In Lieu of Flowers…

I started hospital stroke service on a Monday morning in mid-May. One of the 18 patients I met that day was Mary Rowan, a 91-year-old woman, who 4 days previously experienced a large right hemispheric stroke. She was lying in bed, both hands in mitts, with a feeding tube in her nose. Her son was leaning over her bed slowly placing bits of ice chips in her mouth. She was repeatedly asking for “water.”

Ms. Rowan was a gentle, sweet woman described as an “earth angel” by her daughter, Gina. She was born in Alberta, Canada, in 1918 and settled in Rochester, New York, where she and her husband had 6 children and eventually 27 grand- and great-grandchildren. By the time I had met Ms. Rowan, she had received the best stroke care 2010 had to offer. She was emergently transported to the hospital, received thrombolytics and all the other evidence-based performance measures in a timely fashion. I met Ms. Rowan 2 days after a feeding tube had been placed—and replaced 4 times because she kept pulling it out.

When I walked into Room 25 and met Ms. Rowan and her family, the suffering was palpable. Not just the visual of a patient mitted and restrained against her will, or the heavy strips of adhesive up and down the nose and cheeks to keep a nasogastric tube in place, or the forlorn and haggard look of every family member upon entering a room. Rather, a disquieting distress of a forceful unraveling of how things were supposed to be, and getting caught in the rip-tide of acute care medicine.

“She does not want a feeding tube,” said her son as he looked up at me from the other side of her bed. She even had advanced directives stating “no artificial nutrition.” But given the uncertainties in the early days of a stroke, it was reasoned that a trial of nasogatric feeding would respect the spirit of her directives, while giving her the best chances of recovery. What was clear was that she did not want “long-term” feeding via a PEG tube.

Over the next 3 days, she remained quietly confused and although her left-sided strength slightly improved, she remained severely dysphagic with profound left-sided neglect. During one of my visits, I said to her son, “We need to discuss your mother's options.” He simultaneously looked surprised and anguished, as if there were no options. He said, “This is awful. I will call my brothers and sisters.” Within 24 hours, all 6 children were present for a family meeting: 5 in-person and 1 by teleconference from 2000 miles away. We met in a quiet room and exchanged stories. They shared stories with me about their mother—that even though money was tight when growing up, she made them feel like “the most special kids in the universe.” They called her “a little mini St. Francis of Assisi”—she loved nature and all creatures adored her. It was no surprise then that each time I walked into her room, a different child was distressingly hunched over her bed rail hand-feeding her small chips of ice.

It was also clear that she never wanted to be debilitated, dependent, or die on “machines,” like her husband, their father, did years earlier. I explained to them what life would be like for their mother with continued treatment—that she would remain fully dependent on others, and that she could still recognize them and potentially find peace in their presence.

What I was less certain about, was how long she would live, and how she would die. I acknowledged this uncertainty, but told them I thought she had “weeks to a month or two” but one could never be certain “as it may be shorter or a little longer depending on how things go.” When I told the children we had the option of removing the nasogastric tube and allowing her to eat at her own pace, several responded, “But we can't just starve her to death.”

There were risks in letting Ms. Rowan eat at her own pace. Her nutritional intake would be low, she could aspirate, and she could transition to an actively dying phase within days. On the other hand, a small amount of nutrition and hydration might allow her to gain some strength and live for weeks to months—not to mention being comforting and freeing her from unwanted treatments.

Choosing not to be fed by artificial means is not starvation. This is the process of dying in the final stages of one's life. There is a naturalness to this process that many long for but never attain. I explained this to the children, including the possibility that continued artificial nutrition might improve the chances of surviving a little longer. “But that is not how she wanted to live,” her son said on the speakerphone as the other children nodded in agreement. By the end of the meeting, there was a tearful sense of resolution and relief. Later that afternoon, we removed the feeding tube, untied her mitts, and washed away the adhesive from her nose and cheeks.

Over the next several days, family and friends visited and reflected on the past. She was perfectly satiated with sips of water and small amounts of sorbet. It was in those days I learned most about Ms. Rowan—that she taught her children that riches of the pocket were not as important as riches of the heart, that giving was so much more satisfying than receiving, and that she loved being light-hearted, always dwelling on the good, the positive, and never the negative. During this time, she kept saying, “It's OK…good,” over and over again.

Everyone knew that we were taking things day-by-day, and family wanted to be with her “just in case it would be sooner rather than later.” As it turned out it was sooner. Six days after the feeding tube was removed, 16 days after her stroke, she died peacefully surrounded by her family. On May 29, Ms. Rowan's obituary was in our local newspaper and read, “In lieu of flowers, contributions may be made to the Sussman Palliative Care Unit at Strong Memorial Hospital…”

Three weeks after Ms. Rowan died, I participated in the first of three conference calls as a member of the Technical Expert Panel for Stroke Outcome Measures Development to discuss two new measures being considered by the Center for Medicare and Medicaid Services (CMS) for public reporting, one of which is the 30-day Ischemic Stroke Mortality Rate. By CMS's proposed standards, the care we provided to Ms. Rowan and her family would be considered a failure, as she died 16 days after she was hospitalized.

What will be the consequences of reporting ischemic stroke deaths within 30 days as medical failures? Will my efforts to adhere to evidence-based standards and promote error-free care be enhanced? (Possibly) Our evidence-based treatments do improve outcomes—that's axiomatic—but their ultimate impact on mortality is less certain. If the available stroke measures behave like other evidence-based measures (e.g., for myocardial infarction, congestive heart failure, pneumonia), the correlation of adherence, within the range of typical hospital performances, and short-term mortality is weak at best.

Would I have been more likely to fail Ms Rowan and her family and recommend that she continue artificial nutrition? (I hope not). Will my approach to patients and families, my prognoses, the words I chose, the recommendations I provide, be affected by knowing my hospital, my department, my stroke program, or I might get “dinged” for allowing the natural, less-than-than 30-day approach to dying? (Possibly) How much better health can be squeezed out of stroke patients by publicly reporting short-term mortality and does that benefit outweigh the risks of its polar opposite message?

We are beginning to learn how stroke patients die. Most die like Ms. Rowan, after a large stroke and deliberate decision to withhold or withdraw life-sustaining therapies—most often mechanical ventilation or artificial nutrition. These decisions are patient-centered in the purest sense and occur through a process of shared decision-making. Patient-centered care provides better care, improves well-being and satisfaction, addresses disparities, and improves overall value; it is also morally the correct approach. There are wide gaps between this ethical ideal to actual practice, however, which we are only beginning to understand. And I suspect that once this preference-practice gap narrows, short-term mortality measures for stroke may in fact increase, as studies have shown that the more informed and trustful patients become, the less treatments they desire.

What we do not know is how many patients experience inappropriate care before these terminal decisions are made and how important they are in determining overall disease course. Except for egregious errors in care, attributing early non-adherence of performance measures to mortality will be difficult, if not impossible. In the meantime, quality patient-centered care risks being held hostage by lack of evidence and the erroneous assumption that the majority of these terminal decisions are a result of inappropriate care earlier in the disease. There is a presumption of guilt when tracking and trending hospital-level mortality data, and this indictment, this feeling of losing even when you have won, will be felt by every stroke program and every provider who cares for stroke patients and their families in the final stages of their lives.

Until we are prepared to accept that for some conditions a higher short-term mortally may be better quality than a lower short-term mortality, I suspect the United States is destined to continue to publicly report short-mortality as a measure of quality. But the evidence-based medicine movement and the patient- and family-centered care movement are on a collision course—the ischemic stroke mortality measure just happens to be on the bus. The Affordable Care Act has codified the concept into law by creating the Patient-Centered Outcomes Research Institute, and economic incentives now exist for hospitals that meet quality standards of patient perceptions and satisfaction with care.

Ultimately, we need to decide what we want from our health care system and what trade-offs we are willing to accept from the publicly reported measures intended to motivate behavior of its major players. For the vast majority of patients and families with stroke, short-term mortality is not an evidence-based outcome, but rather a result of delicate, transparent, individualized, and dignified decisions of how one wants to live their lives. Patients and families understand this much better than most providers and politicians—like Ms. Rowan and her family. And as their voices are heard increasingly throughout the reengineering of our health care system, so too will the use of more balanced measures that truly reflect their underlying values.