This project started when the education department at Princess Alice Hospice was commissioned to write a short book aimed at individuals and organisations that care for people who are approaching the end of their lives but do not have specialist palliative care needs.
The soon to be published book, entitled ‘A practical guide to end of life care’, is therefore aimed at a generalist audience; those caring for people in domiciliary or social care, for example, including healthcare assistants, hospice workers, volunteers, nurses or other carers.
The initial meeting with the commissioning editors established three key ideas which have formed the basis of the project:
Accessibility – the book needed to be accessible to attract a broad readership.
Practicality – due to the proposed readership and subject matter the book needed to have a strong practical focus.
Collaboration – all contributors were based at Princess Alice Hospice. The writing project was a means of engaging hospice staff with a wide range of clinical experience.
Keeping these three factors in mind was important as we designed the book’s content to cover everything from how to talk about the end of life and dying, to recognising and alleviating symptoms for people in discomfort or pain, to how to care for families.
The book also needed to offer strategies for how the reader could look after their own health and seek support if needed.
We didn’t want this to be a highly academic book, so it has been written in a way that looks appealing and is readable for a general population. While it is a textbook, the focus of the book is very much on practical information and how to access further resources.
Some of the contributors had written at degree/Masters level and, for some, the required style of writing proved challenging. Others had no experience but their contribution was as powerful and informative as those who were more comfortable with writing.
Each chapter stands on its own so readers can dip into the book, and there are a series of icons used throughout the book to point readers to links in other chapters, questions that they may wish to reflect on or additional resources – all aimed at making the book as accessible as possible.
The book is intended to be a practical guide for practical people, giving tips and guidance on ‘simple’ interventions that may help people approaching the end of their lives.
For example, cutting a straw to make it shorter for someone to suck through, or acknowledging the distress it may cause to have a commode next to your bed permanently in a room that was previously your sitting room and the impact this may have.
Three stories run throughout the book. The reader follows the experiences of Maria, Albert and Jenny, with each chapter offering short vignettes that reflect their different situations and experiences and their priorities for care at the end of their lives.
The writing of the book was very much a collaborative process, with myself coordinating as editor.
The project was greatly enhanced by a steering group, made up of four members of teaching and research staff from the Princess Alice education team. This group, which met regularly, offered great support to me and commented on issues such as content, layout and continuity of style.
Lengthy discussions within the group focused on the order of the chapters. For example, whether chapter one should be an introduction to end of life care or focus on personal attitudes to death and dying.
Each member of the steering group led on one or more chapters. They worked with clinical colleagues from a range of disciplines – inpatient and community nursing, social work, occupational therapy and medicine.
Clear structure and guidance on chapter content, together with a sample chapter, was given to each chapter author. Some colleagues chose to write, while others preferred to discuss their thoughts and have them written up by someone else – both approaches worked and enhanced the content.
Each chapter went through numerous versions, back and forth to the contributors to ensure they still had ownership of the content. Some editing was required but there was a degree of consistency.
This was a hospice-wide, but specifically an education team, endeavour. The administrative and learning resource centre staff within the team were excellent proof readers and were able to question – “why do you discuss that before that” or challenge jargon that had been used. The librarian efficiently and effectively guided us through process of indexing – a new experience!
Being approached to write a book on end of life care was an exciting yet slightly daunting prospect, and the experience has been a positive one.
As a team we are proud of the product and hope we have produced a book that will be well received. We are also proud of the process. It has been a team effort and we can honestly say we have enjoyed it.
Each chapter of the book concludes with a list of ‘top tips’. Having now completed the project our top tips for writing a book would be:
- Be confident about the target audience – this will reflect the style of writing and content.
- Work with a range of contributors. Some may choose to write but others will offer some very valuable insight through discussion.
- Offer contributors a clear structure – this will reduce the need for dramatic editing.
- Listen to the publishers.
- Set realistic but not too lengthy deadlines internally and externally and keep to them.
‘A practical guide to end of life care’ is due to be published next month by Open University Press, McGraw-Hill Education. You can find out more about the book on the publisher’s website and pre-order via Amazon.