The mind-boggling frustration of a simple visit to the doctor’s office is legendary. Clinicians interrupt patients offering medical histories within an average of 15 seconds. The typical length of a visit to a primary care physician is just 15 minutes. And after leaving, patients retain only a fraction of what a doctor has told them.
Add to this frustration the complexity of an older adult with chronic illnesses or dementia – not to mention normal age-related cognitive decline – and it’s a recipe for healthcare disaster.
To wrestle power from the hands of physicians and return it to patients in true collaborative fashion, residents at the Pilgrim Place continuing care facility in Claremont – most of them former clergy or humanitarian workers – have created their own patient advocacy program.
Call it “divine guidance.”
Launched over a decade ago, trained patient advocates are paired with residents for visits to their primary care physicians and specialists.
Together, they prepare for these medical visits by examining research, clarifying patient desires, and exploring treatment options. Privacy guidelines and advanced directives are also discussed. During the visit itself, advocates help anxious patients by taking notes and asking questions during these intense – yet brief – encounters.
The goal: become a “smart patient.”
“We encourage patients and their advocates to make a list of questions and type it out and hand it to the doctor when they walk in the office,” says resident Linda Vogel, who coordinates the program. “Otherwise you wait for the doctor’s hand to be on the door knob to say ‘Oh, by the way, I haven’t been sleeping.’”
“It’s really very helpful to have someone to go with you and have a second pair of ears,” echoes co-coordinator Janet Evans.
Patient advocates receive six hours of training, their most important lessons being the simplest. First, foster the relationship with a physician, but don’t control it. Next, encourage patients to ask their own questions. Finally, don’t make any decisions, but let patients maintain responsibility for their own health.
“A lot of what the patient advocates do is encourage people to stand up for themselves and ask for what they need,” says Evans.
Advocates will also join patients at a critical time – during an emergency room visit – when patients are frightened, confused, vulnerable and often unable to communicate.
As a former nurse and health educator in Japan, Brazil and Madagascar, Eleanor Loeliger has offered advice to dozens of Pilgrim Place residents seeking her expertise. Officially, however, she’s acted as a patient advocate for just a handful, carefully choosing only those with complex health needs.
Loeliger spent many hours in the pottery studio alongside a friend who suddenly began dragging her foot. Although her friend was married, neither her husband nor two children had the medical expertise to handle the diagnosis – a brain tumor – or the challenges that followed.
“I followed her as her advocate through all of those decision-making situations,” says Loeliger, 75. When radiation failed, Loeliger made the radical suggestion that her own family couldn’t.
And Loeliger knew it was the right decision for her dear friend.
“She was basically non-verbal,” says Loeliger. “But her eyes and her body expressed her ‘thank you.’”
While Pilgrim Place doesn’t track the health improvements of patients with advocates – versus those who don’t – residents offer plenty of anecdotes that illustrate how much the advocacy program helps.
As a patient advocate, Evans recounts a physician visit alongside a Pilgrim Place resident with severe ankle wounds that weren’t healing. The doctor was arrogant and dismissive until Evans spoke up for her friend, informing the doctor that his patient had actually been instrumental in establishing a medical library in the Philippines. Within a couple of weeks, patient and doctor were swapping family histories.
There are currently 80 patient advocates at Pilgrim Place who have gone through the six-hour training course, which is held at least once annually.
The program is so well-known throughout the Claremont area that when one elderly resident visited a clinician and began asking intelligent, informed questions the physician asked “Are you from Pilgrim Place?”
The program is supervised by Pilgrim Place residents who work together with administrators and the site’s onsite health services to determine when a resident needs a patient advocate. (Continuing care retirement communities like Pilgrim Place offer a wide spectrum of care, from independent living to assisted living all the way through skilled nursing and hospice.)
One requirement of the program is somewhat surprising: to be assigned a patient advocate, residents must allow their patient advocate to inform Pilgrim Place clinic administrators what goes on outside the facility: symptoms, diagnoses, tests, results, and treatment.
“The clinic staff are responsible for the health and wellbeing of all the residents,” explains Evans.
Patient advocacy is gaining momentum nationally not only because of problems navigating the healthcare system, but because costs are shifting away from insurers and employers onto the backs of patients themselves.
Although often faced with the paternal attitudes of clinicians, advocates for the aging are a win-win for everyone: patients, physicians, administrators, and the friends who want to help make healthcare a kinder, gentler experience.