How HIPAA Interferes with Caregiving for the Elderly

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Although it was not the intent of the law, the Health Insurance Portability and Accountability Act of 1996 (HIPAA) has been interpreted and misapplied as a barrier to communication with the very people who have a deep and often lifelong relationship with elderly  patients  and who will be responsible for managing or providing care in the community. When a family member asks almost any question relating to a family member’s care and treatment, this is what they too often are likely to hear: “I can’t tell you because of HIPAA.”  End of conversation. 

This is a misinterpretation of HIPAA.  Here is what the Health and Human Services’ Office of Civil Rights, responsible for monitoring HIPAA, says: “The HIPAA Privacy Rule at 45 CFR 164.510(b) specifically permits covered entities to share information that is directly relevant to the involvement of a spouse, family members, friends, or other persons identified by a patient, in the patient’s care or payment for health care.”  The only exception is if the patient objects.

There are an estimated 40-50 million family caregivers in the U.S. The unpaid labor of these relatives, partners, and friends is estimated to be worth $475 billion a year. They provide 80–90% of the long-term care in the community for an aging population with multiple chronic conditions, including Alzheimer’s disease and other dementias.  Without this essential family support, these individuals would require nursing home care, which is not what they or their families want, and certainly would add enormous cost to an already strained system. 

Health care currently focuses on encouraging patients and families to become more “engaged,” “activated,” and “self-reliant” in care.  These efforts, as well as HIPAA itself, assume a competent adult patient, able to absorb complicated information and act on it. But many of the patients most at risk for poor outcomes and hospital readmissions—older adults with multiple chronic conditions, including cognitive deficits—are not able to become actively engaged.

Recently Dr. Harlan Krumholz described a “post-hospital syndrome,” a condition family carergivers know well.  Even in ordinarily healthy and competent people, the experience of hospitalization itself, particularly a stay in an ICU, can create temporary lapses in cognitive function and independence.  For elderly people who are already frail or confused, the problem is even worse.   Dr. Peter Provonost of Johns Hopkins University says, “Patients in this state of mind are in no condition to understand discharge instructions such as how to keep wounds clean or when to take medications. It’s easy to see how the patient can quickly decline.”  Yet hospital staff continue to say to a family caregiver, “I explained everything to your mother. Just ask her what to do.”

In 2012 the United Hospital Fund and the AARP Public Policy Institute collaborated on a national survey of family caregivers to determine the extent of the medical/nursing tasks they perform, how they learn to do these tasks, and who helps them. We found that nearly half (46%) of family caregivers were doing one or more medical/nursing tasks (defined as medication management of various kinds, wound care, monitoring medical equipment, or similarly demanding tasks), in addition to the personal care and household chores more usually associated with family caregiving. When asked who taught them, these caregivers typically responded, “I learned on my own.” In effect, they are care managers without portfolio.

When I talk to groups of caregivers and professionals, I often ask if anyone has had an experience with HIPAA. Invariably many hands are raised, and heads nod in agreement.  I particularly remember one family caregiver, a big, burly detective who takes care of his father.  He said, “It’s my job to get information from people who don’t want to talk to me.  But when I come to the hospital and ask about my dad, I can’t get anyone to tell me what’s going on.”  If he couldn’t jump over the HIPAA barrier, what chance do the rest of us, lacking his confidence and skills of persuasion, have?

It was with some chagrin that I recently found myself on the wrong side of the privacy law.  My sister, who was in severe abdominal pain, asked me to accompany her to the Emergency Room of a major New York City medical center.  We waited and waited and finally a triage nurse told my sister to follow her into a room.  I got up to join her, but the nurse stood in my way, saying, “You can’t come with her.  It’s a HIPAA rule.”  My sister said, “But I want her with me.” No way. I should have insisted but I had learned from my long experience with my late husband that a family member who raises questions or challenges a nurse quickly gets labeled as a pest or an even nastier epithet, and I did not want to jeopardize my sister’s care.  (She recovered and is fine, despite two very unpleasant days on a gurney in the ER corridor.) 

Fears that an individual doctor or nurse can be sued for disclosing information are common but exaggerated. An individual who believes that protected health information has been inappropriately disclosed has no legal recourse under HIPAA other than a complaint to the Office of Civil Rights.  Although HIPAA creates a right to privacy, there is no right to sue a doctor, nurse, or hospital.  The individual can file a lawsuit under state law alleging violation of privacy, and would bear the burden of proving harm, but HIPAA would not be a factor.  Some of the HIPAA violations that have resulted in staff being fired relate to theft of social security numbers or credit card numbers, which were crimes before HIPAA.  Other violations have involved staff checking out their neighbors or ex-spouses information or a celebrity’s data.  These are bad enough but they should not be confused with a daughter’s justifiable desire to know what kind of follow-up care her mother will need, especially if she is going to be the one expected to provide it.

While fears of being sued or fined are certainly prevalent, in my opinion the overriding reason HIPAA is used to cut off communication is that it serves as a convenient excuse not to talk to families or listen to what they know about the patient.  If families are kept at arm’s length, the easier it is to avoid difficult conversations about prognosis or treatment options.  With some exceptions, health care professionals are not well trained in or skilled at communicating with lay people—patients first of all but even more so their families. Families are welcomed in marketing material, not so much in hospital rooms.

Part of the reason HIPAA has been so misunderstood and misused is that it fits neatly into an already well established pattern of keeping family caregivers at arm’s length.  Families ask questions.  They want answers.  If they are doing their job, they are good advocates for their family members.   A law that limits sharing information offers a convenient but misguided rationale for withholding information.

Carol Levine, 78, is director of the Families and Health Care Project of the United Hospital Fund. She was awarded a MacArthur Foundation Fellowship in 1993 for her work in AIDS policy and ethics. This post is adapted from her testimony to the U.S. House of Representatives Committee on Energy and Commerce, Subcommittee on Oversight and Investigations on April 26, 2013. A video of the April 26 hearing can be seen here.

7 Responses to “How HIPAA Interferes with Caregiving for the Elderly”

  1. Kathy

    How do u talk to a dr when the elderly objects because they probably have early stage of dementia but knows they don’t want to be labeled with dementia? So my grandmother I know has early stage of dementia but she still has it together enough to keep it from her dr and refuses to let her family help her because she thinks her family is out together. ( which is just her paranoid) so how can we help if we can’t get her help. She is 83 and still lives alone and drives but she has decided she can’t drive. I’m lost I’ve tried to help and than she gets real agitated and turns on all of us. I’m so lost not knowing how I can help her, does anyone have any answers?

    • Jim Sabin

      Dear Kathy
      The problem you describe isn’t, alas, rare. Clearly the best outcome would be for your grandmother to work with her family and her doctor to handle the changes she is experiencing in the best possible way. But from what you say, suspicion of her family’s motives and fear of acknowledging the encroachment of dementia are preventing that.
      In my own practice I often heard from family members about situations like your grandmother’s. Physicians have to decide how to relate to the family. For a patient whose capacities are so diminished that they’re not able to represent themselves adequately, communicating with caretakers is a must. But it sounds as if your grandmother may not quite be in that situation yet. If her doctor is hesitant to communicate with the family “behind her back,” a letter to her/him describing your worries could be useful. And sometimes there is a family member or friend who the elderly person still trusts. When that’s the case, that person can sometimes help steer people in your grandmother’s situation into more constructive actions.
      Thank you for bringing up these important issues! Good luck in helping your grandmother deal with the changes she is going through!

  2. Leena

    Take this a step further…82 year old w hx of recent fall/head injury says the CIA is following and people are listening, follwed by a hospitalization for an infection..Pt suddenly does not want any contact w husband or only child and is discharged to a Taxi. She then is reported as a “frightened elderly woman w possible dementia” wandering around a seedy motel at 2am asking for rides to the airport. Later traced to a hotel in another town where she refuses further contact. Police say she is impaired but not an immediate danger so they can do nothing even though she says people are after her and her child and husband are on that list. Despite doctors suspecting a slow brain bleed, she will not keep her appointments and there she sits, with no change of clothing, running up a 300 dollar a day hotel bill, not taking her meds, and perhaps bleeding into her brain, and nothing can be done. HIPPA was cited as a reason the discharging hospital could not or would not discuss her condition with anyone, and that is what caused them not to be aware that this was a sudden personality shift so she was just let out to a taxi..never to be seen by family again.

  3. Pam

    What is a biological child to do when demented elderly Father is persuaded by crazy elderly Stepmother to withhold important medical information? Elderly Father experiences memory lapses, personality changes and motion disorder resulting in frequent falls. Elderly Stepmother refuses to tell biological children of Father what is wrong with him, citing HIPPA, and directs doctor to maintain confidentiality. Father tells his biological children that he would give them a HIPPA release, but second wife (Stepmother) won’t like it. Biological children can see that their Father is not being taken care of (wheelchair bound but only 3 hours per week of in-home nursing care provided; failure to get walker in a timely manner resulting in more falls with stitches and loss of teeth; left in wheelchair in living room overnight on occasion; not being taken to the bathroom just left in a diaper all day, etc.) The biological children’s only recourse is to report their Stepmother’s neglect to the Depart of Elderly Affairs or file civil action for guardianship. Do either one and there goes the “family”.

  4. Grace

    What happens when is a child with autism and nonverbal? Can therapy (speech, occupational therapy) deny you as a parent access? Citing HIPPA law? You are as a parent the caregiver and almost translator to that NON-Verbal child.
    Im suffering this situation with my 3 year old.

  5. Barb

    “I was told as a sibling out of state that I had no right to inquire about anything concerning my father by the Head Nurse on his wing AT ALL. I was told by that Head nurse that by law there were only two people who could inquire about his health, the guardian and the ‘alternate’, this was AFTER they had already informed me that his fracture was a non-displacement, and that there was confusion by the nurses after ER on how to treat my Dad as PT or immobile, this was told to me by the nurses themselves on staff. The siblings who are in charge of his health are not communicating with me about his health, but did tell me that he wants to die and there is nothing I can do about it. In fact, the indication was that they are willing to let him die because the “experts” (Dr’s and RN’s on staff) know what is best for him. In my Dad’s religion, suicide and murder are absolute sins. My siblings in charge do not ask questions they simply go by what they are told, this is what they have told me, they rely on the “experts”. On multiple occasions in the past there was neglect of my mom and Dad in both hospital and nursing over the past 9 years but Dad was still coherent so I could work through him to demand the care they needed and was not being provided. So, to my Dad who I spoke with weekly up till 6 days ago suddenly broke his hip in a fall, and they say that there is nothing they can do he has melanoma Stage IV and they are keeping him drugged, he is confused when awake and being kept immobile. But I’m afraid when the nurses moved him perhaps more damage was done, he seems to be in excessive pain. The Nursing Home is understaffed, stressed out, lost their contract, not under contract and working long hours, the Dr. on staff at the nursing home did not follow up on the reports from ER (which the nurses on staff were concerned about and the Dr on staff did not respond to their calls on their questions (said the nurse on the floor) so they moved him when he should have been non-weight bearing and immobile) and that Dr. on staff didn’t even see him from the Saturday he fell until Tuesday – four days (96 hours)- and the first 48-72 hours are critical with a hip break in elderly. Mortality rate is high in hip breakages with the best treatment. How can I be assured my dad is receiving the best care possible? My hands are tied. There are many complications with hip breaks, blood clots, bed sores, infections and so much else. It seems that my siblings are resigned and intimidated into trusting in an overwhelmed staff and a Dr. who is seemingly slow to respond to critical situations. I just feel like there is no recourse to care about the helpless in this country anymore and this HIPPA law ties my hands to be of any help to my critically ill parent. It compounds the grief of losing my last parent.”