Long-term tube feeding is adopted when oral intake is inadequate, unsafe, or no longer possible. Under such circumstances, it can often be expected to be a permanent form of sustenance. Long-term tube feeding is commonly implemented in old persons who are experiencing a severe and life threatening illness. While tube feeding for these elderly individuals can usually maintain life (4 years on average), it can also prolong the discomfort associated with an underlying disease process. Tube feeding can even introduce new forms of suffering such as those resulting from the pharmacologic or physical restraints used to prevent extubation (dislodging of the feeding tube). Although long-term tube feeding is a "low tech" and seemingly benign form of life support, prolongation of life by this means is only ethically acceptable when it is what a person wishes or, if incompetent, can be shown to serve that individual's best interests. It is uncertainty over this last aspect which creates an important dilemma. There is no doubt that tube feeding can benefit individuals who have the potential to live cognitive and/or independent lives, but when used as life support for incompetent persons the decisions tend not to be so straight-forward. A number of professional, ethical and legal guides have been developed to help address difficult tube feeding decisions. A review of these guides will follow noting, in particular, the recent emphasis on self-determination and proxy decision-making.
In Canada, the 1984 Joint Statement on Terminal Illness appears to be the most specific professional guide for life support decisions. Other professional guides, such as the 1991 Catholic Health Care Ethics Guide, the 1987 AARN Guidelines for Bioethical Decision-Making in Nursing, and the 1991 CNA Code of Ethics for Nursing, also have potential for guiding life support decisions. The Joint Statement endorsed DNR ("do not resuscitate") orders written by physicians when resuscitation "would not appear to be beneficial, in that it would prolong the dying process rather than extend life" (p. 24). No direct mention of tube feeding is made in this document, but decisions about withholding or withdrawing tube feeding (since tube feeding is a form of resuscitation) could be based on this document. The Joint Statement also indicated that "it is the patient's right to accept or refuse treatment" (p. 24). This awareness of patients' right to be involved preceded the more recent emphasis on self-determination. Self-determination is arguably the most dominant ethical principle in Western society today. Self-determination is synonymous with the principle of autonomy, one of the four main ethical principles identified by Beauchamp and Childress. Self- determination is simply individuals making their own decisions. In the past healthcare professionals have acted on patients' right to be informed by spending a great deal of time and effort ensuring that patients agreed to recommended treatment options before proceeding. The current patient as consumer approach emphasises educating patients to enable them to make treatment choices which reflect their own beliefs and values. This view requires presenting more information in ways quite different from past attempts to simply promote willing partners.
Obviously, there are limitations to self-determination. Five limitations readily come to mind. First, self-determination must not lead to harm to others as might be inferred from Sue Rodrigues' efforts to change the law regarding assisted suicide, for example. Second, some competent patients waive their right to self-determination and choose instead to have someone else make their choices for them. Third, healthcare professionals are not obligated to provide futile treatments. Fourth, incompetent persons who have never been competent, cannot self-determine anything. Finally, incompetent persons who were once competent, but who never indicated their preferences about tube feeding while they were competent, cannot guide future decisions about tube feeding. Decisions for the never-competent and for the no-longer-competent will involve substitute decision-makers.
Canadian case law has made clear that previously verbalized or written preferences by competent patients are indeed enduring advance directives. The 1990 case of Malette v Shulman, in which a Jehovah Witness was given blood while unconscious, is a good example. The woman was transfused despite bearing a card indicating her preference not to be given blood. Her right to self-determination, and therefore her right (potentially) to die, was upheld in an Ontario court.
Alberta and other provinces may have advance directives legislation this year. While hospitals and long-term care facilities across Canada would be wise to ask for copies of living wills on admission there is, as yet, no legal obligation to do so. In the USA, the federal Self Determination Act of 1990 requires all hospitals receiving federal funding to ask each patient on admission whether they have a written advance directive. This Act follows the development of living will legislation in almost every US state, beginning in 1977. Some American living will legislation resulted, in part, from high profile "right to withdraw" treatment cases, many of which involve tube feeding. A well known example is the 1990 Supreme Court decision which allowed for the removal of Nancy Cruzan's feeding tube, though the first such case was that of Paul Brophy.
Tube feeding must become recognized as a common form of life support by a wide cross section of the Canadian public before there will be increased discussions and wider use of advance directives which specify preferences about tube feeding. In a recent research case study, a daughter related that she knew her mother's values and so could make substitute decisions about withholding CPR, but that she did not know whether or not her mother would want tube feeding. She and her mother had never talked specifically about life support measures, despite having known for 15 years that the mother had a severely debilitating condition that eventually would cause her death. The daughter had tube feeding implemented, but later expressed regret that she was not able to base this decision on a specifically expressed preference by her mother. If exact preferences are not written down in a "living will" or advance directive, or stated clearly, it may be difficult to infer from the patients' values, lifestyle, or other indicated preferences whether or not they would want tube feeding. In summary, self-determination holds promise for facilitating difficult life support decisions when the patient is no longer competent, but it does not hold all of the answers. Furthermore, patients must be well informed about treatment options and possible outcomes before they are asked to make treatment choices. The responsibility for their education largely rests with healthcare professionals.
Research may begin to play a large role in informing choices about value-laden issues such as initiation or withdrawal of tube feeding. An exhaustive literature search revealed many articles on the practices of tube feeding. These studies addressed the technology of tube feeding, and may have partially been responsible for the proliferation of long-term tube feeding. An equally large number of research publications were found to describe the many complications of tube feeding. The ethical dilemmas tube feeding may present for healthcare professionals have also been discussed in a few studies. Finally, a review of research on the benefits and burdens indicated little support for long-term tube feeding, (or even the use of parenteral fluids as a comfort measure near death.) This has led to many instances of withholding or withdrawing of tube feeding being viewed as ethically appropriate.
While tube feeding may be highly beneficial to competent persons who are avid for life, the potential for long-term tube feeding to cause harm unnecessarily in incompetent persons by extending the process of dying is not well addressed in the professional literature. The impending advance directive legislation in Alberta will soon make it imperative that we openly discuss preferences for this form of life support with competent patients or their substitute decision-makers well in advance of the need for these decisions. Most healthcare professionals welcome the increased involvement of patients in decisions about their care, particularly in difficult situations involving life supporting technology. Informed patient self-determination, however, requires healthcare professionals to be advocates, teachers, and guides. Furthermore, research is needed to finally lay ethical controversies to rest.