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Moving forward together

As a caregiver, you may help set a clear path forward for you and your loved one on their health care journey.

Five tips to navigate the health care system

As a caregiver, you are an important part of your loved one’s care team. You’ll play many roles. One job you might take on is helping them navigate the health care system.

 
 

1. Play an active role in your loved one’s doctors’ appointments

You can support them and be a second set of ears at appointments. Here are a few things you can do: 

  • Ask questions and take notes.
  • Help communicate your loved one’s concerns.
  • Learn the names of your loved one’s care team and how to contact them.
  • Keep your loved one involved as much as possible in managing their care.

Here are some example questions you can take to doctor appointments based on your loved one's diagnosis:

Stay engaged with your kidney doctor to manage your kidney disease

2. Organize their medical information and paperwork

Make sure you bring your loved one's medical information to all appointments.

You should include:

  • A list of all medications
  • Known drug allergies
  • Names of their doctors
  • Medical and pharmacy insurance
  • Advance directives if available

Keep this information with you so you’re always prepared.

There's a lot of paperwork that comes with medical treatment. Keep a careful record of medical bills, insurance claims and other payments. It can help you track their expenses and avoid added stress. 

3. See if time off from work is possible

If you work, juggling your duties as a caregiver and your job might be difficult. The Family and Medical Leave Act (FMLA) gives some employees up to 12 weeks of leave per year. The catch is that it’s unpaid.

FMLA applies to all employers with 50 or more employees within 75 miles. They must provide eligible employees with leave for many reasons, including:

  • When the employee is unable to work because of a serious health condition
  • For the care of an immediate family member with a serious health condition

You can learn more about eligibility from the U.S. Department of Labor or your employer’s human resource department.1

4. Talk with your loved one about giving doctors permission to share information with you

Generally, doctors can share information with you while you are there with your loved one. The law limits what they can share when the patient is not there, like a phone conversation. Doctors need a release form signed by your loved one in those situations.

Release forms allow doctors to share information with you if you’re not your loved one’s spouse. But it does not give you permission to make decisions about their medical care. You will need an advance health care directive in that situation.2

5. Discuss advance directives

An advance directive lets your loved one express health care wishes in advance.

The most common ones are:  

  • Durable power of attorney for health care
  • Living will
  • Do not resuscitate (DNR)
  • Physician Orders for Life Sustaining Treatment (POLST) or portable medical orders

Make sure your loved one’s care team has a copy of any advance directives for their records.

Durable power of attorney for health care

A durable power of attorney for health care is sometimes called a medical power of attorney. If your loved one is unable to make their own decisions, this document names a decision-maker.

How a medical power of attorney works varies from state to state. Check with your loved one’s care team and local laws.

Living will

A living will expresses your loved one’s wishes in the event that they cannot. It can include their decisions about life-extending treatments like artificial ventilation or feeding tubes. Your loved one can change or take back their living will at any time. It is only used if they are terminally ill or permanently unconscious.3

Do not resuscitate (DNR) order

A DNR order lets medical staff know that your loved one does not want CPR or other life-saving measures.

Having a DNR order as part of your medical file can be helpful, even if your living will says that you don't want CPR. If you post it by your bed, it might help to avoid confusion in an emergency. Without it, medical staff will try to restore your breathing and heart rate to normal.3

Physician Orders for Life-Sustaining Treatment or portable medical orders

Paramedics and emergency medical technicians (EMTs) can't use an advance directive. They can follow portable medical orders sometimes called Physician Orders for Life-Sustaining Treatment (POLST).

A POLST form tells health care providers what kind of emergency care your loved one wants. A qualified member of the patient’s care team must sign the form.

POLST forms are only available in certain states. You can learn more at polst.org

Get our guide for caregivers 

 
 
 

1US Department of Labor. FMLA frequently asked questionsAccessed August 23, 2022.

2US Department of Health and Human Services. Health information privacyAccessed August 23, 2022.

3National Institute on Aging (NIA). Advance care planning: health care directivesAccessed August 23, 2022.

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