Why do we persist in the relentless pursuit of artificial nourishment and other treatments to maintain a permanently unconscious existence? In facing the future, if not the present world-wide reality of a huge number of persistent vegetative state (PVS) patients, will they be treated because of our ethical commitment to their humanity, or because of an ethical paralysis in the face of biotechnical progress? The PVS patient is cut off from the normal patterns of human connection and communication, with a (...) life unlike other forms of human existence. Why the struggle to justify ending a life which, it is said, has suffered an irreversible loss of the content of consciousness? Elsewhere, the authors have addressed the ethical controversies and confusion engendered by ambiguous terminology, misuse of medical facts and the differing interpretations of what constitutes 'effective' treatment: in particular, the issue of whether in fact artificial nutrition and hydration is a medical treatment, or simply part of the obligatory care owed to all patients, permanently unconscious or not. In this paper, we intend to argue that recent analyses of medical futility, its meaning and ethical implications, despite an absence of public consensus, permit some tentative re-evaluation of our ethical obligations to the PVS patient. (shrink)

Withdrawal of artificially delivered nutrition and hydration (ANH) from patients in a permanent vegetative state (PVS) requires judicial approval in England and Wales, even when families and healthcare professionals agree that withdrawal is in the patient9s best interests. Part of the rationale underpinning the original recommendation for such court approval was the reassurance of patients’ families, but there has been no research as to whether or not family members are reassured by the requirement for court proceedings or how they experience (...) the process. The research reported here draws on in-depth narrative interviews with 10 family members (from five different families) of PVS patients who have been the subject of court proceedings for ANH-withdrawal. We analyse the empirical evidence to understand how family members perceive and experience the process of applying to the courts for ANH-withdrawal and consider the ethical and practice implications of our findings. Our analysis of family experience supports arguments grounded in economic and legal analysis that court approval should no longer be required. We conclude with some suggestions for how we might develop other more efficient, just and humane mechanisms for reviewing best interests decisions about ANH-withdrawal from these patients. (shrink)

Adults without the capacity to make their own medical decisions have their rights protected under the Mental Capacity Act in the UK. The underlying principle of the court's decisions is the best interests test, and the evaluation of best interests is a welfare appraisal. Although the House of Lords in the well-known case of Bland held that the decision to withhold treatment for patients in a persistent vegetative state should not be based on their best interests, judges in recent cases (...) have still held that the best interests of persistently vegetative patients demand that the right to die with dignity prevails over society's interest to preserve life. The basis of suggesting that it is in the best interests for one who is alive in peace to die in peace is weak. Even if it may not be in their best interests to live on, it may not be so to die either. The phrase ‘the right to dignity/to die with dignity’ has been misused as a trump card to justify the speculation that a vegetative patient would necessarily refuse to live on machines. Without disrespect to the court's decision, we argue that the use of the best interests test to authorise withdrawing/withholding treatment from persistently vegetative patients without an advance directive is problematic. We propose that the court could have reached the same decision by considering only the futility of treatment without working through the controversial best interests of the patient. (shrink)