Los Angeles, CA—Patient comfort and emotional support are part of the quality components in value-based cancer care. However, hospitals and caregivers are not always up to the task, said Lee Tomlinson, an author, educator, and speaker from Santa Monica, CA, as well as a cancer survivor; he presented the patient’s perspective at the Fourth Annual Conference of the Association for Value-Based Cancer Care.
An anticipated routine visit to his ear, nose, and throat physician turned into something more than the allergies that he had been diagnosed with when his physician recommended that he have an endoscopy. The physician told him she found evidence of advanced esophageal cancer, and suggested that his wife come to her office. The physician then patiently answered all their questions, gave them her cell phone number, referred Mr Tomlinson to Beverly Hills Cancer Center, and hugged him as he was leaving, saying, “We’re in this together—the 3 of us are going to beat this…together,” he reported.
“It was easily, next to the death of family members, the worst day of my life, but I left that office somehow comforted, somehow empowered, somehow feeling optimistic, despite the crushingly bad news that I had just been given,” said Mr Tomlinson. “Well, I would love to tell you that it was all hats and horns after that.”
While undergoing treatment, along with the kind gestures from caregivers and even a parking lot attendant who carried him up the steps and placed him into a wheelchair, Mr Tomlinson described a slew of severe side effects from his chemotherapy and radiation, a dead gecko in his hospital room, a bout of coagulase-negative Staphylococcus epidermidis, dead orchids at the reception desk, a physician–nurse verbal confrontation in the hall, a hospital “thank you” note with his gender misidentified and his name misspelled, and more.
“I knew that I was a paycheck,” Mr Tomlinson said. “I wanted to die. I clearly had no value as a human beyond $10,500 a day.”
Some of his pain was self-inflicted, such as his decision to forgo parenteral nutrition, and he delayed entering the cancer support community, which he called one of his biggest regrets.
Mr Tomlinson is now 2 years out and is “100% cancer free,” with no evidence of disease. “I owe it to people who do exactly what you do,” he said to the oncologists and payers present at the conference. “I am alive today because of you. Without the research, without the treatment, without the care, without all of what you’ve been talking about, without my insurance company, without my employer, I would be dead,” he emphasized.
“That’s thrilling to me. However, what you don’t know is the fight was harder than it needed to have been. There were parts of it that were unnecessarily difficult, that caused me enormous pain, enormous suffering—caused my family and friends the same,” Mr Tomlinson continued.
What Constitutes Value to the Patient? There are ways of improving a patient’s experience, and they do not cost much money, Mr Tomlinson said. Basic psychosocial care is crucial. As defined by the World Health Organization, psychosocial care consists of offering patients and their families emotional support and communication in a person-centered and sensitive manner.
Patients want treatment, and they want comfort. “Nobody told me it was important,” said Mr Tomlinson. “Remind us—stress the importance.”
Expressions of caring are important, he said. “I get that you care, but unexpressed care is useless,” Mr Tomlinson said.
Patients want their caregivers to be at their best, he said, noting that 38% of oncologists experience burnout. They want well-rested, well-compensated oncologists who put themselves first, so they could be at their best.
“Whatever time I have left, I’m committed to creating a deeper, mutual understanding between medical professionals and patients to enable all of us to work better as a team, rather than adversaries, or in our silos,” Mr Tomlinson said.
