Secret Ballot

Families handle dying in such different ways. Our family hasn't had to deal with end of life decisions, so I can't say how we'd do it.  Throughout residency, these family meetings deciding the future of the life of a loved one, have been the most fascinating. The intense emotions, the passionate pleas... I wish I could have a sound recording of them.  This always occurs when there is conflict. It's the same thing every time- 80 something year old mom is in a coma, or has such severe Alzheimers she doesn't communicate anymore.  There are options to be aggressive and prolong life with medicines and machines- or we can let nature take its course.  Ultimately, there seems to always be arguments.  1 sister wants aggressive things, the other wants to let mom go. If only there were written living wills, or something. 

One patient's family this week had an unusual solution.  Their mother- in her 80's, has not been communicative for years.  She's got vitiligo- a condition that makes your skin white.  She's black- so her appearance is startling- like a calico cat- half white, half black - all in spots.  Her mouth is always open- giving her the appearance of a skeleton with it's jaw unhinged. Her eyes are never open. This poor woman needs to die. I can say that easily as a doctor. However, the family wants to keep her alive by any means- well, most of the family.  The arguments have been loud and noticeable by all in unit 43.  The eldest  daughter who's a preacher, is in charge.  She finally decided, enough arguing.  They got the whole family assembled 2 nights ago.  There were 35 people there!  They talked and gave arguments for their positions...and then... they took a secret ballot.  Honestly, they wrote down on pieces of paper wether they thought "mom" should live or die.  No raising hands- you'd be holding grudges with each other for years-  it was all secret.  And the tally-  she lives.

When you step back it's eerie- a secret ballot to decide her fate. Moral of the story-  make sure you know what your loved ones wish for near the end; or you may be the one scribbling "live" or "die" on a piece of paper someday.

"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.

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.