Lessons from a Trained Patient Advocate

Martha Deed is exactly the person anyone would want as his or her patient advocate. A psychologist and member of the Consumers Union network of patient advocates, she is trained in patient advocacy and has a profound understanding of patient safety issues.

Yet when her own chronically ill daughter was subjected to a daunting cross-current of hospital specialists and treatment, even Deed felt like a sock being tossed around in an industrial washing machine.

She recently wrote about the experience on Sporkworld.org, and came away with valuable lessons for all.

As designated advocate for her 36-year-old daughter, Millie, who suffered from Behcet’s disease, an obscure autoimmune disorder, Deed had been through multiple medical emergencies and hospitalizations. She knew her daughter’s wishes, her response to various medications and her complicated medical history.

When Millie contracted a respiratory infection, few of Millie’s treatment providers had ever encountered a person with Behcet’s and none had ever spoken to her about how she wished her illness to be handled.

On admission to the hospital, Deed soon learned the limits of her superior knowledge. “I knew only what Millie’s previous illnesses had taught me. Each new hospitalization required a steep learning curve. [This] hospital was not treating Millie for Behcet’s. They were treating her in the ICU for respiratory failure due to swine flu. Behcet’s, to them, was an interesting side issue that they had little time for in an emergency.”

What ensued was a torturous adventure trying to communicate with uninformed professionals and coordinating care for two diseases whose treatment options often were contradictory. Medications that exacerbated Behcet’s were given to Millie without Deed’s knowledge, and sometimes in defiance of her directions.

We’ve written frequently about patient advocacy, including “Bringing an Ally with You to the Doctor’s Office,” “Protecting a Loved One in the Hospital” and “When the Doctor Isn’t Sure: What You Can Do.”

After Millie’s death, Deed learned:

  • If you do not have accurate information about your family member’s treatment, you cannot advocate effectively.
  • If staff does not accept documented medical facts about the patient, the hospital’s patient safety efforts may fail.
  • Patient safety personnel cannot work effectively if there are gaps in handling a patient’s concerns.
  • If you don’t know who is in charge, your concerns may not be addressed.

Before hospitalization, Deed recommends:
1. Look up your local hospitals on your state health department’s website for information that might include the record of citations and corrective actions that have been taken against them by the Department of Health.
2. Look up results of patient satisfaction surveys for the hospital. Check for infection rates, medical errors and mortality and failure to rescue rates as reported by Medicare’s Hospital Compare.

If hospitalization is a surprise:
1. Read the hospital’s orientation material carefully. Find out who is in charge of your loved one’s case. Be present for rounds by that physician.
2. Make sure that others are available to visit and comfort the patient if you are engaged in advocacy.
3. Have someone stay with the patient as close to 24/7 as possible–problems can occur day or night. Do not attempt to do it all by yourself.
4. Get some rest yourself so that you can remain helpful and clear thinking.
5. Keep a log so as not to lose track of what is happening with your loved one’s care. Include notes of any contact with medical staff. This can help prevent misunderstandings as well as mistakes.
6. The hospital probably prefers a single contact person. But that person-you, the patient advocate-can benefit from discussing the patient’s treatment with someone who knows the patient well and is trusted by him or her. The back-up can help identify communication or treatment gaps.
7. Be polite, even in an emergency in which you must engage the highest levels of hospital hierarchy.

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