#palliative

I knew I’d enjoy my palliative care rotation but I didn’t expect it to actually start making me want to do palliative care! Friendly, relaxed environment, long chats with patients, most of the medicine involved is common sense, getting to know patients over a (usually) long period of time... it has a lot of my favourite things!

"...although his code status was DNR, he wanted whatever life-prolonging treatment was available to him. This is not consistent with #comfortcare."

Anna Stecher, MD, opened the conversation about goals of care.

I mostly keep it positive on this page but I’m feeling defeated. I tried to run today and it didn’t go well. I can think of a million reasons why: worked all day on my feet, ran 5km yesterday, didn’t drink enough water, tried not wearing my glasses (felt unstable/ sort of dizzy), emotionally strained from a work situation, didn’t sleep well last night.. etc. I’m still disappointed though. I would start to jog and had to walk really frequently. My legs physically wouldn’t go. I stopped pushing myself about half way through and still managed to get about a 40 min workout in, but it wasn’t the run I wanted.

Something that you can never truly appreciate or understand unless you've been there, unless you've held their hands and been present for that final moment.

It's not quite a feeling, or an experience, but some how, a mixture of both. There is a calm that settles in that can never quite be explained.

I don't know if it's the same for everyone, or if it's just a few special people that know what I'm talking about, but it's like you can sense that moment, not the one where the pulse stops and the breathing ceases but the moment when soul and body some how become separate.

There is a moment when some how, you just know, that they have left. And you can feel the peace, the release of suffering, the tranquility that comes with finally being free.

Death used to be such an uncomfortable concept to me, it was frightening and unsettling, I never truly understood it. But working in health care, being forced into a world where death and dying is a daily part of the job, has changed all of that.

Tonight, I held the hand of a man who was alone, and dying. For two hours I sat beside him, and held his hand. I sang to him, songs from his past. And I watched him progressively change, moment to moment, going from fearful and hurting, to peaceful and accepting. His eyes locked on mine. His hand reaching for mine. And then he closed his eyes, and it was over.

I swear I heard him leave. A gust of wind, a flicker of the lights, and all of the sudden, the man I had been with, the man who had been holding my hand, was gone. And all that was left was a body, a vessel, a corpse, weathered and torn, a life lived but still, once he was gone, it was just a body.

The ED is always a flurry of activity when a sick patient is coming in. "Mid 80's, found at home unresponsive in bed.  Last known normal last night. Heart rate 150-180, looks like a-fib. Sats were 80% on room air, 97% on a non-rebreather.  BP 200's systolic.  Fingerstick 130.Unresponsive, not moving at all, but breathing spontaneously" The usual preparations begin to happen - the resident and charge nurse are discussing where to place the patient, respiratory is called, and the airway cart is wheeled into view. "I'm holding on airway intervention - family says the patient is DNR. They're following by private vehicle, and they have advanced directives - not sure how long it's going to take them. See you in 5." 

As a resident, I know what I would have been thinking. Might be a head bleed, maybe a stroke.  Doesn't sound like tPA is indicated, but what if EMS got the wrong info? Where was she found again? Should I make this a trauma - she might have fallen. Sounds like GCS is around 3, we should intubate when they get here and head to CT.  did anyone call respiratory? Where's the airway cart? In a few months, It will have been 10 years ago that I started my training in EM. As a resident, my focus was on my training.  Procedures and sick patients were always a thrill, and I wanted to do things.  Maybe this would be an airway.  But I'm coming up on 10 years in - far from expert (if such a thing exists in our field), but enough experience that I have changed my perspective. Instead, my thoughts wonder to if we should do anything.

I immediately think back to my grandfather.  He was a longtime smoker and construction worker before OSHA was a thing.  He had his first respiratory arrest in the early 80's, and barely made it off the table when he ruptured his AAA in the mid 90's.   By the time 2004 hit, he had a fib, a pacer/defibrillator, was on chronic oxygen, and lamented that the doctors had done a terrible thing. "They've created monster - I can't die." I also think back to the patient who got intubated in a similar situation when I was a resident, who, as it turned out, actually had a blood sugar in the 20's. Better check an iSTAT when they get here.  I also think about the consequences of what I might do. What if the patient does have a catastrophic intracranial insult, and we intubate them and set them down a path that leads to a few days in the ICU, a bed taken up for futile care,  and a family given false hope.  "They've created a monster - I can't die." 

The patient arrives.  EMS is giving their report. The family is not here yet. The usual activity happens - IV, O2, monitor, iSTAT, and the inevitable elephant in the room. "Should we intubate? GCS is 3, vitals are unchanged. Upgoing babinski, deviated gaze, hypertensive.  What if EMS was wrong, and the family wants everything done?" New nurses and residents alike are poking their heads in to see what is going on in the resus room.  6 years ago, my answer would have been simple: "Let's intubate." Thousands of patients later, I know we have some time. "Let's hold off.  I want to talk to the family. Sats are good. I know the book says intubate, but we have time to go to CT." I have no evidence for this. Call it gestalt, intuition, or pattern recognition, but I feel like we have time - and we need time.  I know a DNR has nothing to do with intubation. I know I can always pull the tube.  But something tells me we have time, and what this patient needs is not an endotracheal tube.  

5 minutes later, the family arrives as we review the patient's stat CT images.  It is clear - a non-survivable catastrophic neurologic insult.  We speak with neurology, who confirm our diagnosis.  And now, the hard part. The family members in the room are devastated.  the patient was active, and just last night was talking with the family about how busy they were.  The usual questions follow. "Were there any signs we might have missed? Isn't there anything we can do - [the patient] was completely normal yesterday. One of the family members is a physician. As most doctors do, the family looks to them for guidance, and they try to play the role of physician instead of being a family member.  This is how we deal with illness and death as physicians - a problem to be solved, people in need of our help.  "Should we do something about the blood pressure, or the a-fib? What about some sort of neurointervention - I know [the patient] isn't a tPA candidate, but isn't that still an option?" I know that this physician family member knows the answers to their own questions.  Eventually, they make the difficult transition from physician to family member, as they understand where things re going.  

I watch with pride as my upper level resident switches into counseling mode. The family members seek answers. Did they miss something? "There is nothing you all could have done, and no way you could have known. This is not your fault." "Is [the patient] feeling any pain?" "I do not think so, and we will do everything we can to ensure [the patient] is comfortable." "[The patient] would have wanted to die at home - not in the hospital, and certainly not hooked up to a bunch of machines.  Can we take [the patient] home?" My resident calmly discusses each question with the family, patient and understanding.  I interject where I feel I can add to the discussion. Soon, it seems the family has come to terms with what is going on, and are beginning to accept the outcome.  "Please just make [the patient] comfortable - we just don't want any suffering."

We tend to spend a lot of time wrapped up in what we perceive as the heroic nature of our jobs. The cric, the life saving thoracotomy, the swift septic resuscitation or STEMI activation that saved a life.  I see it every year in the personal statements for our residency applicants. We get wrapped up in our own self-important pursuits as well.  Why didn't that paper get accepted? How can I get that professor title? Why wasn't I invited to give that lecture? 

Again, I think back to my grandfather.  My mom often recounts what his cardiologist told him during his last hospital stay. "You know Bob, sometimes we have to get to a point where we acknowledge that the medicine and the treatments are causing you more misery than quality life.  If you are tired of suffering, it is ok. We can turn off the pacemaker-defibrillator, and keep you comfortable. We do not have to keep doing this - it is ok to die." My grandfather was worried about the hurt he would leave behind - he had a wife, three kids, and grandkids who all wanted to see "Pop" stick around for as long as possible.  "This isn't about them, Bob - it's about you.  They will all be fine, and they all want what is best for you." We were there as Pop passed away peacefully later that night.  I'm sure that cardiologist saved a number of lives that year, and took care of many patients.  But to my family and me, Pop was his most important patient that day, and to us, the most important patient he had ever cared for.