Nursing Book Club

Lightning Flowers: My Journey to Uncover the Cost of Saving a Life by Katherine E. Standefer

The ethical toll of high-tech medicine

Lightning flowers are the tendrils of pink skin tissue left behind when an individual is struck by lightning. Once author Katherine Standefer heard this term, she wondered if she might have invisible internal burns due to the random 2,000-volt firings of her implanted cardioverter defibrillator (ICD).

These are the kinds of questions Standefer confronts in her recent book, which examines what her ICD means to her and what medical devices like it means to all of us. “Some people say lightning cures blindness,” she declares. “This is my version.”

Genetic Mutation

Lightning Flowers is two stories wound together. The first began in 2007, after the author’s sister suffered a sudden cardiac arrest. This heart attack turned out to be the result of congenital long Q-T syndrome (LQTS), a dangerous cardiac arrythmia that is triggered by being stressed or startled.

Standefer soon learned that she too shares the genetic mutation that causes LQTS, although she hadn’t yet suffered any problems.

A member of the gig economy without health insurance (and later cycling in and out of jobs with varying degrees of employer-provided coverage), Standefer suddenly found herself facing a lifetime of doctor’s appointments and hospital visits to manage a life-threatening condition.

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She had many choices to make about what procedures and tests were worthwhile and which could wait, where they should be done and how she should afford the cost. (Standefer talks at length about the politics surrounding the passage of the Affordable Care Act and how that law affected her.)

Some of the challenges she faced are ones familiar to anyone with a serious chronic condition: When is physicians’ advice good and when is it bad? Should she risk a backpacking trip out of the state to which her health insurance is tied, far from her doctors? How safe is really safe?

Her rare condition also forced her to come to grips with the cutting edge of medical technology, which became the book’s second story.

Moral Questions

There are several ways to manage congenital LQTS. Beta blockers help reduce the stress hormones that can trigger an attack, but the drugs aren’t always enough, and their side effects can be difficult to live with. The safer option, which Standefer eventually chose, is to an implant an ICD to correct the arrythmia when it occurs.

For Standefer, the ICD is literally a lifesaver, but she found herself wondering about its costs — and not just in terms of dollars and cents.

RN Career Events

Always concerned with the environment, she set out to explore the supply chain that makes her device possible. In 2013, she travelled to California to meet with employees of St. Jude Medical (now part of Abbott), the manufacturer of her ICD.

In 2014, she went to Madagascar to see the mines and refineries that provide the titanium and nickel necessary for the microelectronics in her device.

This journey left her grappling with some weighty moral quandaries. Medical devices like hers may be made from “conflict materials” whose mining and processing degrade our environment.

Is the life of an individual who can afford a high-tech medical device worth more than the lives of those laboring in the mines or refining plants? How can we weigh individual health against the impact on society at large? There are no easy answers.

For nurses, the medical issues Standefer examines in Lightning Flowers are easily understood, but it’s rare to see anyone question the appropriateness of lifesaving medical procedures (especially for such a young person) from an ethical or environmental perspective.

As medicine becomes increasingly expensive and high-tech, we may find ourselves asking these questions more and more often.

Lightning Flowers: My Journey to Uncover the Cost of Saving a Life by Katherine E Standefer. (Little Brown Spark, 2020)

CHRISTINE CONTILLO, RN, BSN, PHN, is a public health nurse with more than 40 years of experience, ranging from infants to geriatrics. She enjoys volunteering for medical missions.

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