Category Archives: Life in a Hospice

Talking about how I came to write and re-launch Life in a Hospice: AlzAuthors website

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Some years ago, I was taken to a hospice by a friend, who happened to be doing an errand. I immediately felt that this was the kind of tranquil place where I wanted to spend time. Soon after, I began to volunteer at a local hospice every Saturday afternoon. I did so for four years.

This experience had a strong impact on me, lasting even to the present day. Death – as with birth – is a very special time and I felt privileged to help people, even in small ways, in their last days.

As I was a writer, I thought the views and experiences of hospice staff would make a fascinating book. I had developed a technique, based on the kind of research I did for a living, of creating books formed around the direct views of people acquired by long and intimate interviews. Like a television documentary, it allows people to talk directly to the reader.

I undertook 31 interviews in two hospices with a whole range of staff – nurses, doctors, chaplains, managers and even a very reflective cook. They talked about the many ways in which they tried to make patients’ last days peaceful and meaningful, about the impact of such work on their own lives and, most importantly, about what they gained personally from such work. Like myself, they often used the word ‘privileged’ for being with people at the end of their lives.

The resulting book, Life in a Hospice, was, in my humble view, the best I had ever written – and I anticipated that many people would be keen to read it. It was very well reviewed, there was an article in the Times newspaper about it and it was even Highly Commended by the British Medical Association, despite not being a ‘medical’ book at all. All this was hugely pleasing.

But, alas, the breadth of the readership was very disappointing. The book was bought by many hospices and others working in end of life care, but it never took off with the general public. I quickly realized there were two reasons. First, most people do not have my fascination with end-of-life care and, indeed, avoid thinking about anything to do with death. And, second, the book was much too expensive, the price having been set by its medical publisher

I couldn’t do anything to overcome the first problem, but I took back the rights to the book and re-launched it as a very inexpensive e-book ($3.75), so that anyone who wants to read it will not be deterred by the price. It is again receiving some good reviews on Amazon. I must admit I have never heard anyone say they were not deeply moved by it. A paperback version is in the works and will be published soon.

My one caveat for this website is that the hospices in my book did not cater for people with Alzheimer’s. I can only say that the attention to the very individual needs of patients would go far when it comes to people with dementia of any kind.

This was originally published on the Alzheimers Authors website:  https://alzauthors.com/2017/06/14/welcome-ann-richardson-author-of-life-in-a-hospice/

 

Kind Cooking: the art of preparing food for sick people

Are you one of the many people who are looking after someone who is very ill? Perhaps a spouse, sibling, parent or friend? As you well know, it is a highly tiring and difficult task, however much it is undertaken with love.

You may be overloaded with advice, but I’d like to add a few thoughts about food.

Ill People Don’t Feel Like Eating

People who are ill rarely want to eat. Nothing looks good or tastes good and they just pick at whatever you put in front of them. And then they feel tired, have no energy and little chance to enjoy the days, months or, perhaps, years they have remaining

In the course of writing a book about end-of-life care, I interviewed a hospice cook who was devoted to encouraging ill people to eat. If they eat even a little, he said, they will have a much better quality of life.

Instead of sleeping all the time, he noted, they will be able to talk to family and friends – and, when needed, say their goodbyes. There may be unresolved issues and talking is important for laying these to rest. This is altogether better for the ill person and better for those looking after him or her.

Cooking from the Ill Person’s Point of View

The cook, with long experience, had many pointers to suggest. Give the ill person some choice wherever possible, as they will have so few areas in which they can exercise any sense of control.

Don’t overwhelm them with too much food; use small plates and small bowls so that what is offered looks an amount they could cope with. One small piece of meat, one small potato, something green or a small carrot for colour and it can look much more inviting. Herbs can add valuable taste for jaundiced appetites and can offset the effects of medication.

If possible, keep the preparation at a distance, as the smell of cooking can be very off-putting. See if you could borrow a neighbour’s kitchen if you want to cook something that takes time or has a powerful smell. People are often very eager to help.

Eating as a Social Occasion

Finally, the cook stressed the importance of making eating a social occasion. Talking and even laughing over food provides a welcome sense of life and normality. Sit down together and discuss the news of the day or something else of interest. Sometimes, a small amount of alcohol would not go amiss, depending on the drugs the person is on.

He was also keen to get people out of bed wherever possible. A table nearby, even with a tablecloth, can look much more inviting than the tiresome sick bed.

It’s Not Easy

Cooking for people who are very sick is not easy at the best of times. But these ideas provide some ways to make it more palatable for the patient and more satisfying for the cook.

This post was originally published by SixtyandMe (see http://sixtyandme.com/kind-cooking-the-art-of-preparing-food-for-sick-people/) and should not be re-blogged

How Hospice Care Can Help Meet a Patient’s End of Life Wishes

Have you ever spent time with someone in their last days? Was it intimate, peaceful and special – or was it full of intrusive hospital equipment, harried nurses, physical pain and no chance to talk?

We are all affected when someone we love is close to death. I am sure we all hope for a time of tranquility and the chance to say a meaningful goodbye. And, it goes without saying, a time that is pain-free. The concept of a “good death” is not an empty one. The question is how to achieve it. Can hospice care help?

Life in Hospice Care

It was my privilege some years ago to interview a number of nurses, doctors and other staff working in two hospices in England. From what they told me, outside of the family home, I could not imagine a better place for one’s last days. Everyone seemed full of compassion, but also thoughtfulness about the needs of the people there, both those who were dying and their relatives and friends.

 Attention to Needs

It is difficult to do justice in a few words to the breadth of attentiveness in a hospice. As described in much more detail on my website, it is not the big things that one remembers, but the little touches that make all the difference.

In my book, I introduce different patients, like the woman who didn’t want a bath at the normal time and was allowed to bathe at the time of her choosing. Or the family member who needed a sandwich to enable her to stay at the bedside and how it was provided. Or the patient who simply needed a cuddle.

I met a hospice cook who spent considerable time thinking about how to encourage people to eat. He said if they ate, they would be alert enough to say goodbye to their friends and family. He studied the impact of drugs on the taste of food and learned how to counteract this.

A choice of food was always offered. He encouraged people to get out of bed to eat, if at all possible, so they could have a sense of occasion with their friends or family.

Each person – whether a nursing assistant or chaplain or doctor – looked out for patients’ needs in all sorts of ways. This might be the need to talk about the past or simply to sit in silence with someone holding their hand.

Sometimes, some action was called for, such as an elderly woman who wanted to write to her grandchild, but needed a slight reminder to do so sooner rather than later. The stories go on and on.

Hospice Care Offers a Choice in Death

No one chooses to die, of course, but hospices do what they can to allow people to die in the way they want. Perhaps most memorable for me was the man who asked to die under a tree and was duly taken outside to do so when his time had come.

Some people wanted music and others wanted family with them. Some appeared to want to be alone. A Muslim man asked that his bed be turned so that his head was facing east. Every effort was made to respond to these wishes.

We don’t like thinking about these things, but we all know we should. Many people want to die at home, but end up in a busy hospital. There is a need to think about what you – or your family – would want, so it can be planned for.

 

This was originally published by Sixtyandme (see http://sixtyandme.com/how-hospice-care-can-help-meet-a-patients-end-of-life-wishes/) and should not be re-blogged

Getting Back Your Rights to a Trade-published Book

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Do you have a traditionally published book?  Are you unhappy with the publisher and, deep down, would like your rights back so you can self-publish it yourself instead? Read on. You can probably organise this much more easily than you think.

First, Get Angry

In my case, it all started with a royalty statement.

The small but prestigious company that had published my book Life in a Hospice in 2007, had been taken over, and the new company did things somewhat differently. Their statement informed me that they owed me £3.27 ($4.18) but “if the amount due is less than your contractual minimum of £25, the balance will be carried forward to your next statement”.

I got hopping angry.

It wasn’t the money – it was the principle.

Yes, the book was selling only a few books a year, but the meagre royalties belonged to me. And, given my age, I figured I might well be dead before my royalties reached the required sum! I phoned the royalties department and they concurred. My £3.27 turned up on my next bank statement.

But it got me thinking. This book, about the wonderful end-of-life care provided in hospices, was the best I had ever written. The medical publisher had overpriced it for ordinary readers in the first place (over £21 for a paperback and not much less for the ebook) and given it little publicity. This was despite a Foreword by the late Tony Benn, some excellent reviews and being Highly Commended by the British Medical Association.

Why was I putting up with this?

Then, Ask

That was the impetus for doing what I should have done a long time ago. I asked for the contact details of the editor responsible for my book. Having learned how to self-publish, I wanted to gain control over its publication. But I also thought that getting rights back would involve lawyers, contracts, some payment to them and heaven knows how much time and trouble.

I emailed the editor, with a friendly request for my rights. I expected it would be weeks before I heard from her.

In fact, I had an email within two hours saying that they would be happy to revert the rights, with no cost. Indeed, it took less than three weeks for the contractual issues at their end to be sorted and a formal letter to be prepared and signed by the publisher and myself.

Lo and behold, the book was mine.

Moreover, they not only sent me a pdf of the book, but all the spare paperback copies lying around, free of charge. A surprising bonus.

That book has now been re-launched on Amazon  with an updated preface and a new cover, for £2.99. I can happily report that it is selling 3-4 a week, instead of 3-4 a year.

And Ask Again

And this led me to think – why not get my similar book back?

Wise Before their Time was about people with HIV and AIDS back when most people died from the disease. It had been published by one of the Big Five publishers in 1992 and was long out of print. It took me a while to track down the relevant person for reversion rights, but when I did, again there was absolutely no issue from their end. A formal letter returning the rights to me took some time in this case, but sits on my desk as I write.

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So don’t be frightened. If my experience is anything to go by, it is much less of a problem that you think.

And what do you have to lose?

 This was originally published by the Alliance of Independent Authors (ALLi) on 27 April 2017.

Reflections of a Palliative Medicine Specialist Registrar

The following short piece was sent to me and I felt that it reflected well the sort of views offered by hospice staff in my book, Life in a Hospice: http://myBook.to/Hospice

The same casual conversation keeps popping up, “So, what kind of doctor are you?”, they ask with drink in hand, expecting to reap the rewards of knowledge gained from Casualty, to wallow sympathetically in the long hours doctors work and to perpetuate doctoring lore. A fellow doctor at your side reels in a little, scoping out other conversational opportunities, knowing the answer you are about to give. “A palliative care doctor” I say, observing the face slump as they recall their Gran die.

The thought process is often predictable: “is that not the most miserable job in the world?” The job is so often tainted by the stereotype that it is a monotonous hand-holding, sickly, nicey-nice specialty, personified by wool and crochet.

My registrar interview question ‘why do you want to go into palliative care?’ I had answered boringly. I outlined how perfect I was for this job, I was born and raised like a Spartan to be a palliative care physician with my entire being – sleep, diet and life focusing on this one true life-fulfilling aim. I raised my arms in fists to thunderous rapture of the greatness of my person specification. Needless to say, it took me four attempts to get a post.

I wish I had instead tried to respond to the connotations noted above, focusing on what I realised was important. All of medicine is palliative care, really – you are not better until you feel better, but what if you’re feeling rotten all the time? Life is about living, drinking, dancing, devotion, family and football – this job is about giving that quality to patients. It is anything but miserable and, I kid you not, the hospice is one of the most welcoming, charming, blissful and happy places I have ever been privy to.

Is it wishy-washy woollen crochet? Nothing de-stresses me more than grotesque unadulterated violence on the football pitch, and there would be a niche for some equivalent anger management strategy in the hospice (I’m trying to figure out how). But sometimes folk need some fluff. Complementary therapies and the like, although they have no quantifiably measurable outcomes, subjectively calm patients and their family in what is arguably the most stressful time of their life. There isn’t much high quality evidence behind most of it, but rather an old true physician ‘art’ in getting subtle decisions right. The cleverness is figuring out the big picture, what is important to each person and then guiding them through their own – often foggy and treacherous – waters.

Is it for everyone? Well of course not. You are dealing with death, which can create a dolorous reflective environment and this can be hard to get your head around at times. However, being close to an aspect of life so often ignored can be liberating in a weird way. Life is precious and it seems all the more so when you see it depart.

There are no overt heroics in palliative care, rarely quick drama, no adrenaline, which many doctors would miss. But what it does do better than all other specialties is offer the opportunity to not only hold the hand but walk the patient and family through the most difficult journey of their life.

Dr Matthew Dore, Palliative Medicine Specialist Registrar, Severn Hospice

Interview about Life in a Hospice

Life in a Hospice takes you behind the scenes in end-of-life care, where you will see the enormous efforts of nurses, doctors, chaplains and others – even a thoughtful cook – to provide the calm that we all hope for.  Perhaps you are looking for end-of-life care for someone you love. Perhaps you are wondering if this is the job for you. Or you just feel like being inspired by humanity at its best. This book will be for you.

Life in a Hospice: reflections on caring for the dying by Ann Richardson

1. What inspired you to write your book?

After the death of a good friend, I worked for four years as a hospice volunteer. I was extremely impressed with the dedication of the staff, but also rather fascinated by what motivated them to go to work day after day to see people die. I had already written one book based on interviews and felt this would be another suitable subject.

2. How long did it take you to write your book?

My writing is different from that of most authors as it is based on interviews.  Each interview takes somewhat under two hours and it is best not to do more than one a day. There were 31 interviews done over the course of two or three months. These are then transcribed verbatim (word-for-word), which takes about half a day each. Once I have the transcript, I read it over with enormous care, marking up the different themes and issues arising. I can do only 2-3 a day.  So there is a lot of preparation time.  These preparatory processes usually overlap, which helps.

Once I have the transcript material in order, however, it takes me only a few months to complete a book draft and a little longer for editing.  All in all, the process takes somewhere between six months and a year.

3. What is one thing you would love someone to take away after reading your book?

A sense of awe at the caring qualities of the people I interviewed.  You see humanity at its very best (not the people dying, who we don’t learn much about, but the people caring for them)

4. Describe your book in three words.

 Hospice, dedication, care

5. Who will enjoy your book the most?

People who like to reflect on deeper issues in life.  It is not at all morbid – indeed, it is funny in places –  but it is not traditional entertainment.  I suspect there is a big overlap with people who seek out literary fiction.

6. What do you think is most important to being a powerful writer?

 Skill with words is always important (and hard to pin down what it means), but so is a sense of the complexity of human beings – their motivations, their funny little foibles and their joys.  I would place honesty above all, as readers recognize an honest book when they see it

7. When you write, who do you envision you’re writing to?

This varies book by book.  In this case, I imagined readers would be people like me who would find it fascinating to understand the joys and challenges of end-of-life care.  Regrettably, there are not so many people in this category as I hoped! Several subgroups are also likely to be interested in this book –

  1. people who already provide end-of-life care, such as nurses and others, and want to read about how others cope with it;
  2. people who are thinking about going into end-of-life care, such as student nurses and others, and want to understand what it entails;
  3. people who are looking into end-of-life care for a family member or friend and want to know what hospices are like.

I also recommend it to anyone who just wants to see humanity acting at its very best.

8. Does writing energise or exhaust you, or a bit of both?

Writing completely energises me and it is difficult for me to stop. Sometimes I will wake up in the night and go to work on a book.  Of course, in the end, it is tiring, but I am always happy when I am working on a book.

9. What did you enjoy most – and least – about the process of creating your book?

I enjoy almost everything in the process of creating my books, but there can come a time in editing a book when I feel I have had enough.

10. Did you often suffer from writer’s block whilst writing? Any tips to overcome it?

I have never suffered from writer’s block, aside from the odd morning after a bad night’s sleep when the sentences don’t flow as well as usual.

Ann Richardson’s book is available on Amazon at: Life in a Hospice

This was originally published on mumsthewordblog (https://www.mumsthewordblog.com/2017/04/12/interview-with-ann-richardson-author-of-life-in-a-hospice/)

The story behind Life in a Hospice: reflections on caring for the dying

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This was published on Jane Davis’ Virtual Book Club on 12 April 2017.

Background:  Ann has worked as a social researcher most of her working life, writing books, articles and reports from interviews with ordinary people about specific health and social care problems. Most of this writing was addressed to professionals working in these fields, rather than the general public. But she discovered that her real love is writing narrative books, allowing people to explain their inner thoughts in their own words. She has now written three such books and is planning another.  American by birth, Ann has lived in London with her English husband since 1968. They have two grown-up children and two grandsons, age 7 and 10.
Two reviews:

‘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/)