Caregiver Support: Talking About Advance Care Planning

Topic Overview

When your loved one is diagnosed with a life-limiting illness, it is important to keep communication as clear and direct as possible. Work at keeping the lines of communication open with your loved one, with his or her doctor, and with your family. Recognize your family's style of communication. How did your family communicate before your loved one was diagnosed with this serious illness? Were you able to communicate freely and openly, or were there barriers to your communication, such as frequent arguments or a lack of sharing? If you encounter barriers, consider visiting a counselor to help resolve difficult issues and to help your family learn some effective ways to communicate.

Talk to your loved one and his or her doctor about the life-limiting 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?

Talk to your loved one about his or her wishes. What end-of-life goals does he or she have? How do these goals compare with yours? If your loved one has not communicated his or her end-of-life wishes, talk about them now. Important issues to discuss include:

• 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? Allow opportunities for your loved one to talk about his or her 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 is 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 possibly 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 are fearful about not receiving the medical care necessary to control their symptoms. For more information on hospice services in your area, see the topic Hospice Care.
  • Where do you want your loved one to die? You may want him or her 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 him or her. 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? Does he or she 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 available to provide financial consultation.

Caring for a dying loved one can be a rewarding but difficult experience. Taking care of yourself, letting the person do as much as he or she can, and asking for help are three key tips to help both you and the person you're caring for. Services, such as hospice and support groups, can also provide help. For more information, see the topic Caregiver Tips.