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The Ethics of Withdrawing Life Support
From: Columbia University
| By:
Barron Lerner |
EDITOR'S INTRODUCTION |
When should patients be removed from life support? What are the legal and ethical considerations for families and physicians alike? Barron Lerner, Angelica Berrie Gold Foundation Associate Professor of Medicine and Public Health at the Columbia College of Physicians and Surgeons and a member of the Columbia-Presbyterian Medical Center Ethics Committee, spoke at neurology grand rounds about the issues physicians must consider and the steps they should take when deciding whether to remove a patient from life support. |
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| Barron Lerner discusses medical ethics at the end of life. | |
 o discuss the ethics of withdrawing life support, I'm going to start by talking briefly about the history of death itself. I'll then review some of the legal and ethical issues that have evolved in this field over the last 20 or 30 years, particularly focusing on withdrawal of life support or extubation (removing the tube that connects the patient to the ventilator). |
History of death
In an era prior to ventilators, CPR and other types of technologies, when one died, one died. Death was what we might call a cardiovascular death. Your heart stopped and you stopped breathing. Since the 1960s, death has shifted from an event to a process--largely due to the rise of intensive care units and other types of life-preserving technologies. Unfortunately, there are procedures that many physicians and patients are forced to go through during the modern dying process. |
This issue first came to public attention in the late 1960s with the Harvard Brain Death Committee, which has since become the subject of a large literature. For our purposes today, the committee established brain death as an alternative way to declare death in people who had no meaningful chance of recovery. How could you help these people to die in a technological era? Of course, few patients meet the specific criteria of brain death--the entire cessation of cerebral function. The vast majority of cases are more complex, involving severe neurologic damage. |
Legal deaths
The next main event was the Karen Ann Quinlan case, which first articulated that people have a right to die if they are in a terminal and irreversible state. After a protracted court battle, the New Jersey Supreme Court ruled in the mid-1970s that Quinlan's ventilator could be discontinued. Much to the surprise of everyone involved, Quinlan actually lived for many years subsequently--an important reminder that this is one of the possible outcomes. But after the Quinlan case things became more, rather than less, complicated as new legal and ethical issues were raised. |
Do-not-resuscitate (DNR) laws were one of the earliest legal approaches to the issue of death and dying. New York was the first state to adopt a DNR law in the late 1980s. But DNR laws are limited in their ability to deal with the specific topic of taking someone off a ventilator. (Obviously, the vast majority of such patients should be and are DNR.) The laws have been very useful, however, in the general sense of getting physicians to cut back on aggressive treatments. |
In the wake of the Karen Ann Quinlan case, different states began to pass laws pertaining to end-of-life care. The issue reached the Supreme Court through the 1990 Nancy Cruzan case. This case involved whether to discontinue the feeding tube of a young woman from Missouri who was in an irreversible neurological condition. The Supreme Court's ruling in that case has been very relevant to New York. Basically, the state of Missouri had opposed the removal of the feeding tube because it felt there was not "clear and convincing evidence" that Nancy Cruzan, when she had capacity, would have wanted the tube removed in that situation. |
The Supreme Court permitted feeding tubes to be taken out but also ruled that individual states had the right to set guidelines for such actions. By leaving the decision up to the various states, the court allowed the clear and convincing evidence standard to persist. New York legal precedent uses the term "clear and convincing" as well, joining Missouri and a few other states in establishing a very high standard of evidence for the removal of life support. |
Clear and convincing evidence
What constitutes clear and convincing evidence that someone would not want aggressive treatment if they were to become severely ill? While many types of evidence can be used to meet this standard, the best is an advance directive, of which there are several types. |
Living wills were the first iteration of advance directives. There was a big surge of interest in living wills after the Quinlan case, although they did previously exist. In a typical living will, a person generally stipulates, "If I am in an irreversible neurological condition, I do not want the following types of interventions." Of the many flaws in the living will process, the main problem is that you can never predict in advance the exact type of neurological impairment, or the exact prognosis. As a result, it was and remains difficult to apply these types of documents to everyday practice. |
The notion of a health care proxy was one of the potential solutions proposed. An individual designates a proxy to make health decisions if he or she loses capacity. New York now has a health care proxy law. A proxy can avoid potential problems with a living will because you don't need to specify everything in advance. Your proxy uses his or her judgment to decide. Obviously, it works best if the proxy and the patient--with or without the doctor--have actually had a discussion about the patient's preferences. Unfortunately, in some cases there hasn't been adequate discussion and the proxy is put in a difficult situation. |
At least on paper, if you designate a proxy and fill out the form properly--there have to be two witnesses and a backup proxy--these documents can be very useful. Indeed, they would be ideal for the extubation cases we're talking about today, because in most cases the patients do not have capacity. |
Withdrawing versus withholding treatment
Another point that's always worth emphasizing is the distinction between withdrawing and withholding treatment. Today we're talking about withdrawing treatment. Many times we're in a situation where the issue is withholding treatment. For example, in the emergency room, do you intubate someone (put them on a ventilator)? Do you perform CPR? Legally and ethically, there is no distinction between withholding and withdrawing treatment. Emotionally, we may feel a distinction between the two. Somehow it seems harder to take someone off a ventilator--with the knowledge that they will possibly expire shortly thereafter--than it does to never place that person on the respirator in the first place. |
One point to consistently emphasize is the need to do the right thing for the patient in the given circumstance. The fact that the person happened to have been intubated earlier in their course shouldn't compel you to behave in a certain way afterward. It's one event that occurred, and down the road you may need to reassess. If instituting ventilatory support was inappropriate at one point, it may become appropriate to withdraw ventilation at another point. So there's really no distinction. |
Health care proxies
As I alluded to, there are several problems with health care proxies as well. First, most people don't fill out either living wills or health care proxies. There are many estimates, but the best guess is that around 15 percent of people have some type of advance directive. |
Very aggressive efforts to try to increase the number of advance directives can help. The Patient Self-Determination Act was passed in 1991. Every patient admitted to this hospital now gets information about health care proxies and advance directives in their packet. Again, however, if no one follows up the forms often won't get filled out. |
In the ethics literature, some people have begun to argue that the problem may not be that people aren't hearing about advance directives but that a lot of people simply don't want to fill them out. Certainly in my clinic experience there are many patients--whom I often have known for a long period of time--who basically rebuff my efforts. They say that they want to deal with the situation when it comes up. |
Other mistakes can occur with improperly filled-out forms or when there is contradictory information--either on the health care proxy form itself or in the space for "optional instructions." Some patients come in with both health care proxies and living wills, and there will be contradictory information between the two; the living will suggests one thing, while the health care proxy suggests something different. So, again, these forms are not panaceas. |
Food and fluids
While we're talking today about withdrawing ventilator support in particular, the issue of food and fluids takes on particular importance in the state of New York, based on legal precedents and the health care proxy law. New York maintains an even higher standard than clear and convincing evidence that is necessary in order to withdraw food and fluids. There must be written or explicit documentation that the issue of withdrawing hydration and food was discussed with the patient before he or she lost capacity. It remains very difficult to stop feeding critically ill patients. |
This strict standard was a result of the involvement of certain religious groups in passing the New York state end-of-life legislation. These groups thought that there should be a distinction between interventions such as the ventilator and those such as food and fluids--which they felt to be qualitatively different. |
Extubation
We can meet the clear and convincing standard for an extubation if either the patient designated a health care proxy or a living will indicates that in the event of irreversible neurologic damage the person would not want specified interventions. For example, we can legally extubate patients who clearly indicated before they lost capacity that they would want a ventilator discontinued in the event of irreversible neurologic damage. |
However, in most cases, such clear advance directives do not exist. The question then becomes: Can you generate clear and convincing evidence for withdrawing ventilator support if there's no advance directive? The answer is yes, but it's tricky and it's important to think about how you want to do this. |
Take a hypothetical case of a patient with some type of severe neurological damage and no advance directive. The family either comes to you (requesting removal of the ventilator) or you go to the family and say, "We gave it a try, but it's clear that there's not going to be any meaningful recovery here." The first thing to do is to make the patient DNR. It's logical that if the heart stops we're not going to perform resuscitative measures. But beyond that, what about the issue of taking someone off the ventilator? You need to sit down with the family and ascertain if there is any oral evidence that the patient would not have wanted this type of intervention. |
You can establish clear and convincing evidence from oral statements. Sometimes you need to sit down with the family and jog their memory. You need to ask, "Did anyone in the family die in a situation like this? Were you ever sitting down and watching one of the many television shows that deal with this issue? In talking about this issue, did they ever mention what they might prefer in a situation like this?" You'd be surprised that you can find a lot of information about this type of thing. |
You want to be careful not to cross the line and turn this into coaching. You don't want to put words into families' mouths. You do want an honest discussion about what the person would have wanted in this situation. That's the main thing to keep in mind here. You don't want to do what the doctors want or what the family wants. You want to know what the patient would have wanted. Through this type of oral testimony, you can generate clear and convincing evidence. |
Ethics consult
In this hospital, based on the new requirements written up after the merger with New York Hospital, we on the Ethics Committee ask that an ethics consult occur in any extubation cases. The situation might not require a formal ethics consult, but at least a review to make sure that the "I"s are dotted and the "T"s are crossed and that an appropriate note has been written in the chart, documenting the clear and convincing discussion. It's a little bit like Big Brother, perhaps, and a lot of physicians around here obviously know how to make these decisions very well. |
This discussion is designed in part to increase the educational awareness around the institution, particularly among house staff and others who might not have experienced this process. The Ethics Committee, on which I sit, is available for informal or formal consultation on these tricky but increasingly common and important cases. |
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