Resources, Down's syndrome, and cardiac surgery

Do we really want “equality of access”?

On of the “most taxing issues” addressed by last month's report of the Independent Inquiries into Paediatric Cardiac Services at the Royal Brompton Hospital and Harefield Hospital 1 2 was the allegation that children with Down's syndrome were discriminated against at the Royal Brompton Hospital. It was alleged (but not proved) that children were inappropriately “steered away” from surgery for heart defects because they had Down's syndrome. The report recommends that: “The Trust's policies confirm clearly that people with a disability are entitled to, and will be accorded … the same rights of access to services as those without a disability; and that consultants should take the lead in implementing policies and influencing attitudes regarding equality of access.” Similarly, a guiding principle in the report's model guidance to avoid discrimination is that: “Access to services, and priority for treatment, should be determined only on the basis of clinical need.” The principle of equality of access is thus equal treatment for equal need.

Equality of access is uncontroversial when there are resources to treat everyone. It would then be unfair discrimination to deny a child lifesaving surgery because she had a disability—unless one believed her disability was so severe that it was not in her interests to continue to live. Until a few years ago some doctors did believe that about Down's syndrome.3 Such a view is now roundly rejected. One of the report's major points is that prolonging treatment is in the interests of a person with Down's syndrome.

Equality of access is problematic, however, when resources are scarce. The report admits there were serious shortcomings in resources for cardiac surgery in the 1980s and early 1990s, though it is difficult to judge how relevant these were to treatment decisions. However, resource considerations are critical when …