Among proposed changes to the NHS Constitution, which were put out for consultation by the Health minister, Norman Lamb, yesterday, is a new right for patients, their families and their carers to be involved in all decisions about what is known in medical circles as end-of-life care.
In some ways, it beggars belief that what is no more than basic common decency has to be defined as a right. Given the number of complaints from relatives and others about not being informed, let alone consulted, before a patient is placed on the "Liverpool Care Pathway", however, it is clearly necessary for clinicians and nursing staff to be reminded of what they would surely want to happen if roles were reversed.
There is room for some proportion here. No one is suggesting a return to the days before palliative care became the norm for those in the late stages of terminal illness. Nostalgia, especially in matters of healthcare, can be misplaced. But for close relatives to discover only from a chance remark, or – worse – when it is too late, that a patient is being treated as though he or she is not expected to recover, is clearly unacceptable. Not only that, but it may fuel suspicions that the patient is perhaps being helped on his way for reasons that are other than clinical: because, say, the hospital is short of beds, or a financial target is somehow involved.
If the situation is properly explained, relatives will probably accept clinicians' advice. Where opinions differ, the bias must favour life, and the courts remain a last resort. Keeping instructions under wraps – if this is what happened with the "do not resuscitate" instruction in the case of Janet Tracey, which we report today – should not be an option. The mystique that long surrounded the medical profession is no more. Patients and their relatives expect to be treated as adults. Many clinicians understand that; the rest need to learn.Reuse content