With the End in Mind
Page 31
Resources and Helpful Information
Throughout this book, I have referred to a variety of places where the reader can find more information or read further around specific subjects. Here is a selection of helpful resources.
Dying Matters is a UK collaboration between multiple agencies and organisations that offer expertise in end-of-life care and bereavement. Its website offers easy-to-use materials about understanding and planning for the end of life. For example, for support and encouragement in discussion of death and dying, search for ‘Resources–talking about dying’. For help with the making, storing and communicating of plans, search for ‘Resources–making plans’ and follow the links. See www.dyingmatters.org.
Mind is a mental health charity that offers useful resources for a variety of situations, including low mood, anxiety, panic, and flashbacks or post-traumatic stress disorder. Its website provides information about building resilience, and different coping styles. See http://www.mind.org.uk.
Death Café is a movement where an informal group of people gets together to discuss aspects of dying. Always welcoming, never judgemental, always with good cake. Its purpose is ‘to increase awareness of death with a view to helping people make the most of their (finite) lives’. There are groups in more than forty countries. See http://deathcafe.com.
Planning in advance: Listen to Peter Saul, an Australian intensive care specialist, talking about this at https://www.ted.com/talks/peter_saul_lets_talk_about_dying.
Making a will is a good first step. In the UK, see www.gov.uk/make-will for advice. Many charities offer the help of a solicitor in exchange for a small legacy in the will.
Becoming a registered organ donor ensures that, if the circumstances allow, your still-healthy tissues or organs can be used to improve someone else’s quality of life, or even save their life, after your death. More information at www.organdonation.nhs.uk.
There is information about making and storing plans for future care on the Dying Matters website.
Children’s needs: For information about talking to children of different ages about dying and death, and supporting them in bereavement, there are helpful resources at www.dyingmatters.org; www.winstonswish.org.uk; and www.childbereavementuk.org.
Bereavement: Cruse offers listening support to the bereaved, and resources that include a website for young people and training for professionals who encounter the bereaved, including educators, health and care workers, and youth workers. See www.cruse.org.uk or www.crusescotland.org.uk.
Samaritans can be reached by telephone in the UK twenty-four hours a day. Trained volunteers will listen and help you to find help in your distress. www.samaritans.org.
For an insightful look at the process of working through bereavement, see Julia Samuel’s beautifully readable book Grief Works: Stories of Life, Death and Surviving (Penguin, 2017).
Professionals: There is further information for health and care professionals from the UK’s National Council for Palliative Care at www.ncpc.org.uk.
Perspectives beyond the obvious are discussed with skill by Averil Stedeford in her book Facing Death: Patients, Families and Professionals (Sobell Publications, 2nd edn 1994), based on her work as a liaison psychiatrist in a hospice.
People who are familiar with dying hear the same last messages repeatedly. Dr Ira Byok, an American palliative care physician and writer, has described how these core values of love, forgiveness, contrition and gratitude can support, repair and enhance human relationships in his book The Four Things that Matter Most (Simon & Schuster, 2014).
Atul Gwande’s Being Mortal (Profile Books, 2014) is a moving account of a surgeon’s insights into human ageing and mortality, and a clarion call for better discussions in public and professional worlds about mortality and the limits of medical intervention.
Letter Template
Wondering where to begin?
It can be difficult to open up a conversation about dying. It may be easier to start by talking about yourself, and your own wishes and preferences, before asking someone else what their ideas are. Making plans about future care may require the advice of a medical team, so the specific options can be explored. No such advice is needed, however, to explore those last messages of ‘I love you,’ ‘I am sorry,’ ‘Thank you’ and ‘I forgive you.’ You probably know already exactly to whom you would wish to say these things, but may wonder how to go about it. Perhaps writing to people may be easier than talking face to face, at least to open the conversation.
But how do you start such a letter? Telling people how important they are to us may feel daunting, as may asking for forgiveness or offering pardon for previous hurt. Here is a letter template. You could use this by photocopying the page and then writing on it, or you may prefer simply to use any ideas in it that are helpful to you, and write a letter in your own way to the people who are important to you. Then you might post it, or keep it and think a while, or read it aloud to the person. Or you could put it away for them to find and read after your death–but how much more benefit there could be for both of you to share it while you are still able to relish the new understanding such a letter may bring.
These resources are only that–resources. What you make of them, and of the rest of this book, is entirely up to you. I hope it helps.
Acknowledgements
There are many people to thank for their help and support in bringing this book into being.
First of all, I must thank every patient who has entrusted their care to the teams I have worked in. It has been my privilege to be their doctor for a part of their lives, and I am grateful for their trust. I have learned how to be a better doctor, and often a better person, from so many patient-teachers.
Thanks to the families who agreed to let me tell their stories. I have only been able to trace a few of you, but I was careful to do so when there seemed any likelihood that your story might be recognised. Your graciousness in dealing with my request, and your support for the project in granting permission, is very deeply appreciated.
I can’t begin to thank the innumerable medical, nursing and other colleagues with whom I have had the pleasure of working over a career in medicine. Describing some of you in these pages, and reflecting on the fabulous contributions you make to patient care and to teamwork, has given me a warm glow while remembering our work together. I have changed all your names, but I suspect you will know who you are. Thank you for being my companions, teachers, allies and friends down the years.
A specific note of appreciation to the chairman and members of my local Clinical Ethics Advisory Group, for agreeing to devote a meeting to examining the issue of publishing patients’ stories for public consumption, when patient permission was not possible. Although the General Medical Council guidance is clear about publishing clinical case reports to educate fellow professionals, the lines are less clear when the intended audience is not professional, yet the intention is public education rather than entertainment or gossip. Your thorough examination of the project, and your thoughtful comments, have made it easier to feel confident that this is a much-needed undertaking, and that with the safeguards I have been able to put in place, publication is ethically justifiable and morally acceptable.
The support of my agent, Andrew Gordon, was a vital contribution. Thanks for spotting the potential and then nurturing my efforts, and for your boundless enthusiasm for the project. I have David Schneider and Lucy Lunt at the BBC to thank for devising and skilful editing of a One to One interview on Radio 4 that piqued public interest and started the whole ball rolling. Little did we know what we were starting.
Friends and family have mulled ideas over with me, suggested books for me to read, commented on drafts, and made lots of cups of tea. Thanks, Josie Wright, for the use of your desk as a writing retreat, and for believing that I could turn the stories into a book. Tom and Jaclyn Bealer Wright, thank you for giving me time and space in your home in Quito so that I could spend quiet time writing, reflecting and watching hummingbi
rds.
The perceptive gifts of writing materials from Anne Pelham and Leonie Armstrong were put to good use in collecting my scattered thoughts and processing them into concrete ideas. And Anne Garland taught me how important a concrete idea is. Thanks, ladies.
I have had a wonderfully supportive reading group, whose comments, insights and suggestions have been essential: Alison Conner, Beda Higgins, Chris Wright, Christine Scott-Milton, Ellyn Peirson, Jaclyn Bealer Wright, Jane Peutrell, Josie Wright, Lilias Alison, Lindsay Crack, Margie Jackson, Maureen Hitcham, Stephen Louw, Terri Lydiard and Tom Wright, thank you all for your thoughtful input.
The team at William Collins has been completely supportive to this project, from sympathetic design to enthusiastic promotion. Special thanks to Arabella Pike for gentle editing and firm encouragement, and Robert Lacey for detailed and sensitive line editing.
Most of all, I appreciate the quiet and unwavering support of my lifetime companion. Well-met on that corridor on our first day at medical school–I was lost with you on that day, and would have been lost without you ever since.
Kathryn Mannix
August 2017
About the Author
Dr. Kathryn Mannix is a physician specializing in palliative care and a cognitive behavior therapist. She has run palliative care services in community, hospice, and large hospital settings. She founded the UK’s first dedicated palliative care cognitive behavior therapy (CBT) clinic, and has provided CBT skills training to palliative care and oncology staff throughout Britain.
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