Correspondence
Rethinking the Role of Tube Feeding in Patients with Advanced Dementia
N Engl J Med 2000; 342:1755-1756June 8, 2000
- Article
To the Editor:
Gillick (Jan. 20 issue)1 suggests changing the standard of care of using gastrostomy tubes in patients with advanced dementia. She argues that tube feeding in these patients seldom achieves its intended medical aims and that it does not prevent suffering but actually causes it. She states that this practice deprives patients of the enjoyment that can be derived from eating and the social satisfaction that accompanies feeding by hand.
Feeding by hand is not only an act of social engagement that can be enjoyed by a patient with severe dementia; it is also a psychologically important act of caring for those who provide it. Furthermore, after health professionals or family members devote this time and effort, it is easier for them when the patient gives up eating to accept that this might be the right time to allow the patient to die. I have found that relatives, as well as health care professionals, make more appropriate decisions when they have been personally engaged in this kind of care. On the other hand, those who have not been engaged in such care are often troubled by guilt with regard to decisions about not instituting feeding by gastrostomy tube.
1 ReferencesJochen Vollmann, M.D., Ph.D.
Freie Universität Berlin, D-12203 Berlin, Germany1
Gillick MR . Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med 2000;342:206-210
Full Text | Web of Science | Medline
To the Editor:
Gillick claims that “the Roman Catholic position on the use of artificial nutrition and hydration near the end of life” supports her view that it is not immoral to withhold food and water delivered by tube from patients with dementia. She quotes the Ethical and Religious Directives of the National Conference of Catholic Bishops to support her claim. However, the directive that she quotes addresses only the “morality of withdrawing medically assisted hydration from a person who is in the persistent vegetative state.”1 It does not address “questions already resolved by the magisterium,”1 such as withholding assisted food and water from fully conscious patients with dementia who have nonterminal illnesses, a practice that has always been considered immoral by the Church.2 Gillick also indicates that her claim is supported by the Catholic bishops' statement that assisted nutrition and hydration are required only when they are “of sufficient benefit to outweigh the burdens involved to the patient.”1
However, the view of the Catholic Church is that life itself is a benefit, no matter how disabled the person might be. This benefit is sufficient to require the provision of food and water, which is part of the normal care due all patients, who need them to live.2,3 To meet the criteria for withdrawal, it must be shown that there is a significant burden to the patient that is directly related to the provision of food and water by tube. In this regard, the burden of remaining alive cannot be considered a justification for withdrawal of food and water.3 These conditions for withdrawal are met when the patient's condition is imminently terminal — that is, when the patient is so close to death that withdrawal of food and water will not cause his or her death or when food and water cannot be assimilated by the patient's body.1 Neither of these conditions applies to a patient with dementia.
3 ReferencesWilliam J. Burke, M.D.
Saint Louis University, St. Louis, MO 63110-02501
National Conference of Catholic Bishops 2
Pontifical Council for Pastoral Assistance. Charter for health care workers. Boston: Pauline Press, 1995:105.
3
Committee for Pro-Life Activities, National Conference of Catholic Bishops
Medline
To the Editor:
Gillick seriously misstates the Orthodox Jewish viewpoint regarding nutrition and hydration. Halacha — the Orthodox Jewish judicial code — makes a clear distinction between medical interventions, on the one hand, and nutrition and hydration, on the other. Nutrition and hydration must be offered to all patients regardless of their statistical chance of recovering. The concept of not providing “impediments to dying” applies only to medical interventions in an actively dying patient and not to interventions in a patient who has a life expectancy of less than one year. Furthermore, only the patient can refuse treatment on the basis that the intervention will “prolong suffering.” Surrogates must provide all interventions to prolong life, according to the theory that every second of the life is infinitely precious.
Gillick asserts that patients from whom nutrition is withheld experience only “transient” hunger. This “transient” period may be as long as a few days to a week. Hydration promotes comfort by preventing delirium.1 Should we sedate and physically restrain a dying patient because we have withheld nutrition and hydration?
The prophet Jeremiah laments, in Lamentations 4:9, “More fortunate were the victims of the sword than the victims of famine, for they pine away stricken, lacking the fruits of the field.” We strongly oppose any policy that will cause people to die of starvation and dehydration.
1 ReferencesRabbi Yizhak Kupfer, M.D.
National Institute of Judaism and Medicine, Brooklyn, NY 11203Sidney Tessler, M.D.
Maimonides Medical Center, Brooklyn, NY 112191
Fainsinger RL ,Bruera E . When to treat dehydration in a terminally ill patient? Support Care Cancer 1997;5:205-211
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To the Editor:
We examined the process of informed consent before gastrostomy-tube insertion at a municipal hospital in New York City. Eighteen patients were prospectively evaluated before the scheduled insertion of a gastrostomy tube. Only one patient, who had esophageal cancer, was deemed capable of giving informed consent for the procedure. None of the other patients had either an advance directive or a designated health care proxy, despite the hospital's policy of discussing these issues with patients on admission and in the outpatient clinics. Six patients had no available relative to contact.
Most of these patients were unable to give consent because of acute cerebrovascular diseases, dementia, or other critical medical illnesses. Members of the medical staff often become the decision makers for these types of patient. All 18 patients we evaluated received a gastrostomy tube. For those without family members or advance directives, administrative consent was given if they were not competent to give consent themselves. There was no long-term follow-up of the patients.
There appears to be a lack of awareness, especially with respect to poor elderly patients, regarding the importance of advance directives. It is the patient who should ultimately decide the appropriateness of medical interventions such as gastrostomy.
David M. Friedel, M.D.
Lisa A. Ozick, M.D.
Harlem Hospital Center, New York, NY 10037Author/Editor Response
Dr. Gillick replies:
To the Editor: Friedel and Ozick rightly stress the desirability of advance directives. Unfortunately, despite the passage of the Patient Self-Determination Act in 1990, only 9.8 percent of patients near the end of life have completed a living will.1 Moreover, instructional directives rarely address the use of artificial nutrition in the event of dementia. The limited success of advance planning is another reason for establishing a standard of care for persons with advanced dementia.
I agree with Vollmann that family members' involvement in hand-feeding their relatives can be useful in promoting an understanding of advanced dementia. Direct exposure to feeding tubes and to the restraints often used in conjunction with them is similarly desirable.
Both Burke and Kupfer and Tessler contend that their religious traditions require the use of feeding tubes to the extent that they prolong life and diminish suffering. I present evidence that in the setting of advanced dementia, feeding tubes do neither. Data on hunger in dying patients who are unable to eat indicate that a minority of them experience discomfort and that the duration of symptoms is brief.2 Some clinicians believe that dehydration is associated with delirium, but the preponderance of the evidence suggests otherwise.3
The position of the National Conference of Catholic Bishops on artificial nutrition and hydration that I cite in my article refers to patients at the end of life. This statement does not refer to patients in a persistent vegetative state, for whom artificial nutrition clearly does prolong life and in whom there is no discernible suffering caused to the patient, who is unconscious.
There is no single Orthodox Jewish interpretation of Halacha. Some Orthodox scholars accept that patients expected to die within three days do not require attempts at prolongation of life; others extend this precept to patients with irreversible, inevitably fatal disorders who have a life expectancy of one year or less (such as those with advanced Alzheimer's disease).4 Some rabbinic authorities uphold a distinction between artificial nutrition and medical treatment, whereas others acknowledge that “the expected clinical benefit from [artificial] feeding must outweigh the significant risks and suffering caused to the patient, otherwise it should not be done.”5
We must accept that artificial nutrition and hydration are incapable of sustaining the life of patients with advanced dementia who have difficulty eating or swallowing. Introduction of feeding tubes, which are not only ineffective but also often burdensome, makes little sense. A better way to affirm the sanctity of human life is to feed the patient by hand to the extent that such feeding is tolerated.
5 ReferencesMuriel Gillick, M.D.
Hebrew Rehabilitation Center for Aged, Boston, MA 021311
Hanson LC ,Rodgman E . The use of living wills at the end of life: a national study. Arch Intern Med 1996;156:1018-1022
CrossRef | Web of Science | Medline2
McCann RM ,Hall WJ ,Groth-Juncker A . Comfort care for terminally ill patients: the appropriate use of nutrition and hydration. JAMA 1994;272:1263-1266
CrossRef | Web of Science | Medline3
Zerwekh JV . Do dying patients really need i.v. fluids? Am J Nurs 1997;97:26-31
CrossRef | Web of Science | Medline4
Jakobovits I. Jewish medical ethics: a comparative and historical study of the Jewish religious attitude to medicine and its practice. New York: Bloch Publishing, 1975.
5
Rosin J ,Sonnenblick M . Autonomy and paternalism in geriatric medicine: the Jewish ethical approach to issues of feeding terminally ill patients, and to cardiopulmonary resuscitation. J Med Ethics 1998;24:44-48
CrossRef | Web of Science | Medline
- Citing Articles (3)
Citing Articles
1
J. Perry. (2011) May Alzheimer's Patients Refuse Tube Feeding? Yet More Questions on the Papal Allocution--And Perhaps an Answer. Christian Bioethics 17:2, 123-139
CrossRef2
Ruth Palan Lopez, Elaine J Amella, Susan L Mitchell, Neville E Strumpf. (2010) Nurses’ perspectives on feeding decisions for nursing home residents with advanced dementia. Journal of Clinical Nursing 19:5-6, 632-638
CrossRef3
(2000) Current Awareness. International Journal of Geriatric Psychiatry 15:10, 974-981
CrossRef
