My father suffers from end-stage Parkinson’s disease and associated dementia. Several weeks ago he was admitted to the hospital with a severe case of pneumonia. One week after discharge my family elected to withdraw his remaining IV and initiate him in home hospice.
Dad’s advance health care directives included his wish not to be kept alive by artificial means. Because he was drinking only about one-third the minimal amount of fluid needed to say alive, I thought that, in his current state, he would not go on much more than one additional week. In fact, there were times when Dad looked like he would not live another day.
To our amazement he continued to linger and gradually increased his fluid and calorie intake. He then began to stand with assistance. Friday he started walking on his own, spoke with clarity and returned to his most beloved hobby, bonsai.
U.S. Rep. Earl Blumenauer, a nine-term Democrat from Oregon, together with bipartisan sponsorship, recently introduced the Personalize Your Care Act of 2013, which would provide for Medicare and Medicaid coverage of voluntary discussions of advance care planning every five years. A companion bill has been introduced in the Senate.
It was also Blumenauer who, three years ago, first introduced this legislation. At that time, the nation was gripped by the great social and political upheaval caused by the introduction of health care reform now known as Obamacare. That’s when we heard warnings that the government would set up death panels and pull the plug on grandma.
"The bill sounds good here but still frightens me," said Steven Brown, a professor at the Center on Disability Studies, University of Hawaii at Manoa. "These regulations can and have been abused to the point that people have been killed."
The slippery slope is a real concern. However, it strikes me that with or without a conversation with people about their end-of-life wishes, patients are always at some risk of being bullied both by health providers and even their own families. Abuse can cut both ways. A person might suffer the withdrawal of desired care but could just as easily receive care to prolong life that he or she would want to decline.
St. Francis Healthcare System is among the most forward-thinking organizations in Hawaii when it comes to dying with dignity, and works diligently to respect the wishes of each individual.
"I think all too often people equate more care with better care, and this so often is not the case," said Dr. Anna Loengard, chief medical officer of St. Francis Healthcare System.
The Personalize Your Care Act of 2013 is simply an opportunity for the people of America to have an early conversation with their physicians about the nature of the treatment they wish to receive as death draws near. As a culture, we are not very good at having this conversation. Physicians too often experience the death of a patient as a professional failure, and many of us, especially baby boomers, have a tough time accepting our mortality. If we can’t face our mortality, how can we have a discussion about it?
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Ira Zunin, M.D., M.P.H., M.B.A., is medical director of Manakai o Malama Integrative Healthcare Group and Rehabilitation Center and CEO of Global Advisory Services Inc. Please submit your questions to info@manakaiomalama.com.
