I was asked to talk about the law’s view of the case of Dan Crews, age 27, who wants to die as soon as possible. You may have read about him last fall in the Journal-Sentinel, and in spring in the Chicago Tribune as the story unfolded. You might hear about him on the WISN 10 o’clock news on Sunday, November 6.
Dan has had quadriplegia since a traffic accident when he was three years old, and uses a ventilator because his chest muscles don’t allow him to breathe on his own. He’s mentally sharp, and verbal since the ventilator is attached through a trachea tube. He has earned an AA degree.
He wants to switch off the respirator so he will stop breathing. Specifically, he wants help from Froedtert Hospital, where he has received his care over the years, to switch off the respirator.
My totally unscientific poll revealed that the well-settled law in this area is about as well-known as speed limits. Dan has a right to refuse medical treatment, and no one thinks the use of a respirator is anything other than medical treatment.
His liberty right is based in our Wisconsin state constitution’s declaration that people are free and independent. Our supreme court says that includes the right to accept or refuse treatment. Across the border in Illinois, where Dan lives, statute confirms the right, which in any case has been recognized under the U.S. Constitution. A competent individual has a right to refuse treatment though the result inevitably is death.
That only takes the matter so far, though. It does not explain why Froedtert insists that Dan must take antidepressants and have therapy for at least a year, and they might not cooperate even then. That prompted Dan to say “People are messing with me.” It also does not explain why Dan has asked for his doctors’ OK. It is worth noting that when Dan went on a hunger strike for 4 days his nurses withdrew from his care.
The state has its own interests to balance with a person’s right to decide. One is maintaining the integrity of health care professionals, hence the nurses’ action. More broadly, the state has an interest in preserving life and preventing suicide. There is no doubt at this point what Dan intends by flipping the switch.
The state and health care providers want to know Dan really intends the result so some reasonable steps are in order. His Froedtert physician referred him to palliative, or comfort, care, the kind hospice delivers. One psychiatrist found Dan to be competent to make the decision, as his own physician apparently did. Other health care providers doubted Dan’s capacity, and initially said he must be declared competent by two psychiatrists. They called for delay of at least a year of medication and counseling for depression. Dan got disgusted and refused to cooperate with the plan.
Dan might be clinically depressed. Courts have seldom dealt with depression and to what extent it affects capacity. It seems like a possible wrong road, however, because outliving his $4 million accident settlement, being faced with a move to Medicaid-paid nursing home care, and seeing his mother age while caring for him could cause him to answer psychological questions like one clinically depressed. To say Dan might not feel better is not to way he’s just down in the dumps. He is not required to be an emotional Superman.
However, it would also be wrong for temporarily-able-bodied people to conclude his quality of life is so low that it makes sense to give it up. Such a conclusion rankles disability advocates, many of them severely disabled themselves. The Bouvia case (179 Cal. App. 3d 1127 (1985)) gives the distasteful (indeed, depressing) sense that the judge finds Bouvia’s life to be not-worth-living when he acknowledges her right to have an unwanted nasogastric feeding tube removed. When considering the lives of Jean-Dominique Bauby, a man with locked-in syndrome which allowed him motion in only one eyelid who dictated his experience in The Diving Bell and the Butterfly, and of soldiers blown apart by IEDs as reported at length yesterday (October 13) on public radio, we know that many are glad to live with disability.
The law does the balancing of conflicting interests of the patient and the state case by case. On similar facts in State v. McAfee (385 S.E. 2d 651 (1989)), the Georgia supreme court ruled that Larry James McAfee had the right to refuse to continue to use a ventilator. Interestingly, the court considered the state’s only interest to be one of preserving life and that it did not outweigh McAfee’s right. (See also http://www.mikemason.net/work/magazines.php?cat=society&id=10 (1990) for more detail) The hearing was held four years after McAfee’s road accident rendered him quadriplegic, and about three months after his petition. Such a view means, correctly I think, that a case like Dan’s is distinct from all cases where some additional means causes death, from the Kevorkian cases. It means that there should be no need to consider moving to Washington, Oregon or Montana, states that have a process for physician assisted suicide.
The McAfee court also held that a patient has a right to a sedative when ventilator support is withdrawn. The Bouvia court affirmed that the petitioner had a right to comfort care when foregoing life-sustaining treatment. Our supreme court made a similar observation in Edna M.F. (563 N.W. 2d 557 (1997)). So, this is where Froedtert Hospital figures in this. While no individual health care provider could be required to turn off the ventilator, Dan can ask for help, for comfort care. Someone who believes in his right to autonomy would step forward. Indeed, his mother says she’ll back him up whatever he decides, though his family is in turmoil over the matter and are probably not good choices to act.
Another whole story could be told about policy that might keep people with disabilities at home, even if round-the-clock care is necessary. Still more might be said about the people who have come forward to tell Dan they understand his pain because they and their families live it, and they will help him live. It is said that Larry McAfee, having won his battle for self-determination, declined to use it.
It is unclear what the judge would decide, but Dan can ask for a decision if the wait gets too long. The choice is indeed about self-determination and hope.
It seems to me that there’s a distinction between a court making a determination that a disabled life is not worth living vs. the court respecting a disabled individual’s judgment that his life is not worth living. Phrased the second way, it doesn’t necessarily impact the rest of the disabled community (who value and desire their lives to continue) in the same fashion as if the court itself had made an affirmative decision that the person’s life isn’t worth continuing.