needed. It didn’t help the hospital, because they were less equipped to treat my son effectively, and perhaps prolonged his stay. And it sure didn’t help me, as my fear about his safety steadily increased. The following day, I was able to speak with a nurse manager. She agreed that the staff person should have taken the information, and was going to inform the staff about the proper procedures.

The positive experience happened at a different hospital. When I called, I did not know where he was, but knew he had been taken to that ER and had been on their unit many times. The nurse who took the call knew me and within my hearing, the nurse asked my son if he could confirm that he was there. My son said, “Tell her I said you can’t tell her that I’m here.” The nurse repeated those words verbatim to me. I told the nurse to tell my son that I would wait to visit until I was invited. This information was fine with me: I knew he was safe and under professional care.

What Needs to Change
There are a few changes that would make a difference for quality of treatment and for peace of mind.

1. Don’t protect location information

Informing a family member that a loved one is in the hospital should not be treated as releasing private medical information. Say, for example, that a person has a heart attack, stroke, or seizure and is not capable of giving consent to communicate. The hospital wouldn’t hesitate to call the family and tell them where the person is. But when a person is psychotic, even if they are admitted against their will, the hospital won’t notify the family. We (medical professionals) tell families things all the time; why does this need to be different?

To me, location is not the same as diagnosis or treatment. But a simple message from a provider—‘your loved one is here at this hospital and I am the one taking care of them’—would give great peace of mind to family members, even if there’s a follow-up statement that the loved one does not want them to visit or to receive any further information.

2. Encourage communication with family members

It’s important to have family members involved in treatment: we are often able to provide perspectives, observations, information, and insights that the patient cannot or will not provide. Let’s train mental health professionals to ask their patients, when stable, to give permission for them to communicate with family members. Even if permission to share information is not granted, patients can be assured, and practitioners should know, that health professionals can say to family members, “I’m happy to hear your point of view, but I can’t share confidential information.”

3. Recognize that people experiencing psychosis lack capacity

Finally, the system has to admit that psychosis results in diminished capacity for making medical decisions. A person with advanced Alzheimer’s disease is considered to be unable to make medical decisions. We should recognize that people are unable to make rational decisions when they have a mood disorder that is affecting their cognitive functioning. It doesn’t have to be so complicated.

Advance Directives Help

Ideally, every person with bipolar disorder or depression would be encouraged by their treaters to prepare an advance directive as part of their treatment plan. It doesn’t have to be fancy, just enough to identify what should happen and who should be involved. Even just identifying who is the preferred treater and who in the family should be notified would be a great help. At the very least the doctor would let the family member know their loved one is safe and could collect information about the person’s history that’s important to know.

Very often, family members can be assets in treatment. We can provide history, perspective, and loving support. Even a flawed family deserves to know that their loved one is safe. Mental health providers might be limited by the current laws, but this can and should be changed.

Your Turn

The HIPAA Privacy Rule does make allowance for when a patient is unable to authorize disclosure due to incapacity.

  • What do you think should be the criteria for defining incapacity?
  • Outside of incapacity, what are other circumstances that should allow for the overriding of patient privacy protections as outlined in HIPAA?

Nancy Sharby is a health professional who lives in the Boston area, and is a member of the Families for Depression Awareness Advisory Board. Nancy shares this perspective as the mother of adult children with bipolar disorder, who has experience with emergency room and inpatient treatment at hospitals.


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14 comments
trudy277
trudy277

The question you recently posed is a toughie from multiple perspectives. Where is the focus of privacy protection? The patient? The patient's family? The health care system? The community? So far, the present law loses the individual patient in the shuffle. 


If balance among all these factors is needed, then how would wording of the HIPAA reform contribute to & sustain balance among all stakeholders?  Frankly, I don't know enough about HIPAA from multiple perspectives, to give a specific answer on reform. So, I'd prefer to defer any comments until after training on advocacy. Thanks for asking, though.
Happy 4th, everybody! I too am grateful for the freedom of the individual in this country to express our opinion and advocate for peers.
Blessings,Trudy Lapin 

boudiceatx
boudiceatx

I disagree with the blanket statement that people who are psychotic lack capacity.  Again, this assumes that psychosis affects every single thought a person has.  This isn't even close to being true.  My baseline while well is to care very much about my civil liberties and have very definite opinions about medications.  For example, I would never want to take Zyprexa because it causes morbid obesity, diabetes, and other metabolic toxicities.  In addition, I have no respect for Eli Lilly hiding the data on diabetes from physicians and the public.  These strong feelings did not just magically disappear or change when I became psychotic.  My feelings about particular medications and concern over my rights remained intact. 


There is a tendency to assume that if a patient doesn't want what the parents want, then the patient must not have capacity to make decisions because surely they would do what the parents thought best.  So very wrong.  We're not our parents.  We are individuals.  If we have capacity to make decisions (as determined by the physician) then our wishes should be respected.

Families for Depression Awareness
Families for Depression Awareness

GI Jackie - it's definitely going to take a lot of work, and we're not sure if there is one appropriate resource. The best place to start is by contacting your local government to report these issues.

GI Jackie
GI Jackie

My HIPPA rights have recently been violated by Humana and the VA... Please send me the most appropriate resources to report this and make change!

mimscfisher
mimscfisher

part of the difficulty with people being informed when someone is in the hospital, is that occasionally you have an abusive spouse who is hunting down some one. They still may be legally married but they should not know where the other person is. The other thing is that anyone can say that they are related to someone when they are not. On the one hand I know if I were looking for someone I would want to be able to know that they were in fact in the hospital. But there are too many odd circumstances that are truly life threatening that make that difficult. I'm really not sure how you can resolve that. I would love to see it happen though.

StephenBonin
StephenBonin

Welcome mimscfisher! Interesting reading your post immediately after responding to Stacy's! You've just helped me post my briefest ever! Good day!

StacyK
StacyK

Thank you mimscfisher for sharing your valuable thoughts. It sounds like you and I agree on the utmost importance of protecting patients. I think that there has to be a way to alert families and/or loved ones when a patient is inpatient. It's just a matter of figuring out how to. I'm so glad you commented. If only we had more people willing to step outside of their comfort zones...thank you mimscfisher

StephenBonin
StephenBonin

Welcome, Kate! Each person can offer fascinating, thought-provoking, fresh insights. Thinking about #1, I recognize the tension as medical professionals try to abide by codes to regulate safety and privacy of the patient. Yesterday I interviewed Tom, psychologist who treated me five years. Treating patients for about 40 years in this area, he knows the change brought on by HIPPIA. From his standpoint, the patient giving permission for transfer of records, or, inpatient, giving permission for family members to be on the approved list of callers / visitors/ "in the know"  is good. The medical professional must handle more paperwork; however, it is worth it. "Scary" is the word he used of penalties for medical professionals who disregard HIPPA rules. The criteria for defining "incapacitated" should be, as I wrote a few days ago, psychotic. Also, for me having gone inpatient severely raging at family, the truth is these family love and care for me. I have--in 2009, 2011, and 2013--actually called the regional crisis line for the Dallas hospitals and the hospital itself in Waco to get myself admitted. I think this writer's experience with the person on the other end erecting a huge boulder is ridiculous. I know there are cases in which family and patient are not on good terms. However, think of the parents of the man who caused the California tragedy two weeks ago. They said they are living "hell on earth." I have, sadly, wasted too much energy resenting my parents. That is over now, with the recent, necessary reconciliation occurring last week.

StacyK
StacyK

Stephen, I'm so glad to hear about your recent reconciliation with your parents. It sounds like they care about you deeply. I imagine that they may become an important part of your support system. I know that my parents are sure a part of mine, and I hope that I'm a healthy part of my daughter's support system as well.

I like how you addressed both sides of our mental healthcare system, the healthcare providers and patients and their families. Your interview with Tom provides such important insight into the healthcare provider side of providing care such as his belief that patient permission in regard to transfer of records and an approved list of callers is "good." To me that's further evidence as to the importance of family involvement, if appropriate.

Thanks Stephen!

Stacy

StacyK
StacyK

Thank you Nancy for sharing your story and ideas! I really like your idea pertaining to advanced directives. As caregivers of adult children living with mental illness we need as much support and help as possible to properly care for our loved ones. If advanced directives and such were addressed and collected as part of the treatment plan that would put into place vital information that we need and often don't have in times of crisis. In fact, I imagine that many parents are not even aware of the importance of tools such as advanced directives.

In addition, I think that we also need to educate the families, or caregivers, about such helpful and important tools. Too often we learn after the fact that there was something, like an advanced directive, that would have eased our experience and our loved one's experience in time of need.

I too have had good and bad experiences in regard to the mental health care of my loved one. I actually wrote about one of the worst experiences I've had in getting information that would have helped me when our family was coping with the instability of our loved one. The article is titled "To the Callee…A Conversation about Suicide: National Suicide Prevention Week," and it can be found here: http://stacysflutterings.wordpress.com/2012/09/10/to-the-callee-a-conversation-about-suicide-national-suicide-prevention-week/. I'm incredulous that families in crisis are oftentimes met with blatant disregard. I tend to believe that a big part of the problem is that there is a lack of authentic empathy. Until something catastrophic rocks a persons world we usually don't give much thought to another's persons situation. Why would we? We are busy living our own lives. I've been trying to figure out how we can reverse this. I have some ideas, but it would be interesting to hear other perspectives. Maybe if we developed a deeper level of empathy we would be able to create a better mental health care system and we'd provide truly genuine, caring and effective services to those in need.

In response to the question, "What do you think should be the criteria for defining incapacity?" I don't know that we can come up with a cookie cutter method due to the complexity and uniqueness of each person. I do believe that families should be invited to the table, so to speak, when it comes to the mental health care of a patient. However, with that brings additional concerns and challenges. What if emotional or physical abuse are a part of the picture? Are we inviting trouble if we call the family or the caregiver, spouse etc., and state the location of the patients whereabouts? I believe that as we figure out how to create a better health system we have to remember that we must protect and keep safe our patients. That to me is the most crucial element.

I think that to determine incapacity the family should be allowed to a part of the determination process, if deemed safe and appropriate for the patient. We create individualized education plans (IEP's) for students which bring the parents and educators together to create a plan for student academic goals and objectives. I think that we should create individualized mental health plans for patients and bring together families and healthcare professionals in an effort to create a plan that meets the unique needs and desires of the patient. During the process the topic of incapacity and what it means could be addressed and determined by the individualized mental health team which would include the family. This is just a thought of course. What do you think?

StephenBonin
StephenBonin

Thank you, Stacy. Your link to your article caused a jolt, which I believe is positive as I grow in advocacy education. The proportion of completed suicides to attempts--36,000 to 1 milliion--comforted me, in that attempts are significantly distanced from completions.

Stacy, your experience hearing the callee's outlandish remark fuels my urgency as well. I will fight. This national-level training from January until now--and continuing--has caused consistent picked-up steam each day. I may even have my business card ready next week, an idea born about six weeks ago. Also, my peer, your pondering about the abusive family members as threats to progress causes me to think about a keen detective working with the medical team. This keen detective would be assigned the responsibility of identifying destructive tendencies in a family member who is inerested in participating on the family wellness team. This detective on the medical team would even be ready to go so far as to cancel all family members' participation and plow forward with the patient to find close people who genuinely care. Finally, Stacy, the analogy to IEP is stellar. I definitely want to explore this subject with peers in Washington, D.C.

StacyK
StacyK

Stephen,

First, I'm so glad that you liked my idea of creating a mental health team, including the patient, that would be responsible for creating an individualized mental health plan (IMHP) similar to an IEP or individualized education plan (IEP). To me an IMHP could better meet the needs of our mental health patients in creating a plan that meets the unique needs of each individual, and key to the plan is involvement of the family if appropriate.

Second, I also really like your idea of a "detective" that would be responsible for helping to assure that those family members invited to join the team, by the patient, would be suitable to be a part of the patient's mental health plan. Your idea, to create a "detective," might possibly help meet the need to have unbiased information provided pertaining to the family. I understand that the more we come up with ideas the more there is to work out logistically, ethically and morally speaking. However, it's a great starting place. I can actually visualize the IMHP at work working to help the patient find mental health wellness. Yet another element to creating an IMHP is that the family could help hold the patient or loved one accountable for their actions, or non actions if you will, which would provide a much deeper level of support. Our ideas also create new jobs. The positive ripple affect infinitely goes on...

Again, these are just thoughts, but I think they are doable. Let's take our ideas to Washington D.C. If there is anyone else reading this you are welcome to join in the conversation and help us get moving. We don't have time to spare.

kimgallen
kimgallen

I do find it critical to come up with policies and procedures that center around non routine disclosures. In these cases, we would limit the amount of information we disclose to the minimum necessary, while still being bound to limitations regarding protected health information. We do this in other areas, such as what we do for purposes of adjudicating claims and health plan quality of care reviews. It is not uncommon to grant those requests. I think we  should look at what is "reasonably necessary" to accomplish an intended purpose, just as we do when we get a request for a medical record. We do not release the entire record. We have policies that require us as covered entities to evaluate the necessity of the request and our policies and procedures define who needs to see the entire record. I think we need policies and procedures that identify circumstances under which disclosing or requesting information is reasonably necessary for particular purposes. I think that location is reasonable, unless it is specifically excluded under a legal and binding document. I absolutely agree that Advanced Directives help. I also would encourage all of us to carry Wellness Recovery Action Plans (WRAP) on us, that define exactly what is and is not to take place when we are not well. 

StephenBonin
StephenBonin

@kimgallen Kim's statement of  carrying a WRAP and making an Advanced Directive resonate with me. Also, I notice her repetition of the word "reasonable." Before reading today's contributor, I Googled, "What motivated the HIPPA?" and found an easy-to-read document addressed to agencies that would be instituting HIPPA. The document emphasizes positive attitude priority of the staff, not "Oh no!, this is going to be a  pain." Our government was established with checks and balances; that's why we have appeals procedures. I believe Kiim's use of the word "reasonable" is on target! We need HIPPA, yes. Have we had any court cases yet by family members of persons with mental illness? I want to explore that question. In conversation with my former psychologist Tom, and my current psychologist Lennard, I know the bottom line is HIPPA is good. Nevertheless, we can always improve good.

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