Montel Williams works the room to engage the audience at the Patient Experience Summit, April 14, 2016 in Dallas.
Talk-show host Montel Williams knows a thing or two about being a patient. That means he knows what patients want and expect.
“My hospital journey, my relationship with nurses, started when I was 18 months old,” Williams said Thursday to a rapt audience at the Beryl Institute’s 2016 Patient Experience Conference in Dallas. That’s when the mischievous toddler poured a pot of boiling water over his head in his family’s Baltimore kitchen. Soon after, he became one of the first children to be treated in a hyperbaric chamber.
As a 19-year-old U.S. Marine, Williams had a torn pectoral muscle misdiagnosed as breast cancer, leading to an unnecessary double mastectomy. “They butchered me,” Williams recalled.
Just three weeks later, he took a physical exam to be admitted to the U.S. Naval Academy, and didn’t tell anyone about his injury. He ruptured one of his sutures while doing a series of pushups and dips for the entrance exam, but never told anyone. Williams still got into Annapolis.
Those were just the early stages of his medical journey. “I’m telling you, you would not believe how much time I have spent with people like yourself,” Williams told the audience, mostly made up of clinician leaders, quality officers and patient experience professionals.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
Shortly before graduating from the Naval Academy in 1980, Williams got a routine series of vaccinations in preparation for the world travel that his mandatory Navy service would require. The diphtheria and typhoid shots may have triggered his first episode of multiple sclerosis — though Williams was quick to say he was pro-childhood vaccinations and didn’t blame the shot for the disease.
“I probably had the gene for MS anyway,” he said. The problem was, MS was a disease closely associated with Caucasian women, particularly those with Northern European heritage. He was an otherwise-healthy, 22-year-old African-American male.
For 19 years, he regularly woke up in pain, and was depressed. At one point, Williams was taking seven OxyContins each morning. “I decided to take my life. I attempted twice. It even felt like failure the second time,” he said.
Meanwhile, his health deteriorated. In May 1998, he started bleeding out of his nose. At the local emergency room, the doctor thought Williams had done the damage to himself. Over the next month, Williams underwent four cauterizations and six nasal probes.
“Nobody could figure out why I was bleeding out of my nose,” Williams said. “Nobody ever thought MS.”
Finally, someone decided to order CT scan and an MRI, which showed that each of 4 blood vessels in Williams’ face was as thick as his finger. He bled 20 times in a month, once while taping his TV show in front of a studio audience. (This somehow didn’t get out in the press for years.)
During one episode, Williams flatlined, and it took 20 minutes to restore his normal heartbeat. (Williams said Thursday that he probably should have died then.) He subsequently endured 17 hours of surgery to fix the blood vessels.
Nine months later, the New York-based Williams flew out to Utah to film an episode of “Touched By An Angel.” On the flight, he recalled, “My feet were on fire.”
Williams was supposed to cry in the scene he appeared in, and was having trouble at home making himself cry on cue. But during the filming, the pain and sadness helped elicit realistic tears. “Everybody thought I was such an amazing actor,” Williams quipped.
While he was in Utah, he finally got diagnosed with MS, but he said that the physician who diagnosed him was a “bad person,” devoid of empathy and bedside manner. Every other caregiver and hospital employee he has ever encountered has been wonderful, Williams said.
Now, he wants to try to help those who are suffering, including his family and his fellow veterans. Over a four-year period, Williams visited every soldier at Walter Reed National Military Medical Center in Bethesda, Maryland.
In his own family, one daughter has epilepsy, while another has suffered from lymphoma. The latter is currently in nursing school “When I say I understand the medical community, believe me, I do,” Williams said.
“As I look around this room, I say, ‘God bless you,’ to you,” Williams said. “You are where the rubber meets the road, and nobody is recognizing you.”
They had better get recognized, because the aging of the baby boomers — Williams’ own generation — is creating what he called a “colossal emergency looming over people’s health,” in the form of a clinician shortage.
The number of Americans afflicted by chronic illness will increase from 44 percent to well over 65 percent in the next six years, Williams said. By 2022, the country will face a shortage of 590,000 nurses and 300,000 doctors short.
“Put your seatbelt on and be ready to be abused,” Williams said.
Then he brought it back to the patient — and clinician — experience. He told the caregivers in the room to take care of their own physical and mental health.
“How can you be the best doctor, the best nurse, the best anybody, if you go to work every day filled with anxiety?” Williams asked. He noted that every hospital floor and clinic has hand sanitizers everywhere, and use of them has become routine. But clinicians too often look stressed, and that rubs off on patients. “When do you do the face sanitizer?” Williams said.
