One of the ethically most vexing decisions for clinical care providers is to withdraw a life-sustaining treatment. Many of the hallmark cases in American bioethics involve exactly that type of decision. In the case of Ms. Karen Quinlan , which is now half a century old, the treatment forgone was ventilation. Mr. Cinque refused continued dialysis . Mr. Dax Cowart refused further treatment of his life-threatening burns . The husband of Ms. Terry Schiavo wanted the artificial nutrition and hydration stopped after his wife had been in a persistent vegetative state (PVS) for more than two years . All of these cases ended up in court. And when, more recently, a nurse at a California nursing home refused to provide cardio-pulmonary resuscitation (CPR) in accordance with the facility’s Do-Not-Resuscitate (DNR) policy , many a commentator was appalled.
Why the upheaval about the events in the nursing home? After all, the success rates of CPR, particularly for a frail 87 year old nursing home resident, are abominable [6, 7] and the side-effects frequent and significant . Even when it became clear from testimony of the family that the patient had been aware of the facility’s DNR policy and did not want CPR, some commentators continued to insist that the facility’s staff should have attempted CPR anyway, as was done by the Emergency Medical Services personnel upon their arrival at the scene – to no avail.
This insistence on CPR reflects a widespread and deep seated angst about withholding or withdrawing any type of life-sustaining intervention. Although most professional care givers are aware of the potential harm that can come to their patients when certain life-sustaining treatments are attempted or continued, many assume that the morally safer route is to always provide the treatment rather than withhold or withdraw it . But is it?
In this article we will argue that the aforementioned assumption is mistaken. We will show that in most instances, the morally safer route is to forgo life-sustaining treatments, particularly when their likelihood to effectuate a truly beneficial outcome has become small relative to the odds of actually harming the patient. We will argue that the burden of proof and justification does not rest on the health professional who wants to withhold or withdraw a life-sustaining treatment, but rather on the one who wants to initiate or continue such treatment. From an ethical perspective, the default is “do not treat.”
To act or not to act
Medicine’s preoccupation with non-treatment decisions seems unusual when compared with most other scenarios in life in which we face some kind of moral quandary. The designated driver does not run a moral risk if he decides not to accept the drink offered to him by a dear friend, but only when he does accept. If he caves in and accepts the drink, this moral risk materializes when he next gets into his car and drives himself and the members in his party back home. It is by doing certain things, by bringing about some kind of change in the natural course of events, that we become morally responsible.
This is why a thoracic surgeon about to embark on a lung transplant must carefully assess whether that modification of the patient’s body is beneficial to the patient before starting the intervention; this is why she must first obtain the patient’s consent to the surgery. In contrast, if the surgeon were to decide that a transplant is too dangerous for this frail patient, and hence rules out that treatment option, she does not need the patient’s consent not to transplant.
Now there are situations in which we incur moral responsibility even if we did not do anything. Precisely because we have the freedom to act or not to act, to intervene or stand by, to assist or ignore, we can at times be held responsible for the things we did not do. Or to use the jargon of ethicists: We are always responsible for our commissions, but occasionally we are also responsible for our omissions. Other terms frequently used to label such morally reprehensible omissions are “failure” or “neglect.”
The teacher who fails to help a struggling pupil incurs a moral risk. The mechanic who neglects to tighten the bolts incurs a moral risk. And likewise, the nurse practitioner who fails to properly sterilize the injection site, or the respiratory technologist who neglects to inform the patient of common side-effects. What sets all these examples apart from other cases of passivity is that the protagonists did not do what they were morally obligated to do. A respiratory therapist is not obligated to disclose every possible side-effect; but she is obligated to inform the patient about serious or common side-effects. A nurse practitioner is not morally obligated to verify that the manufacturer properly sterilizes each needle prior to packaging; but he is obligated to properly sterilize the injection site itself.
We can conclude, then, that every single time health care professionals decide to do something (i.e., commit an act), they are morally responsible for that decision and its consequences. But such moral responsibility does not always arise if a care giver decides not to act but remains passive instead. Such an omission is ethically blameworthy only if the care giver was morally obligated to act but failed to do so.
How does this translate to the domain of life-sustaining medical interventions? Any time pulmonologist Dr. P. hooks up a patient to a ventilator, she thereby incurs moral responsibility for that decision and its consequences. It does not matter whether the ventilation is a standard, even routine intervention that every pulmonologist would have initiated under the circumstances. If, for example, the patient is severely harmed as a result of the ventilation, Dr. P. should feel bad about that outcome. If, for example, it becomes clear that the patient had refused the ventilation but Dr. P. had forced the treatment onto the patient, she could be liable to charges of battery. However, the situation is more complex if Dr. P decides not to ventilate the patient. Now the question arises whether Dr. P. was morally obligated to initiate the ventilation.
The two necessary conditions for medical treatment
Two necessary conditions must be met before a health care professional is morally permitted to provide a treatment. Firstly, the treatment must be medically indicated. That is, the provider must conclude that given this patient’s diagnosis and prognosis, treatment X has a reasonable chance of benefitting the patient and is unlikely to cause disproportionate harm.
Secondly, the patient (or the patient’s proxy decision maker in case the patient herself is incompetent) must be informed about her diagnosis, prognosis, and the nature of treatment X, and must then consent to it. In rare circumstances, such as when an incompetent patient with a life-threatening condition is brought to the Emergency Room, the patient’s consent may be presumed. But even then it is this “presumed consent” that fulfills the second necessary condition for initiating a medical intervention.
If either of these two necessary conditions is not met, a health care provider may not provide treatment. Thus, if Dr. P. decides that ventilation of patient A will not likely relieve the patient’s symptoms or surely cause more harm than good, forgoing ventilation is not a form of neglect. Indeed, knowingly providing a treatment that is likely to be futile violates the bioethical principle of non-maleficence and may legally constitute battery if the foreseen harm actually occurs.
Suppose Dr. P. concludes instead that ventilation is medically indicated for patient A. She next informs her competent patient about his condition and his options, but the patient refuses the option of ventilation. Once again, a necessary condition for treatment has not been fulfilled. So the physician ethically may forgo the ventilation. Moreover, if she forces the ventilation onto the patient anyway, she may be liable to legal charges of battery.
As straightforward as the foregoing analysis may seem, in real life it turns out to be very difficult to withhold or withdraw a life-sustaining treatment. Many health care providers believe that any omission of a life-sustaining treatment is tantamount to euthanasia or at least assistance in the patient’s suicide. And health professionals are not the only ones to reason in this fashion. In one of the trials involving the American physician Jack Kevorkian (who assisted many patients in their suicides), the judge contended that “The distinction between assisted suicide and the withdrawal of life-support is a distinction without merit.” .
The late American bioethicist James Rachels likewise tried to defend the morality of euthanasia by equating it to the withdrawal of life-sustaining treatment. To do so, he used a thought experiment about an uncle who is supposed to keep an eye on his little nephew while the latter is taking a bath. If the uncle pushes the kid under water and drowns him, surely he is guilty of murder, Rachels contends. Now suppose the kid falls while in the tub, hits his head, and unconsciously slips under water. If the uncle passively stands by without grabbing the kid, letting him drown instead, the uncle is equally responsible for the child’s death even though he did not actually do anything. Apparently, so Rachels concludes, the difference between being active and remaining passive has no ethical significance .
But the US Supreme rejected that conclusion, insisting instead that “the distinction between assisting suicide and withdrawing life-sustaining treatment.... is both important and logical; it is certainly rational” . To understand why the distinction is valid indeed, we need to remember our conclusion reached earlier: Not all instances of a physician’s remaining passive amount to neglect. The physician must have failed to do what he was morally obligated to do. So was he morally obligated to provide the life-sustaining treatment?
If the health care team after a careful assessment of the patient’s condition and the patient’s own goals and interests is convinced that a particular life-sustaining treatment will do more harm than good, it should not attempt such treatment, even if the patient will surely die without. The team, then, is not like the second uncle in Rachels’s thought experiment who stood by idly when he could have simply grabbed the kid out of the water. This health care team cannot grab the patient out of death’s clutches. It is more akin to the sea captain who sees one of his sailors being swept overboard by a raging storm; jumping after him will be pointless.
Similarly, if the patient refusing the life-sustaining treatment is competent, one of the two necessary conditions for treatment discussed above is not fulfilled and hence the patient’s health care providers are not ethically permitted to start the treatment. It may be the case that the patient is refusing the treatment in an attempt to end his life. But even if the refusal is suicidal, that does not mean the health care team is assisting the patient in his suicide. The team simply has no ethical mandate to start the life-sustaining treatment when a competent patient refuses the treatment. For sure, the team members should inform the patient, counsel him, negotiate, and use any other respectful means to get the patient to at least try a life-sustaining treatment that is likely to be effective and unlikely to cause severe side-effects. But if a competent patient persists in his refusal, the health care team has no longer a choice in the matter, must abstain from the refused treatment, and hence cannot be responsible either for the patient’s subsequent death.
So we can conclude that in order for health care providers to be liable to charges of passive euthanasia, they must be neglectful; they must have failed to provide a treatment that is both medically indicated and consented to by the patient.
But there is more. For the team’s abstention of treatment to qualify as passive euthanasia, it must first qualify as “euthanasia.” That is to say, the decision to abstain from further treatment must be aimed at securing the patient’s death. Consider the case of Karen Quinlan again. After she had been in a PVS for more than a year and after much legal wrestling, it was finally decreed that the ventilator should be removed. But upon weaning Ms. Quinlan from the ventilator, she continued to breathe on her own (and actually lived for nine more years until dying from a pneumonia). Now if the health care providers, surprised by her survival, had exclaimed “That was not supposed to happen! We had planned for her to die,” this might have cast doubt on their intentions. But in the absence of evidence to the contrary, it is much more reasonable to assume that health care professionals who conclude that a treatment is doing more harm than good and hence needs to be forgone, do so out of the humble acknowledgment of and acquiescence in their own limits and in the limits of modern medicine more in general.
The difference between withholding and withdrawing
So far, we have not distinguished between withholding and withdrawing a treatment. But as a matter of fact, it appears to be much more difficult for health professionals and family members to agree to the withdrawal of a life-sustaining intervention. Once a patient has been hooked up to life-sustaining technologies, those tend to acquire the status of a patient’s own organs which it would be wrong to cut out. Consider artificial nutrition and hydration. We seem to forget that it was us who surgically made an artificial opening in the patient’s abdominal wall and inserted a plastic tube through which factory-produced nutrients are being pushed by a man-made machine running on electricity supplied by the nearby power plant. There is nothing natural about this manner of consuming a meal. And yet the artificial feeding tube has somehow acquired the status of an umbilical cord that may not be cut.
From an ethical perspective the same two necessary conditions outlined earlier for medical treatments apply equally to the initiation of treatments and the continuation thereof. A health care provider needs to have both a medical indication and a consent to start treatment; and she likewise can only continue the provision of treatment when and as long as that treatment is still medically indicated and the patient is continuing to consent to its provision.
If, for example, the expected benefits of a treatment do not materialize and the harmful side-effects are more serious than expected, that treatment must be discontinued. It would be immoral to tell the patient “we are sorry that the treatment turned out to be harmful, but since we started it, it now must be continued.” Likewise, if a competent patient withdraws his earlier consent for treatment, it would be immoral to tell the patient: “Sorry, but you should not have consented to us starting the treatment; your earlier consent now allows us to continue forcing it upon you.”
In fact, the withholding of treatment is morally more risky that the withdrawing thereof. At least if a treatment was tried for a while and then shown not to benefit the patient, there is clear evidence that it is not medically indicated anymore. But decisions to withhold treatments prior to a trial period are always based on predictions only.
Finally, if a treatment of uncertain benefit is tried for a while, but the hoped-for benefits don’t materialize, its withdrawal is not a new decision that must be ethically justified. Rather, it is the termination of a clinical experiment that failed.