Article Text

Download PDFPDF

Ethics briefing
  1. Martin Davies,
  2. Sophie Brannan,
  3. Ruth Campbell,
  4. Veronica English,
  5. Rebecca Mussell,
  6. Julian Sheather
  1. Medical Ethics and Human Rights, British Medical Association, London, UK
  1. Correspondence to Martin Davies, Medical Ethics and Human Rights, British Medical Association, BMA House, Tavistock Square, London WC1H 9JP, UK; mdavies{at}bma.org.uk

Statistics from Altmetric.com

Endgame in Aleppo

Although the optimism of those times seems to have passed out of memory, the origins of the Syrian civil war reach back to the ‘Arab Spring’ and a burst of political hope throughout the Middle East. Although some countries saw regime change, since 2011, Syria has been engulfed in an increasingly brutal civil war. The war has seen sustained violations of International Humanitarian Law, including the use of the nerve agent sarin—its use being described by President Obama in June 2013 as ‘crossing a red line’.1

As the war has intensified, so the breaches of International Humanitarian Law, including the Geneva Conventions, have increased. The Geneva Conventions seek to bring specified forms of restraint in the waging of war. Article 24 of the 1949 Geneva Convention I states that:Medical personnel exclusively engaged in the search for, or the collection, transport or treatment of, the wounded or sick, or in the prevention of disease, staff exclusively engaged in the administration of medical units and establishments … shall be respected and protected in all circumstances2

At the beginning of 2016, Amnesty International issued a press release stating that Russia and Syria were targeting hospitals ‘as a strategy of war’. According to Amnesty, during the first 3 months of 2016 they gathered ‘compelling evidence of at least six deliberate attacks on hospitals, medical centres and clinics in the northern part of the Aleppo Countryside governorate’.3

Breaches of medical neutrality have not been confined to Syria. The civil war in Yemen, where a Saudi-led coalition is supporting the government against a Houthi militia, has also seen systematic attacks on health facilities.4 The sustained and deliberate nature of these attacks in Syria, Yemen and beyond have led senior humanitarian commentators to talk of normalisation, an emerging acceptance that hospitals and medical staff have become legitimate military targets—a catastrophic erosion of International Humanitarian Law.5

At the time of writing, the conflict in Aleppo looked to be in its final stages, with civilians and some rebel fighters being bussed out of the eastern area of the city.6 It is too early to say how this conflict will be resolved, but beyond the horrific violence and the scars of a terrible civil war lies the threat of another dangerous legacy. Unless a new international consensus can be forged, we risk seeing the marginalisation of International Humanitarian Law and a new era of wars being waged without constraint.

Data sharing for direct care

There is currently debate in the UK about when information can be shared to support a patient's direct care.i This discussion is a result of advances in digital technology, which have led to an emergence of proposals for new ways of sharing and using patient information which had not previously been envisaged.

One example is the new data sharing arrangement between the Royal Free London NHS Trust and DeepMind, reported in November.7 The Royal Free has agreed a 5-year partnership arrangement to share patient data with DeepMind, a group within Google UK Ltd.8

The collaboration between the Royal Free and DeepMind will use National Health Service (NHS) patient identifiable data to power an app called ‘Streams’. Data will be transferred, using encryption techniques, from medical records at the Royal Free to a DeepMind data centre.

The data are to be streamed from the Royal Free on a monthly basis. The transfer will include data on every patient who has attended the hospital in the past 5 years covering test results, inpatient episodes, critical care, and accident and emergency data.

On arrival at the DeepMind data centre, an algorithm will be used to identify patients at risk of acute kidney injury and, potentially, a range of other illnesses. Healthcare professionals will be sent an ‘alert’ message via the app when test results show a patient is at risk of becoming seriously ill.

The intention is that these early warning messages will reduce the number of patients who deteriorate without a clinician being aware, meaning that the appropriate action and treatment decisions can be taken sooner for this group of patients. It is also anticipated that use of this technology will free-up the valuable time of healthcare professionals, enabling them to spend more time with patients.

This project raises a number of interesting, and challenging, questions about the limits of when a patient's consent for sharing information for their direct care can be implied and what patients may or may not expect. In the UK, it is a well-established legal and ethical principle that an individual patient's consent can be implied for sharing among the healthcare team who are providing their direct care and with whom they have a ‘legitimate relationship’.

The most obvious example of this arrangement is where a patient agrees to a referral from one healthcare professional to another. This creates a legitimate relationship between the patient and the receiving professional. It would be reasonable and fair to assume that a patient would expect the receiving healthcare professional to have access to the information necessary to provide them with care and treatment, and therefore consent to share can be implied. In this context, the boundary of direct care is clearly drawn.

If the sharing is not for direct care, then the patient's consent cannot be implied. An alternative lawful and ethical basis for the sharing of identifiable patient information must then be found.

The new type of arrangements generally involve sharing large quantities of data on patient populations, although only a small percentage of patients will ultimately receive direct care. This is because, in order to identify an ‘at-risk’ group that would benefit from an intervention, a wealth of data on patients who are not at risk and who will never develop a preventable illness is required. The majority of patients therefore will not receive ‘direct care’ as we traditionally understand that concept, will not have a ‘legitimate relationship’ in place, and will not benefit from an intervention; their medical histories are to be shared so that the group who are at risk, which may or may not include them, can be accurately targeted.

New ways of sharing and using patient data for direct care will continue to evolve and expand in the future, therefore it is important that the legal and ethical rules are debated and clarified and are in line with patients' expectations. The Information Commissioner's Office, the body that regulates the Data Protection Act 1998 in the UK, and the Office of the National Data Guardian for England, are already looking into these issues.

This type of project can also raise questions about sharing health information with commercial companies outside of the ‘NHS family’. Commercial companies already provide a vast range of products and services to the NHS (itself not without controversy); however, research into public attitudes to companies accessing health data in the UK are sparse.9 It is as yet unclear how the public might view companies such as Google—which have significant commercial and business interests—having access to confidential health information. Much may depend on the public benefit to be gained and trust in the organisation to protect the data and prevent inappropriate sharing with third parties.

Assisted suicide

Physician-assisted suicide legalised in Colorado

In a ballot taken at the same time as the US Presidential Election, Colorado voters approved a proposition to permit physician-assisted suicide for the terminally ill. This makes Colorado the fifth state to enact legislation to permit physician-assisted dying in some form, alongside Oregon, Washington, Vermont and California. A further state, Montana, has created a defence for doctors who assist patients to die at their own request.10

Proposition 106, or the End of Life Options Act, is based on Oregon's Death with Dignity Act and would permit Colorado residents over the age of 18 to request assistance from a doctor to end their lives. Individuals must be:

  • Terminally ill (defined as death being reasonably expected within 6 months);

  • Mentally competent;

  • Making the request voluntarily.

Two separate oral request must be made, separated by at least 15 days, before a formal written request is made in the presence of two witnesses. Two doctors must confirm that the individual meets these eligibility criteria.11

Washington DC council approves assisted suicide legislation

The Council of Washington, DC, has voted to legalise assisted suicide. The law will permit physicians to prescribe a lethal dose of drugs to terminally ill, mentally competent adults, who have made a voluntary request for assistance in ending their life. There is a requirement for the request process to take place over 2 weeks, for two doctors to confirm that the individual meets the eligibility criteria, and for two witnesses to confirm that the individual is acting voluntarily.12

The Bill must now be approved by Mayor Muriel Bowser, who has stated she will not use her powers of veto, but has not confirmed whether she will sign it. If the Bill remains unsigned after 10 days, the legislation automatically becomes an act. The final step in the legislative process is for it to be approved by Congress over a 30 day review period.13

Home Office guidance on adults at risk in immigration detention

A High Court judge has ordered the Home Office to review its policy on the detention of victims of torture in immigration removal centres.14

The Home Office published new guidance in August 2016 on the factors to be taken into account in determining whether a person would be vulnerable to harm if they were to be detained, with the presumption that no person deemed to be ‘at risk’ should be detained. The fact that an individual has been the victim of torture is one of a number of factors to be considered in any assessment of vulnerability. In the new guidance, the Home Office adopted the United Nations Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (UNCAT) definition, which limits torture to acts by, or with the consent or acquiescence of, a public body. This differs from the broader standard adopted in previous UK jurisprudence (often referred to as the ‘Burnett definition’), which defined torture as:Any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted on a person for such purposes as obtaining from him or a third person information or a confession, punishing him for an act he or a third person has committed, or intimidating or coercing him or a third person, or for any reason based upon discrimination of any kind.15

A legal challenge to the guidance contended that the new definition of torture was incorrect, and meant that ‘potentially hundreds’ of people have been illegally detained. Justice Duncan Ouseley expressed concern that this might be the case and, pending a full hearing on the policy next year, ordered the Home Office to revert back to the previous, Burnett, definition of torture.

Re JS (Disposal of Body)

On 18 November, many newspapers carried the story of JS, a terminally ill teenager who wanted to be cryonically preserved after her death.16 ,17 JS was a 14-year-old girl suffering from a rare form of cancer. During the last months of her life, she had investigated the possibility of being cryonically preserved in the hope that she could be revived in the future once a cure for her illness had been discovered.

While her mother supported her wishes, her father, from whom she was estranged and had not seen for 8 years, objected. In an earlier hearing, he relented and said he was prepared to accept her wishes on various conditions—including the condition that he and other members of his family could view her body after death. JS objected to this and sought an order placing sole responsibility for arrangements after her death in the hands of her mother, thus preventing her father from intervening.

Despite the newspaper headlines, which suggested this was a historic ruling in relation to cryonics, the judge, Mr Justice Peter Jackson, made it very clear that the case did not concern the scientific validity or permissibility of cryonic preservation, and would not involve the making of an order that would permit or compel the cryonic preservation of JS's body. He stated that the role of the court was to ‘[provide] a means by which the uncertainty about what can happen during JS's lifetimes and after her death can be resolved so far as possible’.18

He held that, on the facts of the case, an order should be made granting the mother sole responsibility for what happened to JS's body after death. In making his decision he gave weight to the arguments that: it would be difficult if not impossible to reconvene the parties to make a decision after JS's death (particularly in light of the fact that preparations for cryopreservation need to begin immediately after death); resolving the issue before death would prevent ‘undignified scenes’ later; and the prospect that her father might see her after death, against her wishes, would cause JS significant distress in the last weeks of her life.19

He ultimately concluded:In this case, the predominant features are JS's wishes and feelings and her acute emotional needs. These are best met by an order granting the mother the right to make arrangements during JS's lifetimes for the preservation of her body after death. In making this order, the court is not approving the choice of arrangements, but it is giving JS and her mother the opportunity to make that choice.20

The judgement was delivered in three parts between 6 October and 10 November, and was subject to reporting restrictions preventing publication until 1 month after the girl's death.

References

View Abstract

Footnotes

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.

  • i The term direct care refers to when an individual patient is receiving care or treatment.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.