Part 2—Good End-of-Life Care Starts with an Honest Conversation

Youth culture is everywhere—billboards, display ads, magazines, movies, social media. There’s a nearly complete absence of older, wrinkled faces. No one wants to be reminded of old age and no one wants to die. So it’s not surprising that most Americans don’t want to think or talk about death. Only one-third of all Americans discuss or make plans for the end of life. The treatments most Americans would choose near the end of their lives are often different from the treatments they end up receiving. This disconnect can lead to unnecessary and prolonged suffering.

Terri Schiavo—A Cautionary Tale

Terri Schiavo

Like most Americans, Terri Schiavo made no plans for the end of her life. Then one day, the unexpected happened. Schiavo had a sudden heart attack and went into a coma in 1990. Schiavo was kept alive by a feeding tube for fifteen years. During that time, her husband tried to withdraw the feeding tube, but was adamantly opposed by Schiavo’s parents, Congress, and President George W. Bush. Their highly publicized legal battle went all the way to the Supreme Court. After fifteen years, the feeding tube was finally removed and Terri Schiavo was allowed to die.

Advance Care Planning and NBC’s Tom Brokaw

This protracted battle over Terri Shiavo might have been avoided if Schiavo had sat down with her family for an end-of-life conversation and disclosed her preferences for medical treatment. It’s called “advance care planning.” These in-depth conversations give people the opportunity to express their concerns and goals. They can set limits on the types of care and medical treatment they want.

Dr. Jennifer Brokaw is an emergency care physician and patient advocate. As a patient advocate, Brokaw has guided many people through advance care planning. In 2012, she conducted an advance care planning session on stage with her father, former NBC anchor Tom Brokaw at a TEDx talk at Stanford University. He told her that what “quality of life” meant to him. “I want to be conscious and given who I am, I want to be able to talk and communicate with people I care about,” said Brokaw.

Two years following their on-stage conversation, the unexpected happened. Tom Brokaw was diagnosed with multiple myeloma, a form of bone cancer that attacks the spine. After the initial shock wore off, Brokaw worked on a treatment plan with his doctors. One option was surgery involving a stem cell transplant, which is known to beat back the disease. He elected not to have surgery because of the risk involved and the long recovery process. Because he had gone through end of life discussions with his daughter and others, Brokaw was able to weigh his options
Dr. Jennifer Brokaw and Tom Brokaw
at Stanford University 2012 TEDx talk
clearly and carefully, without panicking. “He was able to think about this cancer in a less scary and more organized way and to ask the right questions,” said Dr. Jennifer Brokaw, “He was able to say to [his doctors] ‘Look, I value the quality of my life and what I’m able to do, but to me at 75, contemplating going through [surgery] and being in the hospital for nine months sounds like nine months out of my limited time that I wouldn’t want to spend.’ And they heard that loud and clear.”

Brokaw opted to manage the disease with medication. For him, spending quality time with his family was far more important than risking the pain and discomfort of surgery and the long recovery period.

Most doctors and nurses have no training in advance care planning—a subject that was not covered in medical schools when they were students. That’s beginning to change. To encourage advance care planning, Medicare has just started reimbursing physicians for providing this service. While she believes the compensation rate is too low, Dr. Brokaw says it’s a step in the right direction.

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