TORONTO, AUG. 29, 2004 (Zenit.org).- In a speech last spring, John Paul II upheld Catholic moral tradition that artificial nutrition and hydration and other life-sustaining measures are to be assessed in terms of benefits and burdens of the intervention to the patient.
Now, a group of bioethicists and health care experts at a recent Canadian Catholic Bioethics Institute colloquium addressed a few implications of the Pope’s words for intervening in some of the most common medical conditions in the elderly and the dying for which artificial nutrition and hydration is used.
Dr. William Sullivan, director of the institute, shared with ZENIT the colloquium’s conclusions about the implications of the principles and line of reasoning used in John Paul II used in his speech.
Part 1 of this interview appeared Friday.
Q: Did colloquium participants think that what the Pope said in his speech on artificial nutrition and hydration and persistent vegetative state or post-coma unresponsiveness is relevant to people with other medical conditions?
Sullivan: Yes, in the sense that the papal speech affirmed the intrinsic value and dignity of all persons. Decisions about artificial nutrition and hydration, or ANH, ought not to be based on the judgment that persons with a severe cognitive and/or physical disability have less value or dignity than other persons.
The papal speech also affirmed the distinction between ordinary and extraordinary means of sustaining life.
This implies that patients and their family have a responsibility to assess carefully the benefits and burdens of various options for treatment and care, in light of their personal duties. This responsibility is the same with respect to any medical condition and for any patient.
Q: Why did the participants of this colloquium think it was important to address the implications of the Holy Father’s speech for intervening in medical conditions affecting the elderly in which ANH is most commonly used?
Sullivan: One principle of reasoning is that similar cases are to be understood similarly. A second principle is that tough cases make bad laws. That is, rare or unusual conditions are a poor basis for formulating general policies.
The participants were aware that, of the cases in which ANH is used in the care of the elderly, normally less than 1% involves someone in a persistent vegetative state [PVS] or post-coma unresponsiveness. There are many particular and contingent clinical factors that distinguish PVS from other conditions such as stroke, Alzheimer’s disease, Parkinson’s disease or cancers of the head and neck.
These factors may be relevant to assessing the burdens and benefits of ANH in these conditions.
Q: Could you provide some examples of how clinical differences might change the assessment of artificial nutrition and hydration in these conditions?
Sullivan: People affected by a stroke or Parkinson’s disease are usually conscious, may be capable of swallowing food and fluids with the assistance of others using hand-feeding techniques, and may be capable of consenting to a proposed treatment.
In such cases, hand-feeding may be an effective alternative option to tube feeding. Hand feeding may also promote a greater sense of solidarity with patients by humanizing their care.
People with Alzheimer’s disease may not understand the reason for a feeding tube and may persist in attempting to pull a tube out, sometimes causing serious injury to themselves. A significant burden for such people might be the use of various forms of restraints to prevent them from pulling out their feeding tube.
Those who have swallowing difficulties because of a cancer of the head or neck may not respond positively to ANH.
Q: For patients with a degenerative neurological condition such as Alzheimer’s disease, should artificial nutrition and hydration ever, or always, be offered? If ANH is started, should it ever, or always, be withdrawn at some point? Did the colloquium participants address these questions?
Sullivan: The colloquium did not seek to prescribe what people ought to conclude in every situation in which a decision about ANH for an elderly patient needs to be made.
Rather, the colloquium’s final statement draws attention to some moral principles and an approach to making decisions about life-sustaining interventions in the Catholic moral tradition that was affirmed in the papal speech.
A basic guideline for making decisions about any proposed plan of care or treatment, including ANH, is stated in Paragraph 7 of the statement from the Toronto colloquium: “Treatments cannot be classified ahead of time as ordinary or extraordinary,” that is, as morally obligatory or optional. A careful assessment must be made of their benefits and burdens in light of the patient’s duties.
Alzheimer’s disease is one of several medical causes of dementia. It is difficult to make general claims about either always or never offering people with dementia ANH because there are some limitations to the studies showing benefits and burdens in the medical literature.
A basic principle of medicine is “primum non nocere,” or “first, do no harm.” If it is evident, in a particular case of advanced dementia, that ANH is, or would, be of little benefit and is, or would, cause significant harms, it should not be offered — or if it is in use, it should be withdrawn.
Q: Who should decide whether, in a given condition, artificial nutrition and hydration should be used?
Sullivan: The colloquium’s reflections note that it is the responsibility of the patient and/or the family to make decisions in each case after they have considered the evidence in light of all relevant personal circumstances.
It is the responsibility of health care professionals, in the appropriate context, to inform the patient and/or the family of the options and the evidence for the benefits and burdens of each option.
Although the responsibility for the decision rests with the patient and/or his or her family or substitute decision-maker, health care professionals are entitled to give a medical opinion.
Q: Did the participants of the colloquium think that advance directives regarding ANH are a good idea?
Sullivan: Yes, the participants thought such directives, if done properly, were a good idea. It is important for persons to anticipate and talk with their loved ones and care givers about end-of-life care before a medical crisis arises.
The statement of the Toronto colloquium acknowledges that there may be cultural and jurisdictional variations in the practice of advance directives.
In every case, however, a patient who formulates advance directives, the representative of the patient who is authorized to make decisions, and health care professionals and institutions that implement these decisions, should always respect the patient’s inherent value and dignity.
Q: Your colloquium discussed a number of real-life cases involving artificial nutrition and hydration for patients with various medical conditions. Was it helpful to reflect on such cases in light of the Catholic moral tradition that distinguishes between ordinary and extraordinary means?
Sullivan: Yes. Beginning with real-life cases ensured that our discussions were relevant to the concrete questions that people face. It also ensured that participants attended to particular and contingent factors that may be relevant to assessing the benefits and burdens of various options.
We found that some disagreements that arose when considering principles abstractly turned out not to be morally relevant to the concrete cases.
Q: What topics arose from your colloquium on which Catholic bioethicists need to deliberate further?
Sullivan: There were at least two topics that arose in ou
r discussions. The first issue has to do with whether it is a moral requirement for patients to make decisions about health care in accordance with a deliberate plan for their own lives. A fundamental question here is whether feelings have a role in knowing values, and should be considered in these deliberations. Another is how this knowledge is to be assessed by others.
The second issue has to do with how to understand a treatment’s burden. Some confine burden to those of the treatment modality itself, such as pain, suffering or cost. Others also consider the burdens of the underlying illness.
One key question here is what is entailed by respecting the dignity of persons who are living with a severe cognitive and/or physical disability. That is, whether refusing treatment on the grounds of a present or anticipated deterioration in cognitive and/or physical functioning, whether one’s own or another’s, is compatible with respect for that person’s ontological dignity.”
Q: Are there any plans under way to address these questions?
Sullivan: Colloquia such as the ones held in Toronto in 2003 and 2004 affirm the fruitfulness of discussions and collaborations among Catholic bioethicists. There is need for similar opportunities for Catholic bioethicists to exchange ideas and to work together in their own diocese and between dioceses worldwide.
One recent initiative to promote such ongoing collaboration among Catholic bioethicists around the world is being supported under the aegis of various national associations of the Sovereign Military Order of Malta.
It is hoped that a future international colloquium will take up some of the challenging residual questions discussed above.
