pi3: Life With Dignity: A Tribute to Hilary Lister

Tuesday 25 September 2018

Life With Dignity: A Tribute to Hilary Lister

“Death with dignity” is such a catch-phrase right now in the media. But for those of us who suffer in our dark thoughts every day, we are living “life with dignity.” Each day we live and make it through is a success. —Anonymous*

No, this is not yet another philosophical discourse arguing against physician-assisted suicide. Along with my colleagues—Drs. Mark Komrad, Annette (Anne) Hanson, and Cynthia Geppert—I have covered that territory elsewhere.1,2,3,4 This piece is about life with dignity–even amidst its raw and ravaging agonies. Mainly, this piece is about an Englishwoman, Hilary Lister, who recently died at the age of 46, after a long voyage of pain, endurance, and courage.

As related in by Daniel Slotnik in the New York Times, Ms. Lister

“…was relegated to her couch for years by a degenerative disease that rendered her immobile from the neck down and left her in near-constant pain. At one point the agony and tedium became too much to bear, and she resolved to end her life.

“I had been a very active person as a child,” she told The Sunday Telegraph of London in 2008. “I did sport. I played the clarinet. I went to Oxford University and studied biochemistry, and yet at that point, I not only couldn’t do anything, but I was also in terrible pain…I just couldn’t see the point in continuing, really.”

Then a friend persuaded Ms. Lister to come sailing, and she found a reason to live.”5

Over the years, Ms. Lister became “an adept sailor” who could navigate sailboats using mechanisms similar to those that control electric wheelchairs, “…sipping on and puffing into straws connected to electronic mechanisms that controlled the vessels.” Most remarkably, in 2005, Ms. Lister became the first quadriplegic person to sail alone across the English Channel, and later, to circumnavigate Britain entirely on her own. Throughout her many years sailing, she endured almost unimaginable physical challenges:

“Her body struggled with thermoregulation…She was unable to go to the bathroom on a boat, which meant she could spend hours without relief. And she still experienced pain, which she said ranged from the sensation of sandpaper rasping her joints to that of knives piercing her.”5

There were even times, while sailing, when she was unable to breathe, and required resuscitation by her support crew! And yet, Ms. Lister did what the English so famously and traditionally do: she carried on. Moreover, she described how sailing renewed her sense of pleasure in life, saying, “It was as if I was free.”

Last week, Hilary Lister died in hospital with her husband Clifford at her side.

Of course, Ms. Lister was not alone in finding life worth living, even when its “slings and arrows” become nearly unbearable and ultimately unavoidable. In a recent piece in The Washington Post, Dr. Isaac Chan–a medical oncology fellow at Johns Hopkins—describes two of his terminally ill patients and their decisions regarding end-of-life care.

One was a 68-year-old man with metastatic renal cancer, who had been through five different types of chemotherapies, and was now in the final stages of his illness. He was experiencing worsening diarrhea, sores in his mouth, and almost constant pain. Dr. Chan recommended—wisely, I believe—palliative treatment. But the patient wanted to continue with chemotherapy, and Dr. Chan, quite ambivalently, agreed to provide it. He writes,

“[The patient] continued to plead that I not give up on him, and I continued treating him until one day he had bleeding in his head. He ended up in the intensive-care unit where he passed away. In the weeks prior, he had thanked me for the extra time he had to spend with family.”6

As physicians, we may not have chosen the course Dr. Chan did; nor would all patients choose to continue battling their terminal illness after all realistic hope of cure or remission is gone. And, to be clear: any mentally competent person can refuse treatments that are unlikely to be of benefit (or are simply not desired) during one’s final days. Perhaps that is the wiser course for most—but not all–patients.

And yet, I believe Dr. Chan exemplifies the best of Hippocratic medicine: listening carefully to the dying patient; offering one’s best medical advice; and then providing diligent care throughout the final days of the patient’s life. Most importantly, Dr. Chan’s account vividly illuminates the concept of “life with dignity”—the conviction that patients and physicians together may bear even the most harrowing circumstances at the end of life.

Dr. Chan’s case and Hilary Lister’s life provide us with counter-narratives to the all too prevalent notion that “death with dignity” is synonymous with “assisting” patients in ending their lives. Dignity comes in many forms, and for some patients, it means seeing the dying process through to its end, come what may. As the poet Dylan Thomas famously expressed it:

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.7