Ask people what they want at end-of-life and most will say they want to live long healthy lives and die in their sleep. Very few want to stretch out their final days in the hospital Intensive Care Unit (ICU) tethered to machines. Unless we plan ahead and speak up, we may not get what we want when it comes to end-of-life issues.
Finish Strong: Putting Your Priorities First at Life’s End by Barbara Coombs Lee is a great guide book to help people navigate the rocky shoals of end-of-life. It provides specifics about how to talk about one’s priorities with doctors, family and friends. It offers information about options such as hospice, the concept of slow medicine, and steps to take to escape dementia and the diminishing returns of overtreatment. It helps clarify decision-making during a healthcare crisis.
With a background as a nurse, physician’s assistant, attorney, and health care policy advocate, Coombs Lee became the CEO and now the president of Compassion & Choices. Compassion & Choices is a national organization that educates about end-of-life options and advocates for the rights of terminally ill people to make decisions about how and when they die. She was one of the key people behind the establishment of the Death with Dignity law in the state of Oregon, the first state in the U.S. to allow medical aid-in-dying.
Establishing Your Priorities
The book is filled with helpful bullet point boxes highlighting steps to take. In “Talking About Your Priorities Early and Often,” Coombs Lee guides readers to state their desires balancing quality and quantity of life, documenting those wishes, stating them in terms of health care directives, and making sure the right people have those documents.
Patients are directed onto the conveyor belt of increasingly invasive and intensive medical care at end-of-life. Knowing a person’s preferences, and having those preferences documented, provides a guiding light in a dark time of medical crisis.
A Real Life Example
I’ve seen this within my own circle of friends. An 86-year-old man fell and hit the back of his head, resulting in a life-threatening hematoma (a large blood clot) pressing on his brain. Over the preceding years, his quality of life declined significantly, with mobility and pain issues presenting growing challenges. He had an advance medical directive and Do Not Resuscitate (DNR) order in place.
Over two weeks, he was hospitalized in intensive care, sent to a rehab facility, then back to the hospital. He was somewhat responsive, but his awareness declined as time went on. During the second hospitalization, a surgeon said they could drill a hole in his skull in an attempt to relieve the pressure from the hematoma. However, he could not say if the surgery would improve his health and said it may result in death.
Recognizing that his time was limited, his family opted for hospice care. He was transferred to an in-patient hospice, where he was cared for in a beautiful facility. He was kept pain-free, clean, and comfortable. While he was mostly unresponsive during those last five days, his family and friends visited daily and said their goodbyes. It was a peaceful transition, and isn’t that the best that one would hope for?
Guidance in Multiple Arenas
Finish Strong: Putting Your Priorities First at Life’s End offers specific details to help people retain control over how they face their final days. The information includes how to:
- find a doctor who will work with you on your wishes;
- evaluate whether a test or procedure would help or hurt;
- pursue the most conservative course of action (slow medicine);
- choose and work with a good hospice program;
- decide if living with severe dementia is worse than death and how to legally and ethically escape this condition.
The book also includes a comprehensive overview of the history of the death with dignity movement in the United States. As of mid-2019, these jurisdictions have adopted some form of medical aid-in-dying legislation: California, Colorado, the District of Columbia, Hawaii, Montana, New Jersey (starting August 1, 2019), Oregon, Vermont and Washington. And on June 12, 2019, the governor of Maine signed legislation to make it legal in that state. Coombs Lee also includes information on how to advocate to advance medical aid-in-dying.
Despite great advances in medical care, humans do still have a 100% mortality rate. While opponents label medical aid-in-dying as assisted suicide, we are all going to die. This option is extended to individuals who have a terminal illness with a prognosis of six months or less to live.
Having your say in how you meet your earthly end is key to a good death. Finish Strong provides the information and tools to help us finish our lives in a way that reflects our core beliefs and values.
Gail Rubin, Certified Thanatologist, is a pioneering death educator who works with companies to connect with baby boomers concerned about end-of-life issues. She speaks at and coordinates multiple Before I Die Festivals. She also is the author of three books on end-of-life issues. Albuquerque Business First named her one of their 2019 Women of Influence. Learn more at www.AGoodGoodbye.com or www.BeforeIDieNM.com.
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Gail Rubin
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