Postmortem Consent Research Articles

A qualitative study exploring the process of postmortem brain tissue donation after suicide

Access to postmortem brain tissue can be valuable in refining knowledge on the pathophysiology and genetics of neuropsychiatric disorders. Obtaining postmortem consent for the donation after death by suicide can be difficult, as families may be overwhelmed by a violent and unexpected death. Examining the process of brain donation can inform on how the request can best be conducted. This is a qualitative study with in-depth interviews with forty-one people that were asked to consider brain donation—32 who had consented to donation and 9 who refused it. Data collection and analyses were carried out according to grounded theory. Five key themes emerged from data analysis: the context of the families, the invitation to talk to the research team, the experience with the request protocol, the participants’ assessment of the experience, and their participation in the study as an opportunity to heal. The participants indicated that a brain donation request that is respectful and tactful can be made without adding to the family distress brought on by suicide and pondering brain donation was seen as an opportunity to transform the meaning of the death and invest it with a modicum of solace for being able to contribute to research.

58 Neonatal Critical Care Communication Training Through Simulation: A Novel Regional Course for Neonatal Trainees

Challenging conversations occur frequently within neonatology The aim of the study was to design a communication skill simulation course for neonatal trainees.We collected feedback from 10 neonatal trainees and 15 consultants regionally. 53% of consultants and no trainees had received formal communication skills training. Lack of confidence was the highest discussing end of life, post-mortem consent, breaking bad news and conflict resolution. Further feedback from 21 parents and 45 staff locally highlighted lack of privacy, sensitivity, clarity, consistency and empathy as areas to develop. We first trialled a virtual simulation workshop on antenatal counselling during the COVID-19 pandemic. A pre-recorded scenario was played and debriefed live. Two candidates then took part in a scenario, in break-out rooms, followed by a smaller group debrief. A face-to-face course was then developed. The day, designed for eight candidates, began with an introduction session focussed on psychological safety followed by ‘trauma-informed communication’ by a clinical psychologist. The candidates were then split into two groups for scenarios. Each had the opportunity to lead a scenario. Faculty utilized role play with a standardized faculty ‘parent’ and block simulation with an actor. The Diamond Model was used for debrief. A workshop on ‘post-mortem consent’ and a talk from a parent about their neonatal journey were also included.Ten trainees attended the virtual workshop. Nine strongly agreed that the pre-recorded and 10 that the live sessions were useful. All strongly agreed/agreed that the virtual learning environment worked well, was safe and comfortable, the debriefs were structured and educational, and that attendees’ confidence in antenatal counselling had improved. Seven candidates attended the face-to-face course. All strongly agreed/agreed that the sessions were relevant to their practice and skills learnt were transferrable. Self-rated confidence improved in all communication themes. All candidates strongly agreed that the learning environment was safe and supportive. Candidates found both methods of simulation valuable, four preferred block simulation. All would recommend the course to their colleagues. We addressed a training gap by developing this course. Despite using different styles of teaching and adapting to virtual training during the COVID-19 pandemic, feedback was consistently positive suggesting that flexibility enhances learning. A similar course could be developed in other regions to continue to strengthen communication skills training.

"Why didn't we do it"? Reproductive loss and the problem of post-mortem consent.

Informed consent has been a much debated topic within the social sciences. It often forms a central feature of discussions on research in medical settings and in social research methods more broadly. While sympathetic to its' underlying principles of autonomy and choice, social scientists have tended to argue that these are seldom enacted in research or clinical practice. Rather, such principles are often circumscribed by wider social structures and by a culture of medical dominance. Drawing on data from a qualitative study on perinatal post-mortem, this paper explores informed consent in the emotionally charged clinical arena of perinatal pathology. Our in-depth analysis will provide fresh insight into post-mortem decision-making in the sensitive arena of baby loss. Our findings show how parents often found it difficult to give consent for post-mortem, and also for professionals to take consent from parents. It was also not uncommon for parents to experience regret over non-consent later on. One of our key findings, however, related to the sense of emotional and diagnostic closure often afforded by post-mortem when consent had been given. We conclude by arguing that, although we cannot resolve the tension between the principles of consent and their enactment in practice, we can develop a reflexive approach with which to navigate the process. In doing so, the paper contributes to wider sociological discussions on the meaning and use of informed consent in various settings beyond medical contexts.

PPO.37 Snapshot of Post-Mortem Examinations following Stillbirths at a University Hospital

IntroductionStillbirth incidence is 1 in 200 births. 2.6 million 3rd trimester stillbirths occur worldwide every year. Parents should be offered full post-mortem (PM) examination to elicit the cause of the...

Posthumous sperm utilization in men presenting for sperm banking: an analysis of patient choice

The question remains as to whether or not men would agree to posthumous sperm use for pregnancy initiation. Often, these individuals' lives are suddenly interrupted and prior consent is rarely given. Therefore, post-mortem retrieval or use of these spermatozoa remains controversial and the incidence of consent for post-mortem sperm use is not clear. Men who bank spermatozoa, however, represent a cohort that can be examined for frequency of consent for post-mortem sperm use. We performed a retrospective chart review for 364 patients presenting for sperm banking at a single institution from 2009 to 2011. Banked specimens represented either ejaculated or surgically retrieved spermatozoa. Demographic information was obtained for each patient and men were grouped by reason for sperm banking, relationship and paternity status, and consent for post-mortem sperm use. The frequency of post-mortem consent was determined within each group. Men were grouped based on reason for banking, including infertility ('Infertility') or malignancy prior to treatment ('Cancer'). Mean ± SD age of the infertility and cancer groups were 40.1 ± 9.9 years and 27.1 ± 9.6 years, respectively. Of the 364 men, 85.9% provided consent for post-mortem sperm use. In the infertility group, 87.4% of men consented. Of these, 92.9% men in a relationship and 62.5% single men consented. Regarding paternity status, 64.7% men with and 56.6% men without children consented. Within the cancer cohort, 83.8% men consented. Of men <18 years old and ≥18 years old, 65.2 and 85.8% consented, respectively. Relationship status yielded 93.2% men in relationships and 79.4% single men consenting. Paternity status in the cancer group yielded 95.8% with and 82.4% men without children consenting. In summary, most men presenting for sperm banking provided consent for post-mortem sperm use, irrespective of reason for banking. Men who are in a relationship or who are fathers were more likely to agree to post-mortem sperm use.

2289 POSTHUMOUS SPERM UTILIZATION IN MEN PRESENTING FOR SPERM BANKING: AN ANALYSIS OF PATIENT CHOICE

You have accessJournal of UrologyInfertility: Evaluation1 Apr 20122289 POSTHUMOUS SPERM UTILIZATION IN MEN PRESENTING FOR SPERM BANKING: AN ANALYSIS OF PATIENT CHOICE Alexander W. Pastuszak, Win Shun Lai, Tung-Chin Hsieh, and Larry I. Lipshultz Alexander W. PastuszakAlexander W. Pastuszak Houston, TX More articles by this author , Win Shun LaiWin Shun Lai Houston, TX More articles by this author , Tung-Chin HsiehTung-Chin Hsieh Houston, TX More articles by this author , and Larry I. LipshultzLarry I. Lipshultz Houston, TX More articles by this author View All Author Informationhttps://doi.org/10.1016/j.juro.2012.02.2468AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookTwitterLinked InEmail INTRODUCTION AND OBJECTIVES Postmortem use or retrieval of a man's sperm is controversial, a situation exacerbated by a lack of uniform guidelines. Pre-existing affirmative consent for postmortem retrieval or utilization of banked sperm is the clearest permission for posthumous sperm use, but is infrequently considered by or obtained from men for whom postmortem sperm harvesting is requested. Thus, the rate of affirmative consent for postmortem sperm retrieval or use is unclear. Men who bank sperm, however, present a cohort that can be queried for frequency of consent for postmortem sperm use. METHODS A retrospective review of medical records and consents for 361 patients presenting for sperm banking from 2009-2011 was performed. Banked specimens were either ejaculated or surgically obtained sperm. Demographic information was obtained for each patient, and men were grouped by reason for sperm banking, relationship status, prior children, and whether consent for postmortem use of sperm was given. The frequency of postmortem consent was determined within each group. RESULTS Men were grouped based on reason for banking, which included fertility problems (“Infertility”) and malignancy prior to treatment (“Cancer”). Mean±SD age of the infertility and cancer groups was 40.1±9.9 years and 27.1±9.6 years, respectively. Of the 361 men, 85.9% provided affirmative consent for postmortem sperm use (Table 1). In the infertility group 87.4% of men consented. Of these, 92.9% men in a relationship and 62.5% single men provided affirmative consent. Regarding paternity status, 64.7% men with children and 56.6% men without children consented to posthumous sperm use. Within the cancer cohort, 83.8% men consented. Of men <18 years old, 65.2% consented and 85.8% men ≥18 years old consented. Relationship status yielded 93.2% men in relationships and 79.4% single men consenting. Paternity status in the cancer group yielded 95.8% with and 82.4% of men without children consenting to postmortem sperm use. CONCLUSIONS The majority of men presenting for sperm banking gave an affirmative consent to postmortem use of their sperm, irrespective of their reason for banking. Postmortem utilization consent is affected by relationship and paternity status, as men who are in a relationship or fathers are more likely to agree to use of their sperm after their death. © 2012 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 187Issue 4SApril 2012Page: e924 Advertisement Copyright & Permissions© 2012 by American Urological Association Education and Research, Inc.MetricsAuthor Information Alexander W. Pastuszak Houston, TX More articles by this author Win Shun Lai Houston, TX More articles by this author Tung-Chin Hsieh Houston, TX More articles by this author Larry I. Lipshultz Houston, TX More articles by this author Expand All Advertisement Advertisement PDF downloadLoading ...

Perinatal Postmortems: What Is Important to Parents and How Do They Decide?

Falling consent rates for postmortems, regardless of age of death, have been widely reported in recent years. The aim of this study was to explore parental attitudes to, and decision-making about, a perinatal postmortem after termination for fetal abnormality, late miscarriage, or stillbirth. A prospective self-completion questionnaire was given to 35 women and their partners. The participants had experienced second or third trimester pregnancy loss in a single fetal medicine and delivery unit in the United Kingdom and were making decisions about having a postmortem. They were asked to complete a questionnaire about their attitudes to, and expectations of, a perinatal postmortem. Thirty-one questionnaires were received from parents of 17 babies (49% of those asked; 16 from mothers, 15 from fathers). Parents of nine babies (53%) said they would agree to a full postmortem, of three babies to a limited postmortem, and of four babies to an external examination only; one couple were undecided. The most important issues for the parents in this study that related to their decisions about a postmortem centered on the need for information, both for future planning and about what had happened. Moderately important issues related to altruism, which is, improving medical knowledge and helping other parents experiencing similar bereavement. Among the lowest scoring issues were potential barriers, such as concerns about cultural or religious acceptability of a postmortem, funeral delays, and what would happen to the baby's body. Bereaved parents who participated in this study, where postmortem consent rates were relatively high, thought that their need for knowledge eclipsed assumed barriers when deciding whether or not to have a postmortem for their baby.

Parental care pathway after late fetal loss and stillbirth: an audit of cases in sunderland royal hospital over a 2-year period

BackgroundRecently the RCOG published Green-Top Guideline ‘Late Intrauterine Fetal Death & Stillbirth’.1 The North East has the highest adjusted mortality for stillbirth,2 therefore an audit of the parental care pathway...

Parents' perspectives after stillbirth in the UK

BackgroundWhen a baby is stillborn, parents make difficult decisions about investigations. To offer the most effective and compassionate care, professionals must understand the range of parents' perspectives regarding investigations. Here...

Teaching clinicians how to take consent for a postmortem after late spontaneous abortion or stillbirth

In 2001 the Redfern Report was published into unauthorised removal and retention of children's organs at post mortem (PM) in an NHS hospital. In response, the Human Tissue Act was...

Intrauterine fetal death

Sadly, the death of a fetus may occur at any stage of a pregnancy, including during the labour process. A pregnancy loss will be devastating for the expectant parents. Obstetricians should be familiar with the management of intrauterine fetal death as prompt and appropriate counselling will aid the couple’s grief process. Understandably, couples wish to know the cause and chances of recurrence; thus, the full investigation of possible aetiological factors using a pragmatic approach will help in the postnatal counselling and management of future pregnancies. This review also explores the legal and ethical aspects of postmortem consent.

Ethical dilemmas in seeking consent for a postmortem examination

The past two years have seen considerable focus on postmortem practice. This largely follows two inquiry reports from the Bristol Royal Infirmary and Royal Liverpool Children's Hospital and the associated public reaction. In response, there have been numerous further publications which include guidelines and declarations of intent from the Department of Health; some important responses are still in draft form. Although it might be supposed that these changes will affect only pathologists, it is the process of consent that is the main focus of most recommendations. Paediatricians will need far more knowledge of the issues around the postmortem examination than formerly. There is still some uncertainty and debate as to the limits of discussions that may be needed before postmortem consent can be considered informed. This article will review aspects of usual postmortem practice and some of the issues raised by the various recent reports. Emphasis will be placed on the concerns of parents revealed over the past year or so.

"Bones of Contention". The donation of temporal bones for dissection after the organ-retention scandals.

It is essential for the Otologist in training to become familiar with the anatomy of the temporal bone. Generations of trainees have acquired this knowledge, together with basic surgical skills and techniques by dissection of cadaver temporal bones. In recent years, however, the supply of temporal bones for dissection has become a contentious issue in many British hospitals. Media and public attention has recently focused on issues surrounding the retention of human tissues following post-mortem examinations. In response, the Chief Medical Officer, the Royal College of Pathologists in the UK, the Faculty of Pathology of the Royal College of Physicians in Ireland, the British Medical Association, and other bodies have issued new guidelines that are of relevance to the Otolaryngologist. This paper gives details of some of the UK guidelines and where they can be accessed. A copy of the Royal College of Pathologists preferred post-mortem consent form is presented. The authors' experience in Manchester is discussed and details of an information leaflet on the subject of temporal bone donation are given. It is concluded that, with knowledge of the existing guidelines and good communication with other hospital colleagues, as well as families of the deceased, it is still possible legally to obtain temporal bones for dissection.