This was published on Jane Davis’ Virtual Book Club on 12 April 2017.
‘Adds to the canon of literature of personal narratives in the experience of illness, death and bereavement…The simple reflections on complex areas of care resonate long after you have finished reading the book.’
Cancer Nursing Forum Newsletter
Royal College of Nursing
‘Some of the stories are sad, some are amusing, but all are inspiring. This book offers a snapshot of hospice care at its finest. I would recommend it to anyone with an interest in caring for people who are facing death, and anyone considering the option of a residential hospice program for themselves or a loved one.’
Professor Steven Claxton-Oldfield
Journal of Palliative Care
A few weeks back, I re-launched a book I wrote on end-of-life care ten years ago, Life in a Hospice. Some might well ask why one would write a book on this subject in the first place, much less re-launch it ten years later. In fact, the subject has fascinated me for years. Let me explain.
In 1990, when I was in my late 40s, I met a young man who had been living with AIDS for some years and, as there was no real treatment at that time, it was clear he did not have long to live. We had almost nothing in common – he was 20 years younger than me, I was a happily married woman and he a gay man, he was a natural leader of people and I was definitely not, he was a trained nurse and I was a quiet social researcher and writer. But for reasons that are always inexplicable, we quickly became close friends.
For the first time in my life, I began to think about how one should treat people who were close to dying. What should one say? What should one do? The more I thought about it, the more I decided that the only sensible course was to treat them as normally as possible. Give them friendship and anything that would assist a good life, but basically carry on as you would with anyone else.
It so happened that he was in the process of organising an international conference of people with AIDS and HIV. He had invited conference attendees to submit their stories and hoped to publish them, although he did not know how. Being a writer, I said I could help and, with his consent, applied for a small research grant to supplement the contributions with interviews. The result was a book, Wise Before their Time, in which people with AIDS and HIV talk about the complexities (and joys) of their lives. I managed to secure a Foreword by Ian McKellen. My friend lived to comment on the draft manuscript but died before it was published, aged just 32. The book sold quite well in both the US and UK, but is now out of print. It remains a good read about young people faced with death, but is no longer indicative of the lives of people with this disease.
Not long after publication of that book, I was invited to a hospice and was immediately taken with the calm and peace afforded to dying people there. I felt a longing to be part of that world and soon became a volunteer one day a week in a hospice near to my home. I loved the work of helping people in their last days or weeks. But it also occurred to me that it was a strange job for those who worked full time – going to work every day to watch people die. I had the idea of writing a book on the subject, also based on interviews, but it took some time to put the idea into practice. I suspected it would take a lot of effort to get the agreement of hospices to interview staff, to find the necessary funding and so forth. I put my attention to other projects.
Eventually, the lure of the book was too strong and, without any funding, I decided to proceed. The resulting interviews proved even more fascinating than I had expected. To me, the subject was never morbid or depressing, but incredibly uplifting to see the many ways in which nurses, health care assistants, doctors and so forth tried to make the last days of hospice patients as meaningful as possible.
Nurses were constantly trying to accede to the requests of the patients, whether helping an old lady to write the letters she said she wanted to write before she died or taking a patient outside to die under a tree when his time had come. A palliative care consultant explained how it was an intriguing puzzle to work out the appropriate medication to keep people pain free but nonetheless awake. And a very reflective cook gave a lot of thought to how to encourage patients to eat because, as he said, if they ate they would have the energy to say goodbye to their family and leave a good memory for them.
The resulting book had a Foreword by Tony Benn (who was a big supporter of hospices), a lot of good reviews and was Highly Commended by the British Medical Association. As the only higher award given by the BMA is Medical Book of the year, I was particularly pleased. The reviewer for the BMA wrote “An easy-to-read book, which will surprise many readers with its lightness of touch, humanity and refreshing tone. I would recommend it to anyone who has worries about their own or a relative’s care at the end of life.”
But after some reasonable sales in the first years, the book languished quietly out of site. Not only had the publishers set a very high price for the book from the outset (over £20), but when e-books began, the price was not very different. As they also did nothing to publicise the book’s existence, its lack of sales is no surprise. This made me incredibly sad, as it was my favourite book of all those I have written. I was even reluctant to recommend it to friends because of the high price.
So, ten years on, having gained experience of self-publishing through another book entirely (about being a grandmother), I decided to take the rights back from the original publishers and re-launch a second edition. This process proved surprisingly easy. There was no argument over rights. I undertook a small amount of research to update information about the number of hospices and what they do, commissioned a new cover and added the usual pages that tend to accompany a second edition, such as reviews of the first edition.
Importantly, I set a low price of £2.99 for the e-book. I have not yet decided whether to also produce a paperback, but will respond to demand if it is there.
If you cannot face reading a book that has a theme around dying, I cannot recommend this book. If, however, you are interested in seeing humanity at its best, you could find fewer better examples. It was my privilege to midwife the book into existence.
Life in a Hospice: reflections on caring for the dying is available as an e-book on Amazon. You can read more about it, see reviews and some sample chapters on the author’s website: www.lifeinahospice.com.
This post was initially published on Jane Davis Author’s blog (http://jane-davis.co.uk/2017/04/12/behind-book-story-behind-life-hospice-reflections-caring-dying/)