Intended for healthcare professionals

Letters

Guidelines dismay disabled people unable to speak for themselves

BMJ 1999; 319 doi: https://doi.org/10.1136/bmj.319.7211.705 (Published 11 September 1999) Cite this as: BMJ 1999;319:705
  1. Alison Davis, patient
  1. 35 Stileham Bank, Milborne St Andrew, Blandford Forum, Dorset DT11 0LE

    EDITOR—I am not just concerned about certain sections of the new BMA guidelines on withdrawing and withholding medical treatment1 —I am afraid.

    I have severe spina bifida and am a full time wheelchair user. I was appalled at the Law Lords' judgment in 1993 which allowed Tony Bland to have his food and fluids removed. Now I see that the new BMA guidelines would allow yet more disabled people unable to speak in their own defence to have nutrition and hydration withdrawn.1 There would no longer be even the minimal safeguard of a requirement that such cases be heard in court.

    Despite the attempt of the chairman of the BMA's ethic committee to placate us by drawing a caricature of those who “believe passionately that life must be preserved at all costs,” disabled people are quite smart enough to realise that providing food and fluids to patients who are not terminally ill is far from being heroic medical treatment. We know that withdrawing them is deliberate killing by neglect of patients who some doctors feel have lives not worth living.

    A letter to the Lancet in 1991 noted that even then 30% of Dutch cancer patients were refusing to take prescription morphine or were taking lower doses than they had been prescribed, because they were afraid their doctors were trying to kill them.2 For people like me, who are taking strong painkillers, I foresee a similar state of fear if these guidelines are accepted. Who can we turn to, to feel safe, if we cannot trust doctors to act in our best interests both when we can communicate our wish to live and, more crucially, when we cannot?

    People with disabilities like mine which are detectable prenatally know that BMA members willingly kill us before birth on the grounds solely of our having a “severe disability.” We are also aware that some doctors already withdraw food and fluids from newborn babies with the same disabilities—a practice euphemistically called “allowing” them to die. We know that profoundly disabled people in the persistent vegetative state are dispatched by the same method, and now we read that other non-terminally ill disabled people are to be subjected to being pushed into death by their doctors. The trust that disabled people once had in doctors can only be restored when BMA members stop deliberately killing us. I urge your members to reject these guidelines.

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