Posts Tagged ‘Karen Ann Quinlan’

What Have We Learned From The Tragedy of Terri Schiavo?

APRIL 4, 2005  VOLUME 12, NUMBER 40

By most reports Terri Schiavo was a shy and quiet woman, and she might well have been distressed if she had anticipated that the process of her dying would become such a public spectacle. Much has been written about her, her family, her wishes, her condition, and the political and religious factions aligned on one side or the other. In fact, too much has been written already—but we are compelled to seek some greater meaning for the public in her very private tragedy.

Regardless of individual reactions to the long death of Terri Schiavo, there are practical lessons for consideration. First among those, of course, is the importance of executing medical directives while still able to do so.

Every adult, regardless of age, should designate an individual (and one or more alternates) to make medical decisions in the event of incapacity. Whether the document is called a health care power of attorney, a health proxy designation or something else, it is important to designate a surrogate. Do not put it off because you do not think you are at risk. Terri Schiavo was 27 when she collapsed suddenly. Nancy Beth Cruzan was 25 when an auto accident left her brain-injured and catapulted her case into national headlines in the mid-1980s. A decade earlier, 21-year-old Karen Ann Quinlan’s injuries from a night of mixing alcohol and valium first focused public attention on legal, ethical and moral issues surrounding the end of life.

In addition to nomination of a surrogate to make personal and medical decisions, most individuals should also sign a statement indicating their wishes. The unfortunately-named “living will” can express a wish not to be treated in some circumstances, or to receive full treatment in any event, or any other variation imaginable. Under Arizona law, any statement describing your wishes can qualify as a living will—write it, sign it and have it witnessed (usually by two people) and you have made a significant contribution to your own peace of mind.

Arizona law provides a form for health care powers of attorney and living wills, but permits other options. Lawyers usually prepare the documents in connection with general estate planning, but a lawyer is not required. Forms are available from hospitals, area agencies on aging, and advocacy groups. A number of perfectly acceptable variations can be found online, including those at the Arizona Attorney General’s website.

Another option: the National Right to Life’s “Will to Live” directs provision of medical care under nearly all circumstances. It also expresses the view that tube feedings are not medical care, and should be continued in most circumstances.

Arizona law also recognizes advance directives authorizing mental health treatment, and directing withholding of CPR and resuscitative efforts. Those forms are not as important for most people but can be essential in some cases. For more information about the options in Arizona (including both mental health powers and the “orange form” governing out-of-hospital resuscitation) check into our Question and Answer section on advance directives.

Whatever documents you do sign, it is also important to circulate them widely. Encourage discussion of your wishes while you are still able to participate and you will increase the likelihood that those wishes will be honored.

Appellate Court Ruling May Allow Feeding Tube Removal

MARCH 6, 2000 VOLUME 7, NUMBER 36

Just over eighteen months ago Elder Law Issues reported on the tragic story of Robert Wendland (“Lack of Advance Directives Contributes to Family Tragedy,” August 10, 1998). Last week the California Court of Appeals added a new chapter to the Wendland story, and may have completely changed the ending.

Mr. Wendland was injured in a 1993 automobile accident. Because of brain damage from the accident he has been completely dependent on others for his care; since the accident he has received food and fluids through a feeding tube.

Mr. Wendland has been married to his wife Rose for over twenty years, and they have three children. In late 1995, Mrs. Wendland asked the court to appoint her as conservator of her husband’s person (California’s term for a guardian), and it was apparent she would be appointed. At the same time she asked the court for permission to disconnect Mr. Wendland’s feeding tube.

About the same time, Mr. Wendland’s mother Florence received an anonymous telephone call informing her that a move was underway to remove her son’s feeding tube. She and her daughter (Mr. Wendland’s sister) filed an objection with the court.

Despite some improvement in his condition, Mr. Wendland remains a total-care patient. He is paralyzed on one side and he can not feed himself or control his bladder or bowels.

Mr. Wendland has been fed by artificial means since his accident—at first by a “jejunostomy” tube stapled directly into the inside of the small intestine. Such a tube requires general anesthesia, and Mr. Wendland’s tube became dislodged three times in the first half of 1995. When his wife refused to consent to the fourth replacement of the tube, doctors insisted on a nasogastric feeding tube (inserted through the nose and directly into the stomach). For nearly five years, he has been fed by a “PEG” tube inserted directly into the wall of his stomach and small intestine. It is that tube that Mrs. Wendland now seeks to remove.

Mr. Wendland never signed any “living will,” health care power of attorney or other advance medical directive. Mrs. Wendland testified that he did say he “would never want to live like that” after watching his father die three months before his own accident. That testimony was corroborated by Mr. Wendland’s brother, who told of warning him about drinking and driving just five days before the accident.

Removal of artificial feeding devices from brain-injured patients, tragic though it may be, is all too familiar in medical-legal circles. Since the late 1970s the issue of removal of life-sustaining medical treatment from incapacitated patients has been a rapidly-developing area of the law, with the U.S. Supreme Court even weighing in at one point, in the case of Missouri resident Nancy Beth Cruzan. Mr. Wendland’s story, however, is different from almost all the other cases reported in the courts.

Nancy Beth Cruzan (and, before her, Karen Ann Quinlan) was diagnosed as being in a “persistent vegetative state” (PVS). Although the diagnosis is relatively new, it has been well-described in the past quarter-century. PVS is not the same thing as “comatose;” comatose patients are completely unresponsive to external stimuli, while PVS patients often respond to noises, temperature changes and touch. In fact, PVS patients may appear to be awake, and even follow movement with their eyes. Properly diagnosed PVS patients, however, do not recover significant cognitive functioning—unlike comatose patients, who may awaken even after extended periods of unconsciousness.

Although Mr. Wendland was in a sixteen-month coma immediately after his accident, he is now awake and at least partly responsive. He can (after repeated instructions) operate a motorized wheelchair’s joystick control, and has drawn the letter “R” on command. Sometimes he cooperates with therapists enough to match colored blocks, again after instructions have been repeated multiple times.

Most remarkably, Mr. Wendland has (on at least one occasion in 1997) communicated with his physician by pushing or pointing at bars on an “answer board” set up to assist him. The physician first ascertained that Mr. Wendland’s answers were not random by asking “Are you Robert?” [Yes] “Are you Michael?” [No] and similar questions. Then he moved on to the questions central to Mr. Wendland’s future:

“Do you have pain?” [Yes]
“Do your legs hurt?” [No]
“Do your buttocks hurt?” [No]
“Do you want us to leave you alone?” [Yes]
“Do you want more therapy?” [No]
“Do you want to get into the chair?” [Yes]
“Do you want to go back to bed?” [No]
“Do you want to die?” [No answer]
“Are you angry?” [Yes]
“At somebody?” [No]

Despite his ability to respond to questions appropriately, his physician opined that Mr. Wendland did not seem to understand all the questions, and his answers could not be trusted.

The trial court appointed Mrs. Wendland as her husband’s conservator, but specifically limited her authority so that she could not remove his feeding tube. She appealed, and was joined by Mr. Wendland’s court-appointed attorney. Mr. Wendland’s mother and sister asked that the trial judge’s ruling be upheld.

The Court of Appeals’ 70-page opinion begins with a simple, but eloquent, observation: “This is the hardest case.” The appellate court then directs the case back to the trial court level, instructing the judge to hold further hearings and to permit Mr. Wendland’s mother and sister to put on any evidence they might have about his wishes prior to his injury.

After that evidence is in, according to the Court of Appeals, the question for the trial court is whether Rose Wendland has made her decision in good faith and based on medical advice. The trial judge’s determination that the feeding tubes could not be removed was reversed, though the final outcome is not certain, even seven years after Mr. Wendland’s tragic accident. Conservatorship of Wendland, February 24, 2000.

Five More Myths About Advance Directives

JANUARY 23, 1995 VOLUME 2, NUMBER 29

I must use a prescribed advance directive form for my state.

In most states (including Arizona) you do not have to us a specific form. Arizona does provide a form to make it easy to prepare a living will and/or a health care power of attorney, but use of that form is not mandatory. Indeed, any form can and should be personalized to reflect the individual’s particular values, priorities and wishes. If you do not agree with the language of the form, change the form.

I need a lawyer to do an advance directive.

While a lawyer may be a helpful resource (but not the only resource, or even the best resource), a lawyer should required. Advance directives are not difficult to complete.

Doctors and other providers are not legally obligated to follow my advance directive.

Medical providers can not treat an individual against his wishes. Consequently, if a physician acts contrary to a patient’s clear instruction (including by living will or by the patient’s health care agent) to the contrary, the physician risks the same liability she would face in treating a fully competent patient. Of course, the physician must know about the advance directive, and it is up to the patient (and his agent) to get copies into the medical record.

The rules may be different for paramedics and emergency room staff. They may be governed by a “prehospital medical care directive.”

If I do not have an advance directive, I can rely on my family to make all my decisions when I am unable.

In Arizona your spouse, then your parents, and then your children, can make most medical decisions even if you do not execute an advance directive. But they can not authorize the removal of feeding tubes or artificially-supplied water, and the agent designated by the statutes may not be your first choice in any event.

Advance directives are for old people.

This is not an issue just for “old people.” Remember that the best-known “right to die” cases involved Nancy Cruzan and Karen Ann Quinlan, both young women in their 20s. The stakes are actually higher for younger persons in that, if tragedy strikes, they might be kept alive for decades in a condition they would not want. An advance directive is an important legal planning tool for all adults.

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