Today’s guest post is by Gary Simmons, a Senior Care Advisor for A Hand to Hold in Atlanta, posted with his permission.

There are so many issues to navigate, and there is so much to learn when you are taking care of an aging or disabled parent or spouse. When you add barriers such as understanding new laws, it can be easy to feel overwhelmed. For example:

Suppose your mother is in the hospital, and when you ask a specific question about her treatment, the nurse or the doctor says, “I’m sorry I can’t tell you that because of HIPAA.”

What is HIPAA? Why is it important that you, as a family caregiver, know your mother’s medical information? She’s your mother, why can’t they just answer a few questions? What steps can you take to get the information you need?

What Is HIPAA?

HIPAA stands for the Health Insurance Portability and Accountability Act. It is a federal law.  The intent of the law is to protect personal medical information. It pertains to any personal medical information collected about a patient in a hospital, a doctor’s office and any other place that provides health care. It applies to information that is on paper or in an electronic health record.

The law allows people who are directly involved in the care of a patient or payment for services to see this information. That means employers, marketers, fundraisers and other people who want this information cannot have it. The law is also very specific about disclosures to family and friends.

Privacy and ConfidentialityScreen Shot 2017-09-18 at 8.42.53 AM.png

HIPAA is based on two very important concepts in patient care: the first is privacy and the second is confidentiality.

Privacy covers the patient’s right to limit who knows details about their medical condition. It also considers a patient’s right for caregivers to have conversations about their medical care in places where other people cannot overhear what they are talking about.

Confidentiality has to do with a health care professional’s obligation to not disclose a patient’s health information without the patient’s consent unless it is required by law or considered necessary for clinical reasons.

Why do Family Caregivers Need Medical Information?

If you are a family caregiver, you need medical information so you can provide the best care for your spouse, mother, father, or other elderly relative.

As a caregiver, you can help communicate with the doctors, you know the medications the doctor has ordered, and what side effects to look for, you also know any dietary restrictions your relative may have.

Family caregivers may also speak with the doctor about the treatment plan, how the illness is progressing, and what the next steps are.

For a close relative or caregiver, knowing these steps can be very helpful for a patient who is feeling sick and may be unable to think clearly and understand the situation thoroughly.

Does the Patient Have to Sign Any Papers to Give Permission?

HIPPA does not require written consent forms before doctors discuss medical information with family caregivers. Some hospitals or other health care facilities, however, may require the patient to sign a written consent form.

What if I Have a Problem Getting Medical Information?

The next time your family member is in the hospital or Emergency Room, tell the doctor or nurse you are the patient’s caregiver. If they do not share information with you, ask to talk with the social worker, patient representative, or privacy officer. It is also important for you to remember that even if they do not share information with you, you have essential information you can share with them. Tell the doctor or nurse anything you can about your family member’s condition and health history.

Implied Consent

Family caregivers have implied consent when they accompany a patient to the emergency room, sit with a patient during a physician’s visit or are present in the hospital room when the patient’s condition is discussed with him/her, as long as the family member does not object. There is also a clause in the law that allows for information to be shared with the care recipient and whomever else is present with him/her when in a hospital room that is not a private room. While it is expected that hospital personnel will make all reasonable attempts to provide privacy, sometimes that is not possible.

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Notice of Privacy Practices

When you begin care with a physician, a hospital, an outpatient service, or have home care, the patient or you, as the caregiver, will be given a Notice of Privacy Practices. It is important you understand them because they explain the patient’s rights.

What Happens When the Patient is Incapacitated?

If a patient is incapacitated and cannot give a doctor or a nurse verbal consent to disclose information to friends or relatives or others who may be involved in their care, the doctor or nurse must use his or her professional judgment as to whether he or she will disclose medical information to a caregiver

At times, a caregiver will be taking care of a patient with dementia. Families who have a relative with dementia really need to understand what is happening to their loved one. If their loved one is being taken care of by home care services their burden may be a little easier, but it is difficult nonetheless. If a patient has dementia that hinders care, it is critical from the beginning to make sure that if you are the caregiver, everyone is clear on how to reach you.

In difficult situations, HIPAA allows for professional judgment by clinicians, and if it is in the patient’s best interest, the disclosure can be made.


There are many more aspects to the HIPAA law, but the ones discussed are the important ones that affect you as a caregiver. If you would like to do more reading on the law, you can find information at the U.S. Department of Health & Human Services Site.

The law is not perfect; many complain it has caused the flow of information to be slower than ever. Many healthcare providers also criticize the law for being too complex.


Gary Simmons, Senior Care Advisor, works for “A Hand to Hold”, Atlanta’s leading provider of in home care services and in home care assistance.


Additional Resources:

Information Release to Patient Families and Caregivers: What Does HITECH/HIPAA Actually Say?

Resources for Family Caregivers of Older Adults

Your Rights Under HIPAA

Understanding the HIPAA Law

HIPAA Privacy Laws

HIPAA Security Rule Overview (2013 Update)

HIPAA Law and the Privacy Rule to Protect your Medical Information

What is Protected Health Information?

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