Wednesday, December 7, 2016

Decision Making at the End of Life: Joint #patientpref and #hpm Tweetchat

By Meredith MacMartin

Fred was a sick guy. He had been diagnosed with COPD years ago, and more recently developed heart failure, and although he and his wife Nancy tried to stick with his medication regimen and monitor his salt intake, his shortness of breath had been making it harder and harder to even get around the house. He followed regularly with his primary care doctor, and talked about what he would want in terms of medical care if and when he got sicker. His wife knew that he didn’t want to go to the hospital if it could be avoided, and that he definitely did not want to end up in an ICU on a ventilator, or getting CPR. In addition to having those conversations with his wife and PCP, he had even had an portable DNR form completed. Fred, his family, and his physician did everything they could to prepare for the eventuality of his disease worsening.

One morning, Fred’s shortness of breath got worse. This happened from time to time, and usually resolved with use of his rescue inhalers; Fred used his albuterol as often as he could through the morning and into the afternoon. By late in the day, his breathing was markedly worse, to the point that he was so short of breath he couldn’t get up off the couch and could hardly talk. Nancy had been asking him all day if she needed to call his doctor and had waved her off, but now, with Fred gasping for air, Nancy knew she had to act. She called 911, over Fred’s objections. EMS arrived, and after a rapid assessment realized that Fred was in serious trouble. They told Fred and Nancy that he needed to go the ER right now, Fred was in no position any longer to argue and Nancy was terrified. She climbed into the front seat of the ambulance and rode with them. En route to their local hospital, she heard a commotion in the back of the ambulance, and looked back to see CPR being performed on Fred. She didn’t know what to do or say. She watched as the two first responders worked on Fred and eventually regained a pulse.

Between the time Fred arrived to his local hospital, and the time of his transfer to our tertiary care center, he had undergone a total of four rounds of CPR, totaling more than 20 minutes of resuscitation. He was intubated, and on multiple vasopressors. He was placed on our hypothermia protocol for neuroprotection, but despite discontinuation of his sedating medications had shown no sign of spontaneous movement or response to stimulus. Nancy and their son met with ICU team, who let them know that although Fred was currently relatively stable, there was a high level of concern for very serious anoxic brain injury. The ICU team reviewed their options: continue aggressive care on a time-limited basis (another 24-48 hours) to watch for changes in his neurologic status, or withdrawal of life-sustaining treatment now. Nancy didn’t know what to do. She felt intensely guilty that she had allowed this to happen to Fred, after they had talked about his wishes. At the same time, she hoped desperately that he might be able to beat the odds and pull through this. She felt overwhelmed by the immensity of the decision that faced her.

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This case is adapted from a recent patient encounter. So often we read about patients and families who put off talking about goals for end of life care, but here is a case in which Fred and Nancy had done the hard work of planning. He even filled out a portable DNR! And yet, Fred died in the ICU after 48 hours of aggressive care. His wife Nancy loved him, and wanted to do the right thing for him, and his ICU team had an early conversation with her about the likely outcome. Why then, did Fred end up getting medical care that was different than what he had planned on?

Making medical decisions is often a messy endeavor. Uncertainty and emotional response to illness can combine to make even straight-forward discussions feel overwhelming and traumatic. In the setting of serious illness, or at the end of life, the stakes get higher and so the intensity of the decision-making is increased as well. Join us for a special #hpm and #patientpref joint Tweetchat to examine the process of making decisions at the end of life, looking at the current state of affairs, barriers to success, and best practices to supporting patients and families at this vulnerable point in their lives.

Topic questions:
T1: How do people make decisions at the end of life? Who is actually making those decisions, and what do they find most helpful? How helpful is pre-planning, really?

T2: What are barriers to good decision making at the end of life?


T3: What are examples of ways that decision making at end of life can be done well?


We’ll start the conversation on Wednesday December 7 12pm ET with #patientpref chat, and continue at 9pm ET with #hpm. Join us for one or both chats, and see how the conversation evolves!

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