The tragic legal battle between legendary radio host Casey Kasem’s family members over his end-of-life care before he died in June is a teachable moment for millions of Americans. It illustrates the challenges and importance of end-of-life planning. It also demonstrates the urgency to reform the system so millions of baby boomers and their aging parents do not experience a similar nightmare.
Kasem suffered unnecessarily even though he represented the 26 percent of Americans who have completed an advance directive to ensure their end-of-life healthcare wishes are carried out if they are unable to speak for themselves.
Kasem’s advance directive was unambiguous. It stated: “If the extension of my life would result in a mere biological existence, devoid of cognitive function, with no reasonable hope for normal functioning, then I do not desire any form of life-sustaining procedures, including nutrition and hydration.”
Despite empowering his daughter from his first marriage, Kerri, with his healthcare proxy to carry out his wishes, Kasem’s second wife, Jean Kasem, convinced a judge to issue a decision ordering the continued feeding and hydration of the 82-year-old Kasem. Finally, after Kasem suffered in agony for days, the judge reversed his decision at the request of Kerri, her two siblings, Kasem’s brother and his sister-in-law. Mercifully, he died two days later.
The lesson for all of us is that completing an advance directive and assigning a healthcare proxy are not necessarily enough to ensure your end-of-life wishes will be honored. You also need to discuss your advance directive with all your immediate family members to ensure that they all understand and accept your end-of-life wishes.
Unfortunately, for a variety of reasons horrendous experiences like Kasem’s are far too common, according to a recent poll conducted by the research division of Purple Strategies, one of the top-five most accurate polling firms in the 2012 election.
The survey of more than 1,000 adults 50+ shows that one out of four older Americans say that either they or a family member have experienced excessive or unwanted medical treatment, the equivalent of about 25 million people. People can receive excessive or unwanted medical treatment because a healthcare proxy, family member, doctor or other healthcare provider — such as personnel in an emergency room, intensive care unit, nursing home or assisted living facility — did not honor or understand their wishes.
The poll shows older Americans want both incentives and sanctions to ensure physicians and healthcare providers respect patients’ preferences. Six out of 10 survey respondents support reimbursing doctors for end-of-life consultations; nearly two out of three support withholding payment to healthcare providers who fail to honor their end-of-life medical wishes.
Patients have a federally protected right to have their preferences honored no matter how they communicate them. The Patient Self-Determination Act of 1990 authorizes Medicare and Medicaid to deny payment to healthcare providers who fail to inform patients of their rights about end-of-life choices.
But Congress can do more to strengthen protections for end-of-life autonomy. It could start by passing the “Personalize Your Care Act of 2013” (H.R. 1773), authored by Congressman Earl Blumenauer (OR) and cosponsored by a bipartisan group of 58 other House members from 26 states. It would provide Medicare and Medicaid coverage for voluntary consultations between patients and their doctors about advance care planning.
We cannot put the entire burden on consumers, especially on seniors, to protect themselves from unwanted care during a medical crisis. We need carrot-and-stick policies that encourage medical providers to learn their patients’ end-of-life healthcare wishes — and to honor them. It’s up to Congress and the administration to formulate a national solution.
Daniel Wilson is the national and federal programs director for Compassion & Choices, the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life.
Sean Crowley is media relations manager for Compassion & Choices and a former press secretary for Rep. Sander Levin (D-Mich.), the ranking member of the House Appropriations Committee, which has jurisdiction over federal health care programs.