TORONTO, AUG. 27, 2004 (Zenit.org).- Thirty bioethicists and health care experts gathered recently at a colloquium hosted by the Canadian Catholic Bioethics Institute to study John Paul II’s speech last spring on life-sustaining treatments and the vegetative state.
To fully understand the implications of the papal speech and the colloquium’s findings, Dr. William Sullivan, founding director of the institute, shared with ZENIT some scientific and moral issues concerning tube feeding or artificial nutrition and hydration for people in a persistent “vegetative” state or post-coma unresponsiveness.
Part 2 of this interview will appear Sunday.
Q: What was the focus of the colloquium?
Sullivan: The papal speech addressed the particular case of persistent vegetative state (PVS) or post-coma unresponsiveness (PCU).
We discussed the implications of the general moral principles that were affirmed in the papal speech and applied to artificial nutrition and hydration (ANH) in PVS or PCU. We focused on the most common medical conditions affecting the elderly, such as stroke, Alzheimer’s disease, Parkinson’s disease and end-stage cancer.
Following the Canadian Catholic Bioethics Institute’s approach to researching bioethical issues, we considered, first, the clinical differences between PVS or PCU and these other conditions that may be important in assessing the benefits and burdens of ANH.
We also discussed an area not addressed by the papal speech, namely, how ought decisions about ANH be made for people who do not have the ability to decide for themselves? Our discussions began with case studies based on the history of real patients.
Second, we examined the fundamental assumptions that seemed to underlie disputes about ANH, such as, what constitutes a “benefit” or a “burden”?
Third, we considered decisions about ANH in the context of scarce familial and societal resources.
Q: You mentioned the Holy Father’s speech on artificial nutrition and hydration in PVS or PCU. What is known about this medical condition?
Sullivan: Coma occurs after various types of injuries that affect the function of the brain, such as trauma to the head, near drowning, strokes, cardiac arrests or a drug overdose. PCU describes a state in which an individual who was in a coma appears to wake up and to have what are called sleep-wake cycles. Nevertheless, he or she remains entirely unaware and unresponsive to the environment.
Is there any cognitive-affective activity in the brain? Medicine is based on observations, including measurements of the electrical activity and metabolism of the brain.
Based on what we know so far, we can say that brain metabolism appears to be low in PVS or unresponsive patients. We do not know, however, whether this means that there is a global damage to the brain’s neurons or to only some vital brain regions and the connections among them.
In my opinion, medical science cannot rule out definitively the presence of a spiritual life in PVS or unresponsive patients in whom there is still evidence of some activity in the brain, even though levels fall short of conscious perception.
Medical science is unable to affirm or deny whether there might be some truth to the biblical assertion in Song of Songs 5:2, “I am asleep but my heart is awake.”
Q: What is the difference between a “persistent” and “permanent” vegetative state?
Sullivan: As the length of time in an unresponsive state following coma increases, recovery becomes less and less probable. At some point, usually 12 months, neurologists will conclude that this state of unresponsiveness is highly likely to continue without recovery.
However, this does not mean that some level of recovery is impossible with proper rehabilitative interventions. In a few cases, recovery to normal brain function has been reported. In most cases, however, if there is a recovery, the person will have a severe cognitive-affective disability.
According to a 1994 multi-society task force report, the medical prognosis that a vegetative state, or state of post-coma unresponsiveness, is “permanent” means that, if consciousness is recovered, the patient would most likely be left severely disabled. At issue here is the presumption that the life of an individual who is conscious but severely disabled does not have any value.
Q: What is meant by artificial nutrition and hydration?
Sullivan: ANH does not refer only to feeding tubes but also to ways of assisting an individual with a swallowing problem to ingest food and water orally. Trying to feed an unresponsive patient by mouth, however, would be like trying to feed someone who is sleeping.
In order to provide such an individual with adequate sustenance safely, one has to find a way to bypass their inability to chew and to swallow, and to deliver the appropriate sustenance to their stomach.
Q: Is ANH similar to other forms of life-sustaining or preserving technologies, such as kidney dialysis or a respirator?
Sullivan: Some ethicists argue that there is a social significance attached to nourishing the vulnerable and dependent in our care. This makes ANH importantly different from other medical acts that involve life-sustaining technologies. Giving food and water to those who are hungry and thirsty is a symbolic expression of human solidarity and care giving.
For thinkers like Daniel Callahan, the norm of caring for another by providing food and water loses its meaning if ANH is provided to some individuals but not others.
On the other hand, most medical, legal and ethical thinkers view ANH as similar to other forms of life-sustaining technologies. If ANH is associated with significant burdens for the individual and family relative to the benefits gained, it may therefore be considered optional.
According to this view, ANH needs to be considered in a particular case according to an analysis of the benefits and burdens of this intervention. This would be the same as for other interventions like a respirator or dialysis. For example, although the provision of food and water by mouth may be part of ordinary care, providing nutrition and hydration through a tube to a patient for whom it is unwanted may not be.
Q: What did the papal statement say about artificial nutrition and hydration for patients in a PVS or PCU?
Sullivan: ANH is usually started as part of appropriate resuscitation of a patient in a context where doctors are uncertain about the patient’s diagnosis or prognosis.
After six or 12 months, depending on the cause of the PCU, the likelihood of recovery becomes increasingly remote. It is in this context that the question of continuing or discontinuing ANH typically arises.
The papal speech states that ANH “should be considered, in principle, ordinary and proportionate and as such morally obligatory insofar as and until it is seen to have attained its proper finality.” In this case this finality refers to the end of giving “nourishment to the patient and alleviation of his suffering.”
Q: How did participants at the Toronto colloquium interpret this statement in the papal speech?
Sullivan: The participants agreed on the following interpretation.
First, the papal speech needs to be understood in the context of the Catholic tradition. The words “in principle” do not mean “absolute” in the sense of “exceptionless” but allow consideration of other duties that might apply.
Second, persons in a state of lost cognitive and affective capacity retain a spiritual soul; their life has intrinsic value and personal dignity, and they must be treated with the full respect and care owed to a human being.
Third, for unresponsive patients to whom ANH can be delivered without being in itself in conflict with other grave responsibilities or overly burdensome,
costly or otherwise complicated, ANH should be considered ordinary and proportionate, and as such, morally obligatory.
Contrary to some early interpretations presented by the media, the papal speech did not propose that ANH is always — that is, without exception — morally obligatory in patients in a PVS or PCU, or in any medical condition for that matter.
The papal speech is consistent with the Catholic moral tradition in which ANH and other life-sustaining measures are to be assessed in terms of benefits and burdens of the intervention to the patient.
The papal speech, however, appeared to make a strong statement about disability. Discontinuing ANH for reasons having to do with the disability of a patient rather than the disproportion of burdens to benefits of an intervention for the patient, is unacceptable.
Based on this interpretation, participants highlighted a series of implications of this teaching for the ethical care of frail elderly and dying patients with medical conditions for which ANH is most frequently used, namely stroke, Alzheimer’s disease, Parkinson’s disease and cancer.
[Sunday: The use of artificial nutrition and hydration for common medical conditions]