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by Christian Sinclair (@ctsinclair)

As another year starts winding down, it is always a good reminder to take stock of what you value. After 319 weekly chats in 6.5 years, #hpm chat is going on our first ever hiatus. This was a hard decision for Meredith MacMartin and myself, the two lead co-moderators. We have had numerous conversations about the sustainability of weekly #hpm chats going into 2017 with only two co-moderators. There is a lot of work that goes into developing weekly programming, making sure the hosts are ready, ensuring diverse topics and hosts, editing blog posts, and promoting the chat. And that is all before the chat gets going. So yes this is a lot of volunteer work, but…

We really love #hpm chat. And I know a lot of you love it too. It has been a great place to get inspired, learn about a new resource, become enlightened on a different way to look at a problem, and most of all to talk with friendship among #hpm chatters has been nothing short of amazing for the past six and a half years.

We really love #hpm chat. And I know that a lot of you love it too. It has provided professional and personal inspiration, access to new resources, different perspectives on problems we all face, and the opportunity to talk and build friendships with fellow #hpm chatters. That opportunity has been nothing short of amazing for the past six and a half years.

When the idea came up to do a weekly tweetchat around hospice and palliative medicine in 2010, Renee Berry and I were inspired by Dana Lewis and her #hcsm (Health Care in Social Media) chat on Sunday nights. At first, it was Renee and I leading nearly every chat all in an effort to teach clinicians about how to use Twitter, and to leverage this relatively new medium to educate the public about hospice and palliative care. Over time, more volunteers joined us as hosts and moderators as the community grew, and as

I do want to take a moment to recognize the other moderators that helped us over the years. A big thank you to Renee Berry, Alicia Bloom, Niamh Van Meines, Ashley Deringer and Meredith MacMartin. Our have been great partners and #hpm chat would not have had the impact without your countless hours of volunteer work and enthusiasm to spread the word about #hpm chat.

Meredith and I have some ideas on what we may want to do, but it may take some time to ramp up new co-moderators and set our new programming in a sustainable way for volunteers. We may be reaching out to some faithful chatters to get your take on the future of #hpm chat as well, so keep an eye out and follow the @hpmchat account on Twitter.

Christian Sinclair, MD, FAAHPM is the co-founder of #hpm chat and current co-moderator.

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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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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.