Advocating for You, the Caregiver

 

Advocacy has a multiplicity of meanings, depending on where you sit. We may associate the term with our strong desire to help find a cure for rare disease. As caregivers, we are compelled to feel knowledgeable about conditions, symptoms and treatments. We feel this because we are driven by the need to feel confident about the decisions we make: that they will bring about the outcome we want; that they work with our values; that we will live into the future without regret, because we did the best that we could with the understanding that we had. To advocate.

This is what we do. We may have no choice in the matter, although some caregivers may participate in this advocacy process more actively than others. It is a demanding role and not everyone is comfortable with it. Some of us lack the time and many of us have no idea of how or where to begin.

In my role as Director of Community Engagement at Courageous Parents Network (the nonprofit organization whose mission is to equip, empower and support families and clinicians caring for children with serious illness), I work with families that are eager to learn from the experience of others (and clinicians) caring for children or who have lost them to rare disease. CPN regularly surveys these families to learn about their priorities. Being an effective advocate is always at the top of the list.

The how to advocate, again, is the question. So many of us are intimidated by the “system” we find ourselves in. Hospitals are bustling places and medicine has lots of protocols and roles and rules. There is no pre-determined roadmap for caregivers. But what CPN emphasizes, over and over again, is that the caregiver is the expert on the patient. We are the ones who know our children, know their baseline, see changes, understand what they are communicating—discomfort, frustration, pain, fear, even joy—and how. Thankfully, we work with compassionate clinicians. Sometimes, however, we need to assert some authority so that we can fully participate in our patient’s care. And that can be uncomfortable.

Here are some tried and true conversation starters to help anyone who wants to advocate—not just for the patient, but also for themselves as the caregiver. As the co-equal expert.

• “We really appreciate it when you [describe something the clinician does], because [describe how or why it is helpful].”
• “[Child’s name] responds well when I [describe something you are doing]. What else can I do to keep [name] comfortable/engaged/etc.?”
• “We’ve noticed [describe a change that you see]. Can you tell us why this is happening, and what we can expect in the future?”
• “We are really struggling to understand the risks and benefits of what you are recommending. I do have questions, is this a good time to ask?”
• “[Name or describe a treatment] doesn’t seem to be working as well as it did before. Can we talk about other options?”
• “The new treatment doesn’t seem to be helping. Can we talk about other options?”

Most clinicians truly are interested to hear from us. Don’t be put off if you should encounter one who makes you feel otherwise. More likely than not, they are a specialist who is less familiar with pediatric versions of their specialty condition. If you are in any way feeling disregarded, hold on to the idea that you have valuable perspective to share. Remember that the goal is family-centered care. As you advocate for yourself, you are advocating for the patient.

• Find videos on decision making and a printable guide on Shared Decision Making.
• Hear from a rare disease mom on how too many choices can become sources of stress and self-recrimination for caregivers.
• Hear from a mother whose child could participate in decision making about Collaborative Goal Setting.
• Learn how palliative care supports you in defining your goals of care and making decisions.