Almost seven years after some politicians blasted a proposal for Medicare to cover voluntary discussions about end-of-life care, a new regulation now authorizes payment for these very conversations. It was a quiet solution to an issue that physicians, families and health advocates have long pushed for.
Healthcare professionals can now bill Medicare for talking to patients about advance directives and related topics — $86 for the first half-hour ($80 in a hospital) and $75 for each additional 30 minutes. After the brouhaha over the 2009 proposal in Congress, which led some conservatives to accuse bill sponsors of promoting government-sponsored euthanasia that would lead to death panels, the new Medicare regulations were applauded by those who say these discussions should be part and parcel of good health practices, especially as the U.S. population ages.
Previously, Medicare covered these advance-care planning discussions only as part of the “Welcome to Medicare” consult for a new enrollee or if the Medicare patient had come to see the healthcare professional for something else.
“It’s a start,” said Cristina Boccuti, senior associate for Kaiser Family Foundation’s Program on Medicare Policy. “It’s a recognition that this conversation between patient and physician or other healthcare professional is important. To limit coverage simply didn’t acknowledge that this discussion could come up at any time.”
This change also marks a shift in society’s growing willingness to discuss patient preferences about how one may want to spend the last days or weeks of life.
Advance directives are written instructions that express a person’s wishes for healthcare in case the person is incapacitated and can’t make decisions. Advance care planning discussions aim to let physicians and family members know an individual’s goals. It requires a person to learn about available healthcare options and what might best fit one’s values.
“The general public thinks it’s about not being a vegetative state, but it’s much more than that,” said Virginia Morris, author of Talking About Death Won’t Kill You (Workman Publishing, 2001). “They also think they’ve already had the conversation by talking to their child or their spouse. But ‘unplug me’ is not a helpful or specific directive.”
Advance care planning, advocates add, is the difference between a hard death and a good death, a death in which the written wishes of a patient are carried out.
For example, a Kaiser report shows that most adults (about 90 percent) would prefer to receive end-of-life care at home when terminally ill, but only one-third of Medicare beneficiaries actually do. This disconnect is not unusual. Patients say they don’t want extraordinary attempts to save their life if they’re in pain and terminal either, yet many families expect — and demand — unnecessary tests and measures.
“The only thing sadder than the death of a loved one is family members asking the medical team to treat a patient more aggressively when it won’t help,” said Ken Goodman, a professor at the University of Miami’s Miller School of Medicine and director of its Institute for Bioethics and Health Policy. “It can prolong the dying process in a gruesome way.”
Because about three quarters of the people who die in the U.S. are 65 and older, the Medicare decision may prove to be a cost-effective one. Research shows that about 25 percent of traditional Medicare spending for healthcare is spent on a beneficiary’s last year of life, possibly on care the patient might not have wanted in the first place
As a result of Medicare’s new rule, it’s likely that more doctors will have these end-of-life conversations with patients of all ages. Advocates expect commercial insurers that are not already paying for such discussion to follow Medicare’s lead, albeit slowly.
“Some doctors have been having this conversation already, just not being reimbursed for it,” Morris said. “But we shouldn’t be waiting for a black and white line or an emergency. This is a conversation everyone should be having [with their doctors and family].”
Public support for end-of-life discussions is high. A recent Kaiser Family Foundation survey found that 89 percent of adults say doctors should talk about this, with 81 percent saying Medicare should cover those discussions and 83 percent wanting private insurers to do the same. Yet the percentage of people who have actually filled out advance directives is quite low. A Kaiser survey found only 17 percent of adults have even had such a discussion with a healthcare provider, though the share is higher (27 percent) for those 65 years and older.
Those figures may be worse for certain groups. In Miami, that includes Hispanics, African Americans and Asians, according to Sanaz Kashan, a geriatrician and assistant professor at Florida International University’s Herbert Wertheim College of Medicine.
“In a lot of cultures, these questions are seen as disrespectful or a way of taking away hope,” she said.
That’s why it’s imperative for healthcare professionals to bring up the subject in a neutral, non-offensive manner, she added. “I like to focus on a patient’s goals and values, not on a do-not-resuscitate order or one specific situation.”
At FIU, first-year medical students complete Five Wishes, a popular advance directive form that comes in 28 languages. Second-year students must also take a five-week course on end-of-life issues. “Some are uncomfortable when they have to role-play, but I tell them to remember this because it is how their patients feel,” she said.
At a recent class FIU medical students went through three potential scenarios involving a 45-year-old patient diagnosed with pancreatic cancer. Manny Obando, one of the students who participated, said the experience was an eye-opener. “It’s difficult because you want to be informative and empathetic, direct but not condescending,” he said. “Sometimes we see the disease and forget the humanity of the patient and everything he and a family might be going through.”
At UM, practicing these “exquisitely difficult discussions” is part of the medical curriculum as well, said Goodman. End-of-life issues are taught as one of four components in the ethics courses. UM is also hosting a daylong conference Feb. 27 for physicians, residents and other healthcare professionals on end-of-life conversations, with sessions on everything from “Initiating the End-of-Life Conversation” to “Ethical Issues in Death and Dying.”
A one-time conversation with a patient, however, is rarely enough. “This is a process, not something you can do in one sitting,” Kashan said. “It takes time, and you want to make sure to involve the family.”
The goal, advocates say, is for everyone to fill out advance directives, regardless of age or health condition. Natasha Lopez, a 38-year-old administrative assistant from Miami Lakes, filled out the Five Wishes form about three years ago when her stepfather was diagnosed with cancer. She made sure to give copies to her sister and mother about her wishes, including her desire to be cremated, to donate her organs and to not be on life support if brain dead.
Few people her age think about doing this. “We think we’re immortal, but we’re not,” she said. “Young people do get cancer, they do get in accidents. Anything can happen and I want to be prepared.”
Advance directives are legal documents that tell family, friends and healthcare professionals what kind of healthcare you want if you’re too ill to speak for yourself. These include, but are not limited to, a healthcare proxy (naming someone you trust to make health decisions if you can’t) and a living will, which tells what treatment you want if your life is threatened. The latter includes organ or tissue donation after you die, tube feeding, dialysis and breathing machines and resuscitation if your breathing or heart stop.
www.theconversationproject.org This nonprofit’s starter kit is aimed at helping people talk about their wishes for end-of-life care.
“Talking About Death Won’t Kill You,” ($14.95, Workman Publishing), a book by Virginia Morris
www.floridahealthfinder.gov. The agency has a useful planning guide at http://www.floridahealthfinder.gov/reports-guides/end-life-issues.aspx