Abstract taken form the A Little Lifetime Foundation Guidelines for Professionals, written by Professionals
The death of a baby provokes many reactions in Health Care Professionals and others. Unfortunately, many of us have little or no training to help us deal with a situation, which can make us feel uncomfortable, uncertain and even threatened. Of course there are some professions that by their nature have training in this area of care and some of those professionals have given insightful information for the A Little Lifetime Foundation Guidelines for Professionals. However that does not take from the fact that this area of care is difficult and can be challenging. It has an impact on us and may affect us in a number of ways. The Guidelines may help us to understand why we find it difficult and more importantly to recognise that the sadness can challenge us and leave us feeling unsure. However, it is worth mentioning that we do play a vital role and important to remember we can and do make a difference at a very vulnerable time in parents and families lives.
Our child’s life and death becomes the basis by which we judge ourselves and those people who were part of that and what they did and said becomes the basis by which we judge them. How we cope and survive is based on what we are left with, what our memories are.
Good communication is fundamental to providing good patient care and is essential when delivering sad news. This can range from telling parents that their baby will not develop like other babies, telling parents that their baby will die before or after birth or telling them that their baby has died.
Breaking sad news is always difficult. Talking about death at the same time as birth is especially difficult, both for the professionals breaking the news of the death/impending death and for the expectant parents who were looking forward to the baby’s birth. Feelings of joy and fulfilment are in conflict with feelings of sadness and failure.
At 2pm after a painless labour, I gave birth to my wonderful daughter. This was the happiest moment of my life, despite being the saddest. Within seconds of her being born, I was holding my beautiful girl and was overcome with joy and torn apart with heartache all at the same time yet with a peace and feeling of absolute love.
Many professionals have received little or no training in delivering sad news, and may rely on observing more experienced colleagues doing so. Formal training in communication as part of undergraduates’ education and ongoing training in their professional lives would give health care workers the necessary skills to communicate effectively with their clients.
The professional’s own experience of bereavement can influence how they deal with death; it may also make them feel vulnerable or uncomfortable when talking about death and may affect how they communicate with parents. This is why reflective practice is very important.
It brought it all back to me when I saw their distress, when I saw their dead baby, I could hardly breathe but I knew I had to do my job.
It was one of the most difficult things I have ever had to do. Myself and my wife have just had a healthy baby boy, so I know the joy. Even though I could not have changed what happened, it was awful to have to change that joy to sadness by telling them their baby was dead.
Good communication will enable the professional to give information to the parents in such a way that they understand and remember what is being said. The parents will trust the professional and feel that they are involved in the decisions, which need to be made. Good communication will make a considerable difference to how parents manage the pending death and cope with their grief afterwards.
Leaflet for Teachers
On the 14th November 2007, Ms. Mary Harney T.D., Minister for Health & Children officially launched the ISANDS Guidelines for Professionals. The Coach House in Dublin Castle created the atmosphere for another memorable bookmark in the history of this organisation, the launch of the Professional Book. Minister Harney mentioned the importance of this publication and the role it will play at a very difficult time. Ms. Harney acknowledged the role of all the Professionals and others who contributed to the Book and ISANDS for their continued dedication to the needs of bereaved families.
Ron Smith-Murphy, Dr. Fin Breatnach, Consultant Paediatric Oncologist (retired) Minister Mary Harney, T.D., Minister for Health & Children
Dr. Fin Breatnach, retired Consultant Paediatric Oncologist in Our Lady’s Hospital for Sick Children, Crumlin was our guest speaker and spoke about the role good communication can play in this area or care. He said “in my opinion all Professionals should read this publication. If I had it over 40 years ago when I was starting out as a young doctor
it would have saved me getting it wrong when I did.”The launch was attended by many of the Professionals who contributed to the Book. We would like to thank Minister Harney, and Dr. Fin Breatnach for being with us and for their encouraging and supportive words about the book and the work of ISANDS.
A Little Lifetime Foundation (formerly ISANDS) Guidelines for Professionals.
Written by Professionals working with parents and families whose baby has died or is expected to die.
I began my career in medicine as a fresh faced medical student in 1966 and from then until I graduated and completed my professional training, firstly as a paediatrician and finally as a paediatric oncologist in 1981, I cannot recall receiving advice or guidance on a single occasion in relation to breaking sad news or communicating with patients or their parents.
At that time, one was supposed to absorb communication skills by observing senior doctors involved in this task. Unfortunately, none of these senior doctors had received any training in this difficult area either and, although many were naturally good communicators, most performed this task badly. Thankfully, there is now much greater awareness of the absolute necessity to communicate sad news in a caring and compassionate manner and of the serious negative consequences of performing this task badly. Despite this awareness, and particularly because of the explosion of medical knowledge over the last three decades which our students have to absorb, very little undergraduate time is allocated to this important subject.
I had an opportunity to review “Guidelines for Professionals” prior to its public launch and was enormously impressed by the depth of knowledge and helpful advice contained within its covers and was conscious of the tremendous impact which it could have in the day to day lives of professionals who, not only dealt with parents and families whose baby had died or was expected to die, but who faced any difficult communication challenge. It is quite an extraordinary publication and is unlike any I have previously encountered in the way that it offers such clear guidelines in relation to almost any possible clinical scenario. Before even beginning to deal with specific clinical situations, the publication acknowledges the difficulties encountered and the distress engendered in professionals through breaking sad news and offers insights and advice in coping with this extremely difficult task. Subsequent chapters offer specific advice to general practitioners, ultrasonographers, obstetricians, midwives/nurses, paediatricians, medical social workers, chaplains, physiotherapists, pathologists, morticians, funeral directors, public health workers, teachers and healthcare administrative staff. Advice is also offered to work colleagues of those who are bereaved. Extremely helpful guidance is offered to grieving parents and their families in many different scenarios. Given the diverse multicultural society in which we now live, welcome guidance and advice is offered in relation to the varied cultural and religious groups who now share this island.
Given the need for continuing education of professionals in this difficult task and the potential impact which this wonderful publication could have in this field, I immediately accepted the invitation of your National Chairperson, Ron Smith-Murphy to speak at the recent launch of this publication by Mrs Mary Harney, Minister for Health and Children. At the launch I acknowledged the tenacity and drive of Ron in ensuring that this publication saw the light of day. I extended my congratulations to each and every contributor, all of whom should feel rightly proud of their part in making this publication such a wonderful success. Since the launch, I was not in the least surprised to learn that many hundred copies of the book have already been requested by hospitals and institutions throughout the country. I would advise all who might face the unenviable task of breaking sad news to read this publication. It should be mandatory reading for all students of medicine, nursing and the allied healthcare professions. The information, advice and guidance contained within its pages will ensure that grieving parents and their families will be dealt with in a sympathetic and caring manner and will greatly assist healthcare workers cope with this difficult task.
Dr Fin Breatnach
Consultant Paediatric Oncologist.
ISANDS (A Little Lifetime Foundation) Guidelines for Professionals
In 1995 ISANDS (A Little Lifetime Foundation) embarked on a project of compiling a book for Professionals written by Professionals. It was a daunting task as there was little or nothing to base a book of this type on. We brought together various groups of Professionals and discussed the possibilities and what direction it might take.
And so it began…
We decided, rather than writing a book to cover the whole are of care and bereavements under one heading that we would break it up into different sections under relevant Professionals, ie Obstetricians, Paediatricians, Midwives/Nurses, G.Ps, Pastrol Care within the Hospital and the Community and Teachers.
Originally we met with various groups of Professionals to come up with a frame work to approach this sad but difficult subject. In open, frank and honest discussions we were able to recognise that for the Professionals, it is extremely difficult to break the sad news to any parent that their baby has died or is expected to die. In A Little Lifetime Foundation’s opinion, depending on how that is done can affect parents and has a bearing on how they will cope in the immediate time and afterwards. So that was the base line for this book- how do be marry those two areas -being able to communicate sad news and how that can affect everything else that happens. What helps and what makes a difference -A Little Lifetime Foundation have 25 years of experience on this bit. From our Parent Support Group meetings and Support Team Supervision meetings we were able to piece together important reoccurring patterns that ‘made a difference’ in a good or bad way. What needs to happen, what needs to be said, what needs to be done and HOW in all these situations. So everyone went away and wrote individual pieces on how they envisaged this would happen. Then each section was discussed in great detail with the various groups, then after hundreds of meetings, telephone conversations, letters and emails a draft document emerged for most sections !!(others were added later).
Now to be honest with time constraints for everyone involved it was hard to keep everyone motivated and interest waned from time to time. Then about two years ago I decided it was time to get back to the Professional Book. I re-grouped everyone and serious business was done!! It was full steam ahead regardless!! We also had to get some new people involved as some Professionals had retired or moved out of the this area of care. We also recognised new areas that needed to be included and found good people to help us with that. Areas in the book referring to actual practice (not suggested best practice) and laws ie. Coroners Post Mortem, Religious and Cultural Belief, Funeral Directors, Teachers were contributed by ie. Coroner, and various Cultural Groups, Teachers etc. Matters referring to anything medical was contributed by the various Professionals in their field of expertise.
Hours of conversations, typing and formatting were spent, a full document was produced before the Book went to print and sent out to over 300 Professionals and to various Schools and Colleges to include Royal College of Surgeons School of Nursing-Trinity College, School of Chaplain Clinical Pastoral Care, Archdiocese of Dublin, and St. Patrick’s Teacher Training College to name a few, for their comments, suggestions criticisms. We had almost a 100% response, which was incredible, which leads me to believe that the climate is now right for a publication such as this.
In general there was great feedback and encouragement about the draft and the necessity for a publication of this sort. Our thanks to everyone who took the time to read through the draft and make useful and insightful comments.
Adjustments were made to incorporate the suggestions where appropriate and necessary. It was beginning to take shape!! Now a few photos – we had the image for the cover, which says it all. Given to us some years ago by Kate Horgan a professional photographer to be used for a special project, well we saved it for the best impact it could have. It is a truly beautiful photograph of Kate holding her daughter Romy’s foot. It really say’s it all in a moment of time. Thank you to Kate for sharing her daughter with us and allowing us to use this incredible image to case this work. The book also includes other beautiful and meaningful photographs and images. The photographs were all set up and taken by Olive Ann Smith. They say what they need to say in a very sensitive way and our thanks to Olive Ann for seeing what we needed her to see so that she could make them happen, our thanks also to all the models! Visually this is a beautiful book and it makes a
difficult subject ‘user friendly’ and that is what we need it to be if it is to be effective.
This book breaks new ground in all areas. There are no other publications which have been written in this manner anywhere. This publication came about because the climate was right and it being the right time for everyone to be open about this topic. We are eternally grateful to all the Professionals and others that were interested in being part of this publication. It was an incredible journey of searching and finding. Thank you for your willingness to share your experience, expertise, insight with us in a very honest, frank and compassionate way. Time will tell if it makes a difference and I believe it will, what we need to remember is that we need to see this publication as a ‘work in progress’. In time more changes will come about or new ways of looking at this whole are of care will happen and this book, we hope will move with those changes.
Thank you to all the parents and families who were also part of this publication. You and your children’s short lives continues to make a difference.
For me it has created yet another bookmark in my life and my journey. I am so very proud of my part and role in it and very grateful to have brought the project to fruition.
National Chairperson, A Little Lifetime Foundation
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