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!

Wednesday, December 7, 2016 by Meredith MacMartin ·

Saturday, December 3, 2016

In the Company of Death; In Consortium Mortis

By Mark Ligorski

#1.  Beginnings

Just like in superhero movies, there is always a back story.  This is mine.

After graduating medical school in 1981, I went to work at St. Vincent’s Medical Center on Staten Island for the next two years, the first spent in rotating through the different areas of medicine and surgery and then a year of Internal Medicine.  100 hour work weeks were typical, with on call shifts every 3rd or 4th night.

People stayed in hospital for weeks at a time; there were still wards with four to six patients. Intensive and cardiac care units were still pretty new.  The Karen Ann Quinlan case was settled just a few years before and there was no such thing as Do Not Resuscitate or Advanced Directives.  The first commercial edition of Our Bodies, Ourselves was published in 1973. Survivor’s song “Eye of the Tiger” was number one that July.

This was just before AIDS and MRSA.

This was before managed care and none of us knew or paid attention to how much things cost.

This was the world that I walked into, holding my white coat and stethoscope; talismans to keep me safe. I was clueless, frightened, and excited.  I remember one of my first patients, a middle aged gentleman. I went in to introduce myself, like I was a waiter at Red Lobster, “Hi, I’m Mark, I’ll be your doctor today.” I asked him to call me Mark.
He said, “Yes, Dr. Ligorski.”
“No, call me Mark.”
“Yes, Dr. Ligorski.”
I began to understand that he needed this 20-something kid to be fully invested with the power of the craft. He needed my white coat as much as I did.

I don’t remember anyone’s name. It’s not that I didn’t care about my patients and their welfare; I cared a lot and so did my fellow students, interns, and residents. But we were coming face to face with what the Buddhists call the “divine messengers”: old age, sickness, and death. We were supposed to take care of them, learn and embrace them, but also defeat them. Insofar as they frightened us, we saw them as failings or shortcomings, and we transferred that failure onto our patients, i.e., there was something wrong with them if they had gotten sick. We somehow had a pass. We lived in the Valley of the Shadow of Death but were not touched by it. I don’t remember any of my colleagues getting really sick, but I suspect we would have not been kind to them in their sickness.

Code: our euphemism for a sudden cardiac arrest. As if you didn’t have enough to do in being awake for the next 36 hours; if you were on call, you were on the code team. If a code was called, over the PA system and on your pager, you dropped everything and ran to where the code was taking place. No elevators for us, you bounded up the stairs. I don’t know how many of them I went to; I only know one thing: no one who was code status survived. I remember one New Year’s Eve where five people died. I have to say that there was something exciting about it. Here was the literal struggle of life and death: excitement, activity, choices about drugs, chest compression, defibrillators, really long and scary cardiac needles, pacemakers, blood. I remember after one code looking down to find a needle stuck in my arm. I had no memory of it getting there and certainly no pain.

But after a while, regardless of the excitement, the certainty of a violent death at our hands began to weigh upon us. We were stuck in a system that did not allow us any leeway: everyone who had a cardiac arrest had to be attended to. It was the law.

It was a difficult system that caught all of us in a loop, doctor and patient and family. We knew that, more often than not, what we were doing was not really a kindness. There had been this general process of moving the terminally ill out of the home and into the hospital. In a culture that was increasingly directed towards staying young and beautiful, denying the realities of old age and sickness, pretending that we could cheat time and entropy, we were shielding our eyes from things we didn’t want to see. Where once the care for the elderly was the province and responsibility of families, this was now moving to the medical community. It became our job to be with them at the end, and unfortunately that end, in the form of the code, was not really pleasant.

Those of us who chose this vocation to improve and save lives were challenged by a technology that had outpaced our morality. That uneasiness was not ours alone: sometimes patients and families would look at this medicalization of the end of life and ask us why we were engaged in behaviors that were futile at best and cruel at worst.

The conflict and ambivalence was universal and reached out in many directions. There was a rumor going around the hospital that Charles Hynes, the District Attorney for Brooklyn, threatened the medical community. If he discovered evidence of us not doing everything to keep people alive, he would bring us up on murder charges. I don’t know if anyone was brought up on charges, I’m not even sure the story was true, but we certainly believed it, and it was consistent with the prevailing rules of the time.

I was traumatized by my time in medical/surgical residency. Years later, I was in KMart and over the loudspeaker the voice called out, “Mr. Jones, code blue, aisle 7.” In pure PTSD response, my heart started racing, and I was about to run to aisle 7 before I remembered I was in KMart and not in the hospital. I was not alone in this. In a survey of 1,100 doctors, 88.3% of doctors said they would choose a do-not-resuscitate or “no code” status. Only their own experiences could have put them off choosing this for themselves.

In 1990, the Federal Patient Self Determination Act legalized what we needed for a long time: a patient’s right to choose their own treatment, including the ending of that treatment. No longer were patients and doctors locked into a death spiral where more and more was done for less and less benefit. Now there was the chance to approach the end of life in a thoughtful, compassionate, and reasonable manner. But this wasn’t easy.

The first modern ventilator, the Bird Universal Medical Respirator, was introduced in 1958. It was almost 20 years before the Quinlan case was ruled on and 30 before the Federal Patient Self Determination Act was passed. It seems to take a generation for ethics to catch up with the technology we create. Even now, we are still in the early days of developing an understanding, in both the medical and lay communities, of how to stop treatment when it isn’t needed, and let people day with ease, calm, and graciousness.

I hope this series of essays will illuminate the process of old age, sickness, and death, and the many ways it manifests. These issues are too often relegated to the shadows. In the dark places of our hearts and minds they become monsters to frighten us. But light erases shadows and monsters, leaving brightness and clarity.

Dr. Mark Ligorski is a psychiatrist in private practice in Danbury and Norwalk, CT.  He is also the psychiatrist for the Regional Hospice Center for Comfort Care & Healing in Danbury, CT. An Assistant Scoutmaster for many years, he and his son climbed Mt. Kilimanjaro twice. His mother, who does not approve of mountain climbing, still wishes he had become a real doctor.

Saturday, December 3, 2016 by Pallimed Editor ·

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