A case more disturbing than Terry Schiavo

A little more than a year ago, the entire nation was captivated by the case of Terri Schiavo. As you may remember, Ms. Schiavo was an unfortunate woman who lapsed into a persistent vegetative state after suffering anoxic brain damage after a cardiac arrest. Her husband insisted that she had stated that she never wanted to be kept alive in such a state; consequently, he fought to have her feeding tube removed. Her parents fought to have it left in. Eventually, her husband Michael Schiavo prevailed, and Ms. Schiavo died on March 31, 2005. In my mind, this was indeed a matter of personal autonomy, not state-sanctioned murder, as the activists who pilloried Michael Schiavo and made ill-founded comparisons to the Nazis represented it. (As has been said sarcastically about such comparisons, “Yep: Adolf Hitler, famous advocate for patient autonomy.”)

Now a more disturbing case has come to my attention, that of Andrea Clarke. Oddly enough, I only just discovered it on Saturday as I was catching up on reading my medblogs and found the story at Medpundit, even though it’s been going on at least since April 21. That’s when Andrea’s sister, a lifelong Democrat, posted a plea to the Democratic Underground discussion boards under the subject header, “Killing My Sister – We Are Protesting – Help Us”:

My sister, Andrea Clarke, is at St. Luke’s Episcopal Hospital in Houston, TX. St. Luke’s is located at:

6720 Bertner Avenue, Houston, TX. Their phone number is: 832-355-1000.

The hospital ethics committee met the day before yesterday and concluded that Andrea’s treatment (respirator and dialysis) should be discontinued. We have ten days to move her from that hospital or they will “pull the plug” and let Andrea die. Andrea, until a few days ago, when the physicians decided to increase her pain medication and anesthetize her into unconsciousness, was fully able to make her own medical decisions and had decided that she wanted life saving treatment until she dies naturally. We have learned that this is part of the process, when hospitals decided to declare the “medical futility” of continuing treatment for a patient. But, this is not a Terry Schiavo case; not anything like it. Andrea, when she is not medicated into unconsciousness (and even when she is, and the medication has worn off to some degree) is aware and cognizant. She has suffered no brain damage to the parts of her brain responsible for thought and reason, or speech. She has only suffered loss of some motor control. The reason that the physician gave to medicate her so much is that she is suffering from intractable pain in the sacral region (in other words, she has a bedsore that causes her pain). This is not reason enough, in our books, and we are trying, as we speak, to get Andrea’s medication lowered so that she can speak to us.

There is also some disagreement as to whether Andrea is really in that much pain, as well. When she is not medicated to this degree, and she sees her son, Charles, she smiles. She also mouths words (Andrea is very vocal, normally, even with a trach, and asks for food, etc., when she is not medicated to the gills). Once again, this is not like the Shiavo case, where there was brain death. Andrea has voiced her wishes, over and over again, and if she were not on so much pain medication, she would voice them again.

Houston hospitals have a policy in that once the medical treatment of a patient has been deemed “medically futile” no other hospital in the area will accept transfer of that patient to their facility. This means that the patient, who is usually in a very delicate condition anyway, has to be transported over a long distance, in order to receive care.

We received notice of the ethics committee decision the day before yesterday and we are organizing a protest to take place tomorrow, at 2-2:30pm outside St. Luke’s Episcopal Hospital. Our family members number four and we will all be there, but we need more people. Please help us.

Of course, in the above post we are only getting one side of the story. Until this weekend, there was surprisingly little in the press about this, and the main sources of information I was able to find were follow-up posts in the Democratic Underground message boards, one of which speculated (probably with some justification) that this was about the insurance company balking at paying for long-term care for Clarke, a whole lot of posts on right wing blogs, a pro-“intelligent design” blog, and Daily Kos. My two favorite bioethics blogs, blog.bioethics.net (the blog of the editors of The American Journal of Bioethics) and Bioethics Discussion Blog, have been surprisingly (and disturbingly) silent on the issue as of this writing, even though this case has been going on for nearly two weeks and one of them has even commented again on the Schiavo case.

Let’s set one thing straight right off the bat. As Andrea’s sister says and contrary to what some say, this case is not analogous to that of Terri Schiavo. In Schiavo’s case, the fight was over personal autonomy, the court having concluded multiple times that the evidence showed that Ms. Schiavo did not want to live in a persistent vegetative state. Consequently, the Schiavo case was a case of patient autonomy, of honoring Ms. Schiavo’s wish, not a case of the state wanting to “murder” Ms. Schiavo. Also, unlike Ms. Clarke, Terri Schiavo was in a clearly hopeless state, with no hope for recovery of any sort of neurological function. Her brain CT and MRI showed massive irreversible atrophy from her anoxic brain injury. Ms. Clarke, on the other hand, is not in a persistent vegetative state and is able to communicate when she is not too sedated to do so. Certainly the hospital has not attempted to argue that she is not able to communicate her wishes.

Andrea Clarke is 54 years old and has a long history of heart problems. Indeed, news reports indicate that she was one of the “blue babies” upon whom Drs. Michael DeBakey and Denton Cooley operated on in the late 1950’s. I could not find out what specific cardiac operation she underwent late last year, but it was complicated by bleeding in the brain and multiple infections that have left her ventilator-dependent with a tracheostomy. Despite her condition, it is clear from the reports I’ve been able to find that Clarke is able to communicate by mouthing words and has made her desire to live known. However, under the Texas Futile Care Law of 1999, hospitals can convene a meeting of their bioethics committee and declare further care “futile.” Once that decision is made, the wishes of the patient or family no longer matter, and the hospital only has to give the family ten days to try to find another facility to care for the patient, or the plug can be pulled:

Under Chapter 166 of the Texas Health and Safety Code, if an attending physician disagrees with a surrogate over a life-and-death treatment decision, there must be an ethics committee consultation (with notice to the surrogate and an opportunity to participate). In a futility case such as Andrea’s in which the treatment team is seeking to stop treatment deemed to be non-beneficial, if the ethics committee agrees with the team, the hospital will be authorized to discontinue the disputed treatment (after a 10-day delay, during which the hospital must help try to find a facility that will accept a transfer of the patient). These provisions, which were added to Texas law in 1999, originally applied only to adult patients. In 2003, they were made applicable to disputes over treatment decisions for or on behalf of minors. One of the co-drafters in both 1999 and 2003 was the National Right to Life Committee. Witnesses who testified in support of the bill in 1999 included representatives of National Right to Life, Texas Right to Life, and the Hemlock Society. The bill passed both houses, unanimously, both years, and the 1999 law was signed by then Governor George W. Bush. The statute was designed to keep these cases out of court.

Interestingly, the law seems to mention a patient’s surrogate’s wishes, but not the patient herself, the assumption being that the patient is incompetent. I can’t reasonably comment on whether Ms. Clarke is incompetent to decide, but, if her sister’s account is correct, she may indeed be competent to decide her own fate. Regardless, once the doctors got the decision they wanted from the bioethics committee, the hospital played hardball. The family could not find any hospital in Houston or even Texas that would take Andrea, but they did find one in Illinois, as described by Wesley J. Smith (a Senior Fellow at the Discovery Institute and hence someone whom I would rarely find common cause with):

Since the patients threatened with death by ethics committee are often the most expensive to care for, it will often be difficult for families to find other institutions willing to accept a transfer. But the futility deck may be especially stacked against Houston patients. Many city hospitals participate in the “Houston City-Wide Guidelines on Medical Futility,” raising the suspicion that participating hospitals will not contradict each other’s futility decrees.

If so, this would mean that patients seeking refuge from forced treatment termination will have to be transported to distant cities, as has already occurred in a few futile-care cases, perhaps even out of state. Illustrating the level of hardball some hospitals play against patients and families, the Clarke family’s lawyer Jerri Ward told me that St. Luke’s agreed to pay the $14,806 transportation costs to transfer Clarke to a hospital in Illinois — more than 1,000 miles away — if the decision to transfer is made on Thursday (4/27). If the family doesn’t decide until Friday, the hospital will pay only one-half of the cost of transportation. Thereafter, it would pay nothing.

Unfortunately, even the above deal fell apart when the accepting institution realized that Clark’s case was too complex for them to handle, and it is unclear what will become of Clarke. The hospital has decided to hold off on pulling the plug beyond the original deadline of yesterday until a meeting on Tuesday to discuss the case.

This case brings up a number of serious issues. In my training, I participated in the care of a number of patients like Ms. Clarke, chronically dependent on the ventilator and even on dialysis. They tend to be what we call “metastable.” In other words, they are not making any real forward progress in getting off the ventilator and getting better (nor is there much hope that they will), but they are not clearly going downhill, either. Despite their apparently “stable” condition, they are either too complex or not stable enough to be transferred to a cheaper long-term care facility or nursing home capable of caring for ventilator-dependent patients. Consequently, they stay in the ICU, sometimes for many months–or even, as in one case I saw at the Cleveland VA Hospital, for well over a year–until they either show signs of improvement or die. Clearly such patients are enormously expensive to care for and can rack up medical bills of hundreds of thousands, if not millions, of dollars, which is why hospitals are often desperate to try to find a way to transfer them to a long-term care facility. When such patients (or their families speaking for them) no longer want care, it is clearly ethically justifiable to grant them their wishes on the basis of personal autonomy. But what do you do when the patient apparently wants to keep living, even on a ventilator and reportedly in pain, with little (but not no) hope of improving. How much suffering constitutes too much to keep putting the patient through and shouldn’t the patient be the one to decide? How small a chance of recovery is so small that withdrawing care is justified even in the face of a patient and family who do not want support withdrawn? These are very difficult questions, and they will come up more and more as we face the decision of who will pay for increasingly expensive technology to prolong life even when there is little hope of recovery. In many nations with state-paid health care, in a case like Clarke’s, additional care other than palliative care would have been denied a long time ago. It’s also a mistake to pillory Clarke’s doctor as uncaring or even downright evil, as some have done. What may be difficult to understand just how truly difficult a thing it is to care for such patients day in and day out with little evidence that they are getting better and little hope that they ever will. It bothered me when I was a resident, and I had the knowledge that in one, or at most two, months I would be moving on to another rotation, making the patient no longer my problem. Imagine having to take care of such a patient indefinitely, particularly if you were the surgeon who operated on her, resulting in the complications that led to her condition. Most doctors, faced with such a patient, will eventually come to view that patient’s care as futile and wonder why they are continuing to “torture” the patient needlessly. Indeed, at their heart, medical futility arguments are based on value judgments:

Clarke’s case involves value judgments rather than medical determinations. In such “qualitative futility” cases, treatment is stopped in spite of a patient’s or family’s objections — the intervention is necessary not because the treatment doesn’t work, but because it does. In essence then, it is the patient’s life that is deemed futile and, hence, not worthy of being preserved.

Arguing such cases from patient autonomy cuts both ways. If a patient’s stated wish that, in the event of becoming ventilator-dependent or comatose with no hope of recovery, he or she wouldn’t want to have life prolonged is sacrosanct (as it should be), it’s difficult to argue at the same time that a patient’s wish to have everything done should not also be sacrosanct. (It’s not without justification that some have boiled the Clarke case down to, “In other words, you’re free to choose, as long as your choice is for death.”) True, it could be argued that society is not under any obligation to honor such a wish if the requested care is truly futile or in very short supply (i.e., providing it to this “hopeless” case would deny it to others that it might save, such as organ transplants) and society has to pay for it. Arguably in this case, neither condition applies. Clarke could live for a long time, perhaps years, if ventilatory support and dialysis continue to be provided, and she has not yet exhausted her health insurance. In such cases, although there may come a time when our resources no longer permit us to do this, deference should be given to the patient’s wishes and we should try to err on the side of life, barring a compelling ethical argument not to. At the very least, every attempt should be made to determine it is true that, as her sister says, Andrea Clarke is capable of articulating her wishes about her own fate.

So far the hospital has not made a compelling ethical argument about why Clarke’s personal autonomy should be overridden, nor has it demonstrated that the representation of her wishes by her family is not valid. Indeed, it has done nothing to blunt the impression that this is more about money than bioethics. Few would argue that society has the resources to spend on “futile care” indefinitely. The problem is deciding what constitutes “futile” care and who gets to decide. The other problem is who will pay for it. Right now, it’s hard to escape the impression that the hospital (and the State of Texas through its law that allows the hospital to do what it is doing) are motivated primarily by finances rather than ethics. If the hospital and those supporting the withdrawal of care against a family’s will are going to make the argument that we as a society can no longer afford to provide what it considers “futile care” to Clarke and others like her, that doing so raises everyone’s health care costs and uses up scarce resources for little or no benefit, they should make that argument rather than hiding the what is clearly primarily an argument weighing the good of the patient versus the good of society in unconvincing arguments based “personal autonomy”–or explain how it serves personal autonomy to let a woman die against her and her family’s will.

NOTE: I have posted an update here.