Could we ensure that patients can always choose care that matches their values?
What happened to Judy isn’t rare, but it doesn’t have to be this way.
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.
Judy’s story didn’t have to end this way.
New technology can offer people with serious illness the possibility of extending their lives with a good quality of life, in ways never before possible. But when the technology doesn’t work the way everyone hopes, pivotal medical decisions need to be made. Those moments are when a patient’s values—about how much they are willing to go through to live longer—ought to shape that patient’s medical care.
How could Judy’s story have ended differently?
If Judy had talked to her daughter about what was most important to her, and gave her daughter permission to make those decisions if she could not; if Judy’s clinicians had been skilled enough to draw her out even though she was fearful of talking about advance care plans; if Judy’s health system had ensured that clinicians were trained to communicate, and provided easy-to-access electronic records of these conversations; and if specialist palliative care had been readily available—Judy & her daughter could have remembered that Judy said that she wouldn’t ever want to live in a nursing home. Then they could have created a plan with the critical care team to focus on Judy’s comfort and function, and fulfilled her wish to be at home so that she could spend her last 2 weeks in her own easy chair, with her dog and her best friend Marge by her side.
What would a different ending require? Here’s how we could rewrite Judy’s story.
- Every patient undergoing a high-risk procedure would prepare with discussions with their family & clinicians about what if things go well, and what if complications happen
- Every clinician involved in high-risk procedure care would be trained in how to communicate with empathy and honesty, even when patients are fearful.
- Every critical care unit would have ready access to palliative care specialists for situations that became unexpectedly complex.
- Every electronic medical record would contain some record of what a patient said about their values and goals.
Let’s work together to improve the experience for people with serious illness.
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