Medicine in the marketplace: clinician and patient views on commercial influences on assisted reproductive technology.

RESEARCH QUESTION: What are the views and experiences of patient and expert stakeholders on the positive and negative impacts of commercial influences on the provision of assisted reproductive technology (ART) services, and what are their suggestions for governance reforms? DESIGN: Semi-structured interviews were conducted with 31 ART industry experts from across Australia and New Zealand and 25 patients undergoing ART from metropolitan and regional Australia, between September 2020 and September 2021. Data were analysed using thematic analysis. RESULTS: Expert and patient participants considered that commercial forces influence the provision of ART in a number of positive ways - increasing sustainability, ensuring consistency in standards and providing patients with greater choice. Participants also considered commercial forces to have a number of negative impacts, including increased costs to government and patients; the excessive use of interventions that lack sufficient evidence to be considered part of standard care; inadequately informed consent (particularly with regard to financial information); and threats to patient-provider relationships and patient-centred care. Participants varied in whether they believed that professional self-regulation is sufficient. While recognizing the benefits of commercial investment in healthcare, many considered that regulatory reforms, as well as organizational cultural initiatives, are needed as means to ensure the primacy of patient well-being. CONCLUSIONS: The views expressed in this study should be systematically and critically examined to derive insights into how best to govern ART. These insights may also inform the design and delivery of other types of healthcare that are provided in the private sector.

Providing Lactation Care Following Stillbirth, Neonatal and Infant Death: Learning from Bereaved Parents.

Objective: The study aimed to identify how, from the perspective of bereaved parents, hospital-based health professionals can better meet their lactation care needs. Methods: In-depth interviews were conducted with 17 mothers and 7 fathers bereaved by stillbirth, neonatal death, or older infant death. Participants were recruited from three large hospitals in Eastern Australia including two with human milk banks. Qualitative thematic data analysis identified bereaved parents' lactation experiences, needs, and how parents wanted lactation care to be provided. Results: Participants experienced lactation after infant death as hard and challenging, while at the same time they received limited lactation care. The negative impact of lactation, however, could be mediated by anticipatory guidance, assistance to make sense of lactation, support to make decisions from available lactation and breast milk management options, and support with breast care for as long as required. Bereaved parents explained lactation care was best provided by health professionals they had come to know and trust rather than by a particular professional role. Care should be provided with compassion, in a manner respectful of individual circumstances, inclusive of partners, and supplemented by quality written information. When bereaved parents felt supported to manage their lactation in a manner consistent with their unique needs, lactation for some could have a positive impact on grief. Conclusion: Bereaved parents have demonstrated that comprehensive lactation care is critical to their health and well-being. Such care should be more fully incorporated into hospital-based bereavement care policies and practices.

Mothers, milk and mourning: The meanings of breast milk after loss of an infant.

Breast milk is a highly valued substance, immunologically and nutritionally, which also signifies maternal care and love for the infant. This intersection of biological and cultural qualities confers breast milk with complex meanings, which necessarily shape the experience of breastfeeding. Our research, investigating the experience of lactation after the loss of an infant, casts a novel light on these meanings. This article analyses the experience of 17 Australian bereaved mothers and 114 health professionals charged with their care. We find that while all the mothers found post-loss lactation emotionally painful, many also found redemptive meaning in their milk-production, as a bond with the lost child, as confirmation of their maternal competence and as a life giving substance that they could donate to other needy infants. These complex meanings and positive connotations were at odds with hospital cultures that regard post-loss lactation as valueless and best dealt with through medical suppression, despite the more complex insights of individual health-care professions.

Supporting Aboriginal and Torres Strait Islander Families to Stay Together from the Start (SAFeST Start): Urgent call to action to address crisis in infant removals.

Reducing the rate of over-representation of Aboriginal and Torres Strait Islander children in out-of-home care (OOHC) is a key Closing the Gap target committed to by all Australian governments. Current strategies are failing. The "gap" is widening, with the rate of Aboriginal and Torres Strait Islander children in OOHC at 30 June 2020 being 11 times that of non-Indigenous children. Approximately, one in five Aboriginal and Torres Strait Islander children entering OOHC each year are younger than one year. These figures represent compounding intergenerational trauma and institutional harm to Aboriginal and Torres Strait Islander families and communities. This article outlines systemic failures to address the needs of Aboriginal and Torres Strait Islander parents during pregnancy and following birth, causing cumulative harm and trauma to families, communities and cultures. Major reform to child and family notification and service systems, and significant investment to address this crisis, is urgently needed. The Family Matters Building Blocks and five elements of the Aboriginal and Torres Strait Islander Child Placement Principle (Prevention, Participation, Partnership, Placement and Connection) provide a transformative foundation to address historical, institutional, well-being and socioeconomic drivers of current catastrophic trajectories. The time for action is now.

Mapping Hospital-Based Lactation Care Provided to Bereaved Mothers: A Basis for Quality Improvement.

Objective: The study aimed to identify and map the factors that shape the delivery of hospital-based lactation care for bereaved mothers to inform quality improvement initiatives targeting hospital-based lactation care. Methods: Focus groups and interviews were conducted at three large hospitals in Australia with 113 health professionals including obstetricians, neonatologists, midwives, neonatal nurses, lactation consultants, social workers or pastoral care workers, Human Milk Bank (HMB) staff, and perinatal bereavement nurses. Thematic and interactional data analysis identified the nature, scope, and pattern of bereavement lactation care. Results: A bereaved lactation care pathway was generated from health professionals' reports. Bereaved lactation care, if provided, was limited to brief encounters aimed at facilitating lactation suppression. The type of lactation care offered, and any exploration of the variable biopsychosocial significance of lactation after infant death, was conditional on (i) availability of health professionals with suitable awareness, knowledge, capacity, confidence, and comfort to discuss lactation; (ii) hospital culture and mode of suppression primarily practiced; (iii) mother's breast milk being visible to hospital staff; (iv) mother expressing interest in expanded lactation management options; (v) availability of, and eligibility to, donate to a HMB; and (vi) support beyond the hospital setting being facilitated. Conclusion: Mothers should be presented with the full array of lactation management options available after stillbirth or infant death. Inclusion of evidence-based, biopsychosocial and patient-centered approaches to lactation care is urgently required in health professionals' bereavement training and in the policies of hospitals and HMBs.

Unconventional Practice, "Innovative" Interventions and the National Law.

This column explores a recent health profession disciplinary case which throws light on the problems of unconventional interventions by medical practitioners under the Health Practitioner Regulation National Law Act 2009 (Qld). The case involved "innovative" practices which were later found to have been scientifically unsupported, dangerous to patients and grounds for cancelling the health practitioner's registration. This column looks at common features of these kinds of cases in Australia and then examines recent attempts by the Medical Board of Australia to draft policy guidance around the use of unconventional practice in medicine. This column concludes with a number of changes to improve the effectiveness of the proposed policy.

The direct-to-consumer market for stem cell-based interventions in Australia: exploring the experiences of patients.

The prevalence of businesses selling autologous stem cell-based interventions to patients in Australia has raised serious concerns about how weaknesses in regulation have enabled the emergence of an industry that engages in aggressive marketing of unproven treatments to patients. Little is known about how patients experience this marketing and their subsequent interactions with practitioners. This paper reports results from 15 semistructured interviews with patients and carers, and also draws upon discussion conducted with patients, carers and family members (22 participants) in a workshop setting. We explore how Australian patients and carers understand and experience these interventions, and how their presumptions about the ethics of medical practice, and the regulatory environment in Australia have conditioned their preparedness to undergo unproven treatments.

Lactation after infant death: an analysis of Australian healthcare agencies' online health information.

Lactation is a potent signifier of maternal love and care commonly associated with early motherhood and infant survival. It is common, however, for bereaved mothers who have recently undergone miscarriage, stillbirth or infant death to produce breastmilk. Drawing on a critical feminist lens that seeks to understand how maternal subjectivities and lactation norms are constructed through public and reproductive health information, this article tests whether lactation management options after stillbirth and infant death are comprehensively covered in Australia's health organisations' online information. A qualitative directed content analysis was conducted to critique the information provided on 21 Australian websites. Information extracted from websites was compared to a 'best-practice' Lactation After Infant Death (AID) Framework developed by the research team for the review. We found a notable absence of comprehensive lactation management information targeted directly to bereaved mothers. Moreover, the most common lactation option presented for women without a living infant was lactation suppression. This dearth of appropriate and comprehensive lactation information curtails maternal subjectivies and diverse lactation practices and further isolates women dealing with the painful contradictions of lactation after loss.

The deadly business of an unregulated global stem cell industry.

In 2016, the Office of the State Coroner of New South Wales released its report into the death of an Australian woman, Sheila Drysdale, who had died from complications of an autologous stem cell procedure at a Sydney clinic. In this report, we argue that Mrs Drysdale's death was avoidable, and it was the result of a pernicious global problem of an industry exploiting regulatory systems to sell unproven and unjustified interventions with stem cells.

'Banking time': egg freezing and the negotiation of future fertility.

This paper examines the relatively recent practice of non-medical egg freezing, in which women bank their eggs for later use in conceiving a child. Non-medical egg freezing has only been available for about the last five years, as new vitrification techniques have made the success rates for actual conception more reliable than the earlier method of slow freezing. I draw on interviews with both clinicians and women who have banked their eggs to consider how this novel practice articulates with broader issues about the relationship between sexuality, reproduction and the political economy of household formation. Non-medical egg-freezing provides a technical solution to a number of different problems women face with regard to the elongation of the life course, the extension of education, the cost of household establishment and the iterative nature of relationship formation, thematised by the ubiquity of internet dating among the interviewees. I focus on the ways women used egg freezing to manage and reconcile different forms of time.

From altruism to monetisation: Australian women's ideas about money, ethics and research eggs.

We report the results of a qualitative study carried out in metropolitan Australia between 2009 and 2011 that canvassed the issue of payment for research oöcyte donation with participants drawn from three potential donor groups; fertility patients, reproductive donors and young, non-patient women. Research oöcytes are controversial tissues because women around the world have proved largely unwilling to donate them altruistically. In the ensuing international debate about procurement, the issue of money and its appropriate and inappropriate uses in tissue donation has taken centre stage. While there is now an abundance of expert commentary on this matter, there are almost no studies that probe this issue with potential donor populations. Our study asked the three groups of women about their understandings of altruistic, reimbursed, subsidised, compensated and paid donation for both reproductive and research eggs. We identify a resistance to the introduction of money into the sphere of reproductive donation, which the majority of respondents felt should remain an area of personalised gift relations. In the area of research donation we find a strong relationship between degrees of liquidity (the extent to which money is constrained or unconstrained) and a sense of ethical appropriateness. We also describe a culturally specific sense of fairness and equity among participants, associated with the relatively high public subsidisation of fertility treatment in Australia, which they used to benchmark their sense of appropriate and inappropriate uses of money. While the participant responses reflect the regulatory environment in Australia, particularly the absence of a US style market in reproductive oöcytes, they also make an important contribution to the global debate.

Informed consent and fresh egg donation for stem cell research.

This article develops a model of informed consent for fresh oöcyte donation for stem cell research, during in vitro fertilisation (IVF), by building on the importance of patients' embodied experience. Informed consent typically focuses on the disclosure of material information. Yet this approach does not incorporate the embodied knowledge that patients acquire through lived experience. Drawing on interview data from 35 patients and health professionals in an IVF clinic in Australia, our study demonstrates the uncertainty of IVF treatment, and the tendency for patients to overestimate their chances of success prior to the experience of treatment. Once in active treatment, however, patients identify their oöcytes as both precious and precarious. We argue that it is necessary to formally include embodied experience as a source of knowledge in informed consent procedures, both for gratuitous donation and for egg-sharing regimes. We recommend that at least one full cycle of IVF be completed before approaching women to divert eggs away from their own fertility treatment.

Egg donation for stem cell research: ideas of surplus and deficit in Australian IVF patients' and reproductive donors' accounts.

We report on a study undertaken with an Australian in vitro fertilisation (IVF) clinic to understand IVF patients' and reproductive donors' perceptions of oocyte (egg) donation for stem cell research. Such perspectives are particularly valuable because IVF patients form a major recruitment group for oocyte donation for research, and because patients and donors have direct experience of the medical procedures involved. Similar studies of oocyte donation have been carried out elsewhere in the world, but to date very little social science research has been published that reports on donation for research, as distinct from donation for reproduction. Our respondents expressed a distinct unwillingness to donate viable oocytes for stem cell research. In our analysis we consider a number of factors that explain this unwillingness. These include the labour of oocyte production, the inscrutability of oocytes (the lack of a test to identify degrees of fertility) and the extent to which the oocytes' fertility sets the parameters for all downstream reproductive possibilities. We draw on the science studies literature on affordances to make sense of the social intractability of oocytes, and compare them with the respondents' much greater willingness to donate frozen embryos for human embryonic stem cells research.

Blood and bioidentity: ideas about self, boundaries and risk among blood donors and people living with hepatitis C.

Clinical medicine and biotechnology increasingly utilise and transform human bodily tissues in novel ways. Today more and more tissues--blood, whole organs, ova, embryos, sperm, skin, bone, heart valves, cellular material, bone marrow and corneas--can be transferred between donors and recipients. Hence more and more people in developed nations have the experience of giving a fragment of their body to another, or receiving such a fragment as part of some kind of therapy. These systems for the circulation of tissues raise the question of what we have termed 'bioidentity'. Bioidentity describes our common-sense understanding of our bodies as 'ours', as both supporting and being included in our social and subjective identities. Within this framework, how are we to understand the status of detachable bodily fragments like blood, ova or organs? As parts of our bodies do they retain a trace of our identity after donation, or are they detachable things? What is our relationship, if any, to the patient who receives our tissues as part of their treatment? This paper investigates the specific case of blood transfusion and donation. It draws upon in depth interviews with 55 people who have specific experience with blood. They either have hepatitis C (are HCV+) acquired by transfusion or intravenous drug use, or have donated blood or received a blood transfusion but are free of hepatitis C (are HCV-). We analyse this material according to the themes--Donated Blood as 'Self', Blood as Alienable, Blood as Communal Substance, and Contaminated Gifts and the Blood of Strangers. We find that, generally speaking the HCV+ and HCV- groups share very similar ideas about blood donation and transfusion. For a minority of both groups, blood was understood as a decisive site of self irrespective of location, but for the remainder donated blood was either ambiguous with regard to identity, a shared substance, or not considered to have any lingering relationship to the self once given. However both groups regarded blood as strongly imbued with 'risk identity'. In particular the HCV+ interviewees regarded their blood as a dangerous personal attribute, one that they must be careful to withhold from circulation, whereas the blood donors felt obliged to donate their blood precisely because they considered it clean and risk free.