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Most people who are dying want to be cared for at home, but only half of them achieve this. The likelihood of a home death often depends on the availability of able and willing lay carers. When people who are dying are unable to take oral medication, injectable medication is used. When top-up medication is required, a health-care professional travels to the dying person's home, which may delay symptom relief. The administration of subcutaneous medication by lay carers, although not widespread UK practice, has proven to be key in achieving better symptom control for those dying at home in other countries.To determine if carer administration of as-needed subcutaneous medication for common breakthrough symptoms in people dying at home is feasible and acceptable in the UK, and if it would be feasible to test this intervention in a future definitive randomised controlled trial.We conducted a two-arm, parallel-group, individually randomised, open pilot trial of the intervention versus usual care, with a 1 : 1 allocation ratio, using convergent mixed methods.Home-based care without 24/7 paid care provision, in three UK sites.Participants were dyads of adult patients and carers: patients in the last weeks of their life who wished to die at home and lay carers who were willing to be trained to give subcutaneous medication. Strict risk assessment criteria needed to be met before approach, including known history of substance abuse or carer ability to be trained to competency.Intervention-group carers received training by local nurses using a manualised training package.Quantitative data were collected at baseline and 6-8 weeks post bereavement and via carer diaries. Interviews with carers and health-care professionals explored attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The main outcomes of interest were feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures.In total, 40 out of 101 eligible dyads were recruited (39.6%), which met the feasibility criterion of recruiting 30% of eligible dyads. The expected recruitment target (≈50 dyads) was not reached, as fewer than expected participants were identified. Although the overall retention rate was 55% (22/40), this was substantially unbalanced [30% (6/20) usual care and 80% (16/20) intervention]. The feasibility criterion of 40% retention was, therefore, considered not met. A total of 12 carers (intervention,The success of a future definitive trial is uncertain because of equivocal results in the progression criteria, particularly poor recruitment overall and a low retention rate in the usual-care group. Future work regarding the intervention should include understanding the context of UK areas where this has been adopted, ascertaining wider public views and exploring health-care professional views on burden and risk in the NHS context. There should be consideration of the need for national policy and of the most appropriate quantitative outcome measures to use. This will help to ascertain if there are unanswered questions to be studied in a trial.Current Controlled Trials ISRCTN11211024.This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full inMost people in the UK would prefer to die at home, but only half of them achieve this. This usually depends on having able and willing lay carers (family or friends) to help look after them. Once swallowing is not possible, medicine is given continually under the skin (syringe driver). If common problems such as pain, vomiting or agitation break through, health-care professionals attend to give extra doses. The wait for a health-care professional to arrive can be distressing. In the UK, it is legal (but not routine) for lay carers to give needle-free subcutaneous injections themselves. We reworked an Australian carer education package for UK use. The best way to find out if this would work well is to do a randomised controlled trial. This is a test in which, at random, half of the people taking part receive ‘usual care’ and the other half receive the ‘new care’ or intervention. A pilot randomised controlled trial (a ‘test’ trial to see if a larger one is worth doing) was carried out to determine if lay carer injections were possible in the UK. We approached 90 dyads (a dying person and a key carer) and, of these, 40 were willing to take part and 22 completed the follow-up visit, so we could analyse their data. Of these 22 dyads, 16 were in the intervention group (lay carer injects) and six were in the control group (usual care). All carers were asked to keep a diary. Carers and health-care professionals were interviewed (qualitative study) and carer preferences were assessed. This new practice was safe, acceptable and welcomed. Carer confidence increased rapidly, symptom control was quicker and the interviews backed up these findings. Recruitment was low owing to overstretched health-care professionals. Only certain families were picked. Dyads in the usual-care group often wished they were in the intervention group. Carers found it difficult to complete some of the questionnaires that were used to measure the effect of the intervention. Therefore, uncertainty remains as to whether or not a full trial should proceed. Because the practice is already legal, some areas in the UK are already undertaking it. We plan to study what makes this practice possible or less possible to achieve.

It is well known that families frequently overrule the wishes of dying patients who had previously expressed a wish to donate their organs. Various strategies have been suggested to reduce the frequency of these ‘family overrules’. However, the possibility of families overruling a patient’s registered decision not to donate has not been discussed in the medical literature, although it is legally possible in some countries. In this article, we provide an ethical analysis of family overrule of a relative’s refusal to donate, using the different jurisdictions of the UK, Switzerland, Germany and the Netherlands to provide some context. Despite some asymmetries between overruling consent and overruling refusal, there are some cases in which donation should proceed despite a recorded refusal to do so.

In the common law world, both the medical and legal professions initially considered gender reassignment surgery to be unlawful when first practised and discussed in the first half of the twentieth century. While most medical procedures are covered by the medical exception to the law governing serious offences against the person, many doctors and the lawyers they consulted doubted that this exception applied to gender reassignment surgery. In this article I trace the differing and changing interpretations of the medical exception as applied to gender reassignment surgery, and the shift towards legal acceptance in the two common law jurisdictions that led the way in both performing gender reassignment surgery and debating its legality, the United States and the United Kingdom. Although this shift occurred without formal legal intervention either through legislation or judicial decision (for example on a test case), inferences of legality drawn from related civil-law decisions bolstered the legal acceptance of gender reassignment surgery.By increasing the suffering of patients and potential patients, the criminal law played both an important and primarily malign role prior to the eventual public, professional and legal acceptance of GRS. A real threat of criminal prosecution inhibited doctors from proceeding, distorted diagnoses and affected the kinds of procedures performed. After-care was expanded and manipulated to avoid the risk of prosecution or the appearance of unlawful surgery. By contrast, civil and administrative law played a more positive, albeit indirect, role in interpreting the medical exception and its application to gender reassignment surgery.

Legal framework. (DOCX 23 kb)

Background: Whilst the majority of seriously ill people wish to die at home, only half achieve this. The likelihood of someone dying at home often depends on the availability of able and willing lay carers to support them. Dying people are usually unable to take oral medication. When top-up symptom relief medication is required, a clinician travels to the home to administer injectable medication, with attendant delays. The administration of subcutaneous injections by lay carers, though not widespread practice in the UK, has proven key in achieving home deaths in other countries. Our aim is to determine if carer-administration of as-needed subcutaneous medication for four frequent breakthrough symptoms (pain, nausea, restlessness and noisy breathing) in home-based dying patients is feasible and acceptable in the UK. Methods: The paper describes a randomised pilot trial across three UK sites, with an embedded qualitative study. Dyads of adult patients/carers are eligible, where patients are in the last weeks of life, wish to die at home, and lay carers who are willing to be trained to give subcutaneous medication. Dyads who do not meet strict risk assessment criteria (including known history of substance abuse or carer ability to be trained to competency) will not be approached. Carers in the intervention arm will receive a manualised training package delivered by their local nursing team. Dyads in the control arm will receive usual care. The main outcomes of interest are feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. Interviews with carers and healthcare professionals will explore attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The study has obtained full ethical approval. Discussion: This study will rehearse the procedures and logistics which will be undertaken in a future definitive randomised controlled trial, and will inform the design of such a study. Findings will illuminate methodological and ethical issues pertaining to researching last days of life care. The study is funded by the National Institute for Health Research (Health Technology Assessment [HTA] project 15/10/37). Trial registration: ISRCTN, ISRCTN 11211024. Assigned 27 September 2016, http://www.isrctn.com/ISRCTN11211024. Keywords: End-of-life care, Care of the dying, Palliative care, Symptom control, Carer administration, Randomised pilot trial

In this article, we analyse the potential benefits and disadvantages of permitting healthcare professionals to invoke conscientious objection to deceased organ donation. There is some evidence that permitting doctors and nurses to register objections can ultimately lead to attitudinal change and acceptance of organ donation. However, while there may be grounds for conscientious objection in other cases such as abortion and euthanasia, the life-saving nature of donation and transplantation renders objection in this context more difficult to justify. In general, dialogue between healthcare professionals is a more appropriate solution, and any objections must be justified with a strong rationale in hospitals where such policies are put in place.

Millions of people want to donate their organs after they die for transplantation, and many of them have registered their wish to do so or told their family and friends about their decision. For most of them, however, this wish is unlikely to be fulfilled, as only a small number of deaths (1% in the United Kingdom) occur in circumstances where the opportunity to donate organs is possible. Even for those who do die in the "right" way and have recorded their wishes or live in a jurisdiction with a "presumed consent" system, donation often does not go ahead because of another issue: their families refuse to allow donation to proceed. In some jurisdictions, the rate of "family overrule" is over 10%. In this article, we provide a systematic ethical analysis of the family overrule of donation of solid organs by deceased patients, and examine arguments both in favor of and against allowing relatives to "veto" the potential donor's intentions. First, we provide a brief review of the different consent systems in various European countries, and the ramifications for family overrule. Next, we describe and discuss the arguments in favor of permitting donation intentions to be overruled, and then the arguments against doing so. The "pro" arguments are: overrule minimises family distress and staff stress; families need to cooperate for donation to take place; families might have evidence regarding refusal; and failure to permit overrules could weaken trust in the donation system. The "con" arguments are: overrule violates the patient's wishes; the family is too distressed and will regret the decision; overruling harms other patients; and regulations prohibit overrule. We conclude with a general discussion and recommendations for dealing with families who wish to overrule donation. Overall, overrule should only rarely be permitted.

This consultation response covers the following issues: definitions; capacity; patient's right to refuse; review.

This is a response to the New South Wales consultation on ante-mortem interventions for organ donation submitted on behalf of the former members of the UK Donation Ethics Committee (UKDEC), UKDEC was an independent body, hosted by the Academy of Medical Royal Colleges, and funded by all four UK Health Departments. UKDEC’s role was to consider ethical issues relating to the field of organ donation and transplantation and to provide independent advice to clinicians, policy leads and others. The NSW Discussion Paper assumes that ante-mortem interventions cannot be authorised using the Guardianship Act 1987, s.32 standard for decision-making, i.e. promoting and maintaining the patient’s health and well-being. In the response we argue that provisions in the Guardianship Act and their judicial interpretation appear to leave room for arguments that non-therapeutic medical interventions such as ante-mortem interventions to optimise donor organ quality and improve transplant outcomes could be permitted under the Act if they are in the patient’s best interests, interpreted broadly to include emotional, psychological and social interests, although an amendment to s.46 of the Act would make this clearer. In our view, the use of the Guardianship Act 1987 to make a best interests decision for the patient is to be preferred to the proposed amendment of the Human Tissue Act 1983 to permit the senior next of kin to consent to ante-mortem interventions. The latter proposal contains no standard of decision-making (for example, best interests), so senior next of kin could consent to ante-mortem interventions which are not in the patient’s best interests. The retention of ante-mortem decision-making under the Guardianship Act 1987 would achieve greater consistency and protect the patient from abuse or exploitation, as required by s.4(g). Moreover, it would avoid the use of ‘special rules’ for decisions at the end of potential organ donors’ lives, and the risk of damaging public confidence in organ donation and discouraging the registration of consent to donation.

Some form of assisted dying (voluntary euthanasia and/or assisted suicide) is lawful in the Netherlands, Belgium, Oregon, and Switzerland. In order to be lawful in these jurisdictions, a valid request must precede the provision of assistance to die. Non-adherence to the criteria for valid requests for assisted dying may be a trigger for civil and/or criminal liability, as well as disciplinary sanctions where the assistor is a medical professional. In this article, we review the criteria and evidence in respect of requests for assisted dying in the Netherlands, Belgium, Oregon, and Switzerland, with the aim of establishing whether individuals who receive assisted dying do so on the basis of valid requests. We conclude that the evidence suggests that individuals who receive assisted dying in the four jurisdictions examined do so on the basis of valid requests and third parties who assist death do not act unlawfully. However, further research on the elements that may undermine the validity of requests for assisted dying is warranted. More research on the reasons why requests for assisted dying are refused is also desirable.

This report deals with organ retrieval procedures in both controlled and uncontrolled DCD, looking at the ethical, legal, and psychosocial aspects during the different phases of the process. A recently published report by the UK Donation Ethics Committee (UKDEC) has served as an important reference document to outline the steps in the controlled DCD patient-donor pathway (Academy of Medical Royal Colleges. UK Donation Ethics Committee. An ethical framework for controlled donation after circulatory death. December 2011). For uncontrolled DCD, the UKDEC pathway description was adapted. At the 6th International Conference in Organ Donation held in Paris in 2013, an established expert European Working Group reviewed the UKDEC reports, which were then considered along with the available published literature. Along this pathway, the crucial ethical, legal, and psychosocial aspects have been flagged, and relevant recommendations have been formulated based on a consensus of the working group.

(2012). Prospective Legal Immunity and Assistance with Dying: Submission to the Commission on Assisted Dying. King's Law Journal: Vol. 23, No. 2, pp. 181-193.

New and controversial medical procedures such as contraceptive sterilisation are often thought, at least initially, to be prohibited by the criminal law. This article examines how – without any formal legal intervention – contraceptive sterilisation for a consenting patient eventually became accepted as lawful in the United Kingdom. A prominent role was played by the medical profession, its organisations and its journals. A significant role was played by a little-known campaigning organisation in ensuring this legal change.

Following the House of Lords' decision in Purdy, the Director of Public Prosecutions issued an interim policy for prosecutors setting out the factors to be considered when deciding whether a prosecution in an assisted suicide case is in the public interest. This paper considers the interim policy, the subsequent public consultation and the resulting final policy. Key aspects of the policy are examined, including the condition of the victim, the decision to commit suicide and the role of organised or professional assistance. The inclusion of assisted suicides which take place within England and Wales makes the informal legal change realised by the policy more significant than was originally anticipated.

Slippery slope arguments appear regularly whenever morally contested social change is proposed. Such arguments assume that all or some consequences which could possibly flow from permitting a particular practice are morally unacceptable.Typically, “slippery slope” arguments claim that endorsing some premise, doing some action or adopting some policy will lead to some definite outcome that is generally judged to be wrong or bad. The “slope” is “slippery” because there are claimed to be no plausible halting points between the initial commitment to a premise, action, or policy and the resultant bad outcome. The desire to avoid such projected future consequences provides adequate reasons for not taking the first step.Thus the legalization of abortion in limited circumstances is asserted to lead down the slippery slope towards abortion on demand and even infanticide; and the legalization of assisted suicide to lead inexorably to the acceptance of voluntary euthanasia and subsequently to the sanctioning of the practice of nonvoluntary euthanasia – even involuntary euthanasia of “undesirable” individuals.

In this article, the authors argue that a variety of psychological factors stand in the way of providing expert advice to the courts in terms of assessing the credibility of a complainant’s account of sexual abuse when there is a significant delay in reporting. These include difficulties in assessing (a) the complainant’s account of how he or she claims to have remembered or forgotten the abuse, (b) whether (and how) the claim of abuse originated within a therapeutic setting, and (c) the difficulty of generalizing from empirical evidence. It is argued that all of these issues can be more easily avoided if experts maintain a case-specific focus. In this article, the authors review both the psychological and legal controversies surrounding the false‐recovered memory debate, discuss how courts approach the admissibility and use of recovered memory testimony, and conclude that expert witnesses should carefully consider the above points before drawing general conclusions from the literature and applying them to individual cases.

This article reviews the use of expert evidence to explain delay in complaint in prosecutions for childhood sexual abuse in Australia, New Zealand, Canada, the United States, Ireland, Scotland and England and Wales. Such expert evidence is ‘counterintuitive evidence’ designed to dispel myths, misconceptions or misunderstandings in the minds of jurors which may adversely affect their evaluation of the complainant's evidence.

This article reviews legal responses to delayed complaints in child sexual abuse prosecutions in Australia, Canada, the United States, Ireland, and England and Wales, focusing on recent legislative and judicial modifications to the historical common law requirement for early or recent complaint. Consideration is given to three legal mechanisms regulating the jury's access to information about delayed complaints: cross-examination of the complainant on the issue of delay, the admissibility of a late complaint for the prosecution, and judicial warnings indicating how, if at all, jurors should incorporate the fact of late complaint into their deliberations.

On November 17, 2000, the Assemblee Pleniere of the Cour de Cassation, the highest civil court in France, allowed Nicolas Perruche, a 17 year old suffering from congenital rubella syndrome, to recover damages against the doctor and the laboratory who had negligently advised his mother that she was not infected with rubella while she was pregnant with Nicolas. Suspecting that she was infected with rubella, Nicolas’s mother had told her doctor that she would terminate her pregnancy if the test proved positive. Negligently reassured twice that she was not infected, she continued with the pregnancy and Nicolas was born suffering the effects of the rubella which included severe developmental delay, deafness, partial blindness, and heart problems. The case falls under the rubric of ‘wrongful life’ as Nicolas could not have been born healthy, rather, he was claiming that without the negligence, he would not have been born at all and thus would not have experienced the suffering produced by his exposure to rubella. The decision caused an outcry in France and was widely condemned by the media, academics, groups representing the disabled, doctors and politicians. There was pressure on the government to request an opinion on the matter from the National Bioethics Advisory Committee (CCNE), which it eventually did. The resulting opinion condemned the decision in Perruche. Nevertheless, in three similar cases in July 2001, the Cour de Cassation confirmed its earlier jurisprudence (although recovery was denied on the ground that the women involved would not have been able to terminate their pregnancies had they been correctly informed of the results of their ultrasound examinations due to the operation of the abortion law). In November 2001 Perruche was re-affirmed by the Cour de Cassation. Despite this reinforcement of the position of the Cour de Cassation, there was some resistance by the lower courts. After much debate in the Assemblee Nationale and the Senat during 2001 and the early part of 2002, Perruche was finally overturned by a law dated March 4, 2002, which denies legal redress to one “who is harmed solely by being born”. In this article I proceed on the basis that the arguments around causation, harm and damages are masks for the real questions which surround Perruche. Many of the arguments against Perruche are based on what commentators view as the ‘necessary implications’ of the decision, which inspired the CCNE report and the new law. I examine these ‘implications’ as a series of questions, to determine whether these implications really are inherent in the court’s holding: -does the acceptance of wrongful life claims recognise a right not to be born? -if there is a right not to be born, is this inconsistent with the right to life? -if there is a right not to be born, does this necessarily imply a right to prenatal euthanasia? -does allowing wrongful life claims move us down a slippery slope towards the legalisation of euthanasia? -does allowing wrongful life claims foster a discriminatory society?

Procedures such as organ or tissue donation, elective ventilation and non-therapeutic research can be said to be against the medical interests of the participant. Competent adults can consent to procedures such as these that are against their medical interests, but when, if ever, should incompetent persons participate in such procedures? Legal approaches to decision-making in the area of the medical care of incompetent persons are generally based on respect for the patient's autonomy, or protection of her welfare, or some combination of the two. The limitations of these approaches become apparent upon examination of their application in this context. Societal interests are also used to justify the participation of the incompetent in procedures which are against their medical interests, for example, the societal interest in pursuing non-therapeutic research on incompetents in order to benefit future incompetents. These types of approaches are implicit in much current policy and reform proposals on non-therapeutic research, contributing to the disrespect for incompetent persons that is implicit in many research projects and much argument on the categorization of risks, and the repeated failure to consider the burdens imposed on incompetent persons in the interests of society.

Both proponents and opponents of the legalization of assisted suicide and euthanasia rely on the 'Dutch experience' of euthanasia when advancing their positions. Given its status as 'the only country in the world in which euthanasia, under specific circumstances, is legally permissible,'" the Dutch experience has been both vilified and romanticized. Euthanasia and Law in the Netherlands2 by John Griffiths, Alex Bood, and Heleen Weyers provides a valuable and exceptionally thorough and detailed exegesis of the history, law, and practice in the Netherlands. By setting out clearly the structure of the Dutch health care system and explaining the context in which the elderly and terminally ill are cared for, the authors provide much needed context against which their subsequent presentation of the history of legal change in the Netherlands, the present legal situation, and the evidence of past and current practice can be better understood. Two other recent books, Otlowski's Voluntary Euthanasia and the Common Law,3 and a collection of essays entitled Regulating How We Die4 also make thoughtful contributions to the debate over the use of the Dutch experience. This debate must begin by exploring the legal basis of euthanasia in the Netherlands in comparison with proposals for legalization

When research concludes, post-trial access (PTA) to the trial intervention or standard healthcare can be crucial for participants who are ill such as those in resource-poor countries with inadequate healthcare, British participants testing ‘last-chance drugs’ unavailable on the National Health Service (NHS) and underinsured US participants. Yet, many researchers are unclear about their obligations regarding the post-trial period, and many research ethics committees (RECs) do not know what to require of researchers. Consequences include participants who reasonably expect but lack PTA to the trial intervention, unplanned financial liabilities for NHS Trusts forced to fund this, negative press and potential to undermine public trust.1–3,i One reason for the lack of clarity is controversy over whether and when participants should have access, after the study, to the study intervention. At one extreme is the view that continued access should be ensured when the intervention has benefited the participant or when it has proven safe and effective for the participant population, irrespective of the cost and burden of ensuring continued access. At the other extreme is the view that continued access need never be provided so long as non-availability of the study intervention post-trial was adequately disclosed when participants were invited to participate.6 There is also disagreement about when poststudy access to the study intervention should be considered beneficial for participants. The spectrum ranges from the view that the intervention should be regarded as beneficial for a proposed use only after the …

Glanville Williams’ proposal to use the common law defence of necessity in cases of euthanasia has not been taken up. Williams saw the best chance for his proposal in cases where the doctor is faced with ‘the over¬whelming necessity of relieving unbearable suffering in the last extremity, where the patient consents to what is done and where in any event no span of useful life is left to him.’ But if the defence of necessity is used as the route to legalisation of euthanasia, successfully limiting its availability to patients who request it or to patients who suffer from a terminal illness is unlikely.Using a conflict of duties approach, following the Dutch model, the defence could be limited to doctors acting within the medical domain. In relation to the ‘medical exception’, Williams argued that ‘[c]ontrols exercised by the medical profession itself should be accepted as sufficient.’ A similar approach has been taken by the Dutch courts, in relation to the defence of necessity, in accepting that the boundaries of the duty to prevent suffering are determined by the existence of medical consensus.

Background: There is little guidance on the particular ethical concerns that research raises with a palliative care population. Aim: To present the process and outcomes of a workshop and consensus exercise on agreed best practice to accommodate ethical issues in research on palliative care. Design: Consultation workshop using the MORECare Transparent Expert Consultation approach. Prior to workshops, participants were sent overviews of ethical issues in palliative care. Following the workshop, nominal group techniques were used to produce candidate recommendations. These were rated online by participating experts. Descriptive statistics were used to analyse agreement and consensus. Narrative comments were collated. Setting/participants: Experts in ethical issues and palliative care research were invited to the Cicely Saunders Institute in London. They included senior researchers, service providers, commissioners, researchers, members of ethics committees and policy makers. Results: The workshop comprised 28 participants. A total of 16 recommendations were developed. There was high agreement on the issue of research participation and high to moderate agreement on applications to research ethics committees. The recommendations on obtaining and maintaining consent from patients and families were the most contentious. Nine recommendations were refined on the basis of the comments from the online consultation. Conclusions: The culture surrounding palliative care research needs to change by fostering collaborative approaches between all those involved in the research process. Changes to the legal framework governing the research process are required to enhance the ethical conduct of research in palliative care. The recommendations are relevant to all areas of research involving vulnerable adults.

Background Despite being a core business of medicine, end of life care (EoLC) is neglected. It is hampered by research that is difficult to conduct with no common standards. We aimed to develop evidence-based guidance on the best methods for the design and conduct of research on EoLC to further knowledge in the field. Methods The Methods Of Researching End of life Care (MORECare) project built on the Medical Research Council guidance on the development and evaluation of complex circumstances. We conducted systematic literature reviews, transparent expert consultations (TEC) involving consensus methods of nominal group and online voting, and stakeholder workshops to identify challenges and best practice in EoLC research, including: participation recruitment, ethics, attrition, integration of mixed methods, complex outcomes and economic evaluation. We synthesised all findings to develop a guidance statement on the best methods to research EoLC. Results We integrated data from three systematic reviews and five TECs with 133 online responses. We recommend research designs extending beyond randomised trials and encompassing mixed methods. Patients and families value participation in research, and consumer or patient collaboration in developing studies can resolve some ethical concerns. It is ethically desirable to offer patients and families the opportunity to participate in research. Outcome measures should be short, responsive to change and ideally used for both clinical practice and research. Attrition should be anticipated in studies and may affirm inclusion of the relevant population, but careful reporting is necessitated using a new classification. Eventual implementation requires consideration at all stages of the project. Conclusions The MORECare statement provides 36 best practice solutions for research evaluating services and treatments in EoLC to improve study quality and set the standard for future research. The statement may be used alongside existing statements and provides a first step in setting common, much needed standards for evaluative research in EoLC. These are relevant to those undertaking research, trainee researchers, research funders, ethical committees and editors. © 2013 Higginson et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

This article examines the reporting requirements in four jurisdictions in which assisted dying (euthanasia and/or assisted suicide) is legally regulated: the Netherlands, Belgium, Oregon and Switzerland. These jurisdictions were chosen because each had a substantial amount of empirical evidence available. We assess the available empirical evidence on reporting and what it tells us about the effectiveness of such requirements in encouraging reporting. We also look at the nature of requirements on regulatory bodies to refer cases not meeting the legal criteria to either prosecutorial or disciplinary authorities. We assess the evidence available on the outcomes of reported cases, including the rate of referral and the ultimate disposition of referred cases.

Evidence from jurisdictions that allow assisted dying is frequently used in the debate about assisted dying in the UK, since it provides important information about how assisted suicide and voluntary euthanasia work in practice. However, in order to interpret these data meaningfully, it is essential that they are understood in the context of the different legal and regulatory frameworks in operation in these countries. The Commission on Assisted Dying has commissioned this expert briefing paper in order to help unpick these complexities, and identify evidence for the effectiveness of the various legal safeguards that have been employed in jurisdictions that allow assisted dying. In the briefing paper the authors identify and explain the features of the legal regimes that regulate assisted dying in four target jurisdictions: the Netherlands, Belgium, Oregon and Switzerland.They explore the evidence for the effectiveness of individual safeguards in each of these regimes in turn. Then they evaluate the evidence for the effectiveness of each safeguard, drawing on a detailed examination of the evidence, and, where possible, make recommendations on how these regimes could implement and regulate assisted dying more effectively.

This chapter describes the law governing end-of-life decision-making in England and Wales. In relation to competent adults, the law seeks to protect their autonomy to make their own medical decisions. Euthanasia constitutes murder under English law. An individual convicted of murder faces a mandatory life sentence, although it is for the trial judge to set the minimum period which the defendant must serve before becoming eligible for parole. The report recommendes a number of considerations which should be taken into account by the drafters of any future bill to legalise assisted dying. These include requiring a psychiatric assessment so that those sufffering from psychological or psychiatric disorder can be screened out, and using 'unrelievable' or 'intractable' sufffering or distress as a criterion rather than 'unbearable' sufffering; ensuring real access to palliative care. Keywords:competent adults; end-of-life care; England; Euthanasia; palliative care; Wales

In 2002, Belgium became the second country to legalise euthanasia after the Netherlands. Three biannual reports have been published by the Federal Control and Evaluation Commission, the body which monitors the application of the law. This article explores how the Belgian law works and what is known about Belgian euthanasia practice both before and since legalisation.

Following the House of Lords’ decision in Purdy, the DPP issued an Interim Policy for prosecutors setting out the factors to be considered when deciding whether a prosecution in an assisted suicide case is in the public interest. This is a response to the subsequent public consultation on the Interim Policy. Key aspects of the policy are examined, including the person assisted’s condition, their engagement with medical care and their decision to commit suicide. The response also examines the DPP’s decision to prevent professional or organised amateur involvement and the focus on “reluctant” assistance.

This article considers whether two significant philosophical objections to autonomy-based legal approaches to decision-making for incompetent individuals could be accommodated by the law. These philosophical objections are known as the personal identity and welfare problems. The article first sets out the autonomy-based approaches and their objections. Next, the present legal position is briefly canvassed in a comparative vein. Finally, the article suggests how the personal identity and welfare problems might be accommodated were legislators minded to do so, by proposing specific statutory amendments to the recent English legislation on advance decisions and evaluating their viability, particularly in light of the European Convention on Human Rights.