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PALO ALTO, Calif. – Rafael Arias already lost a leg to cancer and now he has a recurrent sarcoma, but he decided chemotherapy wasn’t for him.
“It made me sick and within a week, we had to stop it,” he said. “So as difficult as it was, I just decided not to go through with it.”
By choosing not to have chemotherapy, the 46-year-old former Army police officer made a decision about how he wants to spend his remaining days.
“With the little bit of time that I have left, my wife and I have plans of going to certain places and maybe doing some things before my departure,” he said. “Right now, we are just trying to take advantage of the fact that I’m still here.”
Across America, many late-stage cancer patients undergo painful chemotherapy – a process of using strong drugs to try to treat cancer – in the mistaken beliefthat a cure is possible, and it's costing big money.
“The rate at which health care spending is growing in this country is absolutely not sustainable,” warns Stanford University professor Dr. Arnold Milstein. And if nothing changes, he added, we soon won’t be able to afford the care we need.
At the Veterans Affairs hospital in Palo Alto, Timothy Blumberg, 75, is being treated for esophageal cancer. Along with his treatment, he helps test the new model for patients with late-stage cancer, meeting regularly with Labiba Shere, a health care coach.
“Is your primary goal to fight this?” she asked.
“I don’t want to die,” he said. “I’ve got lots of things to do, so whatever it takes.”
With a compassionate ear, Shere’s role is to provide Blumberg and other patients with the big picture, helping them decide how cancer treatment fits in with how they want to spend the rest of their lives.
“With me, they're actually discussing things – what they're feeling, what they're going through, what they want to do,” she said. “What they understand is their prognosis, what they understand are the side effects.”
Stanford oncologist Dr. Manali Patel designed the program, hoping to change how we treat – and overtreat – some of America’s sickest and most expensive patients.
It's shocking that patients don't know how long they may or may not have to live, and whether or not they have a curable versus an incurable cancer.
Dr. Manali Patel
Stanford University oncologist
“It's easier, sometimes, to say, ‘Oh, metastatic lung cancer. Let's give you these two drugs or even three drugs,’ and very quickly have a treatment plan put into place with chemotherapy orders signed than it is to sit down with the patient and their families and go through this difficult conversation,” she said.
Those difficult conversations may help patients better understand when treatment is unlikely to cure them.
“It's shocking that patients don't know how long they may or may not have to live, and whether or not they have a curable versus an incurable cancer,” Patel said.
In addition to care coaches, Patel’s model includes a hotline to help patients control symptoms and avoid emergency room trips, to hopefully improve patients’ day-to-day quality of life. With chemotherapy, patients can end up spending more of their remaining days in the hospital, if they end up stricken with disastrous side effects.
“We all pay for these costs, not only from heartbreak – sometimes I have a ton of heartbreak when I see that a patient has passed away in the hospital when they have clearly stated to me that they wanted to die at home – but then also the undue burden on society,” Patel said.
She believes that with better understanding of their disease, up to 70 percent of patients would choose less aggressive, less painful and less expensive care.
Patel thinks her model, by reducing drug use and hospital stays, can trim about $50 billion a year from the health care system’s costs for late-stage cancer treatment, all while helping patients lead more enjoyable lives.
The Stanford doctors estimate their program will cut the number of chemotherapy treatments by possibly 15 to 20 percent. But since the program is designed to save costs (thus lowering revenue), it’s no wonder few hospitals and cancer groups wanted to help test it.
Hospital systems told Patel they liked the idea and wanted to do the right thing for patients, but said that major changes would slash budgets and put practices in peril.
“‘Chemotherapy is how we keep our practice going,’” she recalled them saying. “‘Chemotherapy is how we keep our hospital running.’”
“That is a problematic way to pay any health professional,” Milstein said, agreeing that it’s a conflict of interest.
Data about the patients seen in Patel’s pilot program at the VA will start to come in next year, but no matter the result, the team is certain that the current system is broken.
“We need to change the way we pay for cancer care and almost every other type of care in this country,” Milstein said. “We need to gear it to what patients and their families are looking for, which is improved physical and mental well-being.”
If the trial is a success, health care costs will certainly drop, but Patel is hoping for a payoff that’s harder to quantify.
“I think most importantly we would see improved quality at the end of life – care at the end of life that matches what patients want and how they want to live their life in their last few days, in their last months, in their last three years of life,” she said.
It's what Rafael Arias, who knows his days are numbered, is hoping to have.