The Case of Billy Best: 25 Years Later.

Billy Best was diagnosed with Hodgkin lymphoma in 1994 at age 16 and became well-known when he ran away from home to avoid receiving further chemotherapy. His story became national news when, with the support of his adopted parents, he returned home and opted to use complementary and alternative medicine (CAM) instead of standard chemotherapy and radiation for his cancer treatment. Now 25 years since Billy Best entered the public eye, his story is one that is frequently referenced in pediatrics, bioethics, and other related fields. Here, the authors examine the evolution of various features of this case, including treatment of Hodgkin lymphoma, the interplay between medicine and the media, the role of CAM in pediatric care, navigating entrenched disagreements and how best to integrate adolescents into health care decision-making, and the role of narrative in medical practice. The authors explore the unique role of each of these facets of Billy Best's case, describing how each has or has not changed in the quarter century since that time amid the changing landscape of pediatric health care. Ultimately, although many advances have occurred since Billy Best's time, significant work remains. Additional effort will be required in the future to optimize communication, improve treatment toxicities from Hodgkin lymphoma without decreasing survival, integrate the voice and perspective of adolescents into their treatment decisions, and navigate the roles of CAM and the media in pediatric health care.

Ethical and religious dilemmas of modern reproductive choices and the Islamic perspective.

Advances in the field of Assisted Reproductive Technologies (ART) are constantly evolving, starting from Artificial Insemination (AI) and in-vitro fertilization (IVF), to the current state of the art technologies that enable embryo biopsy for Pre-implantation Genetic Testing (PGT). The future includes gene mapping and DNA replacement technologies with the potential for the so-called "designer babies." In other words, shortly, a modern couple may be in a position to decide how to procreate and with whom; which pregnancy to keep and which one to terminate depending on their prior knowledge about the pregnancy and the available choices. This article addresses the moral, ethical, legal and religious dilemmas as a result of these technological advances in the field of ART and how these new challenges are addressed theologically in the Islamic world where the state law is strongly influenced by religion. This article sets out to discuss relevant issues and dilemmas but does not seek to prioritize or promote any opinion or view over any other religion/sect, ethical or legal opinion or view.

Making decisions about breast reconstruction: A systematic review of patient-reported factors influencing choice.

PURPOSE: Many studies have explored women's reasons for choosing or declining a particular type of breast reconstruction (BR) following mastectomy for breast cancer. This systematic review synthesises women's reasons for choosing a range of BR options, including no BR, in different settings and across time. METHODS: Thirteen databases were systematically searched, with 30 studies (4269 participants), meeting the selection criteria. Information on study aim and time frame, participation rate, design/methods, limitations/bias, reasons and conclusions, as well as participant clinical and demographic information, was reported. An overall quality score was generated for each study. Reasons were grouped into eight domains. RESULTS: While study methodology and results were heterogeneous, all reported reasons were covered by the eight domains: Feeling/looking normal; Feeling/looking good; Being practical; Influence of others; Relationship expectations; Fear; Timing; and Unnecessary. We found a strong consistency in reasons across studies, ranging from 52% of relevant publications citing relationship expectations as a reason for choosing BR, up to 91% citing fear as a reason for delaying or declining BR. Major thematic findings were a lack of adequate information about BR, lack of genuine choice for women and additional access limitations due to health system barriers. CONCLUSIONS: Understanding women's reasons for wanting or not wanting BR can assist clinicians to help women make choices most aligned with their individual values and needs. Our thematic findings have equity implications and illustrate the need for surgeons to discuss all clinically appropriate BR options with mastectomy patients, even if some options are not available locally.

"My choice": breast cancer patients recollect doctors fertility preservation recommendations.

PURPOSE: The increasing rates of early-onset breast cancer (BC) and of woman survival render fertility preservation (FP) a pressing issue. We probe women's experiences of FP counseling and decision making, aiming to identify emergent counseling patterns. METHODS: Semi-structured interviews were conducted with 16 women, who had been diagnosed with BC at the ages of 24-38, 1 to 5 years prior to the interview. BC survivors were recruited through posts in online fora, consented to participate, and were invited to tell their FP stories. The transcribed interviews were analyzed thematically, using the phenomenological paradigm. FINDINGS: Doctors' FP recommendations belong into three categories: (a) direct clinical rationale-grounding recommendations in the woman's clinical condition by direct reference to tumor characteristics and prognosis, (b) indirect clinical rationale-reference to the woman's clinical condition by outlining a pressing time-frame, and (c) sociodemographic rationale-focus on the woman's family status. Women's responses revealed primarily detachment and compliance alongside initiative and proactivism. CONCLUSION AND IMPLICATIONS FOR CANCER SURVIVORS: Beyond its contribution to women's future ability to conceive, FP may constitute an arena of personal autonomy and a coping resource for young BC patients. Raising awareness to this significance may sensitize healthcare providers to the role that FP may play in the moment of cancer diagnosis in adding, alongside sickness and prognosis, a focus on family future planning. As such, FP may affect women's quality of life and even survival.

Phase-dependent justification: the role of personal responsibility in fair healthcare.

The main aim of this paper is to examine the fairness of different ways of holding people responsible for healthcare-related choices. Our focus is on conceptualisations of responsibility that involve blame and sanctions, and our analytical approach is to provide a systematic discussion based on interrelated and successive health-related, lifestyle choices of an individual. We assess the already established risk-sharing, backward-looking and forward-looking views on responsibility according to a variety of standard objections. In conclusion, all of the proposed views on holding people responsible for their lifestyle choices are subjected to reasonable critiques, although the risk-sharing view fare considerably better than the others overall considered. With our analytical approach, we are able to identify how basic conditions for responsibility ascription alter along a time axis. Repeated relapses with respect to healthcare associated with persistent, unhealthy lifestyle choices, call for distinct attention. In such situations, contextualised reasoning and transparent policy-making, rather than opaque clinical judgements, are required as steps towards fair allocation of healthcare resources.

Expanding the Use of Continuous Sedation Until Death: Moving Beyond the Last Resort for the Terminally Ill.

As currently practiced, the use of continuous sedation until death (CSD) is controlled by clinicians in a way that may deny patients a key choice in controlling their dying process. Ethical guidelines from the American Medical Association and the American Academy of Pain Medicine describe CSD as a "last resort," and a position statement from the American Academy of Hospice and Palliative Medicine describe it as "an intervention reserved for extreme situations." Accordingly, patients must progress to unremitting pain and suffering and reach a last-resort stage before the option to pursue CSD is considered. Alternatively, we present and defend a new guideline in which decisionally capable, terminally ill patients who have a life expectancy of less than six months may request CSD before being subjected to the refractory suffering of a treatment of "last resort."

Home birth of infants with congenital anomalies: a case study and ethical analysis of careproviders' obligations.

This article presents the case of a mother who is planning a home birth with a midwife with the shared knowledge that the fetus would have congenital anomalies of unknown severity. We discuss the right of women to choose home birth, the caregivers' duty to the infant, and the careproviders' dilemma about how to respond to this request. The ethical duties of concerned careproviders are explored and reframed as professional obligations to the mother, infant, and their profession at large. Recommendations are offered based on this case in order to clarify the considerations surrounding not only home birth of a fetus with anticipated anomalies, but also to address the ethical obligations of caregivers who must navigate the unique tension between respecting the mother's wishes and the duty of the careproviders to deliver optimal care.

Mandatory cancer risk warnings on alcoholic beverages: what are the ethical issues?

The link between alcohol consumption and cancer is well established, but public awareness of the risk remains low. Mandated warning labels have been suggested as a way of ensuring "informed choice" about alcohol consumption. In this article we explore various ethical issues that may arise in connection with cancer warning labels on alcoholic beverages; in particular we highlight the potentially questionable autonomy of alcohol consumption decisions (either with or without labels) and consider the implications if the autonomy of drinking behavior is substantially compromised. Our discussion demonstrates the need for the various ethical issues to be considered and addressed in any decision to mandate cancer warning labels.

Give cancer patients a choice about fertility.

Surveys by Breast Cancer Care suggest that younger women with breast cancer can be denied the chance to preserve their fertility. Treatments, including chemotherapy, can cause infertility, so healthcare professionals should discuss options such as egg freezing beforehand.

Rawlsian Justice and Palliative Care.

Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcare. We argue that one prominent approach, the Rawlsian approach developed by Norman Daniels, is unable to provide such reasons and such care. This is because of a central feature in Daniels' account, namely that care should be provided to restore people's opportunities. Daniels' view is both unable to provide pain relief to those who need it as a supplement to treatment and, without justice-based reasons to provide palliative care to those whose opportunities cannot be restored. We conclude that this makes Daniels' framework much less attractive.

It's time to change the default for tobacco treatment.

The World Health Organization estimates that 1 billion people will die from tobacco-related illnesses this century. Most health-care providers, however, fail to treat tobacco dependence. This may be due in part to the treatment 'default'. Guidelines in many countries recommend that health-care providers: (i) ask patients if they are 'ready' to quit using tobacco; and (ii) provide treatment only to those who state they are ready to quit. For other health conditions--diabetes, hypertension, asthma and even substance abuse--treatment guidelines direct health-care providers to identify the health condition and initiate evidence-based treatment. As with any medical care, patients are free to decline--they can 'opt out' from care. If patients do nothing, they will receive care. For tobacco users, however, the treatment default is often that they have to 'opt in' to treatment. This drastically limits the reach of tobacco treatment because, at any given encounter, a minority of tobacco users will say they are ready to quit. As a result, few are offered treatment. It is time to change the treatment default for tobacco dependence. All tobacco users should be offered evidence-based care, without being screened for readiness as a precondition for receiving treatment. Opt-out care for tobacco dependence is warranted because changing defaults has been shown to change choices and outcomes for numerous health behaviors, and most tobacco users want to quit; there is little to no evidence supporting the utility of assessing readiness to quit, and an opt-out default is more ethical.

Contentious Conversations: Using Mediation Techniques in Difficult Clinical Ethics Consultations.

Mediators utilize a wide range of skills in the process of facilitating dialogue and resolving conflicts. Among the most useful techniques for clinical ethics consultants (CECs)-and surely the least discussed-are those employed in acrimonious, hostile conversations between stakeholders. In the context of clinical ethics disputes or other bedside conflicts, good mediation skills can reverse the negative interactions that have prevented the creation of workable treatment plans or ethical consensus. This essay lays out the central framework mediators use in distinguishing positions from interests and describes a set of strategies for managing contentious ethics consultations or working with "difficult" patients, families, or patient-careprovider interactions.