Palliative and end of life care for children and young people: home, hospice and hospital

What was it like?

Just occasionally a professional book comes along that draws you in and holds your attention the more you read it. This timely and sensitively written text from Anne Grinyer is a worthy addition to the small but growing range of literature in this emotive but hugely important and often neglected area of palliative care.

The book is based around the results of two research studies, which looks at firstly the palliative and end of life care options for teenagers and young adults and lastly an evaluation of children’s hospice services. The interview approaches were broadly similar in each, but it’s the comparative analysis thatis the broad thrust of the book, which is highly informative and insightful. 

The chapters are laid out in a user-friendly format with a clear font and liberal use of subheadings to break up the text with the references in a master list at the end of the book, rather than at the end of each chapter. For those wanting a quick synopsis of the content the “Lessons for Best Practice” section ending each chapter is really useful and helps draw the content together.

What were the highlights? 

I particularly liked the strong emphasis on the needs of teenagers and young adults who seem to fall into a ”black hole” in the care system no matter what the environment. The point is made that little is offered either by the mainstream NHS and social services or indeed charitable hospices, which is geared to their needs and I applaud the authors’ courage in challenging the status quo.

Strengths & weaknesses:

As the title suggests the focus in on care in the home, the hospice and the hospital with much of the discussion surrounding the lived experience of families by the extensive use of vignettes to highlight the complex issues involved in such care. It would be easy for this approach to become over emotive, but the author avoids this by the careful use of research in the discussion to offer a pragmatic analysis that informs and points the way forward for future service development.

Who should read it?

It is largely aimed at community children’s nurses, specialist palliative care teams, staff in children’s hospices, paediatric social workers and paediatric nurses. I suggest it will also prove to be useful reading for hospice trustees, student nurses, commissioners of services and families of children affected by life limiting illness. To reach such a wide-ranging audience demands a writing style that is fluent, articulate and unpretentious, alongside a strong evidence base to support the discussion, something the author has achieved with ease.

Overall the authors’ extensive knowledge and experience in the field enliven this book with a well balanced critical appraisal of the current issues, a touch of humility and an impassioned plea for better understanding and services for young people. It’s a worthy addition to anyone’s collection and deserves to succeed.