End-of-Life Choice, Palliative Care and Counseling

End-of-life consultations: Adults Onlyby Barbara

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Our nation approaches a fateful Autumn. Many analysts believe Congressional action on healthcare will dramatically affect the future of America, this Administration and the major political parties. We are engaged in a struggle over whether our nation will approach issues of end-of-life care as adults, or remain captive in childishness.  Compassion & Choices has launched a petition drive calling for adult decisions over childish reactions.

I have written that some national leaders apparently prefer to confine us in perpetual childhood, so we need never acknowledge, grieve over or plan for our own deaths or the deaths of those we love. A peculiarly childish approach to end-of-life issues permeated the August recess, complete with terrifying fabrications and fear-based tantrums. In their coverage of town hall discussions media outlets reinforced a perception that we are children, more interested in playground bullies and shouting matches than in substantial discussion of the issues and the facts. The Washington Post ombudsman writes that its readers think their recent coverage has focused too much on the combat and too little on what’s actually being proposed.

Will Congress ultimately trust that American adults are capable of deciding important matters in their lives and eventual deaths? Or will they conclude that we don’t want to know about our choices, can’t handle important end-of-life decisions, and are better off without such considerations in the public dialogue? In the case of Medicare reimbursement for end-of-life consultations with your doctor (the infamous Section 1233), that would mean no improvement in the meager, inaccurate information most people possess as they approach the most difficult decisions of their lives.

While some in Congress are still willing to support end-of-life conversations, even they acknowledge Medicare coverage for consultations is in danger of being dropped amid the recent controversy. Our petition urges Congress to reimburse end-of-life consultations.

Loss and pain are inevitable and it’s right for the healthcare system to encourage rational, informed, adult responses to impending death. It is natural to shield children from adult concerns. But individuals held captive too long in a childish role cannot achieve full human potential. As Paul wrote to the Corinthians, “When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became an adult, I put childish ways behind me.”

What does being treated as an adult look like? One sign is the medical system gives you full and frank information, compassionately supports you through painful emotions and trusts you to make decisions for yourself, based on the facts. H. Gilbert Welch, head of a research team at Dartmouth University wrote last week in the Los Angeles Times, “American men have been engaged in prostate cancer screening for almost two decades with relatively little effort given to communicating the trade-off between the benefit and the potential harm of unnecessary treatment. The time has come to make that trade-off clear.”  So far no one has accused Dr. Welch of establishing death panels, but if he keeps advocating for enhanced communication and patient choice, he may have reason to worry.

Powerful forces resist bestowing authority on individuals to choose appropriate medical care for themselves. Behind the hyperbole about “death panels” lies a more nuanced attack on advanced directives themselves. The language is more subtle but its intent is unmistakably patronizing. These advocates would “protect senior citizens,” from their own stated wishes, claiming seniors are “vulnerable people,” “easily susceptible to pressure,” and not capable of making important decisions. This line of thinking asserts advance directives should be “only one factor a doctor takes into consideration” because the patient who wrote it “didn’t know at the time what it would be like.”  Some even assert your living will should be ignored completely because others know what’s best for you. Father knows best.

Most Americans disagree.  And it’s a good thing. Because relinquishing autonomy and self-determination as first principles of medical care would signal a radical, dangerous departure from established medical ethics. As Ronald Dworkin so eloquently wrote, “Making someone die in a way that others approve, but he believes a horrifying contradiction of his life, is a devastating, odious form of tyranny.”

Coincidently, just as the nation argued over whether to encourage Medicare recipients to talk about and document their wishes, Terri Schiavo’s father suffered a heart attack and died. I could not help thinking an American icon of parental prerogative had passed.

Mrs. Schiavo, a permanently unconscious adult, left only unwritten, informal guidance about her end-of-life wishes. Her husband fought to give effect to what he understood to be her adult values, her beliefs, and his best understanding of her decision if she were able to speak for herself.  Her parents fought for the opposite, asserting that her stated desires should be given no more effect than a child’s. Although powerful traditional authoritarian advocates fought by her parents’ side, ultimately the courts ruled Mrs. Schiavo’s own statements should prevail. Terri Schiavo’s story revealed to the nation just how tortured and tragic end-of-life decisions can be, and left many Americans determined to avoid such conflict in their own families.

Compassion & Choices‘ online petition asks Congress to acknowledge that end-of-life decisions are unavoidable, face up to their responsibility to help us behave as adults and trust that Americans will support policies based on facts, not fabrications.

Don’t allow the imprisonment of Americans in a permanent childhood. Tell Congress you expect them to rise above childish fantasies, recognize you as an adult and not back down on voluntary end-of-life consultations.