Penney Lewis

Evaluating complex interventions in End of Life Care: the MORECare Statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews

BackgroundDespite 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.MethodsThe 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.ResultsWe 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.ConclusionsThe 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.

The empirical slippery slope from voluntary to non-voluntary euthanasia.

This article examines the evidence for the empirical argument that there is a slippery slope between the legalization of voluntary and non-voluntary euthanasia. The main source of evidence in relation to this argument comes from the Netherlands. The argument is only effective against legalization if it is legalization which causes the slippery slope. Moreover, it is only effective if it is used comparatively-to show that the slope is more slippery in jurisdictions which have legalized voluntary euthanasia than it is in jurisdictions which have not done so. Both of these elements are examined comparatively.

MORECare research methods guidance development: Recommendations for ethical issues in palliative and end-of-life care research

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.

Assisted Dying and Legal Change

1. Introduction 2. Rights to Assisted Dying 3. The Effects of Rights 4. Duties and Necessity 5. Compassion 6. Comparing the Mechanisms of Legal Change 7. The Slippery Slope

Considerations for experts in assessing the credibility of recovered memories of child sexual abuse: the importance of maintaining a case-specific focus

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.

Delayed prosecution for childhood sexual abuse

1. Introduction 2. Limits on Prosecution 3. Abuse of Process 4. Prohibition 5. Delay in Complaint 6. Corroboration and Forensic Disadvantage 7. Recovered Memory 8. Multiple Allegations 9. Conclusion

Adherence to the request criterion in jurisdictions where assisted dying is lawful? A review of the criteria and evidence in the Netherlands, Belgium, Oregon, and Switzerland.

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.

Family over rules? an ethical analysis of allowing families to overrule donation intentions

Abstract 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 donors 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 patients 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.

Ethical, legal, and societal issues and recommendations for controlled and uncontrolled DCD

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.

Euthanasia in Belgium five years after legalisation.

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.