News and Narratives of Interest – 2015 (#2)

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Remember “death panels,” the term Sarah Palin famously coined during debates over the then proposed Affordable Care Act.  In 2009, the section of that Act (section 1233) that would have paid physicians for providing counseling about advance directives to Medicare patients was dropped as a result of the furor over what has been called the “death panel myth.”  Thus, while many doctors voluntarily provide this counseling without charge and without reimbursement, most do not.  Already strapped for time, and reluctant to broach topics related to death and dying, doctors have opted to forgo these conversations.

Happily, there are signs of change on the horizon.  Most significantly, perhaps, Medicare announced in early July 2015 that, beginning in January 2016, it will reimburse doctors, nurse practitioners, physician assistants, and other qualified providers for time spent counseling patients about advance care planning.  In other “News and Narratives” articles we have written about how difficult physicians—and patients—find these conversations, and reimbursement for counseling time will not magically open up these frank discussions, but removing the financial barriers is necessary, if not sufficient, to change the culture of silence around our end of life choices and wishes.

Recently, a fellow Board Member at WELC called our attention to a new planning guide that addresses a population often voiceless:  adolescents, who do not have legal authority to make their own medical decisions, and young adults, who are often silenced by our inability to contemplate the tragedy of death at a young age.  The guide is called “Voicing My Choices,” and it is available through Aging with Dignity.  Researchers at NIH used the comments of 52 young people with serious illness to develop the guide.  In addition to expressing who the young person would want to make medical decisions if he or she could not make them, and wishes about life support, the guide includes sections on “How I want to be comforted,” “How I would like to be supported,” “What I would like my family and friends to know about me,” “My spiritual thoughts and wishes,” “How I wish to be remembered,” and “How I would like to share my belongings.”

And finally, we recommend two guides for having family discussions.  The first is a guide for providers who are conducting a family meeting.  “The Family Meeting:  Starting the Conversation” is pretty basic but can be very helpful as a step by step guide.  Other guides offered by the Center to Advance Palliative Care (CAPC) offer help in planning and running a family meeting.

The second guide is really a White Paper offered by Common Practice, the group that produced “My Gift of Grace,” a set of cards that many of us have found provides a helpful aide to discussing serious illness and end of life.  Common Practice’s White Paper, “Multiple Goals: a Framework for Understanding and Improving Quality in End of Life Communication,” argues that it is not enough to complete advance directives, or even to “have the conversation.”  These conversations need to address multiple, often conflicting goals:  task oriented goals about treatment preferences, support, information needs, goals about relationships, and goals that strengthen or affirm identity and values.  Tools like “My Gift of Grace” and “Voicing My Choices” help deepen conversations and integrate them into our lives and relationships.

And finally, as a gift to you, our readers, is a link to a new animated video called “Plain Talk.”  It is fun to watch but deadly serious to think about.  The video is co-created and narrated by one of my Narrative Medicine students, Deborah Starr, a woman who, like many of us, has had both personal and professional experience with illness, dying, and death.

Marsh Hurst, WELC Board Member

PDF of News and Narratives of Interest-July2015