HIPAA: Questions and answers for family caregivers


By Micha Shalev

Suppose your mother is a patient in the hospital or emergency room. You are her family caregiver and when you ask about her treatment, the doctor or nurse says, “I can’t tell you that because of HIPAA.”

That answer is wrong. But you need to know more. What is HIPAA? Why should you as a family caregiver need to know your mother’s medical information? And what can you do to get the information you need? Here are answers to these and other questions family caregivers ask about HIPAA.

What is HIPAA?

HIPAA (Health Insurance Portability and Accountability Act) is a federal law that protects personal medical information. The law allows only certain people to see this information. This means that employers or groups who want this information for their own use cannot have it.

Who are family caregivers?

A family caregiver is someone who takes care of a person who has a chronic or serious illness or disability. The caregiver can be a family member, friend, partner or someone else close to the patient. He or she does not need to live with the patient.

Why do family caregivers need medical Information?

Family caregivers need medical information so they can better manage and provide care for the loved one. For example, they need to know what medical problem the person is being treated for. They need to know the names of the medicines the doctor orders, why the doctor thinks the patient needs them and what side effects to look out for.

Who is allowed to see a patient’s medical information?

Doctors and other health care professionals can share medical information with family caregivers or others directly involved with a patient’s care. The only time this cannot happen is when the patient says he or she does not want this information shared with others.

Sometimes there is more than one family caregiver. If so, it is a good idea to choose only one person to talk with the patient’s doctor or medical team. This person can then share important information with health care professionals or other family caregivers who provide care. Doctors also share medical information with nurses, therapists and other health care professionals on the patient’s medical team. This is important for good care and is not affected by HIPAA.

Does the patient have to sign any papers?

Some hospitals or other health care facilities ask patients to sign written consent forms before doctors discuss medical information with family caregivers. This is not part of the HIPAA law, but may be part of the health care facility’s procedures.

What if I have a problem getting medical information?

Talk with the social worker, patient representative or privacy officer if you are the family caregiver and have trouble getting the patient’s medical information. The next time your family member is a patient in the hospital or emergency room, tell the doctor or nurse that you are the person’s family caregiver. The best care happens when the doctor or nurse then says, “Let’s talk about the treatment your family member needs and how we all can help.”

Ways to learn more about HIPAA: Department of Health and Human Services’ Office for Civil Rights website, www.hhs.gov/ocr/hipaa; Health Privacy Project website, www.healthprivacy.org.

Micha Shalev, MHA, is the owner of Dodge Park Rest Home and The Adult Day Club at Dodge Park located at 101 Randolph Road in Worcester. He can be reached at 508-853-8180 or by e-mail at m.shalev@dodgepark.com; view more information online at www.dodgepark.com. The facility is holding two free support group meetings a month for spouses and children of individuals with dementia and/or Alzheimer’s disease. Archives of articles from previous issues can be read at www.fiftyplusadvocate.com.