The following editorial is from the March 2019 issue of the American Journal of Bioethics.
by William H. Colby, JD
On March 9, 1988, we started trial on Nancy Cruzan’s case in the three-story limestone courthouse on the town square in Carthage, Missouri. One of the many issues we’d end up talking about in the days and months of legal proceedings that followed was withholding versus withdrawing a feeding tube, and how those two acts should present the same legal and ethical challenge. We cited pages 75–77 of the President’s Commission Report titled “Deciding to Forego Life-Sustaining Treatment,” which the government had published 5 years earlier. The reality is I did not really understand exactly how complex that assertion was back then. As the two lead articles in this journal suggest, the questions remain challenging today, 31 years later.
Consider the path that the Cruzan family had to travel to reach the U.S. Supreme Court with their request to withdraw their daughter’s feeding tube. On January 11, 1983, Joe Cruzan, Nancy’s father, received the phone call in the night that all parents fear, the one telling him that his daughter had been in a serious car accident and might not survive. Nancy’s family spent the next several days in the hospital waiting room, not wanting to risk going home to shower, hoping and praying for good news.
All kinds of medical invasions of Nancy’s body were taking place in those first hours—IVs, stitches, transfusions—with little effort spent trying to obtain consent from anyone. The law presumes consent for emergency procedures because it presumes all patients want that chance at recovery in emergency settings. On February 7, almost a month after his daughter was admitted to the hospital, Joe Cruzan finally signed a piece of paper titled “Hospital Consent to Operation, Anesthesia and Other Services, to consent to surgery”.
Later that day Nancy was wheeled to an operating room, put under anesthesia, and surgeons made an incision to enter Nancy’s peritoneal cavity and “insert a #20 short-arm T-tube,” commonly known as a gastrostomy or G-tube. The form Joe had signed to consent to that surgery said: “The nature and purpose of the operation, possible alternative methods of treatment, the risks involved, and the possibility of complications have been fully explained to me. No guarantee or assurance has been given by anyone as to the results that may be obtained”. Of course, no one could have “fully explained” the years of complication ahead as a result of that decision. Likewise, it would have been difficult to explain exactly what Joe had consented to: surgery to implant the gastrostomy tube only? A time-limited trial of the feeding tube to see whether Nancy could recover consciousness? Thirty years of unconsciousness in a long-term care facility being tube fed because the state of Missouri would insist that once a G-tube was in place it could never be removed?
Years later, once the trials and public attention began, Joe told NPR correspondent Nina Tottenberg: “We didn’t read anything we signed, if they said we needed to do it, we signed it. When it’s just been three or four weeks after the accident, you think, you know, that there’s a good chance she’s going to get better”.
Nancy Cruzan’s surgically placed gastrostomy tube, together with high-quality nursing and medical care, kept her alive for many years, but not living any kind of life that her parents thought was meaningful, or was one she would have chosen for herself. Her surgery in 1983 involved an invasive, fairly lengthy procedure. Advances in medicine developed that made tube feeding far more commonplace—a once-infrequent major surgery became a simple, office-based procedure.
By 1999, 34% of severely demented nursing home patients had PEG (percutaneous endoscopic gastrostomy) tubes in place. One of the Cleveland inventors of the PEG tube, Dr. Michael Gauderer, estimated in 2005 that doctors in the United States inserted about 300,000 PEG tubes annually, with 225,000 of those in patients older than 65 years (Fritz 2005). An ethicist in Cleveland worried: “It’s easier to put the PEG in than it is to sit down with the family” and have hard conversations about aging, dying and the goals of medicine. Dr. Jeffrey Ponsky, the other 1979 inventor of the PEG tube, said: “Once they’re in, it’s so emotionally difficult to take it out and let someone die” (Fritz 2005). Dr. Ponsky found himself in the news 26 years after that first PEG tube surgery, discussing his invention, as the Terri Schiavo case captured the national attention. He said that they did not envision that their procedure, originally created to facilitate pediatric recovery, would be used for end-of-life care—it “never entered our minds this would produce such a massive ethical dilemma”.
Advances like the one from Nancy’s invasive surgery to the PEG tube have happened in many areas of medicine. Those advances in some ways make end-of-life discussion more technological and complicated, trying to understand the potential benefit of increasingly intricate surgery, drugs, and treatments. But in other ways, the questions that should be answered are unchanged from 1983, and families can answer these questions as well as medical providers: What does a meaningful life look like, when can medicine help serve our purpose, and when does it not help at all?
My approach may sound simplistic. But when families face profoundly difficult questions about withholding or withdrawing care, if the focus is kept on the goal of any treatment and the wishes of the patient and her family, and the discussion is thorough and thoughtful, all involved usually reach a decision they can feel some comfort in as the decision their loved one would want. Even then, decision making is profoundly hard, as it probably should be, but careful communication leads to consensus most of the time.
I hope that when my time comes, the main focus in that hospital room is not with a doctor pointing to a monitor, telling my family what the beeping means about the status of one of my many aging organs, though they need to know that information, of course. Instead, I hope she is talking to them about the goals of my care. In this talk, respirators, blood pressure medicines, feeding tubes, antibiotics, any intervention, will carry a similar weight, and my family will know my main question: Can the technology help me to live life again on my terms, as I’ve defined those terms at that age? The “right decision” may not be obvious, but my family will know unequivocally that whatever they decide, I am okay with that decision, because I know they are trying to do the best they can.