When Everyone Is Providing Care, But Nobody Is Putting the Pieces Together

When should you bring in a patient advocate?

Wildly before you think you should.

Clients tell me all the time that they wish they had met me years earlier. I have yet to have anyone ask for help too early.

The person who isn't there

When care gets complicated, so does the plan. And it quietly depends on an imaginary person with unlimited time, money, knowledge, and emotional capacity.

I've seen it everywhere in complex care. The oncologist's office. The specialist's office. Anywhere someone is sick and hurting, they leave with a plan that needs someone to carry it out:

• Managing medications
• Making follow-up calls
• Watching symptoms and knowing when to escalate
• Arranging rides
• Filling out forms
• Dealing with insurance and appeals

That work lands on a patient who just got a hard diagnosis, or on a daughter, son, or spouse who already has a job and a life. Nobody checked whether they could carry it.

At the kitchen table

I've sat in a client's kitchen holding their hand. They handed me a shoebox full of papers from different visits, and a box full of medications.

They didn't know what was important and what wasn't. There was so much in that box they didn't even know was there. They didn't know where to start.

That's not a failure on their part. That's what happens when a plan is built for someone who doesn't exist.

"Non-compliant"

When the plan doesn't get done, the chart says non-compliant. But often the plan was the flaw. It asked more than one tired family could safely carry.

If we got better at continuity and closing the loops, we could make healthcare safer for everyone. Until then, everyone needs an advocate. Either you become your own, or you hire one.

When to call

You don't need to wait for a crisis. It's a good time to bring in an advocate when:

• A new or serious diagnosis comes with a long list of next steps
• More than one specialist is involved and no one seems to be connecting the dots
• The papers and medications are piling up and you're not sure what matters
• You're the family member carrying it all, and you're already tired
• You hear yourself asking, "Is it time to get help?"

If you're asking, it's time.

An advocate checks whether the plan fits the real person, sorts out what matters, and builds backup before something becomes a crisis. Think of it as having a nurse in the family.

I'm Adrienne Angel, a nurse and private patient advocate serving Marin County and Petaluma, and families virtually anywhere. If your family is carrying too much right now, reach out.