"When we are dying"

We recently had an Hispanic man on our service. He was 41 and came to the hospital feeling tired and weak, and had a hemoglobin of 4.6.  It's a number that doesn't mean much unless you are familiar with hemoglobin numbers. It's a number for blood.  If the number is below 13 for men, he is anemic. Blood transfusions usually happen under 10.  As you can imagine - 4.6 then is VERY VERY low.  Although he was Hispanic, because the low blood count caused him to be quite pale, it gave a khaki/beige appearance to him. We did a lot of tests; the haunting suspicion was that he had myelodysplastic syndrome, a kind of precursor to leukemia. We did bone marrow biopsies, transfusions, and all sorts of blood tests. We got to the point we were ready to let him go home, needing for him to come back in a month for another bone marrow biopsy.  That's when it hit us - a kind of afterthought - this guy doesn't have insurance. In fact, he's not even a citizen, he's here illegally. How will he even hope to afford his bone marrow biopsy? Let alone treatments for his condition? The morning we discharged him from the hospital we spent some time reconfirming his inability to pay for services. In Spanish he told how he hadn't even been to see a doctor in years because he had no money. He knew something was wrong, and he was getting sick, but also knew he couldn't afford getting better. I can still hear his next words translated by a Spanish speaking resident, "The only reason we come here (the hospital) anyway, is because we think we are dying. Then the money doesn't matter because we will soon be dead" Does that seem right?  He is one of thousands, unable to get help in this land of plenty. He is one of many people sick, knowing something is wrong, who continue to be ill because they cannot pay to get better.  

There is good news for him, this single father of 2. The hematologists who do the bone biopsy are donating it for free. As for future treatment - I am not sure who will pay.

Bleed like stink

"They won't do a biopsy of the mass, those tumors bleed like stink"  This was the 3rd time in a week that I had heard this phrase - "bleed like stink". I try to imagine what this could possibly refer to. Unfortunately this leads to images of blood droplets micronized and floating in the air, being inhaled by the doctors and nurses by someone's bedside. NOT what it means.  Blood doesn't smell, and stinking doesn't seem at all related to bleeding.  The phrase is used to mean 'bleed A LOT', tons and tons...but why the phrase? It's one recognized widely, but who's ever said WHY?  I did some research.  It was tough to find - but here's what I know:

According to the Oxford English dictionary "like stink"  is a pretty generic modifier meaning 'intensely' or 'furiously'.  In other words its an expletive- "If I see a snake, I'm going to run like stink" -  The phrase 'mad as stink' came to be an alternative to saying 'mad as hell' in old English. Somewhere along the way, then, instead of saying bleed like hell - or bleeding intensely, bleed like stink came to be.  Interesting.

Thoughts on death

I wonder if we ever get used to death. I had a patient in the hospital on hospice...which means they are expected to die - they are 'in the process' of dying. From the moment he came in, he was basically unconscious and in no pain. It made me sad that the family wasn't around much, and he was so young- 40's.  Yesterday morning when I was seeing my patients, "rounding" we say,  I came into his dark room.  He was there, on a face mask for oxygen (just a cup around the chin that helps aim the air to the mouth). His eyes were closed, he was breathing hard. His arms were all puffy from too much fluid, so that when you squeezed his hand, you made a dent. If you don't know if they can hear you, I guess it's better to pretend they can, so I spoke out loud. But as I heard my lone voice speaking in this empty room, asking how he was, I felt a little silly.  Can you sense the end? There was nothing different about him at that moment than the other days I visited, but something in the air was charged.  I felt compelled to acknowledge this, "Reggie it's almost over, your suffering is almost done".  I patted his arm one more time and went on with my day. 

2 hours later our whole team came in to see him. Eight of us filed in around the bed, I got ready to speak when I stopped- it was so quiet. The loud harsh breathing noise wasn't there.  His skin still warm, I looked to my attending "I think he's just passed".  We listened for heart sounds, breathing, pupil reactions, etc.  He was gone.

Will I ever comprehend the ceasing of existence? The idea that "He" was there and alive earlier that morning and now "He" does not exist? The essence that was "Reggie" had vanished. Life and death are such opposite entities, it is hard to reconcile my memories of him laughing, speaking, and complaining with the empty mass of flesh lying there. Next came the hardest part of medicine, moving on.  Stopping all thoughts of sadness to go about the next order of business. Though outwardly I had to continue my day, as if pronouncing him dead was on par with listening to the next patient's lungs; inwardly there was an alteration...a slight shift in my brain. Do we get used to death? I hope not, I haven't yet.

Pacemaker deactivation

When you least expect it, some moral dilemma may strike in the wards. I have been taking care of a young 46-year-old man. He, unfortunately, has a very bad heart.  It only pumps at about 20%. This bad pump function causes fluid to back up into his lungs and legs, making anything strenuous just impossible.  He even had a pacemaker and a “shocker” put into his heart. The pacer helps the heart pump and the defibrillator shocks his heart back into life if it stops- which it has done on occasion.  While in the hospital, we've been walking a fine line with him, of getting the extra backed up fluid off of him (we give him medicines to pee it off) while making sure his kidneys don’t stop working from the medicines we give.  There have been multiple specialists involved. He actually could have a better life- and longer life- if he took the initiative to loose about 50 lbs AND if he could tolerate some of the heart medicines.  Unfortunately, he feels that both of these options are impossible for him.  So we kind of limp on, with our meager medical tools- trying to keep him going. 

Yesterday he was to his baseline- his usual semi-short of breath, somewhat fluid overloaded state.  We had reached our medical end and were ready to send him home.  Things changed when he made an unseemly request.  “Doctor, Just turn it off”.  I stopped to clarify, “Mr. R, what are you asking?”  “Just turn the pacemaker off, I have thought about this for a long time. If there is nothing else medical to do, I just want the machine off and let me die” At first I thought he was just angry about being discharged from the hospital, trying to shock us into keeping him longer.  However as the day went on, and more and more doctors became involved it became clear- he was ready to die.

With the Shiavo case fresh in all of our minds, it’s interesting to revisit this area of medicine.  Very often we as doctors are confronted with prolonging and shortening life. It is not unusual for a family, gathered around an aged grandmother on a ventilator, after a stroke has left nothing but a shell, to request that the breathing machine be turned off.  Most of us wouldn’t hesitate to honor the family’s wishes, especially when convinced that the grandmother wished that they never wanted a machine to keep them alive. But when a living, talking, walking, laughing, man says he wants the device keeping him alive to be stopped- what then?  It’s the same scenario – a man-made machine is being withdrawn…without it in place Mr. R wouldn’t still be alive anyway.  So why does it feel so different than the old lady in the ICU?  The difference medically is non-existant, but perceptively the difference is drastic.  One situation feels generous and natural, the other feels like assisted suicide.

We stalled all day today trying to prepare ourselves as doctors, and as humans, to be okay with his request, as the patient was already okay with it.  We had psychologists, ethicists, cardiologists, and palliative care doctors (end of life docs) all come and comment on this unusual request.  All came to the same conclusion. It was okay- he was rational and competent enough to make this decision, and we, as physicians were required to follow through. 

So tomorrow morning, if things continue as planned, the nurse cardiologist in charge of these medical devices will come and turn this pacemaker/defibrillator off. His family will be there, all the doctors will be there, and we, with heavy hearts, will say goodbye.

Too big to leave

We had an unusual problem this week at the hospital. How would you like the problem of being too big to leave the hospital?  That's right, too big, as in obese. One of our 560lb patients was ready to be sent home, we had the special big people van lined up to take her home and everything. They used a special crane thing to get her into a special double wide wheel chair, then down she went to the van and guess what, they said "no, sorry, too big".  Suddenly the nurses were alerting our team that this patient was sitting in her wheel chair in the hallway with no where to go.  What to do? Calls were made to ambulances, fire departments... any place we could find.  As hours passed it became evident she'd have to stay at least another night while we tried to find her a ride home.  I cannot imagine the embarrassment of this for her.

It reminds me of all the other stories I've heard at the hospital about oversized individuals.  We have had patients that have needed special MRI's or CT scans. The weight limit for the machines at our hospital is 400 lbs.  There have been times these tests are so important that we have taken patients to the zoo- they have a special MRI machine for the elephants and other large animals.  Can you imagine- being towed to the zoo to get a test in a machine that elephants lie in?  I also think of the nurses at the hospital, and how it will take 6 and 7 people to help turn or clean some of these special patients. Our heaviest person, a 900lb man had to be taken home once in a semi trailer.

The next day we finally found a company with a very special truck/van that could take our patient home- they needed 900 dollars up front (wisely, for they knew otherwise they wouldn't be paid from this person who had no health insurance).  The hospital forked over the money- and she left.  How she is supposed to get to her follow up appointments with the specialists over the next few weeks is beyond me.  As they wheeled her out, 2 people working hard to push the wheelchair, I wondered at this ironic problem - being too big to leave the hospital!  Sad really.     This picture is not of this patient, but of someone similar (and only about 450)- cropped to protect identity.

Doctor Definition

I have been thinking a bit about the definition of a doctor.  If you look it up in the dictionary under physician you will find “healer”.  This is one of those words that I think we have applied added meaning to.  When I hear healer I think of one who cures, fixes, or rids the body of ailments.  Maybe it’s me that is adding extra meaning- what do you think when you hear healer? In actuality, doctors don’t do this.  What we do is alter the environment. We help design circumstances that lets the body do what it is purposed to do.  When you get an infection, like pneumonia for instance- running fevers, coughing up unmentionable substances, unable to catch your breath –the good ol’ doc writes out a script for an antibiotic.  What does the medicine actually do? It weakens the bug to allow your own body’s bug killers to fight the infection.  When we treat diabetes with insulin or meds, we don’t cure the diabetes. The condition remains; we just supplement the body with insulin- attempting to mimic the natural way it was designed to run.  What about pain medication?  When we injure ourselves and take Tylenol or Motrin- aren’t we really just hiding the pain until our body fixes itself? Ultimately, any medication a doctor gives is attempting to recreate what the original ideal intention was or the medication is altering the environment to allow the natural processes to be effective.  I don’t cure or rid the body of anything. However, here in lies the crux: technically to heal means “to make whole or sound”.  Is designing an environment that permits the body to act naturally, in fact, making something whole? Perhaps it is I who has made the word healer greater than it is, when in actuality a healer is simply guiding the body to wholeness and not curing or fixing. In the end I suppose it doesn’t matter, whether I am a healer or a constructor of circumstance will depend on you and what your definitions are.

Waking

At times it’s helpful for me to think of myself in two parts- me, and my brain.  This is especially true when waking in the morning. When it's much too early to rise, I prefer the shadow me wakes. As "I" turn to look at the clock, I do so gently - like a mother peeking in on her infant child, not wishing to disturb the peaceful sleep. Whatever I do, I don't want to wake my brain. When the brain awakes it does so with the energy and speed of a roller coaster. There is no stopping the processing, no way to slow the eagerness to tackle the day’s foreseen challenges.  While this might seem ideal at the appropriate time of getting up, it is a mighty hassle when the brain decides to wake at 3 am, or worse 30 mins before it's time to get out of bed.  I have tried through the years to find ways to coax my brain back to sleep when it's sleeping time, but have found nothing to slow the electrical impulses once sparked. Thus when "I" awake at odd hours I will continue to move gingerly, lifting only one eyelid to peer at the time, and pray that my other self slumbers on!