“Death would not be called bad, O people, if one knew how to truly die.” — Nanak
In 1983, Nancy Cruzan’s car accident had her on life support for the next eight years. Her parents petitioned the US Supreme Court to remove her feeding tube but were denied. However, in a landmark decision, the court ruled that competent adults had the right to refuse medical care under the US Constitution. In December 1990, her family was finally allowed to remove her life support. Nancy experienced a bad death by any measure.
In her Op-Ed, The Long Death of Nancy Cruzan, Ellen Goodman claimed: “Her death did not come gently to any of the Cruzans. Nancy came to represent the unintended consequences of technology, the side effects of our best intentions, and the cruelty of our modern medical mercy. She came to represent something worse than death.”
Forty years later, people are still confused about their medical rights. Recently, a friend’s patient said she wished she did not “have to have” another round of chemo. The woman said she just wanted to be able to enjoy this one last summer, but with chemo, she would be sick all the time, ruining everyone’s summer. My friend asked why she thought she “had to have it,” and the woman said her oncologist would be “upset if she didn’t.” She knew the cancer was killing her, and more chemo would not do her any good. However, her family insisted she needed to “keep fighting.”
I imagine what her summer will be like without chemo. She will be free to enjoy it with a bitter-sweet poignancy knowing it is her last. She can sit by the seashore, feel the sun on her face, breathe the salty air, and listen to the song of the waves. Rather than spending her summer dealing with the side effects of poisons, she can spend quality time in the time she has left. She can have heart-to-heart conversations while gently preparing her loved ones for her eventual departure so no one has any regrets or leaves anything left unsaid. Opting for the promise of summer rather than the rigors of chemo, she can create many happy memories that her family and friends will cherish long after she is gone. She can make the most of her time left by letting nature take its course. The choice is a trade-off, less quantity of time but often more quality. Most would describe that scenario as a good death.
In late January 2022, my sister-in-law was diagnosed with stage-4 cancer in her lungs, which metastasized to her liver and bones. At first, some medico said she was “terminal” and suggested “comfort care.” Instead of meeting with a hospice team, oncology took the lead. Her oncologist “talked her into” the latest immunotherapy treatment, not a cure, but something to make him feel like they were keeping out death’s grip. Once she started the treatment in mid-February, he assured her and the family she would feel better and her appetite would return, maybe in “6-8 weeks.” Instead, the quasi-treatment only added to her suffering and delayed her going into hospice.
Her two daughters told me individually that they thought she should have been in hospice from the start. Instead of making the most of the time she had left, which is the promise of hospice, she told her girls she didn’t want to “disappoint her oncologist by giving up.” From diagnosis to death, it was two months. During those weeks, she was on infusions for a useless Hail Mary treatment, all of which robbed her and her family of precious time to talk about what mattered most. Her final wish was to go to the beach and hug her grandkids, but the choice to have infusions robbed her of these simple pleasures.
She went into the hospital again for a severe breathing problem brought on by yet another pneumonia. The ER attending said, “The tumors were taking over her lungs, and her death was imminent.” He could see how she was struggling and suffering. She went into hospice that afternoon. Her daughters told me they wished the oncologist had told their mom the truth and not “lied about some miracle therapy.”
Dr. Atul Gawande, in his seminal work, Being Mortal, talks to the widower of his cancer patient, Sarah, a new mother who died from lung cancer. Dr. Gawande told the husband he regretted telling them a scheduled experimental lung cancer treatment might also cure her thyroid cancer. He says he regrets it “because I knew it was a complete lie. I just wanted to have something positive to say.” Sarah spent her final week enduring brain radiation. Her husband regrets “chasing one useless therapy after another,” hoping for that elusive cure but, in doing so, sacrificing any quality time they might have had as a family. My friend died in the hospital two days after going into hospice, with her family around her, but everyone had a bad death.
As I write this blog, I hear news from an old friend of her husband’s passing of pancreatic cancer. “Since it had already metastasized, he/we opted for no oncology intervention… it would only prolong the inevitable. He said, I have been handed a death sentence, and I don’t want to be a guinea pig; he wanted, and I agreed to, home hospice care. On the 19th day after diagnosis, he peacefully passed.” I hope that when it is my time to go, I will face it with the same courage and grace as my friends’ and not chase illusionary treatments designed to extend my life without gaining any quality. His death was unexpected and tragic for this loving couple, but they faced the challenge head-on and spent his last days at home together; in my opinion, a good death.
Choosing the fork in the road as my friends did, I hope I experience a peaceful death at home, on my own terms, surrounded by my loved ones. How we die will be the last important decision we ever make.
Ellen Goodman’s Washington Post article, The Long Death of Nancy Cruzan:
Dr. Atul Gawande’s Frontline: Being Mortal
Althea Halchuck, EJD, CT, BCPA
althea@ewpallc.com
