What About Mechanical Ventilation of ALS Patients?

If someone tells you that ventilator support for ALS patients always is or is not a morally proportionate alternative, get a second opinion.

Stephen Hawking gives a lecture for NASA's 50th anniversary on April 21, 2008
Stephen Hawking gives a lecture for NASA's 50th anniversary on April 21, 2008 (photo: NASA/Paul Alers)

Q. Do you consider the use of mechanical ventilation in ALS patients an extraordinary or disproportionate means to prolong life? Would the discontinuation of mechanical ventilation in ALS patients be a proportionate measure?

Q. What would be your basis to justify the discontinuation of mechanical ventilation in ALS patients? Are there other ethical principles that need to be considered in making the decision to discontinue mechanical ventilation? How about the principles of “patient quality of life,” “autonomy” and “therapeutic proportionality”?

 Q. Can the principles applied to justify discontinuation of mechanical ventilation in ALS patients be used in withdrawal of artificial nutrition and hydration?

All questions concerning the continuation or removal of life sustaining medical procedures, including mechanical ventilation for ALS patients, proceed on the basis of a comparison of the strength of the reasons arising from an assessment of reasonably hoped for benefits verses reasonably foreseen harms. This presumes, of course, that any intention to kill, whether as ends or means, has already been excluded from the assessment.

If the reasons for removal/discontinuation are stronger than the reasons for acceptance/continuation, we refer to the procedure as “disproportionate” (or extraordinary). If the reasons for accepting/continuing a medical procedure are stronger, we say the procedure is “proportionate” (or ordinary).

Although ALS is a complicated condition, the analysis of whether or not some form of medical care is proportionate or disproportionate for patients suffering from it does not constitute a special case.

How then can we determine whether the reasons for removal are stronger than the reasons for continuation? 

A common way, favored in documents of the Catholic Church, is to ask whether the proposed treatment is either futile or (not both and) excessively burdensome to the patient. If it is one or the other, then we are warranted in judging it to be disproportionate (extraordinary). If not, accepting it is morally obligatory.

Mind you, we are not asking whether the life of the person is burdensome to the patient. Although that is certainly of great concern to his loved ones and caregivers, it is not part of this analysis.

We are interested in understanding an assessment of whether imposing/continuing this specific treatment is likely to assist the patient’s overall health condition or whether the treatment promises to cause him serious distress that could be avoided by withholding it.

Allow me to repeat: We are not asking about the distress caused from being alive with some condition. If that were the relevant question, then in the face of great suffering (from ALS or any other condition), we might seem to be justified in acting against that which is “causing” the suffering. But that would mean acting against the life, acting to bring about life’s cessation (i.e., acting for death). But acting in any way to cause or hasten death is acting to kill the patient, which is never morally legitimate.

So we ask two interrelated questions:

  • Does the mechanical ventilation provided to ALS patients promise reasonable hope of benefit?
  • And: Is the procedure likely to impose grave burdens on the patient?

The questioner asks me to answer these questions. But surely without knowing the specific medical details of this or that ALS patient, neither I nor anyone else can state that medical ventilation is or is not medically proportionate.

This is a serious error that moral theologians regular succumb to: asserting general “Yes” or “No” answers to questions that by nature deal with particulars without which the questions cannot be answered. If someone tells you that ventilator support for ALS patients always is or is not a morally proportionate alternative, thank them and get a second opinion.

On questions such as this one, we can only speak in the conditional: If mechanical ventilation for patient X is either medically futile or gravely burdensome to patient X, then it may be judged disproportionate (extraordinary) and may be removed or withheld in good faith.

We say “gravely” burdensome, because if it imposes only a minor burden — which most all procedures, not to mention simply being in the hospital, impose — then accepting/continuing it may be more reasonable and hence obligatory. Even more so in the instance we are considering since the removal of ventilator support from ALS patients may threaten to result in the hastening of their deaths. Remaining alive is always good, even if a life is accompanied by grave suffering. So there is always a good reason to act to sustain life.

To permit the hastening of death (but never its deliberate causing!), we need to have a stronger reason. That reason will be found, if it is to be found at all, in the burdens imposed by the procedures in question and the likelihood of their causing some benefit.

 One of the questions mentions three additional “principles”: patient quality of life, autonomy and therapeutic proportionality?    

Autonomy here effectively means that medical decisions are for patients to make. If they are not capable of making decisions, caregivers should make decisions according to their known wishes. If their wishes are not known, then decisions should be made in accord with their best interests.

Whether patients or their proxies make the decisions, all medical decisions ought always be subject to moral truths taught and defended by the Catholic Church: e.g., it is never licit to intentionally kill oneself or another.

Quality of life is properly factored into the assessment when we ask whether procedures cause grave burdens.

Therapeutic proportionality, I presume, refers to comparing the promised benefits of a procedure with the harms threatened. A thorough and good assessment of whether mechanical ventilation is morally obligatory includes all three principles.

The third question asks whether the principles governing the removal of mechanical ventilation from ALS patients also can be used to assess the removal of food and water from the same patients.

The answer is Yes. If administering food and water is futile or gravely burdensome to a patient, then they too may rightly be withheld/removed.

But the administration of food and water is only rarely futile. It’s important to see that although food and water are given to patients suffering from various diseases, they are not administered as a treatment for those diseases. Patients require food and water, as do non-patients, to maintain their bodily life.

This is why John Paul II in 2004 said:

I should like particularly to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act.”  

He didn’t mean that the processes by which they are administered do not require medical expertise or involve medical equipment. He meant that since life is not a disease, and food and water are administered to preserve life, their administration should not be considered a treatment for disease: not in this sense a “medical act.”

Moreover, food and water very often (most often?) can be administered at minimal expense and with little discomfort. Given all this, John Paul II taught that their administration “should be considered, in principle, ordinary and proportionate, and as such morally obligatory.”

But he went on to say that this holds only so long as their administering achieves the purposes for which they were chosen, namely, “providing nourishment to the patient and alleviation of his suffering.”  If those purposes cease to be met, food and water are no longer obligatory.