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Implications of actions intended to end the lives of people who are not “dying”
All three of the case histories in on these pages (listed towards the foot of this page) show clearly the reality of medical practice in the UK with regard to the most vulnerable of people. The doctors "caring for" Jack Smeaton, David Glass and Marian Sallery intended that their lives should be ended because they were judged "not worth living", and it was only because of opposition from their families that none of them died in this manner.
The British Medical Association's guidelines on "Withholding or Withdrawing Life-prolonging Medical Treatment (1999)[1] made several telling comments about the sorts of decisions proposed for Jack, David and Marian. For instance the guidelines state "The BMA ... does not hold to the view that there is an absolute value in being alive..."[2] Clearly the BMA feels that some lives, those of the most vulnerable of people, have not only no value, but a negative value.
Regarding withholding or withdrawing of assisted food and fluids (which the BMA dubs "artificial") the guidelines state "with some conditions such as advanced dementia or very severe stroke, a practice has developed where, in some cases, a decision is made that life-prolonging treatment, including artificial nutrition and hydration, would not be a benefit to the patient and should not be provided or continued. The BMA does not believe that these cases should routinely be subject to Court review..."[3] In other words, doctors should be allowed to decide to starve a profoundly disabled patient to death without even the minimal safeguard of a Court review.
The guidelines make it clear that decisions to withhold or withdraw "treatment" including assisted food and fluids ultimately rest with the doctor, while the relatives and carers "may need varying degrees of support to come to terms with the decision."[4] It is very worrying to read that families of people who are to be starved to death will be given "counselling" to persuade them to accept that death is in the best interests of their loved one while the doctor is free to take action to cause the death.
The guidelines state that a valid advance refusal of "life-prolonging treatment" must be respected,[5] but "the fact that a patient has requested a particular treatment does not mean that it must always be provided."[6] Thus, as in the case of Jack Smeaton, if a person refuses treatment, the decision will be "respected" but a decision or action indicating that the patient does want treatment can be ignored.
In developing countries, it is the usual practice that families of hospital patients must accompany them to the hospital and provide food and nursing care. It would seem that, for people with profound disabilities, the situation is rapidly becoming the same in the UK. Unless families are prepared to fight for the life of their loved one, and to try to ensure that the vulnerable person is fed and given appropriate basic care, it is simply not provided.
Doctors' diagnoses are far from infallible. A study by Dr. Keith Andrews of the Royal Hospital for Neurodisability in 1996 found that nearly half of 40 patients supposedly in PVS were completely misdiagnosed.[7] Similarly a study of 12 people referred with a diagnosis of "PVS" to a specialist hospital in Northern Ireland during 1995-1997 showed that four were considered to have been misdiagnosed, two of whom had been regarded as being in "PVS" for more than a year.[8] Of course, a diagnosis of death being inevitable becomes a self-fulfilling prophesy once food and water are withheld or withdrawn.
A failure of doctors and nurses to recognise or acknowledge the humanity of their patients is sadly common, and this is particularly true when the patient in question has a profound disability. Talking about a patient in his or her presence is not acceptable outside veterinary medicine, but, as the case of Jack Smeaton shows, nevertheless does occur. It is part of the wider problem of the humanity of vulnerable patients either not being acknowledged or being overlooked.
These case histories show the implications of judging that particular human lives have no value, or a negative value. Once such a judgment is made steps are taken to end the "valueless" life and the person judged to have no value is treated in a completely different way than would be expected for any other patient.
The only way to reverse such a negative philosophy towards the most vulnerable people is to re-establish a sense of the equal dignity, humanity and infinite value of all individuals. Until or unless this is achieved, vulnerable people will continue to regarded as "better off dead," steps will continue to be taken to ensure their premature deaths, and increasing numbers of people are likely to be categorised as having no value.
The solution lies in the hands of those who recognise the true value of every human being. No opportunity must be lost to speak out in defence of every human life, particularly those who are most vulnerable, and to promote laws which will provide every human being with appropriate protection from the harm of being pushed into a premature death because of a negative estimation of their human worth.
Alison Davis August 2003The documents listed below are in portable document format. You can find out more about this format here.
[1] Withholding or Withdrawing Life-prolonging Medical Treatment: Guidance for decision making. British Medical Association. BMJ books 1999.
[2] BMA guidelines.1.1. Ibid
[3] BMA guidelines 3.4 Ibid
[4] BMA guidelines 18.3 Ibid
[5] BMA guidelines 10.2 Ibid
[6] BMA guidelines 11.1 Ibid.
[7] K. Andrews et al Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit. BMJ 1996; 313: 13-16
[8] F.C. Wilson, J. Harpur, T. Watson & J.L. Morrow Vegetative state and minimally responsive patients - regional survey, long-term outcomes and service recommendations. Nuerorehabilitation 2002; 17: 231-236. In both the Andrews and the Wilson surveys the possibility of a correct original diagnosis followed by partial recovery existed, but was deemed unlikely.
