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Chapter 6 - Should Tube-feeding be Withdrawn in PVS? - A brief review of the issues

Euthanasia Booklet

From Euthanasia Booklet - Chapter 6 - Should Tube-feeding be Withdrawn in PVS? - A brief review of the issues

Introduction

On the afternoon of Saturday April 15th 1989, 17 year old football fan Tony Bland was one of hundreds who suffered crush injuries at the Hillsborough Stadium tragedy in Sheffield. On arrival in hospital he was treated intensively with insertion of drains to his bilateral tension pneumothoraces, intubation and ventilation. He survived.

After a period in intensive care he was transferred to Airedale General Hospital, the hospital nearest his home. It was already apparent that Tony had suffered extensive damage to his cerebral cortex and in the months that followed, Persistent Vegetative State (PVS) was diagnosed (see below).

There was no improvement in his condition and eventually his consultant, Dr James Howe, and his parents made an application through Airedale NHS Trust to the High Court that they would not be acting unlawfully if they were to cease giving food and fluids to him in order to `let poor Tony die'.[1]

On November 19th 1992, Sir Stephen Brown, the President of the High Court's Family Division, ruled that food and fluids could lawfully be withdrawn. There was an Appeal but on 9th December the verdict was upheld by three Judges in the Appeal Court. The case then went to the House of Lords, and on Thursday February 4th 1993 five Law Lords also rejected the Appeal. Tony Bland became the 96th victim of the Hillsborough tragedy.

Before a brief review of the main arguments in the three key issues of the case, it is important to have a clear understanding of the medical facts involved.

What is PVS?

The term `Persistent Vegetative State' (PVS) was coined by Jennett and Plum in 1972 [2] to describe the behaviour of people who have profound cortical brain damage. Although they display a sleep-awake pattern, they respond to stimuli only reflexly and with no evidence of cognitive function.

Common causes are head injury and anoxia from, for example, accidents under anaesthesia or crush injuries, as in Tony Bland's case. The condition is thankfully rare. It is estimated that there are between 1,000-1,500 cases around the UK, but these vary widely in severity and there is no doubt that Tony Bland was an extreme example.

Because the brain-stem is intact, there is spontaneous respiration and heartbeat. Thus there is no question of artificial ventilation being needed, a point not appreciated by many lay people and even some doctors who have talked about `life-support machinery'. However, there is no known intellectual activity, no rational response, no sentience, no cognitive function. The condition has been summed-up vividly as `awake but not aware'. Or, as Sir Stephen Brown said of Tony Bland, `There is simply no possibility whatsoever that he has any appreciation of anything that takes place around him'.[3]

Critically important has been the inability of PVS patients to feed themselves. They are by definition unable to carry out the purposeful organised tasks required, and thus require help with feeding. Some patients with less severe PVS can swallow in response to food and fluids placed in the mouth, but trying to feed them this way would be immensely time-consuming and would run the risk of inhalation, leading to pneumonia. PVS patients are thus fed through tubes - either nasogastric ones or gastrostomy tubes inserted through the abdominal wall.

A Cause of Confusion

Whilst the question about withdrawal of tube-feeding was the key one taken to the Courts, it was frequently confused with a quite separate question about whether doctors had to obtain legal permission to withhold or withdraw medical treatments such as antibiotics. For example, Dr Howe himself writes [1]: `I asked the then Sheffield Coroner for his opinion on what would happen should we withdraw antibiotics for infection and stopped tube-feeding'. This confusion was repeated throughout the legal process, and in the discussion which follows its effects will be seen in two of the three key issues.

Three Key Issues

1. Is Tube-feeding a Medical Treatment?

It may be that Dr Howe wrote what he did because he was equating tube-feeding with medical treatments such as antibiotics. He may of course be right, but there is clearly a presupposition involved here. This very difficult question of whether tube-feeding is a medical treatment is at the heart of the debate.

In a Discussion Paper which includes an excellent review of medical aspects of PVS and its treatment [4] the Medical Ethics Committee of the British Medical Association simply reasserted without argument an earlier statement that:

`feeding/gastrostomy tubes for nutrition and hydration are medical treatments and are warranted only when they make possible a decent life in which the patient can reasonably be thought to have a continued interest'

Taking the line that futile medical treatments can be withdrawn, the BMA concluded that `The Committee does not see such a decision to withdraw artificial nutrition as in breach of the duty of care'[5]. The document was only a Discussion Paper and did not represent a unanimous view (`The issue of withholding life-prolonging treatments, such as artificial feeding is more complex and the MEC expressed divergent opinions upon it'[6]) but nevertheless appearing as it did two months before the High Court hearing began, it was inevitably given considerable weight. None of the subsequent judgments seriously questioned the assertion of the doctors here and it could be argued that the legal experts have bowed to (the majority of) the medical experts.

However, the Royal College of Nursing has come out clearly against the verdict. General Secretary Christine Hancock has said [7]: `The RCN view differs from the judgment of the Law Lords in that nurses believe that to stop food and drink is a different issue from the decision to stop other forms of medical intervention'. Another College spokeswoman confirmed that `the College did not support the withdrawal of food and drink'.[7]

In other words, there is a debate about whether food and fluids are part of the ordinary nursing care of all patients, or whether they are a medical treatment which can legitimately be abandoned if futile. The arguments mustered by the two sides are as follows:

Arguments that tube-feeding is a medical treatment

  1. Tube-feeding is a medical treatment because it is a medical response to pathology, namely, the patient's inability to swallow (or to swallow safely).
  2. Tube-feeding is a medical treatment because it uses artificial means, namely, an artificial tube and artificial substances.

Arguments that food and fluids are part of the basic nursing care of all patients and that tube-feeding is one aspect of this

  1. Tubes can be passed and operated by people other than doctors, namely, by nurses and other healthcare professionals, by family carers, or even in different clinical situations by patients themselves.
  2. The concept of artifice is potentially misleading. For example, where means of delivery are concerned, we don't hesitate to bottle-feed babies and we use cutlery ourselves! Although this analogy can be pushed too far, Dr Keith Andrews of the PVS Rehabilitation Unit at the Royal Hospital and Home in Putney has written: `To my mind the tube is simply a tool for daily living, similar to the specially adapted spoons that enable arthritic patients to feed themselves.'[8]
Where the substances delivered are concerned, the nutrients given are ordinary foodstuffs. A liquidised ward diet could be given, but for convenience one of the proprietary liquid foods is usually used. The liquid diet is certainly not a biochemical, elemental diet needing a pharmacological prescription - there is nothing wrong with the patient's digestive tract and the only pathology being treated is inability to swallow.

(Before moving on from this difficult debate, the advantages for such patients of gastrostomy tubes over nasogastric tubes should be mentioned. Although the implantation of the tube requires a minor surgical procedure - very obviously a medical treatment! - gastrostomy tubes:

  • are more efficient in delivering adequate nutrition, which is very much in the patient's best interests as studies have shown that most PVS patients are significantly under-nourished;
  • allow nutrition to be given overnight, thus freeing carer time during the day for active therapy;
  • do not occupy a large part of the immediate visual field of the patient, though of course we do not know what a PVS patient `sees';
  • are not normally visible and thus make the appearance of the patient more acceptable to carers and visitors, helping towards a positive approach to care;
  • work well for a long time once in situ and are seen not as invasively medical but as part of the ordinary nursing care process.)

Even if as doctors we decide that tube-feeding clearly is a medical treatment (which, arguably, we are not necessarily under any obligation to use if it is futile or no longer appropriate - see below) we still as Christian doctors need to look carefully at another two key issues.

2. Was Tony Bland in Some Sense `Dead Already'?

In the first Court ruling, Sir Stephen Brown said: `To his parents and family he is "dead". His spirit has left him and all that remains is the shell of his body.'[9]

Christian clinicians may well have much instinctive sympathy with this. It feels right and it reminds us of cases we've met. I well remember consoling a woman whose husband had just died after eight years of progressive Alzheimer's dementia, only for her to say `Oh, it's alright doctor, for me he died years ago'. I felt for her. I knew what she meant - but at the same time the objective part of my mind recalled that he had in fact carried on eating and sleeping and walking and talking for years after he ceased recognising his wife. He had been very much alive, and of course the Tony Bland situation went to Court precisely because he was not dead or dying but very much alive, in the traditional understanding of that word.

As a society we do not yet realise how much some of the principles implicit in the Tony Bland verdict have changed and will change our understandings of life and death. The Law has always left the definition of death to the medical profession - one is not dead until the doctor pronounces this, and later confirms it with a death certificate!

The medically accepted (and therefore legally accepted) definitions of death are:

a. Cessation of cardio-pulmonary function (the heart has stopped beating and the lungs do not work).

b. Brain-stem death. Here, the vital part of the brain needed to maintain heartbeat and respiration is dead, and without extensive mechanical support these will not take place. It is now rightly accepted in our society that such people are dead and do not have to be kept on `life-support machinery'.

Tony Bland had death of the cerebral cortex, but this lies well outside these two categories.

Philosophically and ethically the debate will continue as to what constitutes life. Christians, who believe human beings are created `in the image of God'[10], will not hurry down the line of those who argue that the capacity for rational relationship is an essential pre-requisite of being a living human being. Members will appreciate that within this Fellowship there are different views on this subject, but all Members will realise the potential of going down a slippery slope after abandoning traditional understandings of life and death.

Theologically, Sir Stephen Brown is arguably not qualified to decide when spirits leave bodies! Anyway, it is generally accepted now that we believe in `ensouled bodies' and `embodied souls'.

So, as stated in correspondence in the British Medical Journal

`If the concept of Tony Bland being dead already is accepted in law we will have moved the goalposts medically, legally, ethically, philosophically, and theologically.'[11]

Whilst the Law Lords [12] have carefully and rightly avoided this difficult ground, statements in lower Courts have undoubtedly helped to move public opinion further in this area. The suggestion that people who lack the capacity for rational relationships are somehow `dead already' obviously has implications for much larger groups of patients, such as those with dementia. We must keep watch here.

`Quality of life' and `Best interests'
In association with this idea that Tony Bland was in some sense `dead already' were expressed many views about `quality of life'. Space prevents a further discussion of this important concept. Quality matters -- to the patient and to God, but quality judgments are inevitably arbitrary and therefore inherently have the potential for injustice. As the language of `quality' comes more and more to dominate thinking in the NHS, we must beware losing sight of God's absolutes.

Similarly, there is no space to do other than mention the widespread use in the discussions about Tony Bland of the language of `best interests'. Again, the inevitable arbitrariness and potential injustice will be obvious. Given that Tony Bland was completely unaware of anything, the `best interests' of others were obviously part of the equation.

3. What Was the Intention Behind the Withdrawal of Food and Fluids?

A further unfortunate consequence of the series of verdicts was that the traditional legal and ethical concept of `intention' was confused. Hitherto, intentional acts of omission were viewed as seriously as intentional acts of commission. The key question was: What did the doctor intend to do when he did something? or, What did the doctor intend when he omitted to do something?

This is particularly relevant to the discussion of euthanasia. A definition which has become widely accepted on both sides of that debate is:

`Euthanasia is the intentional killing by act or omission of a person whose life is felt not to be worth living'[13]

This definition merely encapsulated traditional legal, ethical and theological understandings of the importance of intention. Perhaps because of the strongly emotional nature of the case, the medical and legal professions failed to realise the error in Dr Howe's plea: `Let poor Tony die'[1]. The whole case came to Court precisely because Tony was not dying, but with basic nursing care was very much alive. Dr Howe's plea should perhaps have read: `Let us kill poor Tony'.

The main argument put up against Airedale NHS Trust by the Official Solicitor was that to stop giving food and fluids to Tony Bland amounted to intentional killing by omission, ie murder. Having studied the judgments at length I have personally had to conclude that justice was not done to this argument.

Obviously, the first question considered, whether tube-feeding is a medical treatment or not, was interwoven in this discussion. The 48-page Law Lords' Judgment makes difficult reading, not least because key issues were confused. At the very least, the understanding that was starting to be accepted by both sides of the euthanasia debate that intention is critical has not been clarified, rather the reverse.

A Personal Comment on Medical Treatments and Intention

Those who have followed me thus far may however be asking: What is the difference between not giving food and not giving antibiotics if Tony Bland got a chest infection? Surely the intention is the same? Why do you say it might be acceptable not to give antibiotics?

I believe that medical treatments do not necessarily have to be given in all situations to all patients just because the treatments exist. This is not, never has been, and never should be, an essential part of medical practice. I abhor meddlesome medicine. I believe there is `a time to die'[14] and that decisions at the end of life need to be taken in discussion together by the patient (if possible), their family and carers, and by the nurses, doctors and other healthcare professionals involved. In this context, it will sometimes be right not to make high-powered curative attempts. The intentions here are to maximise the quality of life remaining to the patient, to respect their wishes, perhaps to recognise (legitimately) resource constraints, and to avoid producing more nightmare scenarios to fuel the drive for euthanasia.

However, the only intention I can see of failing to feed a living patient who is not in the acute process of dying (and such by definition was Tony Bland who had been in the same state for nearly four years) is to kill. If Tony Bland were to have developed a chest infection under my care and I had not given him antibiotics and he had died, he would have died of bronchopneumonia and PVS. If I had failed to give him food and fluids, and he had died, he would have died of dehydration/starvation and PVS. I see a world of difference here.

A Personal Conclusion

The Tony Bland case was an extremely difficult one. I reached my own view that food and fluid should be continued but that antibiotics need not necessarily be given only after much agonising, much heart-searching, much reading, much discussion with lots of different people in lots of different disciplines, and much prayer. I found it was impossible to consider Tony Bland alone without seeing the precedents the case would set:

a. That if tube-feeding were considered a medical treatment, the change in concept of what feeding means might in time come to affect many other patients in much larger categories;

b. That we might change our view of the requirements for human life to be considered present, to the detriment of much larger groups of patients;

c. That intentional killing by omission might seem to be acceptable and so lead in time to widespread euthanasia.

References

  1. Howe J. `Stop this stupidity - let poor Tony die.' BMA News Review January 1993; p19-20
  2. Jennett B, Plum F. `Persistent vegetative state after brain damage. A syndrome in search of a name.' Lancet 1972; i: 734-7
  3. Brown Sir S. Judgment in the High Court. November 19 1992 p2
  4. Discussion Paper on Treatment of Patients in Persistent Vegetative State. Medical Ethics Committee of the BMA. September 1992 p16
  5. Ibid. p21
  6. Ibid. p25
  7. Nursing Times February 10 1993. 89; 6: 7
  8. Andrews K. `Letting vegetative patients die.' BMJ 1992 305: 1506 (12 December)
  9. Brown Sir S. Idem. p19
  10. Gen 1: 27
  11. Fergusson A. `Letting vegetative patients die.' BMJ 1992 305: 1506 (12 December)
  12. House of Lords Judgment. Airedale NHS Trust v Bland. 4 February 1993
  13. Fergusson A. `Euthanasia.' JCMF 1992 38.1; 149: 2
  14. Eccles 3: 2

Article written by Andrew Fergusson

More from Euthanasia Booklet: Euthanasia Booklet

  • Chapter 1 - Introduction
  • Chapter 2 - Thou Shalt Not Kill - The Christian case against compassionate killing
  • Chapter 3 - Suicide Down the Ages - A Judeo-Christian Perspective
  • Chapter 4 - Should Doctors Support the Living Will?
  • Chapter 5 - A Doctor's Dilemma
  • Chapter 6 - Should Tube-feeding be Withdrawn in PVS? - A brief review of the issues
  • Chapter 7 - Submission from CMF to the Select Committee of the House of Lords on Medical Ethics
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