The Importance of Family Advocacy

Several years ago, I met with a distraught mother and father at a long-term acute care facility in San Diego. Their 36-year-old only son had been hit by a car 5 weeks earlier and suffered severe brain injury. To add insult to injury, he’s suffered a severe stroke after that.

Mom and Dad were being asked to make a very important decision about whether or not they wanted cardiopulmonary resuscitation. This is otherwise known as “CPR” or “code status.”

With no advanced directive to guide them they were torn about the decision. They desperately needed support from their attending physician, but he had become impatient, refusing to spend time with them discussing the ramifications of this huge decision. Hard to imagine right?

They told me that this physician clearly voiced his disagreement with their initial thoughts on the decision. He’d walked out on them once and hung up the phone on them another time. He did not direct anyone on the staff to facilitate a meeting with a social work or psychiatric expert who could help this devastated couple make the most important decision of their lives.

They went looking on the internet for an advocate and found me.

I met this couple in their son’s room. My visit was well-timed, as a very young social worker walked in. In the nicest possible way, I told her that mom and dad wanted to talk with her about their son’s code status. She stood at the young man’s bedside and initiated the conversation with the mother on the opposite side of the bed. I suggested we move to a private room.

Immediately she became agitated and hurried out of the room saying she’d be right back. She reappeared with a very hostile management type, and we were escorted down the hall into a conference room where we had an unnecessarily difficult meeting. Leaving the juicy and more dramatic part of this out, I’ll just say that in the end it was a helpful meeting, but it was unnecessarily hard on the family who had been completely disempowered in this situation.

A request to speak with the neurologist (who they hadn’t seen in five weeks of in-patient status), was honored and offers of assistance were finally extended.

In this case the medical providers had failed this family. These grieving parents were left feeling victimized themselves. With professional advocacy on their behalf, things changed. Within a week they were able to schedule meetings with each of the physicians involved to review the pros and cons of each decision.

Many patients and their families expect that good communication with medical staff in the hospital or otherwise, will automatically happen. The truth is that sometimes it does and sometimes it just doesn't. Stressed people don't always respond the way they should, and overtaxed medical systems can fail. Expectations can be unrealistic on both sides.

In this case, parents were being expected to process terribly traumatic information about their only son and come to a decision without the dialogue they needed to process. With our help, this family was finally given the information they needed to make their best decision. It didn’t happen easily, but it did happen.

Patient and family advocates are critical in making sure that both are treated with the respect they deserve. Patient and family advocates can also be hospital management’s best friends, if they are able to facilitate positive outcomes all the way around.

If you need help managing the care of your loved one, Grace Care Management is here to support you. Give us a call at (760) 789-9177 for a free consultation.