18. How can I help my parents think about their future health care preferences? Since my mother was diagnosed with cancer, we’ve heard a lot about the importance of advance care planning. How do we do that?

Making advance care plans is a key step for your parent to take to be sure that his or her health care preferences are known. Health care providers can only respect those wishes that have been made known and are documented in the medical record. Advance care planning can help your family avoid some of the conflicts that can occur when family members disagree over treatment decisions.

It may be easier to make certain decisions after discussing them with family, clergy members, or health care providers. Decisions about forgoing treatment, for instance, or ending life support, involve complex emotional issues and are hard for many people to make alone. Try to make peace with yourself and your family, whatever the decision. As one caregiver put it, “So much of the task is wading through your own feelings—and the rest is just figuring out what to do.”

When thinking about the future consider:

• Naming a surrogate decision maker (a surrogate has the authority to make decisions on behalf of someone who is too ill to do so),
• Stating which treatment results are desirable and which ones are unacceptable,
• Discussing what to do in an emergency,
• Noting preferences regarding any possible treatments, and whether or not a time-limited trial would be acceptable (for instance, 5 days on a ventilator to recover some strength; a week with a feeding tube, and so on),
• Talking to the doctor and surrogate about preferences and including written instructions in the medical record.

Advance care planning is an ongoing process. As an illness progresses and circumstances change, your parent may want to revisit his or her preferences. If so, be sure to update all written instructions and share the changes with health care providers and anyone who assists with care.

Try to approach decision-making tasks by recognizing that you are working with a parent, not for a parent (unless you are healthcare proxy or agent, in which case, you will be implementing a family member’s decisions). How will you know when the advance care plans are complete and that you have covered all the bases? A complete plan will:

• Be very specific and detailed and cover what is to be done in a variety of medical situations,
• Name a healthcare proxy,
• Be recorded in the medical record,
• Be readily available to any caregiver in the home, nursing home, or hospital.

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