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Questions About Medically Assisted Nutrition And Hydration

4. What are the burdens of medically assisted nutrition and hydration?

Our tradition does not demand heroic measures in fulfilling the obligation to sustain life. A person may legitimately refuse even procedures that effectively prolong life, if he or she beiieves they would impose excessively grave burdens on himself or herself, or on his or her family and community. Catholic theologians have traditionally viewed medical treatment as excessively burdensome if it is "too painful, too damaging to the patient's bodily self and functioning, too psychologically repugnant to the patient, too restrictive of the patient's liberty and preferred activities, too suppressive of the patient's mental life, or too expensive."

Because assessment of these burdens necessarily involves some subjective judgments, a conscious and competent patient is generally the best judge of whether a particular burden or risk is too grave to be tolerated in his or her own case. But because of the serious consequences of withdrawing all nutrition and hydration, patients and those heiping them make decisions should assess such burdens or risks with special care.

Here we offer some brief reflections and cautions regarding the kinds of burdens sometimes associated with medically assisted nutrition and hydration.

Physical risks and burdens

The risks and objective complications of medically assisted nutrition and hydration will depend on the procedure used and the condition of the patient. In a given case a feeding procedure may become harmful or even life-threatening. (These medical data are discussed at length in an Appendix to this paper.)

If the risks and burdens of a particular feeding procedure are deemed serious enough to warrant withdrawing it, we should not automatically deprive the patient of all nutrition and hydration but should ask whether another procedure is feasible that wouid be less burdensome.We say this because some helpless patients, including some in a "persistent vegetative state," receive tube feedings not because they cannot swallow food at all but because tube feeding is less costly and difficult for health care personnel.[21]

Moreover, because burdens are assessed in relation to benefits, we should ask whether the risks and discomfort of a feeding procedure are really excessive as compared with the adverse effects of dehydration or malnutrition.

Psychological burdens on the patient

Many peopie see feeding tubes as frightening or even as bodily violations. Assessments of such burdens are necessarily subjective; they shouid not be dismissed on that account, but we offer some practical cautions to help prevent abuse.

First, in keeping with our moral teaching against the intentional causing of death by omission, one should distinguish between repugnance to a particular procedure and repugnance to life itself. The latter may occur when a patient views a life of helplessness and dependency on others as itself a heavy burden, Jeading him or her to wish or even to pray for death. Especially in our achievement-oriented society, the burden of living in such a condition may seem to outweigh any possible benefit of medical treatment and even lead a person to despair. But we should not assume that the burdens in such a case always outweigh the benefits; for the sufferer, given good counseling and spiritual support, may be brought again to appreciate the precious gift of life.

Second. our tradition recognizes that when treatment decisions are made, "account wili have to be taken of the reasonable wishes of the patient and the patient's family, as aiso of the advice of the doctors who are specially competent in the matter." [22] The word "reasonable" is important here. Good health care providers will try to help patients assess psychological burdens with full information and without undue fear of unfamiliar procedures.[23] A well-trained and compassionate hospital chaplain can provide valuable personal and spiritual support to patients and families facing these difficult situations.

Third, we should not assume that a feeding procedure is inherently repugnant to all patients without specific evidence. In contrast to Americans' generai distaste for the idea of being supported by "tubes and machines," some studies indicate surprisingly favorable views of medically assisted nutrition and hydration among patients and families with actual experience of such procedures.[24]

Economic and other burdens on caregivers

While some balk at the idea, in principle cost can be a valid factor in decisions about life support. For example, money spent on expensive treatment for one family member may be money otherwise needed for food, housing and other necessities for the rest of the family. Here, also, we offer some cautions.

First, particularly when a form of treatment "carries a risk or is burdensome" on other grounds, a critically ill person may have a legitimate and altruistic desire "not to impose excessive expense on the family or the community." Even for aitruistic reasons a patient should not directly intend his or her own death by malnutrition or dehydration, but may accept an earlier death as a consequence of his or her refusal of an unreasonably expensive treatment. Decisions by others to deny an incompetent patient medically assisted nutrition and hydration for reasons of cost raise additional concerns about justice to the individual patient, who could wrongly be deprived of life itseif to serve the less fundamental needs of others.

Second, we do not think individual decisions about medically assisted nutrition and hydration should be determined by macro-economic concerns such as national budget priorities and the high cost of health care. These social problems are serious, but it is by no means established that they require depriving chronically ill and helpless patients of effective and easily tolerated measures that they need to survive.[26]

Third, tube feeding alone is generally not very expensive and may cost no more than oral feeding. [27] What is seen by many as a grave financial and emotional burden on caregivers is the total long-term care of severely debilitated patients, who may survive for many years with no life support except medically assisted nutrition and hydration and nursing care.

The difficulties families may face in this regard, and their need for improved financial and other assistance from the rest of society, should not be underestimated. While caring for a helpless loved one can provide many intangible benefits to family members and bring them closer together, the responsibilities of care can also strain even close and loving family reiationships; compiex medicai decisions must be made under emotionaliy difficult circumstances not easily appreciated by those who have never faced such situations.

Even here, however, we must try to think through carefully what we intend by withdrawing medically assisted nutrition and hydration. Are we deliberately trying to make sure that the patient dies, in order to relieve caregivers of the financial and emotional burdens that will fall upon them if the patient survives? Are we realiy implementing a decision to withdraw all other forms of care, precisely because the patient offers so littie response to the efforts of caregivers? Decisions like these seem to reach beyond the weighing of burdens and benefits of medically assisted nutrition and hydration as such.

In the context of official church teaching, it is not yet clear to what extent we may assess the burden of a patient's total care rather than the burden of a particular treatment when we seek to refuse "burdensome" life support. On a practical levei, those seeking to make good decisions might assure themselves of their own intentions by asking: Does my decision aim at relieving the patient of a particulariy grave burden imposed by medically assisted nutrition and hydration? Or does it aim to avoid the total burden of caring for the patient? If so, does it achieve this aim by deliberately bringing about his or her death?

Rather than leaving families to confront such dilemmas alone, society and government should improve their assistance to families whose financial and emotional resources are strained by long-term care of loved ones.[28]