Marv Taking Charge: A Story of Bold Love and Courage

by Lois Hoitenga Roelofs

Lois Roelofs always knew that Marv, her husband of fifty-five years, had strong convictions. So when he was diagnosed with “very aggressive” small cell lung cancer, with a few weeks to a few months to live, she accepted that he wanted to die on his own terms―refuse chemo, choose quality of life over quantity, and die at home. She tells their story in a mix of personal notes, family and friend emails, and public blog posts written during Marv's illness and her first months as a widow. At the time, she could find no personal accounts of refusing treatment and living with the resultant uncertainty. Lois wrote this book to honor her husband Marv's request to tell the story of their experience when he chose to refuse treatment for a diagnosis of small cell lung cancer. Family, friends, and readers of Lois's blog in real time confirmed interest in the topic of refusing treatment. She wanted to show her readers that achieving patient autonomy, doing what's right for them, is possible and, implicitly, to caution readers never to blindly follow medical advice. Marv Taking Charge will be helpful to those facing a critical decision whether or not to treat a terminal illness. It will help answer questions such as 1) what can happen after the diagnostic visits, 2) when to sign up for hospice, 3) what can be expected from hospice, 4) how to spend the time during the uncertain period when all persons involved are waiting for the worsening of the patient's illness, and 5) what can happen during the progression of the illness.
The main theme is patient autonomy, having the right to make decisions regarding care.

224 pages, Paperback

Published April 18, 2023

Reviews

[Diane · Rating 4 out of 5]

What happens when a spouse gets a diagnosis of Stage 4 cancer and decides to take no treatments but wants to die naturally? This true story was written by the caretaking spouse who was a retired nurse. Even though she had a doctorate in Nursing Science and had taught nursing students in four universities, she was not fully prepared for the task of caretaker. Inspirational and honest sharing of the way in which this couple traveled through their last adventure together.

[Vickie · Rating 5 out of 5]

Marv Roelofs' story about how he chose to live with his terminal diagnosis is an important one. And Lois Hoitenga Roelofs' memoir about Marv's choices is a well-written, informative, and touching story.

In January 2018, while vacationing in Arizona, Marv received a call from his pulmonologist, who told him he had lung cancer, small cell, the very aggressive type. The doctor explained to Marv that he needed to start chemo right away. Marv answered, "I'm not interested in treatment," then handed the phone to his wife, Lois Hoitenga Roelofs, who is a nurse and a writer.

The doctor made it clear to Lois that Marv's cancer was terminal, but that he must start chemo right away in order to have a chance of more time. Marv didn't change his mind, and he and Lois continued their vacation in Arizona. When they returned home, Marv was enrolled in hospice care. Then he and Lois went about living their lives. They visited family and friends, and they did the everyday activities they had always enjoyed. Marv had a lot of good days, but Lois also writes about the difficult times.

Why is this book important?

Many people, like Marv, will learn they have a terminal illness, and they will face decisions about how they want to live the rest of their lives. Currently, most terminally ill cancer patients are treated with chemo and radiation, not because treatment will provide a cure, but because it may extend their lives a few months. However, those extra months often come with a decreased quality of life because chemo and radiation are harsh treatments with potentially severe side effects. Marv chose quality of life over quantity, then he and Lois made the best of the days they had left together.

Cancer is talked about with words like fight and battle, and patients are described as courageous. However, Lois, agreeing with Atul Gwande, who wrote Being Mortal, says terminally ill patients should be asked what is important to them.

Marv's answer to that question was to live out his days without the side effects of medical treatments that were not going to save his life.

[Tami Kuipers · Rating 5 out of 5]

Marv chose not to do chemo when given a terminal stage 4 cancer diagnosis and this is their story of living life after the diagnosis and saying goodbye to friends and family in his own way. I would love a sequel to what life in the last five years has looked like, how Lois adjusted and what challenges she faced.