Judy’s tried to prepare for a heart operation. But things didn’t go as she planned.

Judy, 75, owned and ran a local restaurant, retiring with a small nest egg that she hoped to pass on to her grandchildren. She chose a health insurance plan with a large deductible because she felt basically healthy and it was what she could afford. One day after a church potluck, she felt sick to her stomach. She thought it was the potato salad, but it persisted. Eventually, she found out that it was a heart attack.

Over the next two years Judy had a series of heart attacks, resulting in what her cardiologist called refractory angina—chest discomfort triggered by the smallest activities, like eating, picking up her granddaughter, or walking to get the mail. As a result, Judy developed severe anxiety, but the anxiety meds made her feel spacey and forgetful. Her quality of life rapidly decreased. Judy knew she had to address her heart problem.

Judy had lots of clinicians, but they didn’t cover what to do if things didn’t go well.

Judy and her daughter did a lot of research on their own to find the best place to go. The hospital websites were reassuring. A top-rated cardiologist told Judy that she needed cardiac surgery, and that she could see the surgeon later that day. The surgeon told Judy that her surgery was ‘high-risk,’ but that it would improve her quality of life. Judy said yes, thinking, “What do I have to lose?”

When asked about advance care planning, she told a nurse coordinator that her goal was to get back to her usual activities and that she was willing to take meds, go to rehab, and change her diet. The nurse coordinator didn’t feel that Judy was ‘ready’ to talk about what would happen if things didn’t go well, so she didn’t ask her more about it.

She had to tell her story over and over. Were they listening?

Judy’s surgery and post-op care went smoothly—initially. But on post-op day three, Judy had a large left-brain stroke, and was unable to talk or move her right arm. The neurologist determined that thrombolytic therapy wasn’t possible and suggested a feeding tube. During the feeding tube placement, Judy had another small heart attack, so needed another catheterization, but that tipped her into kidney failure.

During this string of hospital events, Judy’s daughter became exasperated—every new consultant asked her to retell the whole story, and most of them seemed to know Judy only as a collection of diagnostic labels. None of the clinicians talked to Judy about the decisions that would need to be made if things didn’t go as planned; the health system didn’t incentivize these conversations; and quality measures didn’t encourage them.

When the doctors talked, to Judy’s sleep-deprived daughter, they skipped Judy’s values.

One day, while Judy was asleep, a palliative care consultant showed up, and her daughter was flabbergasted. In her mind, there was one reason for this: the doctors were giving up, and they hadn’t wanted to tell her. “I don’t think we’re ready to talk to you,” her daughter said. “Mom’s a fighter.” When Judy aspirated part of a nutritional drink, she became hypoxic, and was transferred to the ICU. When the critical care team asked what Judy would want, her daughter said that she wanted to return to gardening and living independently. The intensivist shrugged his shoulders and said, “I guess that means do everything.”

In the end, what Judy would have wanted never got discussed.

In contrast to the well-organized sequence of events leading up to Judy’s surgery, pivotal medical decisions that would determine Judy’s experience in the last phase of her life were now left to a default pattern that Judy had never heard about—and wouldn’t have wanted.

Judy’s daughter didn’t know to ask for Palliative Care , the critical care staff didn't think to offer this consultation, and the health system hadn’t made palliative care consultations easily accessible.