Story from a patient’s daughter
“Last year, my 84 year old dad fell and sustained a spinal cord injury and wound up bedridden in a nursing home. My siblings and I all live on the mainland and were going crazy trying to keep up with coordinating Dad’s appointments, interpreting the medical terminology, and interfacing with the insurance.
The medical system was extremely confusing and difficult to deal with — it seemed there was no single doctor trying to find the best solution for Dad. Checking into the nursing home meant that Dad had to relinquish the primary care physician (PCP) whom he’d seen for decades, switching instead to the nursing home PCP who was not as familiar with Dad’s history. Different specialists kept sending us to other specialists, each adding additional medications to the mix. Multiple doctors also complained that they were not getting reports from the other specialists.
We had been told that if surgery was necessary to repair the spinal cord injury, then it was a time-critical surgery. Several doctors had recommended a key test to determine whether Dad’s spinal cord injury was static or whether the injury was continuing to degrade. However, the recommended doctor would not perform the test, we could not find another doctor to perform the test, and meanwhile the clock was ticking down on the timeframe for surgery. My 77-year old mother also did not understand discussions at the doctors’ appointments sufficiently well to ask questions and to determine the best course of action.
I turned to professional advocates for help to find a specialist who would perform the critical test and to assist with Dad’s other health issues. I think the test was scheduled within days! They guided us through the decision process, patiently translating the medical lingo.
The advocates began to attend my dad’s doctor’s appointments, asking the doctors about options. They continued to advocate for my dad, helping with physical therapy options, and suggesting improvements in his care and comfort.”
The above illustrates how patient advocates helped a family navigate today’s health care system. Health care has become much more fragmented then in the past. I see it as an orchestra without a conductor – all the musicians doing their own thing without a cohesive leader – internists and primary care doctors should be the conductors but this is often not the case. As described in the above patient story, there are multiple decision makers and less of a collaborative decision process.
Today’s economic realities have resulted in busier doctors with less time to spend on patient interactions, research and thoughtful analysis– resulting in more referrals to specialists. In the exam room, the doctor asks a few questions while may be simultaneously entering data into their computer.. The exam is usually limited to a “pertinent” part of your body. There is a discussion, the doctor orders tests, writes or renews prescriptions and may refer to specialists. This encounter may be too brief for patients to absorb all the information or to formulate questions while the physician is in the room. An advocate attending the visit can help.
Advocates may be family, friends or professionals. Professional patient advocacy is beneficial for many patients especially those without nearby family or friends. Based on their professional expertise and training –professional advocates may…
- Work with health care providers to explain the details of your condition, treatment plans and options available.
- Review medications, dosing and possible interactions.
- Coordinate the moving parts and reduce negative effects of fragmentation.
- Evaluate medical bills for accuracy and act on your behalf with providers
- Assist in selection of health insurance coverage
- Expedite scheduling of timely medical appointments with popular physicians
- Accompany patients on their doctor visits
- Monitor hospital stays
- Help select senior residences or nursing homes
- Assist with long term care claim filing and appeals
Doctors are seeing the benefits of patient advocates. Patient advocates help families and patients review what the doctor said to better understand their condition and treatment.
How do you find an advocate?
The Alliance of Professional Health Advocates (APHA) has geographical listings of professional advocates.
Dr. Hilton is the President and CEO of Crown Care Hawaii, a local company serving the Hawaii Islands and providing patient advocacy and Medicare navigation services. Before starting Crown Care, Dr. Hilton was in clinical practice as an internist with a subspecialty of infectious disease. She is Professor of Clinical Medicine emerita at the Albert Einstein School of Medicine and has published numerous peer-reviewed articles and books..