- Email: [email protected]
Managing Death and End of Life Decisions in Perinatal Medicine
Seminars in Fetal & Neonatal Medicine (2008) 13, 295
available at www.sciencedirect.com
journal homepage: www.elsevier.com/locate/siny
EDITORIAL
Managing Death and End of Life Decisions in Perinatal Medicine Unfortunately for those involved in high risk obstetrics and neonatal care, dealing with the death of a fetus or baby is a relatively common problem. Its impact on staff can be large but its impact on families can be immeasurable with life long implications. Therefore the importance of ‘‘getting the process right’’ i.e. the whole process from decision making right through to the funeral, has few equals across medicine. I have been involved with perinatal care in some form or another for over 30 years and in that time, despite the importance of the topic, the management of death has been, in my experience, rarely discussed compared to topics such as the optimal approach to nutrition or ventilation. Perhaps this is not surprising as it is a uniquely complex topic being affected by the knowledge, views, background and beliefs of both the clinical team and the family involved. There is also a societal influence in terms of what is right which changes over time but which is never written down. This societal influence not only varies over time but between countries and communities. Therefore, in terms of opening up this topic, where to begin? This was the debate that the Editorial Board had over many months before commissioning this edition. I should make clear at the outset that the edition is not a comprehensive insight into the topic; instead the intention has been to open up the topic in terms of the different influences that affect what we actually do. There are 2 articles that look at the legal framework that affects decision making around perinatal death: one based on UK law and one on US law. The objective with these articles was to use them as examples that identify the extent to which the law drives practice in this area and clearly there are significant differences between the UK and US. The next article and accompanying commentaries were written by senior obstetricians from around the world, all given the brief to describe how they would approach the management of a pregnancy with a non viable fetus or a fetus with a lethal congenital anomaly. Each reflects their personal views/practice in relation to the country and culture in which they work. This article and accompanying commentaries is then followed by its neonatal equivalent
with each author asked to describe their management of the baby dying on the neonatal unit. Both sets of commentaries are intended to reflect some of the cultural and religious influences that affect management in these circumstances but of course can not fully reflect the huge diversity of beliefs and practices that face clinicians. Two very different articles then follow both written by parents from the parental perspective. The first written on behalf of SANDS (the Stillbirth and Neonatal Death charity based in the UK) highlights parents’ views of good and bad practice in relation to the management of death and bereavement in perinatal care. The second very powerful article, by Harrison, emphasises the potential for clinicians to disempower parents when considering life and death choices for their baby during the perinatal period and offers some solutions. Finally the last two articles look at practice from a more evidence based standpoint. The first, from a North American team, describes existing accepted good practice, in terms of working with bereaved families, against an evidence base. The second, from a UK team, describes a systematic review of the existing evidence and highlights some of the very major gaps that exist and concludes with suggestions for improving the situation. There is no doubt this is a rather unusual edition and so a number of the contributions do not follow the typical format for the journal by including, for example, sections on future research directions. You will notice that a number of the sections overlap from time to time but you will also notice that interpretations of best practice when this occurs sometimes vary. I hope it is these areas of difference and those that you recognise in terms of your own practice that will stimulate debate and reviews of policy. Perhaps a few will even be stimulated to pick up the challenge of trying to build the evidence base in this hugely important area of perinatal practice.
1744-165X/$ - see front matter ª 2008 Elsevier Ltd. All rights reserved. doi:10.1016/j.siny.2008.03.010
David Field Department of Health Science, University of Leicester, 22-28 Princess Road West, Leicester LE1 6TP, UK E-mail address: [email protected]
available at www.sciencedirect.com
journal homepage: www.elsevier.com/locate/siny
EDITORIAL
Managing Death and End of Life Decisions in Perinatal Medicine Unfortunately for those involved in high risk obstetrics and neonatal care, dealing with the death of a fetus or baby is a relatively common problem. Its impact on staff can be large but its impact on families can be immeasurable with life long implications. Therefore the importance of ‘‘getting the process right’’ i.e. the whole process from decision making right through to the funeral, has few equals across medicine. I have been involved with perinatal care in some form or another for over 30 years and in that time, despite the importance of the topic, the management of death has been, in my experience, rarely discussed compared to topics such as the optimal approach to nutrition or ventilation. Perhaps this is not surprising as it is a uniquely complex topic being affected by the knowledge, views, background and beliefs of both the clinical team and the family involved. There is also a societal influence in terms of what is right which changes over time but which is never written down. This societal influence not only varies over time but between countries and communities. Therefore, in terms of opening up this topic, where to begin? This was the debate that the Editorial Board had over many months before commissioning this edition. I should make clear at the outset that the edition is not a comprehensive insight into the topic; instead the intention has been to open up the topic in terms of the different influences that affect what we actually do. There are 2 articles that look at the legal framework that affects decision making around perinatal death: one based on UK law and one on US law. The objective with these articles was to use them as examples that identify the extent to which the law drives practice in this area and clearly there are significant differences between the UK and US. The next article and accompanying commentaries were written by senior obstetricians from around the world, all given the brief to describe how they would approach the management of a pregnancy with a non viable fetus or a fetus with a lethal congenital anomaly. Each reflects their personal views/practice in relation to the country and culture in which they work. This article and accompanying commentaries is then followed by its neonatal equivalent
with each author asked to describe their management of the baby dying on the neonatal unit. Both sets of commentaries are intended to reflect some of the cultural and religious influences that affect management in these circumstances but of course can not fully reflect the huge diversity of beliefs and practices that face clinicians. Two very different articles then follow both written by parents from the parental perspective. The first written on behalf of SANDS (the Stillbirth and Neonatal Death charity based in the UK) highlights parents’ views of good and bad practice in relation to the management of death and bereavement in perinatal care. The second very powerful article, by Harrison, emphasises the potential for clinicians to disempower parents when considering life and death choices for their baby during the perinatal period and offers some solutions. Finally the last two articles look at practice from a more evidence based standpoint. The first, from a North American team, describes existing accepted good practice, in terms of working with bereaved families, against an evidence base. The second, from a UK team, describes a systematic review of the existing evidence and highlights some of the very major gaps that exist and concludes with suggestions for improving the situation. There is no doubt this is a rather unusual edition and so a number of the contributions do not follow the typical format for the journal by including, for example, sections on future research directions. You will notice that a number of the sections overlap from time to time but you will also notice that interpretations of best practice when this occurs sometimes vary. I hope it is these areas of difference and those that you recognise in terms of your own practice that will stimulate debate and reviews of policy. Perhaps a few will even be stimulated to pick up the challenge of trying to build the evidence base in this hugely important area of perinatal practice.
1744-165X/$ - see front matter ª 2008 Elsevier Ltd. All rights reserved. doi:10.1016/j.siny.2008.03.010
David Field Department of Health Science, University of Leicester, 22-28 Princess Road West, Leicester LE1 6TP, UK E-mail address: [email protected]