By Barron H. Lerner, MD
When I finished my book on famous patients, the most common question I received was “Are the stories of sick celebrities really relevant to other patients?” My answer was that yes, with some caveats, these experiences are well-worth knowing.
The same can be said for the story of Patrick Swayze’s terminal pancreatic cancer, which has now been told by his widow, actress Lisa Niemi Swayze, in a new book, “Worth Fighting For: Love, Loss and Moving Forward.” Patrick Swayze, a dancer and actor best known for his roles in the films “Dirty Dancing” and “Ghost,” was diagnosed in January 2008 and died of the disease in September 2009 at the age of 57. He was originally told he would live only a few months.
First, the caveats. Like most celebrities, Swayze had the means, as his wife says, to “think outside the box.” He enrolled in a clinical trial at Stanford University, traveling regularly to Palo Alto from Los Angeles for experimental chemotherapy. Swayze also was a VIP patient, getting first-class attention from top doctors and hospital staffs. Most patients experience greater hurdles.
Nor should pancreatic cancer patients who read “Worth Fighting For” assume that they, like Swayze, can beat the odds and survive longer if they take the same medications that he did. Every case of pancreatic cancer, like all cancers, is different.
But readers dealing with serious illnesses themselves or in family members will encounter situations very similar to those encountered by the Swayzes. Among the first issues they confronted was how to balance hope and reality in the face of likely fatal illness. “While we were determined to be realistic about it and not cover our heads in fear or denial,” Niemi writes, “we held out the hope that things would be different for Patrick.” Ultimately, the pair termed themselves “optimistic realists.”
In my own practice, I, too, struggle with this issue. The best doctors, I believe, help their gravely ill patients celebrate modest successes while not ignoring the negative events that are likely coming down the road.
The Swayzes also struggled with the issue of disclosure. As celebrities well-known to the general public, this was a bigger deal for them than most families. Indeed, as Niemi documents, the tabloids consistently reported untrue details about Swayze’s illness, assisted by intrusive paparazzi. But all cancer patients need to decide how public they want to be. Even though the Swayzes appreciated visits from family and friends, they were, Niemi writes, “an additional emotional burden.” One relative even “wept copiously,” falling to her knees during a visit.
And to what degree should terminally ill patients try to return to their routine lives during therapy? Even though Swayze was well-off from his acting career, he could not see himself staying at home or vacationing for the rest of his life. Thus, during the summer and fall of 2008, he filmed multiple episodes of a TV action series called “The Beast.” Swayze was, well, a beast. Although he still had cancer in his pancreas and liver and was getting chemotherapy, he worked 16-hour days and even did his own stunts. Not everyone would (or could) have done what Swayze did, but it was nevertheless an inspiring and instructive choice.
There are many other familiar scenes in the book. Once several types of chemotherapy no longer helped, Swayze needed to try a drug that would cause baldness—a particularly vivid event for Swayze, who was known for his impressive locks. Like many other cancer patients, he asked his spouse cut it off proactively. And I vividly recognized the scene in which Swayze’s oncologist first asks his deteriorating patient whether he wants to be DNR (do not resuscitate) in case his heart stopped. Uneasy doctors still too often avoid such conversations until it is too late.
Finally, like so many other families, the Swayzes needed to decide whether Patrick was going to die in the hospital or at home. Niemi ultimately decided to bring him home. Yet there were more decisions to be made. Should he continue to get antibiotics? Should they give him intravenous fluids to avoid dehydration? What about pills to lower anxiety and pain? Fortunately, the Swayzes had hired a home hospice program to help them with these decisions. When Patrick stopped breathing, Lisa was as ready as she could have been.
There is one other issue that “Worth Fighting For” teaches about serious illness. A patient dying of cancer once told me that while she appreciated the attention from solicitous friends and family, no one ever asked how her primary caretaker, her husband, was doing. I have never forgotten that comment and always make a point to inquire.
Niemi was a typical caretaker, sharing in the joys of small victories, mourning her dying spouse and, mostly, bearing an enormous emotional toll. Her new book not only has important lessons for cancer patients, but also for those who love them.
Barron H. Lerner is Professor of Medicine and Public Health at Columbia University Medical Center, and the author of When Illness Goes Public: Celebrity Patients and How We Look at Medicine and, most recently, One for the Road: Drunk Driving Since 1900.