Bob Riter

I’ve often written that it is helpful for a person with cancer to have an advocate present during doctor’s appointments and hospital stays.

I’d like to devote this column to the nuts and bolts of what this really means. What I describe is based on seeing hundreds of loved ones serving as advocates. Nearly all are well-intentioned, but not all are effective or even helpful.

The most important role for the advocate is to understand and be supportive of the patient and the patient’s wishes.

Above all, a good advocate needs to be a good listener. Listen to the patient. And listen to the health professionals.

Most problems occur when loved ones confuse their own wishes and agenda with those of the patient. This isn’t done maliciously. More often, it’s based on assumptions of what’s best for the patient without actually asking the patient.

It’s entirely normal for loved ones to have their own agendas. But understand that the patient’s agenda and loved ones’ agendas aren’t necessarily one and the same.

It can be helpful for patients and their loved ones to separately write down their wishes and priorities. Afterwards, compare the lists to see where they overlap and where they differ. This provides clarity and also a springboard for discussion.

Ultimately, though, advocates need to realize that it is the patient and the patient’s wishes that take precedence.

Here are a few additional suggestions for advocates:

• Talk with the patient before appointments to write down questions the patient wants to ask.
• Let the patient speak for him or herself.
• Take notes.
• Let the health care team do its work.
• Report changes in the patient’s status to the health professionals, especially ones that aren’t obvious. For example, “Sarah seems to have much less energy than she did last month.”
• Understand the reality of the situation and maintain reasonable expectations.
• Think of yourself as part of the care team. Ask both the patient and the professionals how you can be helpful.
• Be a bridge-builder. Connect with providers, other patients and family members.
• Think of ways to help with non-medical issues, e.g., household chores, that free up the patient’s time and energy.

Some people don’t think of themselves as advocates because they aren’t loud and pushy. In fact, the best advocates are quiet forces who support mostly by their steadfast presence. I heard one patient refer to his advocate as his “designated listener.” What a perfect description. We should all have designated listeners.

Reprinted from When Your Life is Touched by Cancer: Practical Advice and Insights for Patients, Professionals and Those Who Care.