Several months ago, I had the good fortune to hear Barbara Coombs Lee speak about her new book, Finish Strong: Putting Your Priorities First at Life’s End. Barbara, a former nurse, physician assistant, and now an attorney, is the president of Compassion & Choices.  C&C is a national organization whose focus is to empower consumers to chart their own course at life’s end through education and legislation, and helping states to pass medical aid in dying laws.  Having been a nurse myself for more than 50 years, I value her knowledge and expertise; she writes from an informed perspective.

Barbara begins by stating that “the most essential thing a person can do to achieve a gentle departure is simply and bravely to think and talk about it ahead of time.”  She urges us as consumers to ask questions and require candor from our physicians about treatment. We need to speak clearly with our families and/or surrogates about our priorities.  We need to complete appropriate documents including advanced directives and if appropriate, a POLST (Physician’s Order for Life Sustaining Treatment), both of which spell out our wishes for end-of-life care.

Let Me Die Like a Doctor

One chapter that got my attention is called “Let Me Die Like a Doctor.”  What does that mean? She explains that “They agree to fewer invasive or aggressive treatments.  They choose palliative treatments and suffer less. They don’t, themselves, plan to submit to the low-yield and exhaustive gauntlet of tests and interventions that they impose on their dying patients.”  Doctors know that death is inevitable; effort can be directed into remaining healthy and also into preparing to die well. All treatment plans will eventually “fail.” They know when to turn away from futile therapies and focus on love, beauty, faith—whatever is most important to them.  Finally, only the dying person can make these choices.

Make a Video

She goes on to describe the benefits of hospice care and offers considerable direction about handling end-of-life care when facing a diagnosis of dementia.  She states that someone with dementia needs a strong advanced directive, the choice to decline life-sustaining medical treatments, and the ability to decline food and water.  She gives explicit instructions about creating a video to supplement the advanced directive when the person has the mental capacity to make their own choices. The video is a personal message about wishes and choices, having an immediate and authentic tone stronger than any signed and witnessed form.  It is likely to be most useful to the healthcare proxy and to loved ones.

Consumers Can Change the System

Barbara concludes by noting that slowly advancing illness is the most common situation that we will encounter in our own lives.  This “requires adjusting our attitudes and expectations of the healthcare system and turning the system to our own needs. The system cannot change the system.  Only consumers can change the system.” You and me. We need to ask questions, make careful decisions and put our values and priorities first when time is running out.  We and our loved ones will change the system.  We need to reclaim authority over our lives as we age and decline, with an ending that reflects and upholds the values we cherish and the beliefs we hold.  “Let us finish as strong as we’ve lived.”  

I found this to be an excellent read and a great resource for anyone interested in having more than just a passing say over how they wish to die.  This book gives you, the informed consumer, all the information you need to figure out what you want and then put your plans in concrete form in order to actually have those plans actualize.  Thank you, Barbara!

At End of Life Choices California, we are committed to putting much of the information Barbara discusses in her book into the hands of Californians; the terminally ill, their families, and those who are interested in planning ahead. We have trained volunteers available to provide information and personal support about all end of life options, advance care planning, and California’s End of Life Option Act.  For more information about our services, please browse our website or contact us.

Judith Schnack, MSN, RN, FNP is a Client Advocate Volunteer with End of Life Choices California

 

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