A recent New York Times article highlighted how even if a patient puts their wishes about end-of-life care into writing, their best intents can just as easily get buried in an electronic medical record as the paper copy left behind at home when most needed.
In the article, “You’ve Detailed Your Last Wishes, but Doctors May Not See Them” by physician Daniela Lamas, the dying patient’s wishes were honored – but just barely.
Transportable Physician Orders for Patient Preferences – the pink TPOPP form – is intended for patients in the last year of life with a terminal or chronic illness and sets out their wishes about the extent of care they desire. Since its launch as an MSSC-supported initiative in 2014 by TPOPP Wichita, awareness has grown, including through showings of Atul Gawande’s “Being Mortal” documentary. MSSC members Drs. Terry Merrifield, Barbara Coats and Kim Hartwell are active on TPOPP’s steering committee led by Carolyn Harrison.
“TPOPP is the second most important advance directive, after the durable power of attorney,” Dr. Coats said.
Overcoming interoperability issues with EMRs is important, as is standardizing how they flag advanced directives, Drs. Merrifield and Coats say. But improving EMRs is a technical problem, and no small one at that. The bigger, longer-term challenge is getting patients and physicians to have the care and end-of-life discussions in the first place. That will take building awareness and comfort with the discussions in the community, providing training and resources to doctors and others, and overcoming technical issues.
Dr. Merrifield encourages health care providers to consider the question: “What if there were a fairly simple way to greatly enhance the quality of care and life for your patients and the community? Would you be interested in that and be willing to talk with people about their values, goals, and preferences in their health care?”
Dr. Merrifield acknowledges the conversations can be difficult. Research shows that while three-quarters of physicians believe they should be the ones initiating end-of-life discussions, fewer than a third had any training to do so. She said discussions about health care durable power of attorney documents could serve as a gateway for doctors beginning uncomfortable talks with patients, as it involves a more straightforward legal discussion as opposed to the deeper values one of a TPOPP. In her practice, Dr. Merrifield made advance directive discussions a part of the annual physical.
Of course, filling out a TPOPP or any other directive is only helpful if the doctors or others treating a patient can see and know about it at crucial moments. For now, until EMRs and other modes of carrying that information improve, there’s no replacement for a patient or their representative carrying copies with them. And, Dr. Coats said, it wouldn’t hurt to take a picture of it with your phone so you – or your designee – have it right at hand.
- TPOPPWichita.org has FAQS and other resources about the forms
- To order the TPOPP form, call the MSSC at 683-7557.
- Honoring Choices Massachusetts has free handouts for physicians providing suggestions on initiating discussions with patients. See www.honoringchoicesmass.com/resources/connect-quality-care/5-things-discussion-guides/