CHECK OUT: Hope For The Best Plan For The Rest

Dear Friends,

I would like to share with you a book that was recommended to me by another death doula friend of mine. It’s called Hope For The Best Plan For The Rest by Dr. Sammy Winemaker and Dr. Hsien Seow. It is a guide that helps patients and families struggling with a serious illness how to get the honest, personalized care they need. I think it may be particularly helpful for readers hoping to understand dementia.

The book offers 7 keys for navigating a life-changing diagnosis. It’s written by two experts. One is a palliative care physician and an associate clinical professor, who has cared for thousands of patients and a professor who is the Canada Research Chair in Palliative Care and Health System Innovation.

The book was created because both authors noticed the gap in patients and families who craved more open information about the health care system and their serious illness, right from the time of diagnosis. They realized that people needed and deserved to know how to be hopeful and informed and prepared. They realized that the health care system is imperfect (even broken). Even though lots of information had been communicated to individuals by many different health care teams, no one had given them a road map of how their illness will unfold. They found there was a massive disconnect between what patients and families hear and what doctors and the health care system say. The authors note that many doctors, nurses, and allied health professionals are uncomfortable talking about the possibility of decline. So there ends up being a pattern of half-truths, implied consequences, unspoken questions and ill-addressed fears. Consequently, many patients and their families make major decisions with only partial information. The authors realized that advocating for both health care system change and improving the education of providers wasn’t enough. They realized patients and families also needed more education on how to navigate the system and what to expect in their illness. Hence, this book was created!

There are seven essential keys that they highlight that every patient and their family should know at the beginning of their life-changing diagnosis. I’m hoping this book might help you to feel like a person not a patient and take back control and choice in your illness experience.

The book not only shares information but also practical actions, so you are in the know, with tips, exercises, conversation starters, and real-life stories of patients.

Some of the exercises, tips and stories you may find helpful include:

Hope and Planning

How to walk two roads in starting to make decisions allowing you to become more resilient because you start to learn how to stay a few steps ahead.

Learning What Your Style Is

Even though it’s natural to focus on the illness, spending a lot of time and energy on the illness. But you also have inherent skills and traits that you can harness to make your experience more positive. By learning your style (how have you dealt with difficulty in the past?), you can proactively implement strategies to manage the uncertainties ahead and the ebbs and flows of the illness.

Connecting the Dots

Because it is typical for a patient to be cared for by different specialist teams and to experience different care settings, it can be easy to lose your sense of self. Information does not always flow easily or arrives too late between the teams, so patients can feel fragmented. You or someone in your inner circle will need to be the glue to hold the different parts of the system together and to weave your personal details into the care. This will allow you to retain your sense of self and to feel more in control. There can be many consequences of assuming things are coordinated when they’re not. The book provides many practical points in how to connect the dots.

Finally, the last part of the book demystifies dying. It provides information so patients know what to expect and what dying looks like.

I hope you find this book helpful!

Love, Christy

P.S., The authors of this book have a website called Waiting Room Revolution with all kinds of helpful information that you may want to check out.

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Christy Bruce lives near Barrhead, AB. Christy is a volunteer at the Barrhead Health Care Centre and will be working with the Palliative Care Team. Christy is also currently working with a friend who has ALS and is receiving care in his home. Christy brings her education in Psychology and years of experience working with individuals with disabilities in various settings, to her work as a death doula. Her full business name is End of Life Services: A Peaceful Path, providing emotional and spiritual non-medical care and support for people with a life-limiting illness and their circle of support in the process. www.endoflifeservices.ca.