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By Abeezar I. Sarela.
In its recent guidance on consent, the General Medical Council (GMC) advises doctors to not provide treatment that ‘you (the doctor) don’t think would be in their (the patient’s) clinical interests’. It follows that doctors should only provide treatments that are in the patient’s clinical interests. But, what exactly is meant by ‘clinical interests’?
The GMC does not explain the term. In practice, it is sometimes confused with ‘best interests’. However, best interests is a legal term that applies specifically to making decisions for people who lack the capacity to do so for themselves. For example, oncologists might consider that either chemotherapy A or chemotherapy B could be in the clinical interests of a patient without capacity. Best interest decision-making would then involve choosing between A and B, or avoiding any chemotherapy and giving supportive care only. Whereas, patients with capacity would make these choices for themselves and do not need others to decide their best interests.
The difference between clinical interests and best interests is similar to that between setting a menu and then choosing from that menu. Clinical interests set the menu of treatment options that is available to a patient. Patients can then choose any option from this menu or decline all options, regardless of the consequences, because we all have a right of self-determination. But, do patients have a right to participate in setting the menu, too? Some might say yes. They would argue that treatment availability comes down to a matter of informed consent, through a process of shared decision-making (SDM) between the doctor and the patient.
However, senior judges have been clear that consent is valid only if the proposed treatment is, in the first place, ‘proper’. If the treatment is not proper, then the patient’s consent is meaningless, regardless of the sharing of information. In other words, setting the menu is not a matter for SDM. Rather, informed consent has two distinct stages. In the first stage, the doctor has to identify treatments that are proper (reasonable or available) for that patient. Then, the doctor has to involve the patient in the choosing between available treatments (or not having any treatment). It is this second stage that requires SDM: a dialogue about the menu of available treatments from the first stage.
What is it that makes a treatment available in the first place? Judges have explained that for a treatment to be available it has to be in the ‘public interest’. This turn to public interest can be justified in various ways. In a civilised society, we all (the ‘public’) have an interest in each other’s welfare. And, in some cases, the public interest can override an individual’s own wishes. Furthermore, in a publicly-funded health service it is inescapable that making treatment available to one person reduces resources for others. Consequently, it is in the public interest to set limits on availability of treatment.
The GMC would seem to have re-phrased ‘public interest’ as ‘clinical interests’. The endpoint of both is the same: the identification of available treatments. Thus, in advising doctors to think about a patient’s clinical interests, the GMC is actually asking doctors to consider the public interest. The GMC leaves this task to the professional judgment of doctors; and judges have done similarly. This approach is consistent with a well-established sociological argument that the public grants the medical profession with the authority to make certain decisions on its behalf. As doctors, let’s celebrate this sociological mandate and strive to serve the public. Or let’s challenge it, and find an alternative way. But, in the meanwhile, let’s not hide behind smokescreens of SDM and consent to decide about the availability of treatment.
Author: Abeezar I. Sarela
Affiliation: Department of Surgery, The Leeds Teaching Hospitals NHS Trust.
Competing interests: None declared
The post Re-thinking consent for treatment: clinical interests and the public interest appeared first on Journal of Medical Ethics blog.
By Anna Nelson.
Prompted by a sensationalist headline in the Daily Mail, there has been a furore on social media around an article published last year by bioethicist Anna Smajdor in which she defends ‘Whole Bodily Gestational Donation’ (WBGD). Put simply WBGD means that, with prior consent, the bodies of women in a permanent vegetative state could be used to gestate pregnancies on behalf of others.
The purpose of this blog is not to engage with the ethics of this proposal, nor is it to suggest that the paper on WBGD ought not to have been published (on this latter point, see J.Y. Lee). Rather, this blog reflects upon the widespread public response to the media reports on Smajdor’s article, and suggests that some of this anger could be more usefully focussed on present day challenges which threaten the rights and safety of women and birthing people.
Understandably, many of the concerns raised by social media users in response to WBGD were explicitly feminist in nature and highlighted worries about potential harm to women – physical harm to the bodies of the donor, harm to reproductive and bodily autonomy where coercion or lack of information undermines consent to such procedures, and broader, socio-cultural harm attached to the risk of WBGD compounding and perceptions of women as foetal environments.
I am not looking to address the legitimacy of such concerns, nor do I question people’s right to express these. Rather, I question why a theoretical exploration of a speculative aspect of reproductive science has attracted so much more attention and outrage – both by those in the media, and by those responding on social media – than the very real and very present way that women and birthing people are being harmed by the current under-investment in maternity services. I argue that those of us who are rightly worried about the way that future scientific developments could interact with society and medical institutions to sustain and perpetuate harm to women, need to have (at least) equal concern for that which is happening right now.
The disparity in outrage was powerfully illustrated by the fact that, only four days after WBGD came to widespread public attention, a shocking and heart-breaking story was published on BBC News, outlining how delays in post-birth treatment and poor interpretation services may have contributed to the post-partum death of a woman in Gloucester. While it would be inaccurate to suggest that this story went unnoticed, it received only a fraction of the attention that was prompted by Smajdor’s theoretical paper – both from the media and from the wider public.
This incident was not an isolated tragedy. Last year saw the publication of the final Ockenden Report on the independent investigation into maternity services at Shrewsbury and Telford Hospital NHS Trust, and the Kirkup Report on the independent investigation into maternity and neonatal services in East Kent. In both instances it was concluded that serious failings had resulted in avoidable harm to birthing women, their babies and their families.
Particularly shocking was the evidence laid out in the Kirkup Report about the “basic lack of kindness, care and understanding” being shown to “women and their families” (p48) and the failure to “ensure or preserve women’s dignity or meet their basic needs” (p50). Alongside this, both the campaign group FIVExMORE and the charity Birthrights published damning reports which highlighted the physical and psychological harm caused by systemic racism within the maternity services:
“There was one point in my labour right near the end where I remember looking at [my Partner] and saying, I’m going to be a Black statistic. I was so scared, and the epidural hadn’t come so I felt like people weren’t listening to me, it had been days…’
These reports clearly demonstrate that feminists are right to worry about the harms faced by women in the reproductive sphere – be those harms to physical safety, to bodily autonomy, to dignity or to psychological wellbeing. Yet, none of these issues attracted nearly as much attention or widespread public outrage as the theoretical discussion of WBGD. This, I suggest, illustrates that the groundswell of anger which was seen on social media following news coverage of Smajdor’s paper was somewhat misplaced; as reports about the ongoing, harmful experiences of women and others who birth within the current system do not attract the same levels of attention and public comment.
Of course, we should debate future scientific developments before they come to pass, and of course it is vital that we parse the potential intended and unintended consequences thereof (as someone whose PhD looked at partial ectogenesis, a speculative reproductive development, it would be incredibly hypocritical of me to suggest otherwise!). However, it is imperative that the same scrutiny is applied to the less sensational but arguably more materially significant harms which are experienced by women and birthing people, and their families, every day as a result of a maternity system which is underfunded, understaffed and undervalued.
While advances in reproductive science and technology do carry the potential to create new harms, it is more likely that they will serve to compound and magnify existing problems. Therefore, when we are thinking about these developments it is important not to lose sight of the forest for the trees. In order to truly protect women (and others who gestate), it would be helpful to direct some of the very vocal anger which was whipped up by Smajdor’s paper towards the very present and pressing fight to fund and sustain a maternity system which centres the dignity and safety of all who birth.
Author: Anna Nelson
Affiliation: Centre for Social Ethics and Policy, Department of Law, University of Manchester
Competing interests: None declared
Social media account of post author: @Anna_Nelson95
The post The furore around whole bodily gestational donation: a tale of misplaced anger? appeared first on Journal of Medical Ethics blog.
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