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http://www.catholicdoctors.org.uk/CMQ/Indiv_Articles/Tube_Feeding.htm"TUBE FEEDING: Medical Treatment or Basic Care?
ADRIAN TRELOAR & PHILIP HOWARD
ABSTRACTTube feeding is now legally regarded as medical treatment. The provision of nutrition through nasogastric or gastrostomy feeding tubes is not part of basic care according to several recent court decisions. Despite this, doctors have misgivings about the removal of feeding tubes and feel that cessation of tube feeding can be a direct cause of death. We argue that feeding tube placement is a medical procedure and as such requires consideration of the benefits and risks as for any other medical treatment. However, the day-to-day use of feeding tubes, to provide hydration and nutrition, constitutes ordinary care that does not require medical supervision. Withdrawal of tube feeding raises major ethical and legal questions, as it removes a simple channel for the provision of nutrition. With rare exceptions, cessation of tube feeding is done with the intention of causing death through dehydration or starvation.
We conclude that the placement of feeding tubes constitutes medical treatment from an ethical standpoint. However following tube placement, a different moral situation pertains: the provision of feeding through such means constitutes ordinary care. This analysis of the moral and legal distinction between tube placement and usage challenges the validity of some court judgements.
...INTRODUCTIONThere has been considerable debate about the ethical nature of tube feedings: landmark judgements in both Britain and the United States (Bland, Conroy and Cruzan) have concluded that tube feeding is medical treatment. 1,2,3 Since the Bland case, several patients have had their feeding tubes removed after judicial review. Recently the court has agreed that a feeding tube should not be replaced after it had fallen out in a patient who was not in the persistent vegetative state.4 Nevertheless, Craig5 has argued that death through dehydration can be onerous for both the patient and relatives and that there is a need to satisfy thirst.
Despite these legal judgements, there is persistent concern amongst doctors about the withdrawal of nutrition as a means of deliberately ending life.6,7 The Law Commission8 stipulated that 'basic care' could not be refused to mentally incompetent patients. However, 'basic care' was defined as the preservation of bodily cleanliness, alleviation of severe pain and provision of direct oral hydration and nutrition. We doubt that such limited standards of basic care would be acceptable in Nursing Homes or Hospitals. Some ethicists hold that the provision of tube feeding is basic care.9,10 A review of the Jewish ethical position11 shows a consensus that tube feeding, once instituted, may not be withdrawn. Ethical analyses do not however appear to distinguish the insertion and removal of feeding tubes as distinct from their daily use to administer nutrition.
We provide two brief case histories that illustrate some of the difficulties in providing tube feeding before considering the ethical implications in more depth.CASE STUDIES
Case 1. A thirteen year old boy with severe cerebral palsy due to an inborn error of amino-acid metabolism was poorly nourished. Assisted feeding by his parents took several hours per day with the ever present risk of aspiration. Percutaneous gastrostomy (PEG) tube placement was discussed with the parents. In particular, the risks of sedation for such a severely disabled person, who was also underweight and had a severe kyphosis, were carefully explained. It was felt that there was a small though definite risk of death from the procedure, estimated at between 1 % and 5 %.
The procedure was uncomplicated. Nutrient can now be administered either via a pump or by bolus injection with a syringe. Tube feeding has proved easy, and the patient is now able to go out for the day. His nutritional status has improved substantially. The mother describes the tube feeding as "bliss" and sees no difference between the administration of nutrition through the tube and any other aspect of his basic care. Over the 18 months since tube insertion, his respiratory difficulties and muscular spasms have worsened. As a result it would now be even harder to feed him without a PEG tube. Removal of the tube or cessation of feeding would lead to death from dehydration or starvation. If the tube were to fall out, the mother would be able to insert it within the first few hours (before the stoma starts to close). If the tube became dislodged or blocked and required replacement, the same principles that pertained to the original decision to insert the tube would apply, though the risks would then be greater.Case 2. A twenty year old woman with cerebral palsy, severe kyphoscoliosis and asthma was considered for PEG feeding because of chronic under- nutrition and repeated chest infections related to aspiration. A general anaesthetic was deemed neccessay for tube placement because of her marked skeletal deformity and to control her airway during the procedure. It was also felt that the patient would not tolerate the procedure under sedation. There was an estimated.30% - 40% risk of dying from the anaesthetic. The parents considered the risks were unacceptably high, and the Consultant anaesthetist was not prepared to offer elective post-procedural ventilation if the patient could not be weaned from the anaesthetic. It was therefore agreed by all not to proceed with tube insertion.
At the time of writing, the patient continues to struggle with oral feeding, remains underweight and is at risk from further aspiration pneumonia.ETHICAL ANALYSISThe decision to insert a PEG feeding tube should follow a clear discussion with the patient and/or carers. The procedure itself carries risks that ought to be balanced against the benefits that may accrue for the well-being of the patient. Good medical practice requires the consent of the patient, or a near relative or carer in the case of mental incapacity. Whilst the consent of a relative of a mentally incapacitated adult is not recognised in law12, it is regarded as sound medical practice to seek the views of relatives and/or carers in such instances. (It seems likely that the procedure would be covered by the common law plea of necessity in the event of a legal dispute).
Hydration and nutrition are essential to all human existence. Therefore, access to food and water is a basic human right. Doctors, relatives and carers have a corresponding duty to provide patients with such sustenance. This basic form of care is not considered ethically obligatory where:
(a) the patient is actually dying, when the provision of tube feeding might be considered unduly intrusive and unnecessary. (Death from dehydration may take a few weeks, which is immaterial to the patient facing imminent death).
(b) where the means of providing adequate nutrition might be unduly hazardous, as in the second case report. Nevertheless, neither of these exceptions removes the duty to care for the dying or severely handicapped and to relieve mental and physical distress.
Once the feeding tube is in place and the provision of nutrition has been thereby facilitated, a new ethical situation applies. There now exists a simple means of providing life-sustaining nutrition without due risk or burden to the patient. There is usually no reason to withdraw feeding other than to cause the death of the patient. Consent to feeding via the tube is implicit in the initial agreement to tube placement. Where the tube is deliberately removed or feeding stopped in the knowledge that the patient is unable to swallow, the action amounts to causing death through starvation and could constitute criminal negligence.CONCLUSIONWe agree with the Jewish position that, once initiated, tube feeding is ethically difficult to stop. Cessation of feeding would normally constitute a deliberate intention to end life, unless the patient is already in the process of dying and further provision of hydration and nutrition is materially irrelevant to the outcome. Patients with feeding tubes in situ have a right to basic nutrition and hydration: given their ease of use, we propose that tube feeding constitutes basic care. This conflicts with legal judgements about the use of feeding tubes. It appears that the Bland judgement and other similar cases have confused the nature of tube feeding. The Bland judgement is based upon the assumption that the use of the tube, once placed, constitutes medical treatment and that its use is no different from either tube insertion or removal. Patients have died as a result of deliberate removal of this basic form of care. We hold that removing the feeding tube is the proximate cause of death from dehydration or starvation. If insertion of the tube is regarded as medical treatment and tube feeding as ordinary care, the ethical issues surrounding tube withdrawal and the cessation of feeding become clearer.References
Airedale NHS Trust v Bland <1993> AC 789
Cruzan v Director, Missouri Dept of Health, 110 Sct 2841 (1990)
Strasser W: The Conroy Case: An overview. In Lynn J (ed): By No Extraordinary Means: The Choice to Forgo Life-Sustaining Food and Water. Bloomington, IN, Indiana University Press, 1989, p 245.
Doctors ask to cut life support. Re: Miss D. The Guardian newspaper 21st March 1997.
Craig G M. On withholding nutrition in the terminally ill: has palliative medicine gone too far? Journal of Medical Ethics 1994; 20:139- 43.
Soloman M Z, O'Donnell L, Jennings B, et al. Decisions near the end of life: Professional views on life sustaining treatments. American Journal of Public Health 1993; 14: 83.
Personal communication
Mental Incapacity. Law Commission No 231. para 5.34. Pub HMSO 1998.
Mellander G. On removing food and water; Against the Stream. Hastings Centre Report 14:11,1984.
Callahan D. On feeding the dying. Hastings Centre Report 13: 22, 1983.
Schostak R Z. Jewish ethical guidelines for resuscitation, artificial nutrition and hydration of the dying elderly. Journal of Medical Ethics 1994; 20: 93-100.
Mental Incapacity. Law Commission No 231. para 2.18. Pub HMSO 1995."AND "...There is no doubt that ceasing the tube feeding will allow BWV to end her state of forced feeding, that creates a life of indignity, of futility and with no quality at all. But will she die with dignity? Without fluid and nutrition, she will dehydrate and to a lesser extent starve until she dies, a process that Justice Morris acknowledged will take from one to three weeks. While her treatment may have been described as burdensome, her dying will be even more so. It is unconscionable to think that BWV would be allowed to suffer in this process, and although she is in a vegetative state, she is conscious; in my view, and certainly in her husband's view, she can experience pain. Hopefully, when the tube feeding is ceased, she will be granted "maximum relief from pain and suffering" as the preamble to the Medical Treatment Act requires. This effectively means that she should be put to sleep with adequate sedation, and kept asleep until she dies. There is no other way to ensure that she does not suffer during this macabre process of dying by imposed dehydration.
It is right to withdraw the tube feeding, Justice Morris indicating that the balance between her autonomy, or right of self determination, and the inviolability of her life (sanctity of life) was in favor of the former, and that her best interests were served by withdrawal. But is it in her best interests to then die by dehydration, even with sedation? Anyone who has witnessed such a process will know the anguish and distress that it causes to the family and carers, others can only imagine it. The RSPCA would be forthright in their condemnation of an animal owner who allowed such a process.
The medical profession has for decades removed artificial ventilators from patients in whom further treatment was futile, always with the agreement of the family. In the majority of instances, the decision to withdraw did not have a legal basis as the family was neither a legally appointed agent or guardian. Yet it has been accepted as 'legal' and never challenged. Justice Morris referred to the comparison between this situation and that of tube feeding, and made it clear that there was essentially no distinction as both were medical treatments that could be withdrawn. There is no doubt that there have been doctors and families who have withdrawn, or not placed, tubes in the past, without recourse to the courts. They have backed their judgment that it was the correct thing to do.
Why has there been this major difference between withdrawing ventilation and withdrawing hydration - both are life support systems? The difference lies in the emotional distinction between the usually quick death from removal of ventilation (a few minutes to a few hours) and the slow, macabre and grossly undignified death from dehydration, even with sedation, and the emotional symbolism of food and water. The Age editorial is right - this is not the same as euthanasia, and that is essentially because the process is totally lacking in dignity. It is simplistic to think of this as an issue simply of withdrawing of treatment, because the treatment is 'burdensome'. It is actually the life that is sustained by the treatment that is burdensome, is futile and without quality. It is the continuing life in this condition that is being rejected. BWV's death will ultimately be as a result of an action, taken at the request of her fully informed, rational family, with the intention of relieving her intolerable suffering, that will hasten her death - but it will not be dignified, and it is for this reason that it will not be an act of euthanasia...."http://www.vesv.org.au/docs/symeimplic0603.htmIt is absurd in the extreme to assert that this death will be anything less than grotesque and macabre. If this is not evil, then evil has NO meaning. :grr:
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