Patient Advocates Make a Difference

I had been working with "Barbara," a sibling of a 55-year-old woman. Her sister, “Lucy”, had mild dementia, liver failure, kidney failure, and a history of alcohol and drug abuse. Barbara needed my help to get Lucy better health care, as she was not taking care of herself from a medical standpoint. Two weeks ago, I received a phone call from Barbara. Lucy was in the hospital, having been taken there after a friend called because she was emotionally and physically deteriorating. She was in full-blown liver failure, among other problems, and the hospital recommended hospice. However, Lucy declined. I was the liaison between Barbara and the hospital staff; A patient advocate (particularly one with a strong medical background) is indispensable at such a time.

 To make matters more difficult, we could not get into the hospital's medical records (we were pushed back at every junction) to see what was happening. The problem was that she was dying, had nowhere to go, and nobody to take care of her. Unfortunately, at that point, she didn't meet the qualifications for inpatient hospice.

 Over the course of a few days (and many telephone calls), I was able to speak with the hospice team and an incredible hospitalist. It turns out that, as with many hospital systems, they were still trying to keep the patient alive, giving her medication for her liver failure (Lactulose, which causes diarrhea to lower the ammonia level in a patient with liver failure and caused her to have bowel movements in bed) as well as medications to keep her blood pressure normalized as it began to drop. She was dying, and nobody was helping or listening.

 When I finally spoke with a new hospitalist (she had 4 in 4 days) who agreed with us, and finally stopped all her medications, as well as fluids, and started hospice protocol. We had her re-evaluated by the hospice team, who agreed, at that point, that she qualified for placement in inpatient care.

 She was sent by ambulance the following day, had a bath, had a beautiful private room, and died peacefully the following day, allowing her body to do what it was reaching out to do for days. I don't know what would have happened without me (or any similarly trained patient advocate). Most likely, they would have continued to "try and save her life", she would have possibly died in pain, and those closest to her would have had to witness it all.

 Instead, she was able to die with dignity, clean and at peace, which is what we want for ourselves and our loved ones. The hospital's job is to get them out of the hospital so they can use the bed for other patients. Hospitals risk not being paid if patients are there too long (insurance denial).

 Sometimes we can't always save a life, but we need to let the health care team know that it is time to let go, and let dying take its normal course. We must also allow an advocate to help us since hospitals are not typically user-friendly. Lucy had different hospitalists for three solid days; all they did was punt. They knew they were only there for one day; she was in pain, yet they were not medicating her properly. They assured us she was not in pain; however, I pointed out the signs of pain (grimacing, crying out, etc). She was unable to communicate this in words.

Patient Advocacy, in its infancy, seemed unnecessary or elitist. However, our healthcare system has become very complicated and bogged down with procedures that don't always work in the patient's best interest. We need to advocate, question, and know when we need that extra help. As a former Physician Assistant in oncology, and now a Patient Advocate helping to achieve the best outcomes for my clients, I feel privileged and honored that they put their trust in me.