Life as an Extreme Sport

Weighing in on Schiavo

Like every other news outlet in the country, the Washington Post has weighed in on the Schiavo case, saying “the medical and ethical questions are largely decided.”

For all the political controversy over whether Terri Schiavo is in a persistent vegetative state and should be allowed to die, neurologists and ethicists said yesterday that the case presents few scientific and legal ambiguities.

Congress, President Bush and others have sought to place the case in the context of a broader ethical and political struggle to define when life ends — with resonances for the lingering question of when it begins. But many experts said this is the wrong test case for a nation struggling with those profound questions.

The brain-damaged woman will never regain the conscious awareness she lost 15 years ago, medical experts said, and decades of case law have already dealt with the legal issues raised by people in her condition.

Patients who do not return to normal within weeks of losing conscious awareness have a very poor prognosis, studies have shown. Electrical measurements have revealed no activity in the regions of Schiavo’s brain needed for such consciousness, and repeated clinical examinations have left no doubt about her future.

“She is permanently unconscious and will never again have consciousness,” said Robert M. Veatch, a professor of medical ethics at the Kennedy Institute of Ethics at Georgetown University, adding that she cannot feel sensations of hunger or thirst. “She can’t starve or be thirsty. Anyone who uses those words doesn’t understand the condition she is in.”

Schiavo’s husband has said she expressed a desire not to receive treatment if she were ever in such a situation — a claim that was repeatedly upheld in court.

Schiavo’s parents, however, have argued that their daughter’s condition is not as bad as doctors suggest. Schiavo sleeps and wakes, blinks, and sometimes seems to smile. Her parents and other critics of the decision to remove her feeding tube insist that she responds to the presence of friends and relatives.

Medical experts said those behaviors are the cruelest aspect of a terrible condition: Grimaces and other facial expressions give families of tens of thousands of such patients hope, but they are evidence only that Schiavo’s brain stem is working, keeping alive reflexes and routine bodily functions. They do not suggest that the higher areas of brain functioning needed for her to regain conscious awareness will return, experts said.

“It’s uncanny but misleading,” said William Winslade, who has studied how to distinguish patients in a persistent vegetative state from those suffering from other conditions at the University of Texas Medical Branch in Galveston. “Family members . . . will interpret random eye movements as something is happening. That has to be the case with Terri Schiavo. A truckload of physicians have concluded she is in a persistent vegetative state.”

Videos, such as those of Schiavo examined by Senate Majority Leader Bill Frist (R-Tenn.), a heart transplant surgeon and sponsor of legislation requiring her case to be heard in federal courts, can be particularly misleading, said a neurologist who helped develop national guidelines for determining when someone is in a persistent vegetative state.

Ronald Cranford, like other doctors who have examined Schiavo, found that she cannot respond to commands and lacks visual tracking, essential signs of consciousness. Cranford, a neurologist and medical ethicist at Hennepin County Medical Center in Minneapolis, has testified on behalf of Schiavo’s husband.

“Tomorrow I will do a transplant surgery if [Frist] starts doing neurology,” he said. “I have as much competence in transplant surgery as he is competent to do a neurological diagnosis on a videotape. He has no clue.”

Schiavo’s wish not to be kept alive should be respected regardless of whether others agree with her decision, several ethicists said.

“This case isn’t about definitions of death, it’s about personal autonomy,” said R. Alta Charo, associate dean of law at the University of Wisconsin at Madison. “She expressed her wishes, and now people are standing in the way of her having those wishes carried out.”

I’ve bolded two comments here. The first is simply to highlight what R.M. Veatch has said. Veatch is considered one of the most respected medical ethicists of our time, and has done a lot of work in this particular area. Just worth reading what he has to say.

The second thing I wanted to draw attention to was something that I disagree with on several levels, which is the commentary by R. Alta Charo. The first disagreement is on the issue of personal autonomy, which I’ll skip for now, since it’s largely a personal opinion and irrelevent (right now – gimme a year, damnit). However, Charo incorrectly states that Terri has expressed her wishes, and people are preventing those wishes from being carried out. (In essence, Charo is saying that the primary mandate of medical ethics – to respect and honour patient autonomy – is being grossly violated.)

Anyone who’s followed this case knows that Terri Schiavo never made her wishes clearly and unequivicobly known. I don’t believe you can make a strong argument for violation of autonomy in this case, because there are two relatives at opposing views on just what those autonomous wishes would be.

So I’ve done some thinking on the case, since I couldn’t sleep last night, and came to the conclusion that Terri Schiavo should be remanded to the care of a social worker, one who will gain no benefit from her treatment or death. (This is commonly done in the case of children who’re being removed from their parents care because of religious or other issues that are negatively impacting the health/care of the child.) Once she is in the care of the state social worker, her doctors should present her case and their findings to the hospital ethics committee in a moderately open forum – those who have a vested interest or right to be there, such as Terri Schiavo’s husband and parents, should be included, but the random person from the street with an opinion excluded.

I happen to have the pleasure of working with and learning from some of the most respected academics in the field of medical ethics, Nancy Jecker and Albert Jonsen. Dr.’s Jonsen and Jecker are responsible for a method called the “four box” approach, in which you divide a piece of paper into four. Clockwise, from the top left, the boxes are labeled “medical indications”, “patient preferences”, “quality of life”, and “contextual features” (aka “all the other stuff”). Starting with medical indications, the following questions* are asked:
1. What is patient’s medical problem ? diagnosis? prognosis?
2. Is problem acute? chronic? critical? emergent? reversible?
3. What are goals of treatment?
4. What are probabilities of success?
5. What are plans in case of therapeutic failure?
In sum, how can this patient be benefited by medical and nursing care, and how can harm be avoided?

The “patient preferences” box asks:
1. What has the patient expressed about preferences for treatment?
2. Has patient been informed of benefits and risks, understood, and given consent?
3. Is patient mentally capable and legally competent? What is evidence of incapacity?
4. Has patient expressed prior preferences, e.g., Advance Directives?
5. If incapacitated, who is appropriate surrogate? Is surrogate using appropriate standards?
6. Is patient unwilling or unable to co-operate with medical treatment? If so, why?
In sum, is patient’s right to choose being respected to extent possible in ethics and law ?

Quality of life questions to consider:
1. What are the prospects, with or without treatment, for a return to patient’s normal life?
2. Are there biases that might prejudice provider’s evaluation of patient’s quality of life?
3. What physical, mental, and social deficits is patient likely to experience if treatment succeeds?
4. Is patient’s present or future condition such that continued life might be judged undesirable by them?
5. Any plan and rationale to forgo treatment?
6. What plans for comfort and palliative care?

The final box would consider:
1. Are there family issues that might influence treatment decisions?
2. Are there provider (physicians and nurses) issues that might influence treatment decisions?
3. Are there financial and economic factors?
4. Are there religious, cultural factors?
5. Is there any justification to breach confidentiality?
6. Are there problems of allocation of resources?
7. What are legal implications of treatment decisions?
8. Is clinical research or teaching involved?
9. Any provider or institutional conflict of interest?

This is of course a fluid set of questions, shifting as appropriate for a case, but in general should give idea of the sorts of things being asked by an ethics committee (at this point, it’s nearly universal in use).

That said, I think that if you run Terri Schiavo through the four box approach, you come to a pretty simple conclusion, largely encapsulated by the questions being asked in the quality of life box. What is her prognosis? What are the prospects, with or without treatment, for a return to patient’s normal life? What physical, mental, and social deficits is patient likely to experience if treatment succeeds? Is patient’s present or future condition such that continued life might be judged undesirable by them?

If remanded to state/social worker care and then run through a rigorous hospital ethics committee, I believe the unanimous decision would be as it has been – that after 15 years, she has no prognosis of recovery, that it is only her automated systems that are functional, that there is no consciousness left, that there is no chance of a return to a normal life, and that there are very few if any people who would find Terri Schiavo’s current and permanent position a desirable state.

Medical ethics operates on the principle of benefiecence, to do no harm to the patient. On the surface, a lot of people’s gut reaction will be that removing Terr Schiavo’s feeding tube and allowing her to die does harm, but benefiecence goes deeper than the surface. Often times, the least harmful thing we can do for a patient is to ease any potential pain and suffering, and accept that their time to die has come, and ease them through that process. In Terri Schiavo’s case, that time came 5 years ago, and drawing it out has been one of the cruelest acts of medicine possible.

* Taken from in-class handout, although you can find this particular information just about anywhere online if you search for “four box method medical ethics”.