Handbook for Mortals - Guidance for people facing serious illness by Joanne Lunn MD and Joan Harrold MD and the Centre to Improve Care of the Dying at George Washington University, published by Oxford University Press (New York; 1999, ISBN 0 19 511662 3, 242 pages, £14.99). Reviewed by Nicholas Albery.
'For information on palliative care and death with dignity, the authors recommend www.growthhouse.org'
The Handbook for Mortals is an authoritative and fascinating American book on preparing for dying, aimed at the general public and put together by a team of people who researched it over a two year period, thanks to generous funding from the Alfred P. Sloan Foundation. Proceeds from the book's sales will go to support Americans for Better Care of the Dying, which has the neat acronym ABCD, a charity dedicated to public advocacy and education. The book is inset with numerous rather fine poems and words of wisdom. It's a 'How to' book, covering topics ranging from 'How can a caregiver know if things are out of control?' and 'How long do I have?' to 'How can I be sure my choices will be followed?' and 'How will I know when death is getting close?' For further information on palliative care, pain management, death with dignity, depression, anxiety and grief, the authors recommend a web site called Growth House (www.growthhouse.org).
Their book is rather like a more establishment and less radical version of the UK's New Natural Death Handbook, although it does not provide the latter's wealth of detail about how to organise a funeral and does not even mention that not using a funeral director is possible. The authors are, for instance, in error when they say that "skilled funeral directors" abroad are required to receive a body sent from the USA. We have collected the body of a friend from Heathrow Airport cargo section using our own van with no trouble at all.
There were three items in the book that seemed of outstanding interest. Firstly, the sample Values Statement they print, which is worth contrasting with the more specific and particularised one by Chris Docker (obtainable from the Natural Death Centre). A Values Statement helps doctors and family to know how to interpret your legal Living Will. Theirs goes as follows - adapted from the Vermont Ethics Network.
1. What do you value most about your life? (For example: living a long life, living an active life, enjoying the company of family and friends, etc.)
2. How do you feel about death and dying? (Do you fear death and dying? Have you experienced the loss of a loved one? Did that person's illness or medical treatment influence your thinking about death and dying?)
3. Do you believe life should always be preserved as long as possible?
'What kinds of mental or physical conditions would make you think that life-prolonging treatment should no longer be used?'
4. If not, what kinds of mental or physical conditions would make you think that life-prolonging treatment should no longer be used? Being:
5. Could you imagine reasons for temporarily accepting medical treatment for the conditions you described?
6. How much pain and risk would you be willing to accept if your chances of recovery from an illness or an injury were good (50-50 or better)?
7. What if your chances of recovery were poor (less than 1 in 10)?
8. Would your approach to accepting or rejecting care depend on how old you were at the time of treatment? Why?
9. Do you hold any religious or moral views about medicine or particular medical treatments?
10. Should financial considerations influence decisions about your medical care?
11. What other beliefs or values do you hold that should be considered by those making medical care decisions for you if you become unable to speak for yourself?
12. Most people have heard of difficult end-of-life situations involving family members or neighbours or people in the news. Have you had any reactions to those situations?
A very useful chart in the book suggests forms of words that may help defuse the well person's anxiety about illness and death sufficiently to allow the person who is ill to say what is really on their mind:
'It must be hard. Can I just sit with you for a while?'
When you think you want to say / Try this instead
Dad, you are going to be just fine. / Dad, are there some things that worry you?
Don't talk like that! You can beat this! / It must be hard to come to terms with all this.
I can't see how anyone can help. / We will be there for you, always.
I just can't talk about this. / I am feeling a little overwhelmed right now. Can we take this up later tonight?
What do the doctors know? You might live forever. / Do you think the doctors are right? How does it seem to you?
Please don't give up. I need you here. / I will miss you terribly. But we will get through somehow.
There has to be something more to do. / Let's be sure we get the best of medical treatments, but let's be to gether when we have done all we can.
Don't be glum. You will get well. / It must be hard. Can I just sit with you for a while?
The authors reinforce a message that has appeared in several of the Natural Death Centre's publications, that there are potential benefits of not using tube feedings and IVs near death. These benefits they list as follows:
Effect on the body / Benefit
Less fluid in the lungs / easier to breathe
Less fluid in the throat / less need for suctioning
Less pressure on tumours / less pain
Less frequent urination / less risk of skin breakdown and bed sores
Increase in the body's natural pain-relieving hormones / increased comfort and less pain.
The Values Statement by Chris Docker is available as part of a set of forms that includes a Living Will, a Death Plan and an Advance Funeral Wishes Form for a minimum donation of £5 from the Natural Death Centre, 6 Blackstock Mews, Blackstock Road, London N4 2BT, UK (tel 020 7359 8391; fax 020 7354 3831; e-mail: rhino@dial.pipex.com; web: www.naturaldeath.org.uk). The Natural Death Handbook is available from the same address (£15.50 by credit card incl. UK p&p) or you can place a secure online order.