Dear Friends,
I just wanted to drop you a note about a book that I just read that I really enjoyed called A Beginner's Guide: Practical Advice for Living Life and Facing Death to the End by BJ Miller, MD and Shoshana Berger. I think it will be useful for death doulas in their practice.
One of the authors is well versed in end of life, palliative, and hospice care.
BJ Miller is a hospice and palliative medicine physician who has worked in inpatient, outpatient, hospice facility, and home. He now sees patients and families at the UCSF Helen Diller Family Comprehensive Cancer Center.
When he was a teenager he lost both his legs and one arm after being electrocuted. So he has suffered and come back, so I feel he is a good source of info as to what folks go through in hospitals as they deal with staff and face news that is difficult to handle. It's a very good perspective to learn from.
A quote that they put in their introduction says:
There is nothing wrong with you for dying.
This goes hand-in-hand with death doula thinking.
In the introduction, the authors also say that the book will help dying be less painful and more meaningful. They talk a lot about the importance of planning ahead and being prepared. They talk about how to leave a legacy: leave your story, leave a letter, leave an ethical will. All things we promote as death doulas and it gives us new ideas and it is a great resource for those dying to think about and then perhaps need help in these areas.
They have parts about dealing with your illness that discusses learning you are sick and what that entails, how to handle the news, how to keep moving forward. Deciding what is important to you now. Something they say is “ this is more a time for taking stock than taking action. Who you are, and what you want to do, will bump up against circumstances and what’s physically possible.
Look inward but also outward-this is how to prepare for decisions you’ll need to make that affect treatment options and how you want to spend your time. Whenever you find yourself at a crossroads, pause and reflect.” This is something we can use when helping people do Advanced Care Planning (ACP) and looking at their goals of care.
They have sections for caregivers as well, which gives them guidance on how to talk to health care staff and what to ask for.
Our ultimate purpose here isn’t so much to help you die as it is to free up as much life as possible.
There is a section on talking to children about death that goes through several questions children may have and how to answer them.
How to prepare for your final days. How to prepare your funeral. It also gives guidance for caregivers about what happens after the death, the first 24 hours, dealing with grief, writing a eulogy and obituary, and celebrating life.
It can open up conversations about what a patient can do to ease the “after” part of life to make it easier on those left behind, by involving them in communicating to their Substitute Decision Maker (SDM) or Point of Care (POC) as to what they would want after.
I think this book is a good resource for death doulas as well as a good book to put on a list for clients to read.
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Marlene Morrow is a graduate of HHA's death doula certificate program, and the lead death doula for the Ottawa region.