Chapter 9: Including Families and Caregivers

"What would you like your family to know?"

Family and informal caregivers play an important role in the lives of their loved ones. They also play an increasingly important role in how the health care system functions. By communicating effectively with all the individuals involved in your patient’s care, you can help him or her while making efficient use of time and resources.

Informal caregivers may be important “informants.” They can also help to reinforce the importance of information you give or the treatment you prescribe.

When a companion is present, be aware of communication issues that arise in three-party interactions. Too often, the conversation may be directed at the companion and not at the patient; in some cases, the encounter can become a “two against one” match, which no one really wins. Whenever possible, try to sit so that you form a triangle and can address both the patient and companion face-to-face.

To protect and honor patient privacy, be sure to check with the patient on how he or she sees the companion’s role. In many cases, the caregiver or companion can be a facilitator, helping the patient express concerns and reinforcing what you say. But it is best not to assume that a companion should be included in the medical encounter. First, check with the patient. Conducting the physical exam alone protects the patient’s privacy and allows you to raise sensitive issues. The best time to conduct a “mini-mental" exam is during a private exam, so that a family member cannot answer questions or cover for the patient’s cognitive lapses.

Families may want to make decisions for a loved one. Adult children especially may want to step in for a parent who has cognitive impairments. If a family member has been named the health care agent or proxy, under some circumstances, he or she has the legal authority to make care decisions. However, without this authority, the patient must make his or her own choices. Try to set clear boundaries with family members, and encourage others to respect them.

Family caregivers face profound emotional, financial, and physical challenges. They often provide help with household chores, transportation, and personal care. More than one-third also give medications, injections, and medical treatments to the person for whom they care. You may view informal caregivers as “hidden patients” and be alert for signs of illness and stress. Caregivers may find it hard to make time for themselves. Encourage them to seek respite care, to recharge and take a break from the loved one. And remember, your encouragement and praise can help to sustain a caregiver.

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