The doctor-patient relationship -- Consent, choice, and refusal : adults with capacity -- Treating adults who lack capacity -- Children and young people -- Confidentiality -- Health records -- Contraception, abortion, and birth -- Assisted reproduction -- Genetics -- Caring for patients at the end of life -- Euthanasia and physician assisted suicide -- Responsibilities after a patient's death -- Prescribing and administering medication -- Research and innovative treatment -- Emergency situations -- Doctors with dual obligations -- Providing treatment and (...) care in detention settings -- Education and training -- Teamwork, referral, delegation, and shared care -- Public health dimensions of medical practice -- Reducing risk, clinical error, and poor performance. (shrink)

In the wake of scandals about the unauthorised retention of organs following postmortem examination, the issue of valid consent has returned to the forefront. Emphasis is put on obtaining explicit authorisation from the patient or family prior to any medical intervention, including those involving the dead. Although the controversies in the UK arose from the retention of human material for education or research rather than therapy, concern has been expressed that public mistrust could also adversely affect organ donation for transplantation. (...) At the same time, however, the British Medical Association continues to call for a shift to a system of presumed consent for organ transplantation. This apparent inconsistency can be justified because valid distinctions exist between the reasons requiring explicit consent for retention and the acceptability of presumed consent for transplantation. This paper argues for introducing a system of presumed consent for organ donation, given the overwhelming expressions of public support for transplantation. Ongoing legislative review in the UK provides an ideal chance to alter the default position to one where potential donors can simply acquiesce or opt out of donation. Combined with consultation with their relatives, this could be a much better method of realising individuals’ wishes. It would also achieve a better balance between the duties owed to the deceased and those owed to people awaiting a transplant. (shrink)

Legal battles continue in the UK over the Government’s plans to transport asylum seekers arriving on British shores to Rwanda in East Africa. Originally announced as a system for ‘processing’ asylum seekers, the Government has subsequently made it clear that there would not be an option for asylum seekers to return to the UK. The arrangement forms part of a deal between the UK and Rwanda, with the UK promising to invest £120 m in economic growth and development in Rwanda, (...) along with financing the cost of the ‘offshored’ asylum operation.1 The Government states that the policy is designed to break the business model of people traffickers involved in facilitating hazardous trips across the Channel in small, overcrowded and unseaworthy craft, leading to multiple drownings. Critics argue that the policy will do nothing to stop desperate people from seeking refuge in the UK, that transferring already traumatised people to Rwanda – which has been criticised for its human rights record – is inhumane and potentially outwith international law. Medical bodies, including the BMA, along with refugee organisations have expressed serious concerns about the health impact of such a system of ‘offshoring’. An equivalent system in Australia has been notorious for the devastating health impacts on those ‘offshored’ to the Pacific islands of Manus and Naura. Unusually in the UK the offshoring proposals have been greeted by unanimous condemnation by the Church of England. The lawfulness of the process is also subject to question. On the 14 July, a plane carrying a small number of asylum seekers to Rwanda was halted shortly before take-off following an intervention by the European Court of Human Rights. The ECtHR, part of the Council of Europe, of which the UK is still a member, said an Iraqi man known as KN faced ‘a real …. (shrink)

In this paper we question whether the concept of "genetic privacy" is a contradiction in terms. And, if so, whether the implications of such a conclusion, inevitably impact on how society comes to perceive privacy and responsibility generally. Current law and ethical discourse place a high value on self-determination and the rights of individuals. In the medical sphere, the recognition of patient "rights" has resulted in health professionals being given clear duties of candour and frankness. Dilemmas arise, however, when patients (...) decline to know relevant information or, knowing it, refuse to share it with others who may also need to know. This paper considers the notions of interconnectedness and responsibility to others which are brought to the fore in the genetic sphere and which challenge the primacy afforded to personal autonomy. It also explores the extent to which an individual's perceived moral obligations can or should be enforced. (shrink)

In February 2020, the British Medical Association will be surveying members for their views on what the BMA’s position on physician-assisted dying should be. The BMA is currently opposed to physician-assisted dying in all its forms, a position that was agreed in 2006 at the annual representative meeting, the Association’s policy-making conference.1 As previously reported in Ethics briefing,2 the decision to survey members follows a motion passed at last year’s ARM which called on the BMA to “carry out a poll (...) of members to ascertain their views on whether the BMA should adopt a neutral position with respect to a change in the law on assisted dying”. The results from the survey will not determine BMA policy. Rather, the results be published ahead of this year’s ARM and provided to those attending to inform a debate and discussion on the BMA’s policy position. More information about the survey, including a briefing pack of useful information, and information for BMA members on how to participate can be found online at www.bma.org.uk/PAD. ### High Court rejects Judicial reviews on assisted suicide The High Court has refused permission for two separate challenges to the law on assisted suicide in the UK to proceed to a full hearing. In the first case, Phil Newby, who has motor neuron disease, applied for judicial review of the law on assisted suicide and asked for the court to carry out a detailed examination of what he termed “legislative facts” – that is, an examination of the existing evidence on the “costs, risks and benefits” of regulating assisted suicide – including a cross-examination of relevant expert witnesses.1 Handing down the judgement, Lord Justice Irwin and Mrs Justice May, held that assisted dying …. (shrink)

In June 2021, the BMA published its report on moral distress and moral injury in UK doctors.1 The report includes definitions of the terms ‘moral distress’ and ‘moral injury’ as well as a summary of how the concepts have developed over time. There is also an analysis of the BMA’s pan-profession survey of moral distress and moral injury of doctors in the UK, the first of its kind. The impact of COVID-19 and recommendations for tackling moral distress also feature. Many (...) may be unfamiliar with the concepts of ‘moral distress’ and ‘moral injury’. These terms are relatively new, and debate is ongoing in academic circles on the best way to understand them.2 Some use the terms interchangeably. The BMA defines moral distress as the psychological unease generated where professionals identify an ethically correct action to take but are constrained in their ability to take that action. Even without an understanding of the morally correct action, moral distress can arise from the sense of a moral transgression. More simply, it is the feeling of unease stemming from situations where institutionally required behaviour does not align with moral principles. This can be as a result of a lack of power or agency, or structural limitations, such as insufficient staff, resources, training or time. The individual suffering from moral distress need not be the one who has acted or failed to act; moral distress can be caused by witnessing moral transgressions by others. Moral injury can arise where sustained moral distress leads to impaired function or longer-term psychological harm. Moral injury can produce profound guilt and shame, and in some cases also a sense of betrayal, anger and profound ‘moral disorientation’. It has also been linked to severe mental health issues. There is increasing recognition across the UK of the problem …. (shrink)

In February 2014, the Belgian Parliament passed legislation allowing euthanasia for terminally ill children of all ages by 86 votes to 44, with 12 abstentions. The Bill became law in early March after being signed by the King, making Belgium the first country in the world to abolish age restrictions for euthanasia. Previously, the youngest age at which euthanasia was permitted was 12 years old in The Netherlands.1Euthanasia was legalised in Belgium in 2002, and the new legislation introduces amendments to (...) the law extending euthanasia to minors in certain circumstances. Euthanasia is now permissible for children of all ages where the child has a “terminal and incurable illness”, experiences “constant and unbearable physical suffering”, and death is expected to occur within a “brief period”. The child must be deemed capable of making the decision, and have the agreement of their parents.Belgian law sets no timetable for euthanasia from the point at which the patient first expresses a wish to die. As with adults seeking euthanasia, any request must be made in writing. A physician and “outsider” brought in to give a second opinion must agree upon the diagnosis and prognosis, and a paediatric psychiatrist or psychologist must certify in writing that the child possesses “the capacity of discernment”. Following this, the child's physician must meet with the parents to inform them of the outcome of the consultation and ensure they are in agreement with the child's request. The child and the family must receive psychological care and support if so desired.The move provoked heated debate and divided the medical, legal and political professions in Belgium. A group of 160 of the country's paediatricians opposed a change in the law, citing concerns about the largely subjective assessment of the “capacity of discernment”, and drawing attention to advances in …. (shrink)

Ever so often in the UK, there is a flurry of activity around the information requirements of donor-conceived individuals. In April 2013, it was the launch of a report from the Nuffield Council on Bioethics that brought the issue back to public consciousness.1Since 1991, information about treatment with donor gametes or embryos has been collected by the Human Fertilisation and Embryology Authority . Since then, over 35 000 donor-conceived individuals have been born through treatment in licensed clinics. Medical information and (...) information about donors’ appearance are collected by clinics, and donors are encouraged to put together a ‘pen portrait’ giving information about themselves for any resulting children. One focus of the new report is on improving the quality and quantity of information available about donors.Traditionally, gamete and embryo donations were practised on an anonymous basis, so that those born as a result of such donation may receive only non-identifying information about the donor when they reach the age of 18 . This changed in 2005 when donor anonymity was removed so that anyone donating after that time could be identified to individuals born as a result of the treatment. Those who have donated in the past are also able to reregister as identifiable donors. Much concern was expressed at the time that this would exacerbate the shortage of donors although the Nuffield Council on Bioethics reports that, 8 years on, those clinics that actively recruit donors appear to be successful in finding sufficient donors. The report recommends that the option of anonymous donation should not be reintroduced.A big issue of debate in the UK has been, and continues to be, whether parents should tell their …. (shrink)

In July 2019, Stella Creasy MP and her team succeeded in attaching an amendment to a largely administrative bill which would require the UK government to liberalise abortion laws in Northern Ireland by 21 October 2019, provided the Northern Ireland government does not resume before that date.1 The amendment succeeded in the Commons, 332 votes to 99 and later, with some adjustments, in the Lords, 182 votes to 37. The Bill received Royal Assent on 24 July 2019. In Northern Ireland, (...) abortion remains a criminal offence punishable by up to life imprisonment in all except exceptional circumstances, that is, where it is ‘necessary to preserve the life of the woman’ or where there is a ‘risk of serious adverse effect which is either long term or permanent’.2 The law makes no provision for women who are pregnant as a result of rape, incest or in the case of fatal fetal abnormality. Because there is a lack of clarity around which circumstances or conditions would have a sufficiently ‘serious and long-term adverse effect’, it has been argued that the law has had a ‘chilling effect’ on service provision.3 As a result, only 13 abortions were performed in Northern Ireland in 2018/2019.4 Instead, more than 1000 women travelled from Northern Ireland to England to access legal abortion services.5 A recent review of the law in Northern Ireland concluded that this situation disadvantages women who cannot afford to or are unable to travel.3 Women are also reportedly purchasing abortifacients unlawfully online, exposing them to the risk of prosecution as well as to risks where the pills are unsafe or lead to complications. Creasey’s amendment requires the Secretary of State for …. (shrink)

The British Medical Association and Royal College of Physicians have published new guidance, endorsed by the General Medical Council, on decision-making about clinically assisted nutrition and hydration and adults who lack capacity to consent. The development of the guidance follows a series of legal cases which has created confusion about the precise circumstances in which an application to the court is required before CANH is withdrawn which has culminated with the decision of the Supreme Court in National Health Service Trust (...) versus Y. 1 This confirmed that there is no requirement to go to court, providing there is agreement as to the patient’s best interests, the provisions of the Mental Capacity Act 2005 have been observed, and the relevant professional guidance has been followed. The new guidance covers all decisions to start, restart, continue, or stop providing CANH in patients who are not imminently dying, in circumstances where CANH is the primary life-sustaining treatment being provided. It goes beyond the category of patients in permanent vegetative state or minimally conscious state who have previously been the subject of court applications, and also covers decisions for patients with neurodegenerative conditions and patients who have suffered a sudden onset brain injury in addition to having multiple comorbidities or general frailty which is likely to impact on life expectancy. It provides a clear statement of doctors’ legal responsibilities, covers the importance of robust best interests’ assessments and sets out the process to be followed for sufficient independent scrutiny of decisions. In light of some of the identified problems with decisions about CANH, a particular focus of the guidance is on the importance of regular best interests’ assessments, and it provides detailed practical guidance about how to approach these. The development of …. (shrink)

Currently, in England and Wales, Court of Protection’s Practice Directive 9E (PD9E) requires all cases of proposed withdrawal or withholding of life-sustaining treatment in relation to adults in a permanent vegetative state (PVS) or minimally conscious state be referred to the Court. This paper looks at the origins of PD9E and contrasts the routine requirement to refer cases to court with the complex clinical terrain that comprises those suffering from prolonged disorders of consciousness. We look at the role of the (...) court in decision making in these contexts and we ask what role the courts are called on to play in these decisions. We argue that PD9E, as currently drafted, is too imprecise to achieve its purpose. With our focus always on the best interests of patients, we argue that most decisions of this nature should be made according to a strict protocol but without the need for court approval. Court overview should be reserved for cases of disagreement between those involved in the decision that cannot be resolved by other methods, where there are serious doubts about the individual’s best interests or where there are legally untested aspects to the decision. (shrink)

On 7 April 2022 – coinciding with World Health Day – the British Medical Association launched its new report, Health and human rights in the new world order.1 Written during the global upheaval triggered by the COVID-19 pandemic, and published just weeks after the Russian invasion of Ukraine, the report responds to a range of emerging and intensifying threats to health-related human rights globally. As the report establishes, human rights in health and healthcare matter because human suffering, and its relief, (...) are fundamental moral issues. As relief of human suffering is the primary purpose of medicine, it follows that doctors and other health professionals are often active in times of human challenge and extremity. During conflict, humanitarian crises, and, as we have so recently seen, global public health emergencies, health professionals are essential to the response. But these crises – and the response to them – can put fundamental human rights and interests under pressure. The Russian invasion of Ukraine has seen sustained indiscriminate shelling of civilian infrastructure. Whether health facilities were directly targeted is moot – the indiscriminate nature of the assault means they will inevitably be hit. Not only is this a violation of the Geneva Conventions, it undermines fundamental human rights, not least of which the right to health. Destroying health infrastructure drives further suffering and delays post-conflict recovery. Public heath emergencies can rightly require draconian measures – social distancing, enforced isolation, location tracking, economic shutdown. Although we saw their necessity during the COVID-19 outbreak, concerns were raised about disproportionate restrictions on basic rights, including rights to privacy and liberty. Human Rights Watch drew attention to the way governments unlawfully exploited COVID-19 to crack down on fundamental rights.2 Although conflicts and public health emergencies are not new, the report also tracks a number of …. (shrink)

v. 1. The scientific basis for reading character ...

An Amnesty International briefing, published in July 2020, highlights the grave risks health workers are facing globally, particularly in the face of the COVID-19 pandemic.1 The report uses data from 63 countries across the world from January to June 2020 and is rich with examples. While recognising that information about the pandemic is constantly evolving, and each country is in a separate phase of the outbreak, Amnesty International draws attention to several troubling trends. By virtue of the role undertaken by (...) health workers, they face a greater exposure to COVID-19, which has contributed to many of the concerns they now deal with. The briefing notes the evidence of the higher death rate from health workers compared with the general population in countries ranging from Denmark to Argentina, while also pointing out the significantly higher death rate in BAME health workers raised by the BMA in the UK.2 PPE shortages had been reported in nearly all of the 63 countries analysed. Many health workers globally stated that they had to buy their own PPE and others described cases of ‘improvisation’, when suitable PPE was not available, such as using bin bags or raincoats. Furthermore, health workers in several countries had experienced increases in workload with formal measures to extend health workers’ contracted hours passed in some countries as well as further changes to their terms and conditions of service. There were also reports of increased mental stress, particularly from those working in ICUs; the increased work and stress is not being matched with suitable compensation or remuneration. Despite many countries passing special benefits for health workers, it was commonly stated that these benefits had not been received yet or that they did not apply to all health workers, with cleaners and other lower-paid yet vital roles excluded. Deeply concerning …. (shrink)

At the time of writing the COVID-19 pandemic was entering its ninth month, with nearly 800 000 recorded fatalities and 22 million infections in 188 countries and territories.1 In previous ethics briefings2 we raised concerns about the possibility that demand for life-sustaining treatment would overwhelm supply, with a consequent requirement for health professionals to make challenging triage decisions. Fortunately, to date, these have largely not been realised, although there is a possibility that countries in which containment measures have been less-successful, (...) such as South Africa, may still be required to triage.3 Despite the successful ‘flattening of the curve’ in many countries, there is a wide consensus that we remain firmly within the pandemic. Enormous practical challenges remain. It is unclear whether the pandemic will ultimately take the form of two or more successive waves, or whether the patchwork of global responses will lead to a sustained slow ‘burn’ with sporadic flare-ups.4 Areas of uncertainty include whether infection confers some immunity, how long any such immunity might last, whether effective vaccines can be developed and if seasonal temperature fluctuations alter the spread of the virus. The pandemic will also be fundamentally shaped by the decisions that governments make and the extent to which their diktats are complied with by citizens. With the – possibly temporary – retreat of urgent clinical ethics issues, such as triage, opportunities have arisen to reflect on some of the ethical questions that underlie and structure the demanding policy decisions that governments are wrestling with. One of the early questions was how to balance the complex constellation of costs and benefits associated with lockdown. Countries that …. (shrink)

In December, the National Data Guardian 1 for health and care in England, Dame Fiona Caldicott, published the outcomes of a public consultation about the Caldicott Principles and the role of Caldicott Guardians.1 The Caldicott Principles are good practice guidelines which have been used by health and social care organisations in the UK since 1997 to ensure that people’s data are kept safe and used in an ethical way.2 The role of the Caldicott Guardian is well-established in the UK. Caldicott (...) Guardians are senior people which support the upholding of the Caldicott Principles within organisations. In response to views expressed during the consultation the NDG has added an eighth Caldicott Principle to the existing seven and will use her statutory powers to issue guidance about the appointment of Caldicott Guardians for health and adult social care organisations. The new eighth Caldicott Principle is: ‘Inform patients and service users about how their confidential information is used’. It provides that: > A range of steps should be taken to ensure no surprises for patients and service users, so they can have clear expectations about how and why their confidential information is used, and what choices they have about this. These steps will vary depending on the use: as a minimum, this should include providing accessible, relevant and appropriate information - in some cases, greater engagement will be required. The NDG explains that the introduction of the new principle was prompted by consideration of the role that the legal concept of ‘reasonable expectations’ should play in shaping the circumstances under which health and care data may be legitimately shared. The NDG does not envisage that this principle will establish reasonable expectations as a legal basis in its own right …. (shrink)

As the COVID-19 vaccine roll out continues apace, in the higher-income countries at least, concerns remain about the level of vaccine coverage in some health and social care settings. Although most countries have seen a relatively high uptake of vaccination against COVID-19 among staff, there continue to be some pockets of hesitancy. The risk of outbreaks in settings with potentially very vulnerable patients has led some governments across Europe to consider, or to introduce, measures compelling healthcare staff to be vaccinated. (...) The justifiability of mandating the vaccination of healthcare professionals is a longstanding question but it has come to the fore in recent months following a resurgence of cases of COVID-19 and the prevalence of the more transmissible Delta variant. In deciding whether the introduction of a mandate is appropriate, states have to balance a range of ethical and practical considerations. A voluntary approach, backed up with education, respects healthcare workers’ autonomy to make private healthcare decisions, which is valued highly in liberal democracies. However, healthcare professionals also have an obligation to ensure that they do not present a risk of harm to their patients. Similarly, healthcare providers have a responsibility to take appropriate steps to minimise the risk of infection. Alongside balancing these rights and responsibilities, governments must also consider the potential consequences and risks of enforcing vaccine uptake. For example, there are concerns that a coercive approach could deepen mistrust and resentment among people who are genuinely fearful or hesitant. Moreover, a large number of refusals and the subsequent imposition of sanctions, such as suspension or redeployment, could affect the ability of providers to staff necessary services. In the UK, Wales, Northern Ireland and Scotland have all ruled out the introduction of compulsory vaccination. However, in July, the English Parliament voted through …. (shrink)

In a recent judgment1 the Court of Protection was highly critical of health professionals for continuing to provide clinically-assisted nutrition and hydration in the face of disagreement about the patient’s best interests, without seeking to resolve the issue. This hearing had been set up specifically to consider whether GU’s dignity had been properly protected, and if not why not, given concerns raised by the Official Solicitor about what she considered to be “a complete abrogation of responsibility to consider properly or (...) at all, and to determine whether it was in GU’s best interests and therefore lawful to continue to give him an invasive medical treatment, CANH.” In April 2014, at 63 years old and living in Thailand, GU sustained severe injuries after suffering from an electrocution accident. He sustained a cardiorespiratory arrest with a significant delay before cardiopulmonary resuscitation was started and was unconscious and unresponsive. In September 2014 he was transferred to the UK. In August 2018, GU’s brother made a request for a best interests decision concerning the continuation of CANH. The family met to discuss this and all except GU’s son, agreed that continuing CANH was not in GU’s best interests. In view of the fact that there was not unanimity among the family, a decision was made that CANH should continue. Commenting on this decision, Mr Justice Hayden said ‘the apparent assumption that in the face of family disagreement ‘ therefore will continue to be cared for by nursing staff ” is a troubling non sequitur’ and stressed that ‘family dissent to a medical consensus should never stand in the way of an incapacitated patients’ best interests being properly identified’. He also made clear that the responsibility for ensuring that a best interests assessment is undertaken rests with the …. (shrink)

In mid-2018, following a survey of lesbian, gay, bisexual and transgender groups, the UK government issued a consultation on the proposed reform of the Gender Recognition Act for England and Wales.1 When it was first introduced in 2004, the GRA was considered innovative, even world-leading legislation.2 The act enables any adult to seek to change their legal gender provided several criteria are met. These include: If the applicant is successful, he or she is issued with a ‘gender recognition certificate’, their (...) birth certificate is changed and ‘for all purposes’ they become, legally, their acquired or affirmed gender. Since 2004, cultural change in relation to gender identity has been rapid. During the government’s preliminary survey, several concerns were raised about the GRA, particularly among those who have changed, or who may be seeking to change, their gender. These included: The government has stated that being trans is not a mental illness—more a fact of human diversity. It points to the World Health Organisation’s revision of the International Classification of Diseases, in which ‘gender incongruence’, another term for gender dysphoria, is no longer classed under ‘mental and behavioural disorders’.3 ### Draft proposals for change The government considers the reform of the GRA …. (shrink)