Today the Swedish National Board of Health and Welfare (NBHW), my country's highest authority on the application of health care law and associated ethical codes, delivered its ruling on a publicised case where a 31 year old woman, totally physically incapacitated since 6 years of age, appealed for the right to have the respirator keeping her alive since 25 years turned off and then to receive palliative care powerful enough to effectively ameliorate the resulting pain and anxiety.
To grant such wishes has indeed been established practice within Swedish health care since at least a decade back, not least in the case of old people who decline nutrition and liquid. The received opinion among doctors, officials and ethicist alike has been that the acceptability of this practice is a logical consequence of the principle of respect for personal autonomy in health care, combined with the approval of palliation as a legitimate medical aim by itself. However, a recent criminal prosecution against a neonatal doctor at the Karolinska Hospital, where surprisingly high amounts of the rests of powerful sedative drugs where found after an autopsy of a newborn child following a decision to terminate neonatal intensive care treatment that had been judged to be medically meaningless, has cast doubt on the legality of the established practice. Legal scholars, as well as the National Council of Medical Ethics, has pointed out that the aim of palliation after withdrawal of life-saving treatment may conflict with established criminal law regarding killing, since palliation necessarily brings a risk for hurrying death along, especially so with powerful palliation and in the case of fragile patients in a terminal stage. And Swedish criminal law statutes regarding, e.g., manslaughter do not mention imminent death by natural causes as a factor that excludes an act from falling under the legal ban. As an effect, doctors treating severely, chronically ill patients who wished to have life-support withdrawn and to receive effective palliation up to the time of death, became hesitant to grant these wishes. This is the background to why the woman appealed to NBHW; to ask it to let her doctor of the hook created by the uncertain legal situation.
The ruling is most welcome just due to the need for having the legalities straightened out, and even more so due to its content. NBHW had two alternative positions to choose from, besides the one actually taken: (1) to deny people suffering from deadly diseases or injuries the right to have their personal autonomy respected; and effectively to grant the right of the state to force adult and fully decision competent people to undergo very burdensome medical procedures for indefinite times, or (2) to grant the medical professions a right to effectively torture their patients, by affirming the rule of respecting autonomy while denying palliation as a legitimate medical aim. The NBHW instead states clearly that adult, decision competent patients have an unequivocal legal right to have ongoing medical treatment terminated (and unwanted treatment never to be initiated), even when the treatment has a life-supporting function. It moreover rules that dying patients have a right to effective palliation within the limits set by the established practice within this branch of medicine – thereby licensing the use of anesthetics besides, e.g., morphine.
Within the palliative medical practice and profession (and, evidently, within the NBHW), it is well-established that all palliative drugs, pain- and anxiety-killing as well as sedative, bring some risks of a slightly shortened life-span. Thus, the ruling implies the legal acceptance of medical procedures that bring such risks without being balanced by the reduction of other risks for a shortened life-span. The palliative effect is recognised as a sufficiently important factor by itself. However, the question still remains how far this reasoning can be taken before the above-mentioned potential conflict with criminal manslaughter statutes is actualised. For the job of the NBHW is not to apply criminal law, only administrative law governing health care and medicine and, should there be a conflict, legal principles are clear: criminal law trumps any sort of administrative ruling.
Currently established palliative drugs and dosage can presumably cover most needs arising in this area of medicine. Especially so since the use of anesthetic for palliative purposes is a part of this practice since many years. One may hope, therefore, that an actualised legal conflict will never occur. However, the theoretical room is there, and it would take just one unforeseen case to reopen the can of worms.