I talk a lot about Advance Directives and Do Not Resuscitate orders. I teach clinical staff in the hospital, and I preach “my second sermon” during the announcements when I do supply services. And one of the frequent questions I get is, “Do people really follow Advance Directives?”
Well, yes, mostly, when we can. Advance Directives in the hospital, whether the Health Care Treatment Directive, with its instruction set, or the Durable Power of Attorney for Health Care, designating the patient’s Agent, get a lot of respect from staff. That’s not an absolute guarantee, and sometimes it takes some negotiation. I regularly tell new clinical staff, “It’s worth extra time, effort, and expense to work for consensus with the family. It’s good for your soul, a phrase I don’t take lightly.” But, still, in the hospital the documents, and indeed, the patient’s wishes (if we know them) are taken seriously, and followed as best possible.
But, what about outside the hospital? That’s a different story. Outside the hospital Health Care Treatment Directives in particular have limitations. The reason is that Health Care Treatment Directives specifically, and to a lesser extent Durable Powers of Attorney for Health Care, depend on a physician determining that the patient lacks capacity to make decisions, and also will not recover to an acceptable quality of life. The thing is, in the field there’s no physician to make that decision. Paramedics and EMT’s can’t make that determination, so they have to do their best to stabilize the patient and get the patient to an Emergency Room, where a physician can. That may not be what the patient wants. It may not be what the family wants. But since for those documents that assessment is critical, there’s nothing that paramedics or EMT’s or family can do. (Thus one person I know has instructed those who care that if found down, those who find her are to wait 20 minutes before calling anyone so that there will be no question of putting her through a code when her brain is probably already gone.)
Which is why we frequently recommend to patients an Out-of-Hospital Do Not Resuscitate order. The Out-of-Hospital DNR is a physician order that paramedics and EMT’s can follow. It says much the same thing as a DNR order in the hospital: if the patient has an arrest staff are instructed not to resuscitate with chest compressions, electric shock, or medications. We recommend it for hospice patients and others who, while not necessarily expecting to die, would not survive an arrest (nor probably the resuscitation process itself). It allows for patients to die at home and peacefully, without inappropriate medical intervention.
Now there is this story from the Detroit Free Press. It tells of a young man who has survived into young adulthood with a severe, mentally and physically debilitating disease. He has lived longer and accomplished more than anyone ever suggested his parents might hope. He continues to attend a special education facility, part of the local school district, for what social and behavioral interaction he can maintain. But, he is physically frail. His parents understand that he could never survive resuscitation. He might survive being intubated, but he would never be extubated. He would probably not survive chest compressions. And so his parents have obtained for him an Out-of-Hospital DNR order.
Which is fine enough at home; but his parents wanted his school to honor it as well. At first, the school simply refused. However, with persistence by the parents and support from his physicians, the school district was convinced, and now has a policy in place to allow staff to honor the DNR.
The article speaks of other school districts in the Detroit area that have considered this question. Some will honor Out-of-Hospital DNR orders, and some will not. But as the article notes, as our medical technology has supported children in surviving conditions that used to be fatal and fatal young, we have raised to older and older ages children who are medically frail. As the article says, “No one tracks how many students have such orders, but anecdotal evidence suggests that there are dozens in Michigan. And as more children with severe health problems reach school age because of medical advances, the number of DNR orders is expected to increase. In some districts, children who are terminally ill also have DNR orders.” If there are dozens in Michigan, there may be hundreds throughout the country. And if there hundreds who have DNR orders, there are arguably thousands who might but don’t.
The article deals specifically with public school systems. To some extent, then, these are public agencies wrestling with how to address these very private issues. This young man is in a special setting, one in which it might be easier to educate staff and with a smaller student body. At the same time, the school system had to develop a system-wide policy; that’s the nature of such decisions. Conceivably, this could be an issue at the local middle school, supporting the child who’s managed to stay in school despite leukemia. With a larger faculty, and much larger and perhaps more aware student body, the consequences would ripple more widely.
Are there limits to accommodation to this need? I say “need” advisedly, because, again, putting such a patient through resuscitation would cause pain and injury with virtually no hope of success (in the sense of return to baseline, as we say – to something like the condition of the patient at the time of the arrest). It is a need; but is it one we are prepared to meet outside the privacy of the home? Personally I think it should be, but I don’t think we’ve thought about it much, not as a society. What do you think? How should we care for this young man and others with similar needs?