Dr. Ira Byock would make weeklong trips to his hometown in New Jersey to drive his dad to radiation therapy as he battled pancreatic cancer.
The daily 2½-hour ritual would stir up memories as Byock and his dad took the side roads through familiar neighborhoods. His father would talk about selling the family business, a small cigarette wholesale and vending business built from scratch. He shared what it was like to be dying, striking a similar tone to when he taught Byock the difference between right and wrong decades earlier.
During one appointment, Byock’s dad rested his eyes as they waited in the cancer center, and said, “They give you only six months to live, and then, little by little, they take it back from you.”
These conversations are at the core of Providence St. Joseph’s new end-of-life initiatives.
“We are trying to create a new environment where it’s easier to ask these questions, listen better and document all this in the electronic health record so it’s part of the routine,” said Byock, who is the founder and chief medical officer of Providence St. Joseph Health’s Institute for Human Caring.
The Renton, Wash.-based health system is offering a new advanced directive online toolkit—available in multiple languages and tailored for each of the seven states where the health system operates—that helps patients choose what type of end-of-life care they want, accessible through Providence St. Joseph’s electronic health record. The EHR will alert doctors if treatments contradict a patient’s requests and refer patients to goals-of-care plans and advance directives.
The organization is training its physicians and staff across its 51-hospital network to help them broach these end-of-life conversations and clarify realistic outcomes prior to potentially burdensome treatments.
Providence St. Joseph also sends patients and families videos and other resources to help them understand their medical conditions and options for care near the end of life. Its Institute for Human Caring also created a storytelling project called Hear Me Now, in partnership with StoryCorps, which offers patients, family members and professional caregivers a platform to share personal stories related to “whole-person care.”
“For some clinicians, it’s easier to say we will just do more,” said Dr. Rod Hochman, president and CEO of Providence St. Joseph. “That resonates with my own family.”
When Hochman’s dad had a stroke, he had to battle with a physician who wanted to prescribe hypothermic therapy and other aggressive treatments, even though the scans showed that the extra effort would ultimately be futile, Hochman said.
“It gave me an appreciation for what we put our patients through all the time. And it helps me appreciate what our clinicians need to do,” he said.
More hospitals are implementing end-of-life or palliative-care programs. The proportion of U.S. hospitals with more than 50 beds that had a palliative-care program tripled from 2000 to 2015, from 25% to 75%, according to a studypublished in Health Affairs last year.
Researchers credited the change to the Center to Advance Palliative Care’s educational efforts and leadership training initiative. About two-thirds of the 1,800 hospitals that now have palliative-care programs participated in the center’s program, even though the dominant fee-for-service reimbursement model does not encourage palliative care.
But new payment models are driving more discussions about palliative care. New codes in the 2016 physician fee schedule meant that doctors would get paid for end-of-life planning.
Nearly 23,000 providers billed Medicare for end-of-life planning appointments on behalf of about 575,000 Medicare beneficiaries in 2016, according to the CMS. Utilization picked up in the second half of the year after 220,000 patients used the services through the first six months of 2016. Providers received $43 million in Medicare reimbursement that year.
The economics are not a barrier anymore, but there are still cultural hurdles, Byock said.
“This is still misinterpreted as being about death or only necessary when someone is seriously ill,” Byock said. “People have to understand that excellence in care needs to be highly tailored to them as a person and not just a problem list.”
Palliative care is an important part of the industry’s value-based mantra and one of its aims to reduce unnecessary care, but it requires difficult conversations about quality of life. Families must weigh whether often financially and physically taxing treatment is worthwhile. Physicians may be reluctant to initiate the conversation if they are already feeling overwhelmed.
About 13% of total healthcare spending was devoted to individuals in their last year of life, according to a study published in the American Public Health Association.
“As health systems do end-of-life care better, it’s better for the overall cost of care and the patients, but also for health systems,” Hochman said.
During another ride back from treatment, Byock’s dad declined an offer to join friends for coffee. He told his son that being sick is embarrassing, and it makes other people uncomfortable. Byock tightened his jaw as he blinked back tears.
His dad’s doctor had the best intentions in offering the radiation therapy, but he was holding on to an unlikely reality at his father’s expense, Byock said.
“We have to acknowledge that we are all mortal,” he said. “We should explore the full use of medical therapy, but in the larger context of a full and healthy human life.”
