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Death with Dignity and Federal Meddling-What about Patient Choice?
By Dr. Rick Bayer

The tragic events surrounding Terri Schiavo this past spring emphasize the importance of using an Advance Directive to make our wishes known about end of life care. In February 1990, Ms. Schiavo, then 26 years old, collapsed from a low potassium level. Her heart stopped and her brain was deprived of oxygen for over 5 minutes causing severe brain damage.

Physicians diagnosed her as being in a persistent vegetative state. This type of brain damage has periods of wakefulness and sleep with some reflexive response to light and noise, but no signs of willful activity or thought. Ms. Schiavo’s brain imaging showed severe wasting of her cortex, or “thinking part” of the brain. And, there was no electrical activity. No one in medical history has ever recovered from such a severe and prolonged vegetative state. She was not technically brain dead because lower parts of the brain worked well enough that she could breathe without a machine. But, she never recovered from the oxygen deprivation, so remained dependent on a feeding tube for nutrition and hydration.

Ms. Schiavo’s feeding tube was first removed by court order in 2003 but was reinserted days later after the Florida Legislature passed a law giving Governor Jeb Bush authority to stay the court order. That law was later ruled unconstitutional. The feeding tube was removed a second time on March 18, 2005. She died March 31, 2005 despite multiple unsuccessful legal efforts by her parents, the US Congress, and President George W. Bush.

Persistent vegetative state from brain damage is common. Feeding tubes are daily removed or not inserted in hospitals, nursing homes, and family homes across the US. What was different about the Schiavo tragedy is the patient’s husband and parents became embroiled in a long court battle that eventually dragged in the US Congress and President Bush. Her husband, Michael Schiavo, insisted his wife would not have wanted to be kept alive by artificial means when there was no hope of recovery, so sought permission to remove her feeding tube. Her parents maintained that Mr. Schiavo’s representation of his wife’s wishes was not accurate. Like most Americans, Terri Schiavo had no Advance Directive to express healthcare wishes and appoint a representative before becoming incapacitated.

When learning of this tragedy, my first thoughts were for the family because personal hardship had escalated into a legal contest with international media coverage. Next, the arrogance of those second-guessing the patient’s attending physicians was alarming. Heart surgeon and Republican Senate leader, Dr. Bill Frist, without examining Ms. Schiavo, publicly disagreed with opinions from her attending neurologists. Dr. Frist’s hubris mocks the scientific credibility of medicine and political integrity of the US Senate.

Finally, it’s important to reflect on Oregon’s unique Death with Dignity Act. Oregonians are more likely to die at home, less likely to die in hospital, and rank number one among the states in use of home hospice care. End of life care in Oregon is superior. Even though 99.9% of Oregonians choose not to hasten death when terminally ill, the Act benefits all and is the epitome of the ethical principle of patient autonomy.

Patient autonomy means a patient has the right to make his/her own personal choices concerning reproduction, medical therapy (such as medical marijuana), and end of life care. Medical decisions remain private between patient and doctor. 2nd and 3rd medical opinions are available. But, difficult choices are never made easier by unwanted publicity and dogmatic criticism.

How to protect yourself? First, talk to family and friends. Experienced physicians never ask family to “pull the plug”, but instead ask next of kin what the dying person would want. There’s no reason to place guilt on family members. Modern technology offers a least bad death through pain control and hospice care but communication with family and clinicians remains key.

An Advance Directive for healthcare decisions allows you to put your wishes about end of life care in writing and prevents family disputes. Most Americans have no Advance Directive and thus depend upon the good will of family to avoid disputes. The Schiavo tragedy teaches us that having no Advance Directive is risky.

For more information, see www.compassionindying.org/ and link to Advance Directives.

We citizens must be allowed to make our own private medical choices. The alternative is government-mandated anti-choice. We who advocate for medical choices to be private need to elect leaders who tolerate patient choice and defend reason.

Richard Bayer, MD, FACP is board-certified in internal medicine, a fellow in the American College of Physicians (FACP), and lives in Portland. Dr. Bayer practiced internal medicine in Oregon for many years gathering extensive clinical experience about end of life care.


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