Amy J. Berman, BS, RN

Note: This column first appeared in the John A. Hartford Foundation’s HealthAGEnda blog on November 12, 2015.

 />The end of October marked five years since I was diagnosed with stage IV inflammatory breast cancer, a life-limiting disease. A small fraction of people (11-20 percent) in my situation survive to five years.</p>
<p>Clearly, I have survived. But I have done so much more than survive. I have thrived. I still work and enjoy a great life. I feel good. And unlike most people with my medical condition, I’ve never been hospitalized—no surgery and none of the combination infusions. I take medication to hold back the cancer but, with my team, I choose treatments with the least burden and side effects. And this has helped me thrive!</p>
<p>The secret sauce is the communication I have with my health care team. They told me clearly about the likely course of my disease and laid out options. I chose to focus on the best life possible for my remaining time.</p>
<p>However, conversations about the goals and values of the seriously ill, known as advance care planning, don’t happen routinely. One reason is that they take time and, for the majority of those with serious illnesses—older adults—Medicare did not pay for these critical conversations<del cite= … until now.

The Centers for Medicare and Medicaid Services (CMS) recently announced that, beginning in 2016, Medicare will pay for advance care planning. If done well, this will give people the chance to talk about their care as they go through serious illness and at the end of life. This has been lifesaving to me. I believe it is game-changing for us all.

CMS’ decision follows the recommendation of the American Medical Association (AMA), a wide range of stakeholders, and the overwhelming majority of the American people. According to the Kaiser Health Tracking Poll in September, 89 percent of the public favors having doctors discuss end-of-life care issues with their patients. And 81 percent say Medicare should cover the cost of those discussions.

Now, it will. The coverage, which takes effect with the new Medicare Physician Fee Schedule on Jan. 1, 2016, establishes a separate payment for advance care planning services provided to Medicare beneficiaries. If the discussion happens as part of the annual wellness visit, physicians or other health professionals, such as nurse practitioners, can bill Medicare separately for it, and there is no cost-sharing liability for the patient. For advance care planning discussions that happen outside the annual wellness visit, providers can bill for it and Medicare beneficiaries will be subject to cost sharing, as they are for other physician services. And yes, the decision whether to have the discussion is entirely up to the patient. It’s voluntary, not required.

The new payment acknowledges what should be obvious: The time that patients spend talking about their wishes for end-of-life care with physicians is valuable. And as I noted earlier, there’s another thing that’s obvious: Those discussions are not currently happening for most people. That same Kaiser poll found that only 17 percent of people reported having had a discussion about end-of-life care with their doctor.

The gap between what people want (89 percent think doctors should discuss end-of-life care with patients) and what they get (17 percent have actually had that discussion) is like the Grand Canyon.

And the percentages of those having advance care planning discussions are only somewhat higher among people who need them the most: older adults (27 percent) and those who report having a debilitating disability or chronic condition (31 percent). Meanwhile, only a third of the public (33 percent) say they have participated in a conversation with a doctor about a relative’s wishes concerning end-of-life care.

The new Medicare payment does not mean that advance care planning discussions between physicians and patients will magically become the norm at the stroke of midnight on New Year’s Eve. While establishing a separate payment for the services removes one major obstacle, it doesn’t address the discomfort many patients and their families feel about discussing end-of-life issues with their doctor. And it doesn’t address the discomfort among some physicians and other health care providers who do not feel they have the proper training to engage in such a sensitive and emotional conversation.

The most recent Kaiser survey finds that only slightly more than half of people (57 percent) say they would be very comfortable talking about end-of-life care with their doctor or other health care provider. That’s roughly the same percentage who would be very comfortable discussing the issue with their children (55 percent); close friends (51 percent); their parents (51 percent); or a minister, priest or other religious or spiritual advisor (50 percent).

So who are people most comfortable with when it comes to talking about end-of-life care? Their spouse or partner (83 percent).

While I understand the hesitancy some may feel about discussing something so personal and emotional with their health care team, as I wrote recently, I have found the advance care planning discussions I have had with my own team to be nothing less than lifesaving. From a personal as well as a professional perspective (as a nurse, a nationally recognized expert in the care of older adults, and a senior program officer at the John A. Hartford Foundation), I understand how empowering these conversations can be when done right, and how crucial they are to ensuring that people’s wishes are carried out regarding the care they receive at the end of life.

When the CMS decision was announced, the CBS Evening News interviewed me about my experiences, and also talked with longtime John A. Hartford Foundation grantee and partner, Diane Meier, MD, director of the Center to Advance Palliative Care. I recounted my decision to choose palliative care, saying: “I really wanted to focus on living the best possible quality of life.”

Others in different circumstances may choose different care. That’s the whole point in having the discussion: to ensure that you are the one making the decisions, not someone else.

Related: Watch the CBS Evening News report: Medicare to Now Pay for End of Life Counseling for Terminally Ill.

Now that Medicare will pay for advance care planning, I have three hopes:

My first is that people understand the value of advance care planning and demand time with their clinical team to discuss their wishes. As I mentioned before, this encounter is voluntary. There must be greater public education in order to drive demand. The John A. Hartford Foundation recognizes the work of Ellen Goodman and the Conversation Project as a leader in this area.

My second hope is for better clinician training around these conversations. The John A Hartford Foundation recognizes the work of the Center to Advance Palliative CareVital TalkRespecting Choices, and POLST.

Finally, I hope that this lifesaving conversation continues to benefit me, and soon will benefit so many others. My cancer continues to spread. But I live well, largely as a result of the conversation.

Thank you to the leadership at CMS.

Amy J. Berman, BS, RN, is a Senior Program Officer at the John A. Hartford Foundation, and heads the Integrating and Improving Services program, focusing on developing innovative, cost-effective models of care for older adults.  She also directs a number of collaborations with the U.S. Administration on Aging/AARP that address the needs of family caregivers.  Prior to joining Hartford, Ms. Berman served as Nursing Education Initiatives Director at the Hartford Institute for Geriatric Nursing at New York University’s College of Nursing, and before that she worked in home health care administration. 

For more information, read the Advance Care Planning section in the CMS Fact Sheet: Proposed policy, payment, and quality provisions changes to the Medicare Physician Fee Schedule for Calendar Year 2016. Also, the Henry J. Kaiser Family Foundation offers an excellent FAQ on Medicare’s Role in End-of-Life Care.