P–353 When Parents and Minor Children Disagree about Fertility Preservation: A Scoping Review and Ethical Analysis

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
M Bayefsky ◽  
V Dorice ◽  
A Caplan ◽  
G Quinn

Abstract Study question Periodically, parents and children disagree about whether to pursue fertility preservation (FP). How should medical teams navigate these ethically complex situations? Summary answer Several considerations must be weighed, including the minor’s age, the burden of the proposed procedure, and whether the minor or parent seeks to decline FP. What is known already As reproductive technology advances, FP prior to gonadotoxic therapy has become the standard of care. Periodically, parents and children disagree about whether to pursue FP. To date, there is no clear guidance on how to navigate these difficult situations. Prior studies have demonstrated that adolescents undergoing gonadotoxic therapy want their views regarding FP to be taken into account, and also that most children and adolescents are comfortable with parental involvement in decision-making. However, transgender adolescents pursue FP at lower rates than adolescents with cancer, and more research is required to elucidate the unique needs and barriers of transgender youth. Study design, size, duration This study involves a scoping review and ethical analysis about parent-child disagreement regarding FP in minors. The review analyzes papers that either demonstrate that parent-child disagreement occurs, describe the preferences of parents or children regarding decision-making around FP, or provide recommendations that can be used to resolve parent-child conflicts. The ethical analysis weighs relevant rights and interests, including the child’s best interest, the right to an open future, the child’s autonomy, and parental autonomy. Participants/materials, setting, methods A search string was developed to identify all relevant published manuscripts on the topic of FP in minors, including studies on decision-making, family relations and ethical challenges. The search was run through several databases, abstracts were screened using Covidence, and data were extracted from full texts. Data abstracted from the review and existing literature on general medical decision-making for minors were used to construct an ethical framework for parent-child disagreements regarding FP in minors. Main results and the role of chance Published work directly on the topic of parent-child disputes regarding FP is limited, however a number of studies tangentially discuss parent-child disagreements and provide insight into the desires of parents and children regarding decision-making around FP. Studies suggest that adolescents desire to have their views taken into account, and a minority of adolescents believe their wishes alone should be followed. The age of the minor is a crucial factor, and some propose that as adolescents approach adulthood, their autonomy should increase. At the same time, in practice, legal and financial constraints often render parents the ultimate decision-makers. Our ethical analysis weighs competing considerations, including the child’s best interest, the right to an open future, the child’s autonomy, and parental autonomy. It concludes that who prevails should depend on contextual factors, including the minor’s age, the burden of the proposed procedure, and whether the minor or parent seeks to decline FP. There may also be special considerations for transgender adolescents, some of whom might have deeply personal reasons for pursuing or forgoing FP that are not well-understood by cisgender parents. Limitations, reasons for caution The scoping review captured a variety of results, including survey and interview studies, society guidelines, and ethical analyses. As such, we were unable to define a uniform quality metric. However, we aimed to be more rather than less inclusive because of the limited results directly pertaining to parent-child disagreements. Wider implications of the findings: This study provides a robust review of decision-making for FP in minors and offers an ethical framework for weighing countervailing considerations when parents and children disagree about whether to pursue FP. The conclusions can be used to inform guidance for clinicians presented with this challenging ethical dilemma. Trial registration number N/A

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
M Bayefsky ◽  
V Dorice ◽  
A Caplan ◽  
G Quinn

Abstract Study question Periodically, parents and children disagree about whether to pursue fertility preservation (FP). How should medical teams navigate these ethically complex situations? Summary answer Several considerations must be weighed, including the minor’s age, the burden of the proposed procedure, and whether the minor or parent seeks to decline FP. What is known already As reproductive technology advances, FP prior to gonadotoxic therapy has become the standard of care. Periodically, parents and children disagree about whether to pursue FP. To date, there is no clear guidance on how to navigate these difficult situations. Prior studies have demonstrated that adolescents undergoing gonadotoxic therapy want their views regarding FP to be taken into account, and also that most children and adolescents are comfortable with parental involvement in decision-making. However, transgender adolescents pursue FP at lower rates than adolescents with cancer, and more research is required to elucidate the unique needs and barriers of transgender youth. Study design, size, duration This study involves a scoping review and ethical analysis about parent-child disagreement regarding FP in minors. The review analyzes papers that either demonstrate that parent-child disagreement occurs, describe the preferences of parents or children regarding decision-making around FP, or provide recommendations that can be used to resolve parent-child conflicts. The ethical analysis weighs relevant rights and interests, including the child’s best interest, the right to an open future, the child’s autonomy, and parental autonomy. Participants/materials, setting, methods A search string was developed to identify all relevant published manuscripts on the topic of FP in minors, including studies on decision-making, family relations and ethical challenges. The search was run through several databases, abstracts were screened using Covidence, and data were extracted from full texts. Data abstracted from the review and existing literature on general medical decision-making for minors were used to construct an ethical framework for parent-child disagreements regarding FP in minors. Main results and the role of chance Published work directly on the topic of parent-child disputes regarding FP is limited, however a number of studies tangentially discuss parent-child disagreements and provide insight into the desires of parents and children regarding decision-making around FP. Studies suggest that adolescents desire to have their views taken into account, and a minority of adolescents believe their wishes alone should be followed. The age of the minor is a crucial factor, and some propose that as adolescents approach adulthood, their autonomy should increase. At the same time, in practice, legal and financial constraints often render parents the ultimate decision-makers. Our ethical analysis weighs competing considerations, including the child’s best interest, the right to an open future, the child’s autonomy, and parental autonomy. It concludes that who prevails should depend on contextual factors, including the minor’s age, the burden of the proposed procedure, and whether the minor or parent seeks to decline FP. There may also be special considerations for transgender adolescents, some of whom might have deeply personal reasons for pursuing or forgoing FP that are not well-understood by cisgender parents. Limitations, reasons for caution The scoping review captured a variety of results, including survey and interview studies, society guidelines, and ethical analyses. As such, we were unable to define a uniform quality metric. However, we aimed to be more rather than less inclusive because of the limited results directly pertaining to parent-child disagreements. Wider implications of the findings This study provides a robust review of decision-making for FP in minors and offers an ethical framework for weighing countervailing considerations when parents and children disagree about whether to pursue FP. The conclusions can be used to inform guidance for clinicians presented with this challenging ethical dilemma. Trial registration number N/A


2021 ◽  
pp. medethics-2020-106690
Author(s):  
Sarah Rosenwohl-Mack ◽  
Daniel Dohan ◽  
Thea Matthews ◽  
Jason Neil Batten ◽  
Elizabeth Dzeng

ObjectivesThe end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care.DesignWe conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis.SettingAcademic teaching hospitals in the United States and United Kingdom.ParticipantsWe interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be associated with individual ethics (stage of training, gender and national healthcare context) in order to elicit a diversity of ethical and experiential perspectives.ResultsSome trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient’s goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker.ConclusionsThis study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians’ ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care.


2018 ◽  
Vol 44 (9) ◽  
pp. 585-588 ◽  
Author(s):  
Rosemary Talbot Behmer Hansen ◽  
Kavita Shah Arora

Since USA constitutional precedent established in 1976, adolescents have increasingly been afforded the right to access contraception without first obtaining parental consent or authorisation. There is general agreement this ethically permissible. However, long-acting reversible contraception (LARC) methods have only recently been prescribed to the adolescent population. They are currently the most effective forms of contraception available and have high compliance and satisfaction rates. Yet unlike other contraceptives, LARCs are associated with special procedural risks because they must be inserted and removed by trained healthcare providers. It is unclear whether the unique invasive nature of LARC changes the traditional ethical calculus of permitting adolescent decision-making in the realm of contraception. To answer this question, we review the risk–benefit profile of adolescent LARC use. Traditional justifications for permitting adolescent contraception decision-making authority are then considered in the context of LARCs. Finally, analogous reasoning is used to evaluate potential differences between permitting adolescents to consent for LARC procedures versus for emergency and pregnancy termination procedures. Ultimately, we argue that the invasive nature of LARCs does not override adolescents’ unique and compelling need for safe and effective forms of contraception. In fact, LARCs may oftentimes be in the best interest of adolescent patients who wish to prevent unintended pregnancy. We advocate for the specific enumeration of adolescents’ ability to consent to both LARC insertion and removal procedures within state policies. Given the provider-dependent nature of LARCs and the stigma regarding adolescent sexuality, special political and procedural safeguards to protect adolescent autonomy are warranted.


Author(s):  
Joseph Kizza ◽  
Florence Migga Kizza

We closed the last chapter on a note about building a good ethical framework and its central role in securing the information infrastructure. A good ethical framework is essential for good decision making. Decision making is a staple for human beings. As we get more and more dependent on computer technology, we are slowly delegating the right to make rational decisions and the right to reason. In so doing, we are abdicating our responsibilities as human beings. Human autonomy, the human ability to make rational decisions, is the essence of life. If you cannot make personal decisions, based on the principle of duty of care, for your day-to-day living, you may as well be called the living dead. We are focusing on decision making in this chapter and how character education, that is ethics education, and codes of conduct help in creating an ethical framework essential for good decision making.


Author(s):  
Harry Brighouse ◽  
Adam Swift

This chapter focuses on the need to protect children from excessive parental influence, while respecting the interest that both parents and children have in the right kind of parent–child relationship. It challenges widespread views about the extent of parents' rights to influence their children's emerging views of the world and what matters in it. Children are separate people, with their own lives to lead, and the right to make, and act on, their own judgments about how they are to live those lives. They are not the property of their parents. And because they are not property, and yet parents are accorded such power over them, it is wrong for parents to treat them as vehicles for their own self-expression, or as means to the realization of their own views on controversial questions about how to live. The desire to extend oneself into the future, and to influence the shape that future takes, can be satisfied in other ways, without a parent relying on that authority over her children that is justified on other grounds.


2011 ◽  
Vol 07 (02) ◽  
pp. 101 ◽  
Author(s):  
Ann Gallagher ◽  
Craig Gannon ◽  
◽  

In everyday oncology practice, practitioners make a wide range of ethical decisions. Many of these decisions will seem straightforward, with those involved agreeing on the right course of action. Other decisions will be difficult, with conflicting perspectives regarding the wishes, needs and best interests of patients. This article suggests an ethical framework to facilitate the decision-making of practitioners in relation to challenging practice situations. We provide an anonymised ‘ethics case’ to examine one difficult decision made by a hospice team. The four-quadrant approach can be used to facilitate reflection and collaborative decision-making.


2021 ◽  
Vol 116 (3) ◽  
pp. e20-e21
Author(s):  
Michelle Bayefsky ◽  
Dorice Vieira ◽  
Arthur L. Caplan ◽  
Gwendolyn P. Quinn

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e038205
Author(s):  
Sarah Forberger ◽  
Frauke Wichmann ◽  
Chiara Nicoletta Nicoletta Comito

IntroductionPhysical inactivity and sedentary behaviour are associated with numerous health problems and increasing risks of premature morbidity and mortality. Workplace health promotion with a focus on increasing physical activity (PA) and reducing sedentary behaviour is of growing interest. The concept of choice architecture with the use of nudges is a promising approach to influence decision making regarding health behaviours. It can help to understand why people often fail to act in their best interest, to follow well-informed preferences or to achieve their set goals. Nudges, the way the choice is presented, can help to overcome these challenges by using the same habits, biases or boundaries to alter our decision-making in favour of the more preferred behaviour. Aims of the scoping review will be to analyse (a) to what extent the concept of choice architecture is used in workplace health promotion to promote PA and/or to reduce sedentary behaviour and (b) which instruments (nudges) are used to archive that.Methods and analysesMedline, PsychInfo, Web of Science and CINHAL will be searched from 2009 until June 2020. Applying a two-level screening process, title and abstracts will be screened according to a set of predetermined inclusion and exclusion criteria. Included articles will be screened a second time to determine the extent to which choice architecture has been used. Analyses for publication year, location, setting and target group will be provided. Interventions will be analysed presenting the instruments used, number of studies per instrument, combinations of instruments and alteration of the environment. Outcome measures and results will be reported as they occur.Ethics and disseminationDue to the nature of the scoping review, ethical concerns are minimal. No patient data will be included. Results are published in peer-review journals.


2001 ◽  
Vol 12 (5-6) ◽  
pp. 315-320

While the national authorities enjoy a wide margin of appreciation when assessing the necessity of taking a child into care, a stricter scrutiny is called for in respect of any further limitations, such as restrictions placed by those authorities on parental rights of access, and of any legal safeguards designed to secure an effective protection of the right of parents and children to respect for their family life. Whilst Article 8 contains no explicit procedural requirements, the decision-making process involved in measures of interference must be fair and such as to afford due respect to the interests safeguarded by Article 8.


2020 ◽  
pp. medethics-2019-106042
Author(s):  
Victoria Shepherd ◽  
Mark Sheehan ◽  
Kerenza Hood ◽  
Richard Griffith ◽  
Fiona Wood

Research involving adults who lack capacity to consent relies on proxy (or surrogate) decision making. Proxy decisions about participation are ethically complex, with a disparity between normative accounts and empirical evidence. Concerns about the accuracy of proxies’ decisions arise, in part, from the lack of an ethical framework which takes account of the complex and morally pluralistic world in which proxy decisions are situated. This qualitative study explored the experiences of family members who have acted as a research proxy in order to develop an understanding of the ethical concepts involved, and the interactions between those concepts. Proxies described a complex process of respecting the wishes and preferences of the person they represented, whist integrating preferences with what they viewed as being in the interests of the person. They aimed to make a decision that was ‘best’ for the person and protected them from harm; they also aimed to make the ‘right’ decision, viewed as being authentic to the person’s values and life. Decisions were underpinned by the relationship between the person and their proxy, in which both trust and trustworthiness were key. Proxies’ decisions, based both on respect for the person and the need to protect their interests, arose out of their dual role as both proxy and carer. The findings raise questions about accounts which rely on existing normative assumptions with a focus on accuracy and discrepancy, and which fail to take account of the requirement for proxies to make authentic decisions that arise out of their caring obligations.


Sign in / Sign up

Export Citation Format

Share Document