Millions of Californians are newly eligible for a health care benefit that could determine the treatment they receive in their final days — and most don’t know it.
Medi-Cal, which covers more than 13 million Californians, and Medicare, with more than 5 million California enrollees, now pay for “advance care planning” discussions with doctors.
Advance care planning isn’t about long-term care options, such as nursing homes or assisted living.
It’s about “your wishes for your care if you are not able to speak for yourself,” said Helen McNeal, executive director of the California State University Institute for Palliative Care.
“If you’re incapacitated, if you need someone to speak for you, who do you want to speak for you? And what would be your medical wishes?” she said.
If, for instance, you have a stroke that leaves you unconscious and unable to communicate, with little hope for improvement, would you want to be kept alive with a feeding tube and or ventilator?
“These decisions may have consequences for the quality of life you have for the rest of your life. They may also have consequences for whether you live or die,” McNeal said.
In other words, they’re important. But many doctors and patients don’t yet realize that talking about these decisions — and possibly putting them into writing — is a covered benefit.
Starting in October, Medi-Cal — the state’s version of the federal Medicaid program for low-income residents — began covering advance care planning discussions between doctors (or other qualified providers) and patients (or a family member), said Tony Cava, spokesman for the state Department of Health Care Services, which administers Medi-Cal.
Any Medi-Cal recipient can use the coverage regardless of age, he said. Doctors can bill for the conversation twice a year per patient — plus an additional 30 minutes for one of the conversations — before they have to seek authorization for more coverage.
Medicare, the federal health insurance program for people 65 and older, and for people younger than 65 who have certain disabilities, started covering the discussions on Jan. 1. Medicare does not limit the number of discussions per patient each year.
Some private insurance plans cover these discussions and some don’t, McNeal said. Check with your plan.
Both Medicare and Medi-Cal will cover the conversations even if patients don’t end up completing an “advance care directive” as a result. That’s a document that formalizes your wishes, which should be shared with your family and doctor.
McNeal believes that anyone over 18 should have this discussion and complete an advance directive.
But don’t expect your doctor to initiate the conversation.
“Many physicians may not be very comfortable having this conversation,” said Dr. Richard Thorp, president of the Paradise Medical Group near Chico, and past president of the California Medical Association, which represents the state’s doctors.
A poll of more than 700 doctors, released in April, found that nearly half of them feel unsure some or much of the time about what to say when discussing end-of-life care with patients. (The poll was commissioned in part by the California Health Care Foundation. California Healthline is an editorially independent publication of the California Health Care Foundation.)
Thorp’s patients are mostly older, so he incorporates advance care planning into their annual Medicare Wellness exams. Medicare reimburses him about $86 for the initial 30-minute discussion, and about $75 for each additional 30 minutes, he said.
“There’s an art to having the discussion,” he said. “There’s an art to recognizing when people are uncomfortable.”
McNeal’s institute, in partnership with the Coalition for Compassionate Care of California, offers online training for doctors about advance care planning. One course specifically focuses on how to have an effective conversation with patients.
Because many doctors don’t know about this benefit — or may feel uncomfortable broaching the topic — most people should start by having a conversation with family and loved ones, suggested Mark Beach, an AARP spokesman based in Sacramento.
After your discussion, write down your wishes, he said.
“It’s difficult to discuss, but when you’ve done it, it’s a comfort,” Beach said. “Not only will your wishes be followed, but your loved ones will know what to do.”
A variety of forms and templates are available to consumers. Thorp sometimes uses what’s called a “POLST” form, which is a medical order that must be completed and signed by a health care professional.
It is typically for seriously ill or frail patients, McNeal said, whereas an advance care directive is a legal document for people of any age or condition.
McNeal recommends the “Five Wishes” form, which can be personalized and is available online for $5 at www.AgingWithDignity.org. Other options for advance directives can be found at www.CaringInfo.org or through AARP. (A lawyer can help you prepare an advance directive, but you usually don’t need an attorney to get it done.)
After you have filled out your advance care directive, take it to your doctor and tell her you want to talk with her about it, McNeal said. Don’t forget to give your doctor a copy.
“The role of the physician is really to provide information, not to persuade one way or the other,” Beach said.
Thorp explains to his patients what it means to be intubated, fed artificially and kept on life-support.
Most are open to the discussion, he said, and their responses are mixed. Some older or sicker patients tell him they don’t want any extraordinary measures if they’re incapacitated. Others, who are younger and healthier, say they would probably want medical intervention if they might have a chance to thrive afterward.
“Most people don’t want to be kept on life-support indefinitely. They really don’t want that,” Thorp said. “They want to live a productive life.”
This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.