Compromising On the Right Not to Know?
Written by Ben Davies
Personal autonomy is the guiding light of contemporary clinical and research practice, at least in the UK. Whether someone is a potential participant in a research trial, or a patient being treated by a medical professional, the gold standard, violated only in extremis, is that they should decide for themselves whether to go ahead with a particular intervention, on the basis of as much relevant information as possible.
Roger Crisp recently discussed Professor Gopal Sreenivasan’s New Cross seminar, which argued against a requirement for informational disclosure in consenting to research participation. Sreenivasan’s argument was, at least in its first part, based on a straightforward appeal to autonomy: if autonomy is what matters most, I should have the right to autonomously refuse information.
I have previously outlined a related argument in a clinical context, in which I sought to undermine arguments against a putative ‘Right Not to Know’ that are themselves based in autonomy. In brief, my argument is, firstly, that a decision can itself be autonomous without promoting the agent’s future or overall autonomy and, second, that even if there is an autonomy-based moral duty to hear relevant information (as scholars such as Rosamond Rhodes argue), we can still have a right that people not force us to hear such information.
In a recent paper, Julian Savulescu and I go further into the details of the Right Not to Know, setting out the scope for a degree of compromise between the two central camps.
Urgency, Delayed Decision-making and Ethics in the Court of Protection
By Dominic Wilkinson, 24th June 2021
cross post from the Open Justice Court of Protection Project
On 11th June 2021, I was a public observer (via MS Teams) of a case in the Court of Protection: Case No. 1375980T Re GU (also blogged about by Jenny Kitzinger here).
The case was (though I did not know it beforehand) related closely to issues that I have written about over a number of years (for example here, here, here ). It was an urgent hearing before Mr Justice Hayden concerning clinically-assisted nutrition and hydration (CANH) for a 70 year old man, GU, who has been in a prolonged disorder of consciousness for seven years.
I have read the judgments from many similar cases in the UK, from the first ever case concerning a feeding tube for a vegetative patient heard in (what is now) the Supreme Court in 1992 (the case of Tony Bland, injured in the Hillsborough football stadium disaster), through to the most recent Supreme Court case of Re. Y, at which the court ruled that it is not mandatory to bring cases concerning CANH-withdrawal to court unless there is disagreement about best interests, or the decision is finely balanced (report here). I’m also familiar with the judgments in other jurisdictions (e.g. Schiavo in the USA, Lambert in France) and have been involved in deliberation in clinical ethics committees about cases with similar features.
Yet, this was my first time hearing open deliberations in the Court of Protection. It was a fascinating and thought-provoking experience. Continue reading
Phobias, Paternalism and the Prevention of Home Birth
By Dominic Wilkinson,
Cross post from the Open Justice Court of Protection blog
In a case in the Court of Protection last week, a judge authorised the use of force, if necessary, to ensure that a young woman gives birth in hospital rather than at home.
The woman (call her ‘P’) has severe agoraphobia, and has barely left her home in four years. Her doctors believe that it would be best for her to deliver her baby in hospital. But P has an overwhelming fear of leaving her home and cannot agree to this. Their particular concern is that P might develop a serious complication during her home birth, need emergency transport to hospital, but be unwilling or unable to agree to this because of the severity of her phobia.
At the conclusion of a three-day hearing, Mr Justice Holman declared that P lacked capacity to make the relevant decisions and ordered that it was lawful and in her best interests for medical staff to transfer her to hospital a few days before her estimated due date, and for medical professionals to offer her a choice of induction of labour or Caesarean Section in hospital. He also gave permission for the use of restraint, if necessary, in the event that she refuses to go to hospital voluntarily.
On the face of it, this looks like an extremely concerning infringement of a patient’s autonomy – a view that has been expressed by members of the public responding to media reports (e.g. see the blog post here). We normally think that adults should be free to make decisions about their medical care, including the freedom to refuse treatments that doctors are recommending. Decisions about place of birth and mode of birth are deeply personal decisions that can be hugely important for many women. For that reason, doctors and courts should be extremely loathe to infringe upon them.
Is it justified in this case, then, to physically restrain P and treat her against her wishes? In particular, is it justified to do this pre-emptively, before a complication develops? Continue reading
Is Life-Sustaining Treatment Being Lawfully Withdrawn From Patients In Prolonged Disorders Of Consciousness? Nobody Seems To Know
By Charles Foster
From the time of the decision of the House of Lords in Airedale NHS Trust v Bland (1993) until the decision of the Supreme Court in An NHS Trust v Y (2018) (which I will refer to here as ‘Y”) it had been understood that the withdrawal of life-sustaining treatment (typically clinically assisted nutrition and hydration – ‘CANH’) from patients in a vegetative state should be endorsed by the court. Over the years, this practice had been extended to cover such withdrawals in Minimally Conscious States too.
In Y, the Supreme Court held that there was no requirement for court review or endorsement. Why? Continue reading
Lockdown Erodes Agency
By Charles Foster
A couple of lockdown conversations:
- The other day I met a friend in the street. We hadn’t seen one another for over a year. We mimed the hugs that we would have given in a saner age, and started to talk. ‘There’s nothing to tell you’, she said. ‘Nothing’s happened since we last saw you. And that’s just as well, because, as you’ll find, I’ve forgotten how to talk, how to relate, and how to read ordinary cues. We’ve not been out. We’ve not changed anything. I wonder if we’ve been changed?’
- Another friend. ‘Zoom’s great, isn’t it? You switch off your camera and your microphone, and the meeting just goes on perfectly happily without you. Everyone thinks you’re there. Your name’s up on their screen. But you are just getting on with your own business.’
And a lockdown fact: Lockdown has been great for book sales. 2020 saw an estimated rise of 5.2% in volume sales of print books in the UK compared with 2019 sales. This was the biggest annual rise since 2007: Continue reading
Press Release: Medical and ethical experts say ‘make general anaesthesia more widely available for dying patients’
General anaesthesia is widely used for surgery and diagnostic interventions, to ensure the patient is completely unconscious during these procedures. However, in a paper published in Anaesthesia (a journal of the Association of Anaesthetists) ethics and anaesthesia experts from the University of Oxford say that general anaesthesia should be more widely available for patients at the end of their lives.
Painkilling medications (analgesia) are commonly given to dying patients. But they may not be enough, leading to the use of continuous deep sedation (also known as “palliative” or “terminal” sedation).
“However, for some patients these common interventions are not enough. Other patients may express a clear desire to be completely unconscious as they die,” explains co-author Professor Julian Savulescu, Uehiro Chair of Practical Ethics, University of Oxford, UK. “Some dying patients just want to sleep. Patients have a right to be unconscious if they are dying. We have the medical means to provide this and we should.”
The authors make clear that their proposal is not about assisted dying, currently illegal in the UK. Instead, their focus is on options available to ensure that patients are comfortable at the end of their lives.
Put simply, some patients will want to be certain they are unconscious and unaware as their final moments arrive.
“The desire to be unconscious as a means of eliminating the experience of physical or mental suffering is understandable,” says co-author Jaideep Pandit, Professor of Anaesthesia at Oxford University Hospitals NHS Foundation Trust, UK. “Unconsciousness through general anaesthesia offers the highest chance of making sure that the patient is unaware of going through an adverse process.”
He adds that “although general anaesthesia in end-of-life care has been used and described in the UK since 1995, modern multidisciplinary guidelines will be needed before this can be offered more widely. Raising this issue now is important, especially in view of international trends showing increased use of general anaesthesia for dying patients.”
Informed consent will, say the authors, be crucial in helping patients understand implications of general anaesthesia for end-of-life care, and the other options they have to manage their final days.
“It is vital that patients are informed of all the legal options available to them to relieve suffering at the end of life. That includes analgesia, sedation and, potentially now, anaesthesia,” says co-author Professor Dominic Wilkinson, Director of Medical Ethics, Uehiro Centre for Practical Ethics at the University of Oxford, UK. “The risks and benefits of each should be explained. Patients should be free to choose the option, or combination of options, that best meet their values.”
In a separate survey of the general public, published recently in the journal PLOS One, Professors Wilkinson and Savulescu found a high level of support for access to deep sedation in dying patients. Some 88% of those surveyed said they would like the option of a general anaesthetic if they were dying. About two thirds (64%) said they would personally choose to have an anaesthetic at the end of life.
Professor Wilkinson adds “members of the general public appear to value the option of deep sleep and complete relief from pain if they were dying. Our previous research indicates that the public believes that patients should be given this choice.”
The authors counter any concerns that the use of general anaesthesia for end-of-life care could hasten death. Studies show no statistically significant difference in mean survival time between patients at the end of life who receive continuous deep sedation and those who do not. In several countries, propofol infusion as used for general anaesthesia has been continued for up to 14 days. “This stresses the point that the purpose of administering anaesthesia is not to hasten death but simply to achieve unconsciousness.” explains co- author Antony Takla, Research Associate at the Uehiro Centre for Practical Ethics, University of Oxford.
The authors believe the UK medical community should prepare for increased requests for general anaesthesia for end-of-life care, based on current trends in Western Europe and Scandinavia.
They conclude: “we have described a potential role for general anaesthesia in end-of-life care. This has, in reality, been available to UK patients since the 1990s, but is not commonly discussed or provided. There is a strong ethical case for making this option more widely available. This does not imply that existing palliative care practice is deficient. Indeed, we might see that general anaesthesia in end-of-life care is requested by, or suitable for, very few patients.”
“However, the number of patients involved should not alone determine whether this issue is regarded as ethically important. Even if complete unconsciousness is desired by only a few patients, there is a moral imperative for national anaesthesia, palliative care and nursing organisations to prepare for the possibility that general anaesthesia in end-of-life care may be requested by some patients, and to work collaboratively to develop clear protocols to address all of the practical, ethical and medicolegal issues concerned.”
Crosspost: Learning to live with COVID – the tough choices ahead
By Jonathan Pugh, Dominic Wilkinson and Julian Savulescu
This work was supported by the UKRI/ AHRC funded UK Ethics Accelerator project, grant number AH/V013947/1. The UK Ethics Accelerator project can be found at https://ukpandemicethics.org/
As mass vaccination continues to be rolled out, the UK is beginning to see encouraging signs that the number of COVID deaths is reducing, and that the vaccines may be reducing the transmission of coronavirus.
While this is very welcome news, a mass vaccination programme is unlikely to be enough to eliminate the virus, so we need to turn our thoughts towards the ethics of the long-term management of COVID-19.
One strategy would be to aim for the elimination of the virus within the UK. New Zealand successfully implemented an elimination strategy earlier in the pandemic and is now in a post-elimination stage.
An elimination strategy in the UK would require combining the mass vaccination programme with severe restrictions on international travel to stop new cases and variants of the virus being imported. However, the government has been reluctant to endorse an elimination strategy, given the importance of international trade to the UK economy.
One of the main alternatives to the elimination strategy is to treat coronavirus as endemic to the UK and to aim for long-term suppression of the virus to acceptable levels. But adopting a suppression strategy for the long term will require us to make a societal decision about the harms we are and are not willing to accept.
Mandating COVID-19 Vaccination for Children
Written by Lisa Forsberg and Anthony Skelton
In many countries vaccine rollouts are now well underway. Vaccine programmes in Israel, the United Kingdom, Chile, United Arab Emirates, Bahrain and the United States have been particularly successful. Mass vaccination is vital to ending the pandemic. However, at present, vaccines are typically not approved for children under the age of 16. Full protection from COVID-19 at a population level will not be achieved until most children and adolescents are inoculated against the deadly disease. A number of pharmaceutical companies have started or will soon start clinical trials to test the safety and efficacy of COVID-19 vaccinations in children and adolescents. Initial results of clinical trials seem promising (see also here and here).
There are strong reasons to inoculate children. COVID-19 may harm or kill them. It disproportionately affects already disadvantaged populations. For example, a CDC study published in August 2020 found the hospitalisation rate to be five times higher for Black children and eight times higher for Latino children than it is for white children. In addition, inoculating children is necessary for establishing herd immunity and (perhaps more importantly), as Jeremy Samuel Faust and Angela L. Rasmussen explained in the New York Times, preventing the virus from spreading and mutating ‘into more dangerous variants, including ones that could harm both children and adults’. Continue reading
Suspending The Astra-Zeneca Vaccine and The Ethics of Precaution
By Jonathan Pugh, Dominic Wilkinson, and Julian Savulescu
The authors are working on the UK Pandemic Ethics Accelerator project – @PandemicEthics_. This project was funded by the Arts and Humanities Research Council (AHRC) as part of UKRI’s Covid-19 funding. All authors are affiliated to the University of Oxford.
Summary Points
- Preliminary Reviews suggest that the number of thrombotic events in individuals who have received the Astra Zeneca vaccine is not greater than the number we would normally expect in this population.
- It is crucial that we closely monitor these adverse events. The regulation of new medical interventions always requires us to manage uncertainty.
- A precautionary approach to managing this uncertainty may be important for ensuring continued confidence in vaccination.
- Regulators must weigh the potential risk suggested by these reports of adverse events following vaccination against the harm that suspension of the vaccine could have.
- The harm of suspending the use of the Astra Zeneca vaccine depends on how many preventable deaths we can expect by suspending its use.
- Amongst other things, this will depend on (i) how many people will be delayed in receiving a vaccine as a result (ii) the mortality risk of the people who would be prevented from receiving a vaccine, (iii) the prevalence of the virus at the time of the suspension, and (iv) the number of people who have received one dose of the Astra Zeneca vaccine, but not a second.
Ethics Doesn’t Rule, OK?
By Charles Foster
Ethics and law are different. Or they should be.
Law has the power to coerce. That is a frightening power. There should be as little law as possible. But there should be more ethics than there is.
The boundary between the two domains is not absolute. Clinicians are probably more frightened of being struck off by the General Medical Council (GMC) (after an adjudication on their ethics by the Medical Practitioners’ Tribunal Service) than they are about an order by a civil court that compels their insurers to pay damages for clinical negligence. The exercise of the GMC’s statutory powers can be draconian: the existence of those powers, and the associated sanctions, is certainly coercive.
But although the boundary is sometimes blurred, it is still real. It is the job of the law to keep it from becoming dangerously permeable. In a recent case the law was caught napping. Continue reading
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