Matters of Life and Death CDH Physician Co-authors Book Exposing the ‘Real Costs’ of End-of-life Care

She calls it the “the medicalization of dying.”That’s the phrase that Dr. Lindsay Rockwell, a medical oncologist and hematologist and member of the staff at Cooley Dickinson Hospital, along with co-author Dr. Kenneth Fisher, put out for discussion in their book In Defiance of Death: Exposing the Real Costs of End-of-Life Care.

The terminology is used by the two physicians to summarize how they believe that the medical system has “fallen off course,” as Rockwell puts it, on the matters of death, and the technology that can delay it.

“By taking a historical look at death and how we die, we notice that technology has removed us from the natural process of dying by, in some cases, prolonging life,” Rockwell told The Healthcare News, adding that this is not a recent phenomenon, per se, but it has been heightened by advances in science and medical treatment.

Summarizing the book’s basic thesis, Rockwell said she and Fisher, a nephrology consultant for the Borgess and Bronson Hospital in Kalamazoo, Mich., contend that, in too many cases, physicians tend to equate death with failure when, in some cases, it should not be considered that.

“We have, as a medical culture, moved away from being able to differentiate when it is time to allow the body’s natural process of death to occur and when it is appropriate to intervene — and sometimes that line becomes blurred,” she explained. “So much of our training as a physician is in keeping people alive because, well, life is good.

“Sometimes, the appropriateness of that gets lost or obscured in the context of thinking that death is a failure because life is better,” she continued. “So much of our society views death as something to be avoided, rather than as something that can be embraced as much as any other part of life.”

Physicians get caught up in all this, especially the notion of death as failure, she said, and thus she believes they have a large role in somehow changing this perception when it is appropriate.

“I really don’t think doctors are bad people … I don’t think they mean to do things to make money and prolong suffering,” she said. “But the I think the system has so much momentum that the physician gets lost, and the physician’s ideals and priorities get lost amid the momentum of that machine.”

Rockwell said she hopes the book, published by Praeger Publishers and now available on Amazon.com, will generate a dialogue within the medical community, but also outside it, involving the public, business leaders, government, and religious leaders.

This month, The Healthcare News talks with Rockwell about her career in medicine, and what prompted her discourse on matters of life and death.

By the Book

Rockwell says she took a rather circuitous route to her work as an oncologist.

Intrigued by science and medicine, she took a job during high school as a research assistant at Memorial Sloan-Kettering Cancer Center in New York. “I was on my way to medical school, as far as I was concerned,” she said. “I was interested in doing very benchy, molecular stuff, but then I spent a month in a lab and became quite disheartened; I spent that time injecting animals with DNA samples and killing them. So I said to myself, ‘no, I don’t think this is what I want.’”

So instead of medicine, Rockwell went into the arts, specifically work in theater in choreography, and stayed in that realm for 15 years. But then her closest cousin died of leukemia.

“That had a huge impact on me … we grew up together,” she explained. “And that brought me back to my original dream of doing cancer work, so I decided to try again.”

She attended the University of New England in Maine and its College of Osteopathic Medicine. And it wasn’t long before she identified her intended specialty — oncology.

While in residency, Rockwell wrote several papers on the issues surrounding death and dying, and one of them was published in the Journal of Clinical Oncology. It was this piece that she took to the Harvard Physician Writers Conference a few years ago, where she met Fisher and was ultimately put with him for a larger examination of the subject.

“We went to the conference with the intention of writing essentially the same book, only we didn’t know it,” she explained. “We were in a small writers group together, and when Prager heard about my work and then heard about his work and ideas, they said, ‘you need him and he needs you.’”

They collaborated on In Defiance of Death: Exposing the Real Costs of End-of-Life Care, a title that really hits at their basic premise — that America’s defiance of death is too costly.

And there are many different costs associated with defying death and extending life, she contends, noting that there are financial costs that must be borne by everyone, and, in many cases, quality-of-life issues facing those who see their lives extended by science.

“As our technology has become so amazing, we are now more seduced by the ability of that technology to prolong life,” said Rockwell, “when in fact the life that we’re prolonging is a life without quality or a human being behind it.”

“The question is … where and how do we differentiate between prolonging life and prolonging suffering?”

When asked about who has the ultimate responsibility for determining when death should come — meaning the physician or the patient — Rockwell acknowledged that this is a hard question, and that, ultimately, both parties have, or should have, definitive roles.

And the assignment for the physician, she continued, is to inform the patient, be honest, and explain that, sometimes, death isn’t a failure or something to be defied.

“The root of the word doctor comes from ‘teacher,’” she explained. “The physician is a resource for the truth concerning the medical condition of a patient; he or she is obliged to say what the outcome will if this choice is made, as opposed to that choice, based on one’s best estimation.

“People always ask me, ‘how long do I have to live?’” she continued. “And the first thing I say is, ‘it’s not my charge; it’s not up to me.’”

Turning the Page

The book will hopefully generate what Rockwell calls “improvement” in end-of-life care, because while the present situation poses problems for the health care community and society in general, the future prompts even greater concern, as science continues to advance and the huge Baby Boom generation ages.

“I hope this book is a catalyst for an open dialogue between the medical community, legislative leaders, and spiritual leaders,” she said. “And the discussion has to be about how we take care of people at the end of life, from a physiological, medical, and biologic perspective, from an economic perspective, and from a spiritual perspective.

“We’re on a wheel that has its own momentum,” she continued. “In order to stop that, we need to bring some awareness to the matter of what will happen if we stay on that wheel.”

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