Persistent Indeterminate State: Reflections on the Wendland Case

by Lawrence J. Nelson

In fall 1993, an auto accident left Robert Wendland profoundly and permanently physically and mentally disabled. Although he was not in a permanently unconscious state (sometimes called the "persistent vegetative state"), Robert was paralyzed on his right side and could not talk or meaningfully communicate with assistive devices.

His wife and children never thought he recognized them; he could not perform any activities of daily living; he could not swallow and needed a surgically implanted tube to get food and water. He could follow some simple commands, but only with much coaching and then only inconsistently. Clearly, Robert was incompetent; that is, he lacked the mental capacity to make decisions about his life and future.

Some two years after the accident, Robert's wife, Rose, decided to stop the administration of food and fluid to him through a feeding tube after Robert had pulled this tube out of his body four times, and his physicians had told her he would never get any better. Based on previous conversations with him regarding such matters and his values pertaining to living and dying, she and her children were convinced Robert would not want to live under these circumstances and would refuse to be kept alive by medical treatment.

Rose's decision was challenged in court by Robert's estranged mother, and the litigation dragged on for six agonizing years. I was Rose's attorney during the appeals process.

Although the trial judge made Rose Robert's judicially appointed surrogate decision maker (called a "conservator" in California) and allowed her to make medical decisions on his behalf, he ruled that she lacked the legal authority to stop his tube feedings. Rose appealed this decision. After she prevailed in the Third District Court of Appeal, the California Supreme Court accepted the case for review at the request of Robert's mother.

The Court's Ruling

In a unanimous opinion released nearly eight years after his accident, the California Supreme Court ruled that Rose lacked the legal authority to refuse tube feedings on her husband's behalf. Robert had not used a durable power of attorney for health care (DPAHC) to give Rose his medical decision-making authority, nor had he left any formal, written instructions about what treatment he might not want in the future or about who should make medical decisions on his behalf. If he had done this, the Court stated (albeit somewhat grudgingly) that his choice should have been respected.

In the absence of a DPAHC or other formal, legally recognized method of determining how and what medical decisions should be made, the Court concluded that the constitutional right to life and right to privacy required that the incompetent person receive special protection. The court set as a standard that a conservator prove by clear and convincing evidence that her decision either tracks the conservatee's own previously stated wishes precisely or that stopping treatment is in his best interest. (For reasons hard to understand given that everyone has a constitutional right to life and to privacy, the Court exempted conscious, terminally ill, incompetent persons and permanently unconscious persons from the reach of its ruling.)

As Rose had not produced evidence sufficient to meet either of these standards, the Court ruled she could not refuse further tube feeding. Thus, treatment had to continue despite the sincere conviction of Robert's closest family members that he would not want such treatment or to live under the heavy burdens of his neurological injuries.

The Wendland Standards

Anyone who has to satisfy the Wendland standards (typically a family member) is almost certain to have a tough time proving the case. According to the Court, the "clear and convincing evidence" test requires a "finding of high probability, based on evidence so clear as to leave no substantial doubt [and] sufficiently strong to command the unhesitating assent of every reasonable mind...."

This evidentiary standard is much harder to satisfy than the usual test used in civil matters, "more likely than not." (Actually, it sounds a great deal like the highest evidentiary standard used in law, "beyond a reasonable doubt.") Furthermore, a family member may not rely on general expressions of the patient's wishes or infer what the patient would have done based on what she knows about his values and character.

In fact, the patient must have expressed his or her wishes very precisely for the family to be able to cite them as evidence. The family must be able to show that their incompetent relative "would desire to have his life-sustaining medical treatment terminated under the circumstances in which he now finds himself."

In other words, the Court insisted his conversations or other expressions of his wishes must "reflect an exact 'on all-fours' description of [his] present medical condition. More explicit direction than just 'I don't want to live like a vegetable' is required in order to justify a surrogate decision-maker terminating the life of . . . someone who is not in a PVS [persistent vegetative state]." (Emphasis added.) As none of us has a crystal ball, this exacting standard will literally be impossible to satisfy except in a few extraordinary situations.

As for the best-interests standard, not only is the high barrier of producing "clear and convincing" evidence present, but the Court also made the standard even more difficult to apply by giving no guidance whatsoever as to what the term best interests means in this particular context. All the Court said in this regard was that Rose "offered no basis for such a finding other than her own subjective judgment that the conservatee did not enjoy a satisfactory quality of life and legally insufficient evidence to the effect that he would have wished to die."

But this categorization of the evidence Rose and Robert's court-appointed lawyer introduced is grossly inaccurate and unfair. For example, Robert's lawyer had two independent medical experts examine him, and both found he evinced experience of nothing other than frustration, pain and discomfort, irritability, aggressiveness toward others, and unhappiness.

In the end, ironically, the Court's ruling did not determine Robert Wendland's ultimate fate: He died from an infection some three weeks before the Court released its decision. His wife had refused aggressive treatment and insisted upon all palliative measures so he could die in peace.

The Ethical Issues

A veritable host of ethical and legal issues appeared in the Wendland case, but here I wish to focus on two fundamental questions of serious ethical import. First, should adults take steps to ensure that medical decisions will be made for them, in the event they become incompetent, both by a person (or persons) they choose and in a way that respects their personal values and wishes? Second, if an adult fails to select a surrogate medical decision maker, fails to specify his wishes and values, and ends up incompetent, how should medical decisions be made for that person?

Finding ethically defensible answers to these questions is vitally important to all of us. Because at least some of our beloved family members will sicken, become incompetent, and either approach death or experience severe mental or physical disability, it is virtually certain we will have to confront the same questions Rose and her three children did:

When is it right to let nature take its course and allow a relative to die? When is more medical treatment no longer truly beneficial or unduly burdensome for one of our family members? When should we stop the medicine because we know our spouse, parent, brother, or grandfather would want us to stop?

And, of course, each of us will eventually sicken and die ourselves, and our loved ones will have to reflect on these same questions on our behalf. I dealt with these issues as a lawyer when I represented Rose in her legal appeals. I was immersed in them as a son three years ago when my 86-year-old mother, already suffering from the theft and cruelty of Alzheimer's disease, was diagnosed with terminal lung and brain cancer.

Durable Power of Attorney for Health Care

Just as every adult ought to have a will specifying how her property ought to be distributed upon death (and avoid often ugly familial arguments and lawsuits), every adult ought to formally designate a person or persons who will have clear authority to act as her surrogate to make medical decisions on her behalf when she cannot do so herself. Additionally, each adult ought to give her surrogate at least some idea (and preferably a good idea) of what medical treatment and outcomes she would want or reject.

If individuals wish to ensure that some loved one or other trusted person will be able to make medical decisions for them with less chance of legal interference when they are unable to make their own decisions, they should sign a legally valid DPAHC. In a DPAHC, an adult appoints another adult to be his agent and grants the agent whatever power to make medical decisions that he cares to give.

The individual can simply give the agent his full decision-making authority, or he can limit this authority any way he chooses. The agent then clearly has the legal authority to make any and all medical decisions for the individual in accordance with the DPAHC.

There are other ways under California law to designate a surrogate decision maker or to leave formal, written health care instructions. But, in my 25 years experience as a bioethicist, a valid DPAHC is the most effective method (yet still no guarantee) for ensuring both that the person you want will be making important medical decisions for you and that his or her authority to decide will be honored. Appointing an agent can save one's family a great deal of heartache and trouble if hard choices have to be made about accepting or refusing treatment that offers questionable benefit or imposes undue burdens.

However, despite excellent reasons to use a DPAHC or another legally recognized form of advance directive, the overwhelming majority of Americans have not done so—just as many do not have a will. Despite serious efforts to educate the public and promote advance directives, only 10 to 15 percent of Americans have one, and many of these cannot be found at the crucial time or are found to be legally invalid. Why this is so is nowhere near as important as the fact that it simply is so-and will almost surely continue to be so into the future.

Family Members as Decision Makers

I believe most Americans count on their close family members being able to make medical decisions for them if they cannot do so themselves. But judicial decisions like Wendland prove this isn't necessarily so. The Wendland opinion reads as if Rose were a stranger to Robert and assumes he needs legal protection from her making a bad decision to let him die.

This group of judges got it wrong. Close family members should presumptively be the ones who decide when it is right to forgo treatment of their incompetent relative. As the New Jersey Supreme Court stated when strangers opposed a family's decision to stop the tube feeding of their permanently unconscious relative, "Our common human experience informs us that family members...provide for the patient's comfort, care, and best interests..., and [it is] they who treat the patient as a person, rather than a symbol of a cause."

Family members can treat the patient as an individual because they know her best, care for her, and have her best interests at heart. The Latin root of "surrogate," sur-rogare, can be translated as "to ask near." When we cannot ask the patient herself, we ask someone as close to her as possible.

To be sure, family members will sometimes act selfishly, precipitously, or otherwise make ethically objectionable decisions for their relatives, but this is likely to be relatively rare. In such situations, we should be able to count on the physicians, nurses, and other health care professionals who are committed to patient wellbeing to serve as a check.

In extraordinary cases, the courts will need to be involved. But in the last analysis, no stranger-be she judge, physician, disability activist, or lawyer-is at all likely to be better situated as a surrogate decision maker than a close family member who has a demonstrated personal connection to the patient.

The California Supreme Court was wrong to disqualify Rose as her husband's surrogate, and its ruling is likely to disqualify other close, concerned family members from deciding the medical fates of their loved ones (particularly the developmentally disabled). Each one of us should sign a DPAHC or other legally recognized advance directive without delay to avoid this happening to us.

Attorney Lawrence J. Nelson is associate professor (adjunct) of philosophy and women and gender studies at Santa Clara University.