A new online continuing education program from Sarah Lawrence College will help doctors guide patients through planning for difficult health care choices: how to be treated during the final days, months or even years of life.
End of life, or palliative care, encompasses all health care and medical decisions in the days or years before a patient’s death, including long-term terminal illness or sudden death.
“If that sounds very expansive, it’s because it is,” said Rebecca O. Johnson, the director of the End of Life Care program at Sarah Lawrence. The program’s motto is “Dignity in health care at all ages and stages in life.”
Sarah Lawrence launched its End of Life Care program in 2015 as part of its Center for Continuing Education and Professional Studies. The program is based on recommendations from the national Institute of Medicine’s Committee on Approaching Death.
Since the school launched the program, it has offered workshops and webinars, but it’s the certificate program it expects to launch before the end of the year that will be its largest effort so far. The certificate will be for Advance Care Planning for Primary Care Practitioners, a four-hour self-guided course.
Johnson said a common misconception about end of life care is that it applies only to hospice care.
“What our program is trying to do is address the possibility that we can all have the kind of care we want, throughout our life, but especially in decision-making for end of life care,” Johnson said.
End of life care got a major boost in January 2016, when the Centers for Medicare and Medicaid Services began reimbursing health care providers for end of life care planning in medical offices and hospitals. About 80 percent of the 2.6 million Americans who died in 2014 were on Medicare, according to a report from the Kaiser Family Foundation, making it the largest insurer of health care during the final year of life.
Kim Callinan, chief program officer for Compassion & Choices, a national nonprofit focused on the care and rights of terminally ill patients, said that there are multiple course offerings for end of life care, but the Sarah Lawrence program is the first she has seen to incorporate the Centers for Medicare and Medicaid Services reimbursement.
“That regulation is relatively new, and the Sarah Lawrence program seems to be addressing how the doctors work on that,” Callinan said. “And I think because it’s such a new regulation, they are definitely on the cutting edge of that.”
Callinan cited a Kaiser Family Foundation study that found that while almost 9 in 10 adults say doctors should discuss end of life care issues with their patients, only 17 percent of adults have actually had such talks with their doctors.
“There’s really a host of reasons why people are hesitant to have these conversations,” Callinan said, such as difficulty accepting a diagnosis or not having full information from a doctor on the amount of time they have left. “But the good news is that the (Medicare and Medicaid) codes at least offer an opportunity for doctors to come forward and be reimbursed so we can see more of those conversations taking place.”
Johnson, too, said that the reimbursement can help clear a hurdle preventing end of life discussions from taking place.
“Physicians have recognized – particularly primary care, who are for the most part who a Medicare or Medicaid patient would see – that this takes time and is a process, and they haven’t been reimbursed for it up until this year,” Johnson said.
Now health care providers can be reimbursed for end of life care or advance care planning sessions of up to an hour.
But another major hurdle, Johnson said, is doctors feeling “terrified” because they’re not trained on how to engage patients on end of life care choices.
“I’ve heard medical students tell me they spent a day, a couple days, on end of life issues in medical school,” Johnson said. “So that’s where we are starting. Let’s help physicians gain the ability to have the conversations.”
The certificate-granting online program comprises four, one-hour courses. It instructs primary care doctors on how to have quality of life conversations for advance care planning, the legal and ethical considerations in advance care planning and completing and filing advance care planning forms. The final course has the doctors simulating an advance care planning conversation.
While doctors aren’t the only people involved in end of life care discussions, they can help lead patients and families in understanding and considering different health care options, Johnson said.
“Having the ability to have these conversations can jumpstart the discussions in a person’s life with their family and they can come back to it as necessary,” Johnson said.
And there’s benefits for when doctors engage. Receiving advance care planning can boost patient satisfaction, Johnson said.
“When physicians have these conversations, physician patient communication is much better,” Johnson said. “And there’s all kind of issues that go into patient-physician communication, culture, income, class, religious beliefs. But advance care planning helps a physician over time understand that. And it helps a family express what it needs to for a higher trust level and higher satisfaction.”
Sarah Lawrence will partner with the National Hospice and Palliative Care Organization to make its online end of life care certification course available nationwide. The certificate course is self-guided and costs $1,000 for all four of its one-hour courses.
Johnson said she hopes the center can soon launch an additional course focused on providing guidance to nonprofessional home health caregivers, such as the growing population of adults treating a parent or other family member.
“One of the complaints that caregivers often have is we don’t know what we’re doing, and we’re terrified,” Johnson said. “And they should be, they’re delivering medical procedures basically. So for us, that’s an area we’ve thought about.”