During the development of the Patient Protection and Affordable Care Act (ACA), there was a proposal to pay doctors to discuss end-of-life issues with their patients. Some compared this to having “death panels,” although the proposal never went beyond a discussion between a doctor and their patient. I thought that it would be useful to look at this issue from the perspective of the type of patient that I have dedicated my life to serving.
Daisy Smith was born in Oklahoma City during the 1918 influenza epidemic. She survived the Dust Bowl and the Great Depression. During World War II, she worked in a local factory funded by the U.S. Defense Department. She married a returning Veteran, and they had five children. Those five children would produce 15 grandchildren, 30 great-grandchildren, and most recently two great-great-grandchildren. Daisy was the matriarch of the family. She would always dress impeccably and was active in her local church. Daisy was widowed in 2000, and the family began noticing that her memory was declining. Today she lives in a nursing home, paid for by Medicaid, and does not recognize any of her family members.
Daisy’s health care needs are paid for by Medicare and Medicaid. A doctor or nurse practitioner sees her at least once a month. In order for them to bill Medicare, the visit must be “medically necessary”; but this is not an issue, as Daisy suffers from severe Alzheimer’s disease, diabetes mellitus, congestive heart failure, chronic renal insufficiency, and a host of other medical conditions. As there are “performance” incentives now built into the Medicare program, Daisy’s physician gets bonus payments if he makes sure that she is being treated for some of these conditions. Between Medicare Part D and Medicaid, her medications are all paid for.
One recent morning, Daisy woke up with a slight cough and fever. The nurse immediately called her doctor, who ordered a chest x-ray. A few hours later, it was determined that Daisy had pneumonia. She was given an oral antibiotic, but her condition worsened throughout the day. She began wheezing and her oxygen saturation levels started to decline.
In 2009, during the development of the ACA, some charged that Section 1233 of HR 3200 would create “death panels” when in fact it would just allow for reimbursement to physicians for providing counseling to patients with regard to end-of-life issues. This bill was never enacted, nothing similar ended up in the ACA, and her health care providers now have no financial incentive to discuss her end-of-life wishes with her. On the other hand, they have plenty of incentive to aggressively treat her medical conditions.
When Daisy’s physician received a call that evening about her condition, he asked about her resuscitation status and was told that she was a “full CPR” (do everything possible to keep her alive, including CPR). He felt that he had no choice but to send her to the emergency room via 911. Once Daisy arrived at the emergency room, she was in extreme distress and placed on a ventilator. Daisy spent a week in the intensive care unit, where she was agitated and had no understanding of what was being done to her. She did improve and ultimately returned to her nursing facility, where, at an additional cost to Medicare, she received skilled nursing care for the next several weeks.
One day, a young geriatrician was covering for Daisy’s doctor and reviewed Daisy’s medical record. As he read through the chart, he became more and more unnerved by what he was reading. He picked up the phone and called Daisy’s oldest daughter, who had durable power of attorney for Daisy’s health care. After introducing himself, he asked one question: “What would Daisy say if she knew her present condition?”
The daughter’s answer was immediate: “She would tell us to shoot her.” Upon further discussion, it became clear that Daisy had long ago told her family that she did not want to be a burden to them or to society. She had seen friends end up in nursing homes and did not want to end up that way, especially if she could no longer recognize her friends and family. Yet no one had ever asked Daisy’s daughter this simple question. Every time that Daisy was sick, the family just went along with what the doctors wanted to do, because they figured that Daisy was getting the best care that money could buy.
Today, billions of dollars are spent annually on people just like Daisy, providing expensive health care, much of it actually unproven, just because it is covered by Medicare. Furthermore, Medicaid provides the majority of funding for people like Daisy who are living in nursing homes, having spent down their assets. Not only should there be nothing wrong with a physician inquiring about a patient’s wishes, but it should be part of a comprehensive approach to caring for the whole person. Reimbursing a physician for their time spent in having these discussions is not an incentive for a “death panel” decision; it would be compensating them for doing their job. If all we do is compensate physicians for treating people aggressively regardless of the circumstances, we will get what we pay for: an expensive health care system run amok.