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Julia Slutsman, Nancy Kass, John McGready, and Matthew Wynia Health Information, The HIPAA Privacy Rule, And Health Care: What Do Physicians Think? Health Affairs, May/June 2005; 24(3): 832-842. [Abstract] [Full Text] [PDF] [Reprints & Permissions]

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HIPAA and Family Caregivers: When Information Is Withheld

Carol Levine   ( 2 June 2005 )

HIPAA and Family Caregivers: When Information Is Withheld 2 June 2005
Carol Levine, Director, Families & Health Care Project United Hospital Fund, New York City Send comment to journal: Re: HIPAA and Family Caregivers: When Information Is Withheld clevine{at}uhfnyc.org Carol Levine	According to the 2003 survey of physician attitudes about health privacy reported in this article, doctors had generally negative views about the HIPAA rule. Two years later, while implementation went more smoothly than expected, there is one area in which compliance has been overzealous. Health care providers at all levels and in all settings all too often deny critically needed information to America’s 27 million family caregivers. These are the invisible and unacknowledged people who provide essential unpaid care to elderly, ill, or disabled friends or relatives Rather than using the discretion and professional judgment the law clearly intended, institutions and providers find it easier, and more self-protective, to respond to caregivers’ legitimate inquiries by just saying no. The GAO report, cited by the authors as finding “no impediments to patient care,” did conclude that the rules about talking to family and patient advocates were often too inflexibly applied. Withhholding vital information inevitably has an impact on patient care. Here are a few, unfortunately not isolated, examples: *An elderly woman became increasingly disoriented and unable to care for herself at home. Her physician diagnosed her with Alzheimer’s but refused to tell her children the diagnosis because of HIPAA. As a result, the family lost an opportunity to make reasonable plans for her and was forced to deal with a crisis. *A daughter tried to sort out her father’s confusing insurance claims after he was hospitalized with a stroke. She was told that the company could only speak with him because they didn’t have a written authorization on file. *A caregiver seeking to ease her mother-in-law’s adjustment to life in a nursing home asked for general guidance about which residents might be welcoming companions for her at lunch. The nursing home said that discussing such issues would violate the law. For many family caregivers, HIPAA is a law of unintended consequences. Its frequent misapplication contravenes good geriatric care and substitutes rigid legalisms for reasonable professional judgment made in the patient’s best interest. In some instances it provides a convenient rationale for keeping so-called emotional and troublesome family caregivers at arm’s length. Privacy and open communication with health care providers are not mutually exclusive. Both are equally important and can--and indeed, must--coexist in the true spirit of the law. Family caregivers face daunting challenges. They need information and support, not a cold shoulder.