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Caregiver Rights

man holding up card offering information about caregiver advise record enable (CARE) Act AARP

I’m starting to take care of my dad, who has multiple health issues. When it comes to dealing with hospitals, doctors, paperwork and prescriptions, I’m not sure what I can and can’t do – and I get conflicting messages from different medical providers.

You want the best for your loved one, and hitting roadblocks in getting them care can be frustrating. Here is some information about what your rights are as a caregiver, and what steps you need to take to be a good health advocate on their behalf.

Hospitalization

Thirty-six states, the District of Columbia, Puerto Rico and the U.S. Virgin Islands have passed the Caregiver Advise, Record, Enable (CARE) Act, which requires hospitals to:

  • Record the name of the family caregiver on the medical record of your loved one.
  • Inform the family caregiver when their loved one is to be discharged.
  • Provide the family caregiver with education and instruction regarding the medical tasks they’ll need to perform for the patient at home.

Many states with this law have a downloadable card you can keep in your wallet as a reminder of your rights as a family caregiver helping your loved one in and out of the hospital.

HIPAA

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) was created to protect your personal health information. Some family caregivers run into problems getting information about their loved one’s health, treatment or financial payments, because health providers say HIPAA privacy rules prevent them from sharing it.

In reality, doctors can discuss a patient’s health status, treatment and payment arrangements with the patient’s family and friends. According to the U.S. Department of Health and Human Services, “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.”

If the patient is present or available before the disclosure, and is capable of making health care decisions, medical providers can discuss this information with family and friends if the patient agrees or if they “can reasonably infer, based on professional judgment, that the patient does not object” or if they determine that sharing the information will be in the best interests of the patient.

This also applies if your loved one is receiving assisted living or memory care services.

Legal Documentation

Having legal documentation that gives you the authority to make decisions on your loved one’s behalf is an important step for any caregiver.

  • A power of attorney for health care or mental health care designates who can make health care decisions on behalf of your loved one.
  • A living will lets family and physicians know what your loved one’s wishes are for medical treatment.
  • A financial power of attorney designates someone to make financial decisions on their behalf.
  • A digital power of attorney lets another person manage digital assets such as social media accounts, websites, email accounts, online access to banking, investments or credit cards.

Your state may have specific laws regarding a caregiver’s authority to make health care decisions for your loved one. Typically, states have three ways to confer that authority: through personal representatives named in advance health care directives, specifically health care powers of attorney; through default surrogate decision-making laws; or through guardianship law. You’ll need to do a little digging to find out what your state’s laws require.

Most caregivers end up paying for at least some of their loved one’s care, as well as for things like food, housekeeping services and medications. The American Bar Association and the Family Caregiver Alliance recommend you consider a Personal Care Agreement that spells out what kinds of services you’ll provide and what financial compensation your loved one will provide. It clarifies expectations, can help reduce family conflicts, and help you deal with issues around Medicaid or taxes. To draw up a Personal Care Agreement, it’s best to consult a lawyer experienced in elder law.

Arming yourself with information and appropriate legal documentation will help you be a better caregiver and give you more peace of mind.

Sources:

U.S. Department of Health and Human Services

Families Caring for an Aging America

American Bar Association

Family Caregiver Alliance

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