Lynn Gillam

• PhD
• University of Melbourne

Background Clinical ethics reasoning is one of the unique contributions of clinical ethicists to healthcare, and is common to all models of clinical ethics support and methods of case analysis. Despite being a fundamental aspect of clinical ethics practice, the phenomenon of clinical ethics reasoning is not well understood. There are no formal defi...

Tensões éticas fazem parte da prática cotidiana da pesquisa, de todos os tipos. Como os pesquisadores lidam com problemas éticos que surgem na prática de suas pesquisas, e há estruturas conceituais nas quais eles podem se basear para auxiliá-los? Este artigo examina a relação entre reflexividade e ética em pesquisa. Ele se concentra no que constitu...

The use of puberty blockers and gender‐affirming hormones by transgender adolescents is the subject of an ongoing public debate. In this paper, we address one central ethical aspect of the debate – the question of what sort of benefits these treatments provide and how to evaluate the significance of these benefits in relation to risks. We argue tha...

Aims To explore the experiences, and perceptions of nurses who are told to withhold clinical information from children diagnosed with serious illnesses. Design An interpretative qualitative phenomenological design was used for the study. Sampling was purposive and data were collected using semi‐structured interviews from nurses working in a paedia...

Background Nurses play an integral role in the care of children hospitalised with a serious illness. Although information about diagnostics, treatments, and prognosis are generally conveyed to parents and caregivers of seriously ill children by physicians, nurses spend a significant amount of time at the child’s bedside and have an acknowledged rol...

In clinical ethics consultations, clinical ethicists bring moral reasoning to bear on concrete and complex clinical ethical problems by undertaking ethical deliberation in collaboration with others. The reasoning process involves identifying and clarifying ethical values which are at stake or contested, and guiding clinicians, and sometimes patient...

Objective: To examine i) how ethical frameworks can be used in concrete cases of parent–doctors’ disagreements for extremely preterm infants born in the grey zone to guide such difficult decision-making; and ii) what challenges stakeholders may encounter in using these frameworks. Design: We did a case analysis of a concrete case of parent–doctor d...

Background/objectives Shared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However, little detail is known about this preparatory process. This study aims to explore how paediatricians p...

Clinical simulation offers an alternative to naturalistic inquiry of phenomena in health care that are ethically and logistically difficult for researchers to access firsthand. However, whether it is a similar experience, and the extent simulation elicits data that is meaningful for the real-world phenomenon under investigation is unknown. To addre...

Simulation is a well-established experiential educational tool in health care, which allows clinicians to learn and practise skills via a replication of reality. However, its use as a research tool is novel and emerging. As we designed a phenomenological study of communication practices around paediatric advance care planning, we came to the view t...

Objectives: To explore the perceptions of parents caring for a child with a life-limiting condition on approaches to communication used by clinicians engaging in routine serious illness communication. Methods: An exploratory qualitative design was used, employing a thematic analysis of data derived through semi-structured interviews which presen...

Background No previous study has provided evidence for the scope and frequency of ethical dilemmas for paediatric nurses. It is essential to understand this to optimise patient care and tailor ethics support for nurses. Research aim The aim of this study was to explore the scope of nurses’ ethical dilemmas in a paediatric hospital and their engage...

OBJECTIVE: To describe how paediatricians undertake the process of end-of-life decision-making for a child with a life-limiting condition who is unable to participate in decision-making for themselves. DESIGN: A qualitative phenomenological study using semistructured interviews based around a clinical vignette matched to the clinical practice of in...

Developmentally, adolescence sits in transition between childhood and adulthood. Involving adolescents in their medical decision-making prompts important and complex ethical questions. Originating in the UK, the concept of Gillick competence is a dominant framework for navigating adolescent medical decision-making from legal, ethical and clinical p...

The unexpected birth of a critically ill baby raises many ethical questions for neonatologists. Some of these are obviously ethical questions, about whether to attempt resuscitation, and, if the baby is resuscitated and survives, whether to continue life sustaining interventions. Other ethical decisions are more related to what to say rather than w...

Objective: This qualitative study examined ethical challenges reported by healthcare professionals (HCPs) working in a large Australian pediatric oncology center during a period of strict COVID-19 restrictions. Methods: We conducted semi-structured interviews with 21 HCPs who provided pediatric cancer care during the pandemic in 2020, during str...

The clinical utility of rapid genome sequencing (rGS) in critically unwell infants has been consistently demonstrated, and there are calls for rGS to be implemented as a first-line test in the NICU. A diagnosis from rGS can enable rapid initiation of precision treatment, making it potentially lifesaving. However, in many patients rGS leads to the d...

Aim: This study aimed to understand why adolescent girls and young women (AGYW) would seek consultation with a health professional about genital appearance concerns and/or request female genital cosmetic surgery (FGCS). The information derived from these participant interviews can inform clinical practice and help clinicians better navigate consul...

Background: Moral distress is prevalent within the neonatal intensive care unit (NICU) and can negatively affect clinicians. Studies have evaluated the causes of moral distress and interventions to mitigate its harmful effects. However, the effects of participating in moral distress studies have not been evaluated. Objective: To evaluate the imp...

Background For children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasi...

Objectives Advance care planning (ACP) helps families and paediatricians prepare and plan for end-of-life decision-making. However, there remains inconsistency in its practice with the limited literature describing what this preparation involves, and whether paediatricians recognise a difference between the process of ACP and its outcomes, such as...

How should clinicians respond when parents will not allow their child to know the truth about their medical condition and treatment? There is wide consensus amongst clinicians and ethicists that children should be given “honest” information delivered in a developmentally appropriate manner. However, the basis in ethical theory is not clear, especia...

Inductive content analysis (ICA), or qualitative content analysis, is a method of qualitative data analysis well-suited to use in health-related research, particularly in relatively small-scale, non-complex research done by health professionals undertaking research-focused degree courses. For those new to qualitative research, the methodological li...

Children with severe neurological impairment (such as cerebral palsy or congenital anomalies) are living longer, although medically complex, lives. Feeding intolerance is an increasing problem that is emerging as a new end-of-life issue. Long-term parenteral nutrition (LTPN) is technically feasible in these children. However, clinicians are concern...

Introduction: Simulations, which represent reality, are effective in pediatric healthcare communication skills education and training. Parents are increasingly engaged in simulation development, particularly for authentic character development, to help achieve greater psychological fidelity. For simulated encounters related to a child's end-of-lif...

Being a healthcare professional in both paediatric and adult hospitals will mean being exposed to human tragedies and stressful events involving conflict, misunderstanding, and moral distress. There are a number of different structured approaches to reflection and discussion designed to support healthcare professionals process and make sense of the...

Advances in perinatal care bring with them ethical challenges and difficult questions. When should we provide life-sustaining interventions, and who should decide? Particularly at the edges of viability, some clinicians may feel required to provide a level of care that they believe is not in the patient's interests, resulting in moral distress. Thi...

Background and objectives: To longitudinally examine the nature of moral distress (MoD) experienced by clinicians caring for extremely low gestational age neonates. Methods: Neonatologists, medical trainees, and nurses were surveyed at regular intervals on their experience of MoD and their preferred level of care in relation to 99 neonates born...

Parents of children with serious illness must find a tolerable way of living each day, while caring for their child and making decisions about their treatments. Sometimes clinicians worry that parents do not understand the seriousness of their child's illness, including possible death. This can lead to tension, disagreement and even conflict. Such...

Background The emerging role of genomically guided precision medicine in pediatric cancer care presents significant clinical, practical, and ethical challenges. We investigated the factors that influence decision-making in genomic medicine from the perspective of different stakeholders in the context of difficult-to-treat childhood cancer. Methods...

Children’s fear of a procedure, including the anaesthetic is a common issue that operating theatre staff face. This fear is generally mitigated by pre‐aesthetic preparation and information sharing. Last minute refusal of a procedure creates unique difficulties for the anaesthetist and proceduralist. Refusal for a procedure raises issues of whether...

During the debates about the legalization of Voluntary Assisted Dying (VAD) in Victoria, Australia, the presence of anti-VAD health professionals in the medical community and reported high rates of conscientious objection (CO) to VAD suggested access may be limited. Most empirical research on CO has been conducted in the sexual and reproductive hea...

There is an increasing interest in using simulation in qualitative research outside evaluation of educational-based activities. To examine how data from simulation has been generated and used in qualitative research, we conducted a scoping review of research topics and data collection and analysis processes reported in qualitative research using si...

A notable feature of the COVID-19 pandemic is that children are less at risk of becoming infected or, if infected, less likely to become seriously unwell, so ethical discussions have consequently focused on the adult healthcare setting. However, despite a lower risk of children becoming acutely ill with COVID-19, there nevertheless may be significa...

Hospitals are places where patients are unwell, where patients and their families may be upset, confused, frustrated, in pain, and vulnerable. The likelihood of these experiences and emotions manifesting in anger and aggressive behaviour is high. In this paper, we describe the involvement of a clinical ethics service responding to a request to disc...

We discuss the central ethical conundrum for clinicians working with young people like Phoenix: namely, how to respect, value and defer to a person’s own account of their identity and what is needed for their well-being, while staying open to the possibility that such an account may reflect a work in progress. This conundrum thus relates both to wh...

The COVID-19 pandemic has highlighted the risks that can be involved in healthcare work. In this paper, we explore the issue of staff safety in clinical work using the example of personal protective equipment (PPE) in the COVID-19 crisis. We articulate some of the specific ethical challenges around PPE currently being faced by front-line clinicians...

Aim: This paper describes the use of the single patient therapy plan (SPTP). The SPTP has been designed to assess the efficacy at an individual level of a commercially available cannabinoid product, cannabidiol, in reducing seizure frequency in paediatric patients with intractable epilepsy. Methods: The SPTP is a randomised, double-blind, placeb...

In this article, we analyse the novel case of Phoenix, a non-binary adult requesting ongoing puberty suppression (OPS) to permanently prevent the development of secondary sex characteristics, as a way of affirming their gender identity. We argue that (1) the aim of OPS is consistent with the proper goals of medicine to promote well-being, and there...

The Fifth World Congress on Family Law and Children’s Rights (“Halifax Resolutions” (2009) from http://www.lawrights.asn.au/index.php?option=com_content&view=article&id=76&Itemid=109) adopted a resolution endorsing a set of ethical guidelines for the management of infants and children with DSD (2009), based on the ethical principles developed by ou...

Aim: Parents' role as end-of-life decision-makers for their child has become largely accepted Western health-care practice. How parents subsequently view and live with the end-of-life decision (ELD) they made has not been extensively examined. To help extend understanding of this phenomenon and contribute to care, as a part of a study on end-of-li...

Many transgender and gender-diverse people have a gender identity that does not conform to the binary categories of male or female; they have a nonbinary gender. Some nonbinary individuals are most comfortable with an androgynous gender expression. For those who have not yet fully progressed through puberty, puberty suppression with gonadotrophin-r...

Aim: To examine paediatric deaths following withdrawal or withholding of medical treatment (WWMT) from a hospital-wide perspective and identify changes over a 10 year period. Methods: A retrospective review of medical records was conducted for all paediatric inpatient deaths at the Royal Children's Hospital, Melbourne from April 2015 to April 20...

Models for clinical ethics case consultation often make reference to ‘balancing’ or ‘weighing’ moral considerations, without further detail. In this paper, we investigate balancing in clinical ethics case consultation. We suggest that, while clinical ethics services cannot resolve ongoing deep philosophical debates about the nature of ethical reaso...

Purpose With over 80% of paediatric and adolescent cancer patients surviving into adulthood, quality-of-life issues such as future fertility are increasingly important. However, little is known about regret around decisions to pursue or forgo fertility preservation (FP). We investigated the risk of decision regret in families involved in making a F...

Aims To conduct empirically informed, ethical analysis of cases of healthcare crowdfunding in children. Methods 20 sequential Australian and 20 UK cases on ‘GoFundMe’ were compiled. The following data were recorded: demographics, diagnosis, goals of the fundraising campaign, the campaign duration, number of updates, the total sum raised and whethe...

Planning for the preterm birth of a fetus with known anomalies can raise complex ethical issues. This is particularly true of multiple pregnancies, where the interests of each fetus and of the expectant parent(s) can conflict. In these complex situations, parental wishes and values can also conflict with the recommendations of treating clinicians....

STUDY QUESTION Does an informed group of citizens endorse the clinical use of mitochondrial donation in a country where this is not currently permitted? SUMMARY ANSWER After hearing balanced expert evidence and having opportunity for deliberation, a majority (11/14) of participants in a citizens’ jury believed that children should be able to be bo...

Some parents request elective appearance-altering facial surgery for their children for cosmetic, psychological and/or social reasons. These operations have attracted controversy in the bioethics literature. They are also the subject of professional guidance documents internationally, which leave much to individual practitioners' discretion. Despit...

Aim To develop a neonatal intervention score to describe the clinical trajectory of a neonate throughout their neonatal intensive care unit (NICU) admission. Methods The Neonatal Intervention Score (NIS) was developed by modifying the Neonatal Therapeutic Intervention Scoring System (NTISS) to reflect illness severity, dependency on life‐sustainin...

Background In Victoria, Australia, the law regulating abortion was reformed in 2008, and a clause (‘Section 8’) was introduced requiring doctors with a conscientious objection to abortion to refer women to another provider. This study reports the views of abortion experts on the operation of Section 8 of the Abortion Law Reform Act in Victoria. Me...

Mobile health apps and wearable devices are widely available. They provide an opportunity to monitor and track health metrics continuously, and in real time, thus enabling diagnosis and chronic condition management to take place outside a hospital setting. The digital data produced can be shared with healthcare providers, researchers, and on social...

Background: Future infertility is a significant concern for survivors of childhood and adolescent cancer. Children and adolescents may have the opportunity to undergo fertility preservation (FP) procedures (which preserve gonadal tissue or gametes for future use) prior to the cancer treatment. However, the decision is very complex, as it is often...

Labiaplasty is a form of genital surgery to reduce large or protruding labia minora. Internationally, the rates of this surgery among women and girls is increasing and is viewed as a worrying trend. Currently, the main clinical strategy is to reassure adolescents that they are normal by talking about the variation of labia size and appearance and s...

Families of children with diabetes increasingly obtain health information from a variety of sources. Doctor patient relationships have accordingly become more fluid and dynamic with input from other parties. These outside parties include representatives from the diabetes health care industry‐ industry third parties (ITP's). This review is an explor...

When parents ask doctors not to disclose certain information to a child, doctors are challenged to articulate ethical reasons for giving information to children. This paper maps out the professional and legal landscape in which information‐giving to children is taking place and identifies the key ethical arguments that have been made for disclosure...

Alderson critiques our recent book on the basis that it overlooks children’s own views about their medical treatment. In this response, we discuss the complexity of the paediatric clinical context and the value of diverse approaches to investigating paediatric ethics. Our book focuses on a specific problem: entrenched disagreements between doctors...

Purpose: Fertility preservation discussions with pediatric and adolescent cancer patients can be difficult for clinicians. This study describes the acceptability of a fertility clinician decision support system (CDSS). Methods: A cross-sectional study of clinicians at The Royal Children's Hospital, Melbourne. Participants were trained on CDSS pu...

Relationships of trust between research participants and researchers are often considered paramount to successful research; however, we know little about participants’ perspectives. We examined whom research participants trusted when taking part in research. Using a qualitative approach, we interviewed 36 research participants, including eight Indi...

BACKGROUND Future infertility is a significant concern for survivors of childhood and adolescent cancer. Children and adolescents may have the opportunity to undergo fertility preservation (FP) procedures (which preserve gonadal tissue or gametes for future use) prior to the cancer treatment. However, the decision is very complex, as it is often ma...

When healthcare professionals feel constrained from acting in a patient’s best interests, moral distress ensues. The resulting negative sequelae of burnout, poor retention rates, and ultimately poor patient care are well recognized across healthcare providers. Yet an appreciation of how particular disciplines, including physicians, come to be “cons...

Purpose: Fertility preservation (FP) discussions in children with cancer presents unique challenges due to ethical considerations, lack of models-of-care, and the triadic nature of discussions. This study evaluated a fertility toolkit for clinicians involved in FP discussions with pediatric, adolescent, and young adult patients and parents. Mater...

Objectives Typically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors’ and parents’ roles. Less attention has focussed on what happens after an end-of-life decision is made; that is, decision enactment and its outcome. This study explored the views and experiences of bereaved parents in e...

Child co-research has become popular in social research involving children. This is attributed to the emphasis on children’s rights and is seen as a way to promote children’s agency and voice. It is a way of putting into practice the philosophy, common amongst childhood researchers, that children are experts on childhood. In this article, we discus...

Background Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care. Objective To explore clinical experiences, perspectives and perceptions of moral distress in neonatology. Design An anonymous questionnaire was distributed to medical and nursing prov...

The neonatal intensive care unit is recognized as a stressful environment; the nature of caring for sick babies with uncertain outcomes and the need to make difficult decisions results in a work place where moral distress is prevalent. According to the prevailing definition, moral distress occurs when the provider believes that what is "done" is no...

Book reviewed by Andrew Thompson

Background: Clinical research is increasingly being undertaken in primary care settings. This development offers both benefits and challenges. The ethical challenges of occupying the roles of both clinician and researcher may be accentuated in primary care settings, where relationships are longer lasting and medical conditions are less acute. This...

Some parents of children with cystic fibrosis (CF) do not adhere to treatments recommended by the CF team. This can be a challenging issue for CF clinicians and can create conflict between the parents and treating team. Both parents and treating team believe they are acting in the best interests of the child, but do not share a common opinion as to...

In the context of a child being diagnosed with a genetic condition, reports from both parents and health professionals suggest many genetic health professionals are reluctant to provide carrier testing for unaffected siblings, despite the lack of evidence of harm. We propose that genetic health professionals’ understandings of why parents want to h...

Parents and medical staff usually agree on the management of preterm labour at borderline viability, when there is a relatively high risk of long-term neurodevelopmental problems in survivors. If delivery is imminent and parents and staff cannot agree on the best management, however, who should decide what will happen when the baby is delivered? Sh...

Background Communication with parents about end-of-life care and decisions is a difficult and sensitive process. The objective of the present study was to ascertain clinicians’ views on the acceptability and usefulness of a handbook and web-based resource (Caring Decisions) that was designed as an aid for parents facing end-of-life decisions for th...

Ethical concerns about therapeutic misconception have been raised since the early 1980s. This concept was originally described as research participants’ assumptions that decisions relating to research interventions are made on the basis of their individual therapeutic needs. The term has since been used to refer to a range of ‘misunderstandings’ th...

Trust in research is important but not well understood. We examine the ways that researchers understand and practice trust in research. Using a qualitative research design, we interviewed 19 researchers, including eight researchers involved in Australian Indigenous research. The project design focused on sensitive research including research involv...

Is Female Genital Cosmetic Surgery for an adolescent with Body Dysmorphic Disorder ever ethically justified? Cosmetic genital surgery (specifically labioplasty) for adolescent girls is one of the most ethically controversial forms of cosmetic surgery and Body Dysmorphic Disorder is typically seen as a contraindication for cosmetic surgery. Two key...

Despite continuing advances in treatment, cancer continues to be a major cause of suffering and death, and so symptom management and end of life care will continue to be an important aspect of cancer care for the foreseeable future. An integral part of providing this care, for all clinicians involved, is understanding and managing the ethical dimen...

Predictive genetic testing for a neurodegenerative condition in one individual in a family may have implications for other family members, in that it can reveal their genetic status. Herein a complex clinical case is explored where the testing wish of one family member was in direct conflict to that of another. The son of a person at 50% risk of an...

When a child is identified with a genetic condition, some parents want to know the carrier status of their other children. There has been little exploration of why parents want this information. To address this question, semi-structured interviews were conducted with parents of 32 children with cystic fibrosis, haemophilia, and Duchenne muscular dy...

Purpose: International guidelines generally recommend delaying genetic carrier testing in children until the child reaches the age of majority or is mature enough to be involved in the decision. Several studies have shown that carrier testing of children does occur in some instances, particularly in siblings of a child affected with a genetic cond...

Improvements in cancer diagnosis and treatment in patients of a reproductive age have led to significant improvements in survival rates; however, a patient's fertility can be affected by both cancer and its treatment. As survival rates improve, there is an expectation by clinicians and patients that patient's reproductive potential should be consid...

Objective To review the literature on moral distress experienced by nursing and medical professionals within neonatal intensive care units (NICUs) and paediatric intensive care units (PICUs). Design Pubmed, EBSCO (Academic Search Complete, CINAHL and Medline) and Scopus were searched using the terms neonat*, infant*, pediatric*, prematur* or preter...