In July, the Centers for Medicare and Medicaid Services (CMS) announced a proposal to reimburse health care providers for having end-of-life care consultations with patients. In a letter submitted to CMS as a public comment on the regulation, Harriet Warshaw, TCP’s Executive Director, discusses why the proposed payment regulations are so important for promoting end-of-life conversations and patient-centered care. Drawing on both personal stories and the experiences of The Conversation Project, she makes a powerful argument for the approval of the Medicare proposal.

Dear Centers for Medicare and Medicaid Services,

I am writing on behalf of The Conversation Project (TCP) to urge the Centers for Medicare and Medicaid Services to approve the recently proposed Advance Care Planning conversations payment code for physicians, physician assistants and nurse practitioners (Regulation CMS-1631-P).

We all have our own end of life care stories. Some of our stories are of good deaths when we have been fortunate enough to have had a conversation with our loved ones about what mattered to them at the end of their lives and then be able to advocate for them to get this type of care. This was my experience with both of my parents. But not everyone is this fortunate. In the case of Ellen Goodman, who helped found TCP, she was the caregiver for her beloved mother but never had serious end of life care discussions with her mother. As a result she was never quite sure if she was making the right healthcare decisions on her mother’s behalf, often feeling blindsided by the experience. After her mother’s death Ellen recognized the immense value there is for the health and welfare of the patient, the family and the clinicians if a conversation about what matters to you at the end of life takes place early, around the kitchen table and then with the clinician before there is a healthcare crisis.  Based on this belief, TCP was founded in 2011 in collaboration with the Institute for Healthcare Improvement with the express purpose of engaging both the public and the healthcare system in ensuring that end of life conversations take place early and often.

The Conversation Project is actively engaged with over 250 community organizations and forty healthcare systems in 42 states. These groups are collaborating with us in spreading the message that end of life conversations matter and make a significant difference in people’s lives. Our Conversation Starter-Kit, available free of charge on our website, is a tool that assists individuals with starting this conversation. The kit has resonated with the public and has been downloaded over 225,000 times. While this is an impressive number it is just the tip of the iceberg in terms of how many conversations need to take place. Based on a national survey we undertook in 2013 we know that 90% of individuals want to have these conversations but only 30% are having them. We also know that only 17% of residents of Massachusetts are having these conversations with their clinicians. As we speak to clinicians all over the country three reasons are given for the limited number of end of life conversations taking place: Training, Time and Payment.  In our experience training will take place and time will be found IF there is payment for these critical conversations. It is for this reason that CMS’s proposed payment to clinicians is critical for moving the needle on advance care planning.

We believe that end of life conversations need to serve as the basis for care planning and are the ultimate in patient centered care. We urge your approval of the proposed payment regulations.

Respectfully Submitted,

Harriet Warshaw

Executive Director, The Conversation Project