Disorders of Consciousness and the Disability Critique

Some members of disability communities and activist organizations have strenuously objected to the withdrawal of life-sustaining treatment from persons in the vegetative state/unresponsive wakefulness syndrome, notably in the case of Terri Schiavo. A history of medical neglect and ableism prompts reasonable fears that the rights of disabled persons are threatened by the withdrawal of treatment from patients who lack the ability to decide for themselves. This chapter considers the disability critique of the right to die. Implicit and explicit bias against disabled persons, and the withdrawal of treatment as a means to prevent disability are examined, alongside concerns about epistemic injustice and questions about who has the epistemic authority to speak for those with disorders of consciousness. What we owe to profoundly impaired persons, including those with disorders of consciousness, is what we owe to others: care, careful consideration of their preferences and interests, and respect for their personhood.

Heartbeats, Burdens, and Biofixtures

This paper addresses a dichotomy in the attitudes of some clinicians and bioethicists regarding whether there is a moral difference between deactivating a cardiac pacemaker in a highly dependent patient at the end of life, as opposed to standard cases of withdrawal of treatment. Although many clinicians hold that there is a difference, some bioethicists maintain that the two sorts of cases are morally equivalent. The author explores one potential morally significant point of difference between pacemakers and certain other life-sustaining treatments: specifically, that the former are biofixtures, which become part of the patient in a way that the latter do not. The concept of the pacemaker as biofixture grants pacemakers a unique moral status that gives reason to treat a pacemaker the same as other parts of the patient that are necessary to sustain life. The author employs this biofixture analysis to affirm the intuition that deactivating a pacemaker in a highly dependent patient at the end of life is, in moral terms, more analogous to active euthanasia than it is to standard cases of withdrawal of treatment. The paper concludes with consideration of potential implications for further implantable medical technologies, such as ventricular assist devices and total artificial hearts.

Withdrawal of Treatment in a Pediatric Intensive Care Unit at a Children’s Hospital in China: A 10-year Retrospective Study

Background: Published data and practice recommendations on end-of-life care generally reflect Western practice frameworks; there are limited data on withdrawal of treatment for children in China. Methods: Withdrawal of treatment for children in the pediatric intensive care unit (PICU) of a regional children’s hospital in eastern China from 2006 to 2017 was studied retrospectively. Withdrawal of treatment was categorized as medical withdrawal or premature withdrawal. The guardian’s self-reported reasons for abandoning the child’s treatment were recorded from 2011. Results: The incidence of withdrawal of treatment for children in the PICU decreased significantly; for premature withdrawal the 3-year average of 15.1% in 2006–2008 decreased to 1.9% in 2015–2017 (87.4% reduction). The overall incidence of withdrawal of care reduced over the time period, and withdrawal of therapy by guardians was the main contributor to the overall reduction. The median age of children for whom treatment was withdrawn increased from 14.5 months (interquartile range: 4.0–72.0) in 2006 to 40.5 months (interquartile range: 8.0–99.0) in 2017. Among the reasons given by guardians of children whose treatment was withdrawn in 2011–2017, “illness is too severe” ranked first, accounting for 66.3%, followed by “condition has been improved” (20.9%). Only a few guardians ascribed treatment withdrawal to economic reasons. Conclusions: The frequency of withdrawal of medical therapy has changed over time in this children’s hospital PICU, and parental decision-making has been a large part of the change.

Is withdrawing treatment really more problematic than withholding treatment?

There is a concern that as a result of COVID-19 there will be a shortage of ventilators for patients requiring respiratory support. This concern has resulted in significant debate about whether it is appropriate to withdraw ventilation from one patient in order to provide it to another patient who may benefit more. The current advice available to doctors appears to be inconsistent, with some suggesting withdrawal of treatment is more serious than withholding, while others suggest that this distinction should not be made. We argue that there is no ethically relevant difference between withdrawing and withholding treatment and that suggesting otherwise may have problematic consequences. If doctors are discouraged from withdrawing treatment, concern about a future shortage may make them reluctant to provide ventilation to patients who are unlikely to have a successful outcome. This may result in underutilisation of available resources. A national policy is urgently required to provide doctors with guidance about how patients should be prioritised to ensure the maximum benefit is derived from limited resources.

Pater Knows Best: Withdrawal of Medical Treatment from Infants in Scotland

The cases of Charlie Gard and Alfie Evans placed the withdrawal of treatment from terminally ill infants at the forefront of medical law and ethics. In the medico-legal context, Scottish court procedures materially differ from those in England. This article considers these differences in light of the possibility that a similar case might soon be called before the Scottish courts. The Court of Session would then be required to consider whether to utilise its parens patriae jurisdiction to consent to the withdrawal of treatment as if it were the parent of the infant. The operation of this jurisdiction is such that the outcome of any Scottish case cannot be said to be certain, as the Scottish courts are bound to pay more heed to parental autonomy than their English counterparts do.