Caregiver Support: Talking About Advance Care Planning

Overview

Caring for a dying loved one can be a rewarding but difficult experience. Let the person you're caring for do as much as they can. Also try to take care of yourself and ask for help when you need it.

It's important to talk openly with your loved one and their doctor. Also try to talk openly as a family. If your family has trouble talking to each other, you may want to see a counselor. Counseling can help you learn healthier ways to talk to each other. It can also help with difficult issues.

Questions to ask the doctor

Talk to your loved one and the doctor about the diagnosis. Questions to ask the doctor include:

• What are the treatment options?
• How long do you expect my loved one to live?
• What do you expect to happen with this diagnosis?
• What support services are available to help my family?
• Who will oversee and manage my loved one's care?
• Who do I call if my loved one is having problems, such as pain?

Things to talk about with your loved one

It can be hard to talk to your loved one about their end-of-life wishes. But it's important. Some of the things you might want to talk about include your loved one's treatment and personal goals, where they want to die, and what kind of funeral or memorial service they want.

Treatment goals.

• What type of medical treatment does your loved one want? Is it curative, life-sustaining treatment? Or is it care focused on maintaining comfort and controlling symptoms without curing the illness?
• Has a legal document to express these health care wishes—called an advance directive—been written?

Personal and family goals.

• Discuss your loved one's end-of-life goals. Are there things that need to be done? Are there relationships that need mending? Give your loved one the chance to talk about their life, to reflect on accomplishments, and to share any regrets.
• Share your goals. What do you need to do to be able to say good-bye? Do you share similar goals with your loved one? Are there goals or desires that you may not be able to honor? It's important to share your goals with your loved one.

Location of death.

Your loved one can die at one of several locations, including home, a hospital or nursing home, or maybe a local hospice house. There is no "right" place to die.

• Some people want to die at home surrounded by family members. Hospice services often can help a person be allowed to die at home. Some people may be reluctant to die at home because they are concerned about the welfare of their loved ones. Or they may fear that they won't get the medical care they need to control their symptoms.
• Where do you want your loved one to die? You may want them at home, where you can help provide care. What concerns do you have about caring for your loved one at home? You may be hesitant to have your loved one die at home because you are concerned about your ability to care for them. This is often a concern for family members who are elderly or who have health problems of their own. You may be reluctant to live in a house in which someone has died.

Funeral plans.

Does your loved one want a funeral or memorial service? Do they prefer burial or cremation?

Finances.

• What financial support is available to help you care for your dying loved one? Hospice services are a benefit of many private health insurance policies. Check your health plan for specific information about hospice coverage. Also, if you qualify for Medicare benefits, hospice services are covered through the Medicare hospice benefit.
• When your loved one dies, will you be able to manage the finances? You may want to meet with an attorney to discuss financial and estate issues. A social worker from your local hospital or hospice may be able to consult with you about finances.