Rituals

I heard a great story today that I'd like to retell:

An elderly gentleman with dementia, living at a nursing hom e, started exhibiting some disturbing behavior. Before going to bed at night he'd shuffle up and down through the halls of the nursing home.  This particular place had pictures of all the residents outside each room, to help them all find which room was theirs.  AT each room this elderly man would pause, and then kiss the picture of the elderly resident. He'd wander up and down the halls doing this until the staff would loose patience and force him to bed.  What at first seemed cute, really began to disturb everyone working there, and even some of the other residents.  The head nurse called this man's family to discuss the situation.  The daughter listened to the story and then said, "I know exactly what to do to fix the problem, and I'm sorry I forgot about it".  The next morning she arrived, a picture frame in her hand.  As she placed a picture of a young boy next to her father's bed she explained, "This is his oldest boy, who died tragically at the age of 8.  All our lives, dad would kiss our brother's picture before turning out the lights to go to bed. I think he's been wandering the halls looking for his son's picture, to kiss goodnight"  Sure enough, with that picture beside his bed, he never wandered the halls again. 

Story board

Finishing up a week at the "house".  As I sit getting ready to leave for the weekend, I wonder who will still be here Monday.  Each room has such a unique story, with vibrant characters. 

Room 1.  80 year old woman dying of heart failure.  Her well dressed husband is hard of hearing, a "talker" with a scruffy voice like Louie Armstrong. "I guess I'm the biggest fool here at this place, not wanting to leave her side.  From the moment I left the Navy, walked off the boat and saw her, I've never been the same. I just can't be away. My kids told me I should go get some rest, but I woke up at 4 this morning with her on my mind.  She's not opening her eyes anymore, but I think she knows I'm here"  His booming voice echo's through the house. He pats her hand, his eyes well up, "I don't know how I'm going to make it with out her"

Room 17.  50 year old man dying of liver failure.  He is a skeleton with a sheet covering him. Eyes sunk back, mouth open, eyes glazed over. Soft classic rock is playing in the background. He was a drummer for a band and his friends say he lived a rough life: drugs, alcohol, you name it.  He's alone now.  He can't let go, afraid of what awaits him.  He had 40,000mg of morphine yesterday and is still not comfortable.  Fighting demons we can't imagine.

Room 20.  70 year old woman dying of breast cancer.  She's a big woman, Italian, still in her flower patterned night gown. Her three daughters are now all in town.  Big women, with big hair, each a different bouffant style.  Their loud boisterous voices and personalities seem to match their appearance.  The youngest daughter tells me "When I arrived, Mama's spark came back, her color's so much better..." The middle one at the same time, "She's really plateaued don't you think, doesn't have that same rattle when she breathes..." While the oldest chimes is, "Mama's going to surprise us yet, why, her temp's down to 101 from 103"  and then all three ask me, "What do you think, do you see the same improvements?"  While all the facts they stated are true, I have to still remind them that she's dying.  There loud chatter and banter with each other follow me out of the room.

People may think my job is boring- the outcome already known - Death.  But each room is such a colorful story that I get to enter into briefly, how could it be boring!? 

Dying at home

Another one for the books. When I was on call this past weekend I was involved in an extubation of a younger guy; 23 years old and a gun shot wound in the back of his head. He'd been at our hospital for 3 weeks on a breathing machine, waiting to see if he'd become brain dead. This is a case you'd say, unfortunately he didn't progress to brain death. He was trapped- not brain dead, but in a persistent vegetative state. Enough damage had been done from the bullet, that he was guaranteed never to wake up. Ironically, his 14 year old cousin had died at our hospital 6 months earlier with a gun shot wound. Having watched the ordeal his cousin went though, our patient was very vocal to family and friends that he'd never want to be alive if it was hooked to machines.

After 3 weeks in the ICU, it was time for the family to honor his wishes and take out the breathing tube. Over 30 people assembled after church sunday to meet one last time with us and give the final okay. We extubated him a little later, and not surprisingly, he began to breath on his own. As healthy and young as he was, it became clear that it would be days before his body actually shut down. His fiance', with 2 kids at home, was adamant she wanted to take him home to care for him these last days. We reluctantly made arrangements for this, and things started getting messy.

Police began calling. Evidently, there was suspicion that a family member was involved with his shooting. In fact, the bullet was still lodged in his brain, and would need to be extracted at autopsy for evidence. There was worry that the family wanted to take him home to die, to avoid the autopsy. (Destroy the body to protect the family?) We even had to have a last minute meeting with our lawyers on the legality of sending him home. Then this patient's fiance' started asking questions about sperm donation, wondering if it was possible to somehow extract some sperm for later use. (The answer legally is no, because he can't give consent). Just when we finally had everything arranged, the hospice home team started to fuss. It was too late in the day, they said, to go to this fiancé's neighborhood to meet him on his transfer from the hospital. The nurses worried, they'd be the next gun shot victim in our hospital.

What can I say? Isn't helping people die at home supposed to be easier?

Evil

Tell me if this isn't just evil.

We have a 50ish patient with ALS (Lou Gehrig's) disease. As his muscle's have weakened with the disease, he's been left unable to talk or move.  He's a brilliant mind trapped in a body that doesn't work.  His wife, however, is the one with the real problems.  We learned soon after he was admitted to our hospital, having now lost the ability to swallow food, that his wife was abusive.  She'd often leave him at home, alone, not able to call for help or even move. 

But the worst thing happened not long ago.  Upset for some reason, she started yelling at our patient.  Telling him how he'd ruined her life and such. In fact, there was no point living any more.  She grabbed a gun and shouted " I'm going to kill myself".  I can imagine his eyes widened with horror, but he couldn't do a thing- couldn't grab a phone, or yell to stop her.  She left his room and the next thing he heard was a gunshot.  Then silence.

She then sneaked out of the house, so he'd not know that she really was alive.  She left him in despair, thinking she lay in the next room dead, with no one to help. She didn't re-appear till the following day, with a sneer on her face for what she'd put him through. 

I can't fathom that type of emotional pain that he's experienced.  It's hard enough to cope with being trapped in a body that is loosing it's ability to work, let alone having the psychological torture he's had to endure. 

He's moving to the hospice house tomorrow, with only days of life left, we'll try to ease his suffering the best we can. 

Timing is everything

An interesting labor day weekend, as I worked all three days.  Yesterday was one of those, "can't believe this is happening" days.

I worked in the hospice house and was taking care of a 70ish g entleman who had just been admitted the night before. He had metastatic prostate cancer and had been deteriorating rapidly at home.  The family all arrived in the morning, and were surprised to see how much closer to death he was.  He wasn't opening his eyes or talking, he had that sound with each breath of a rattle of fluid stuck in his throat. His wife of 50 years was having the hardest time, saying things with a tinge of anger because of how quick this was all happening.  I had spent time with the family talking about all that was happening, and let them know we were expecting him to go in hours to a day at most.

I was out working on other charts when a family member from this room came running up shouting, "My mom has just passed out, come quick"  I entered the room to find the pt's wife slumped in a chair, looking very pale, having just come to.  Everyone appropriately swooned over her. Her blood pressure was elevated at 220/100 and one of the nurses told her, "You need to go to the ER, with your blood pressure so high, you could have a stroke".  The family started echoing this advice and all were a bit panicky.

I was standing by the husband's bed watching as everyone forgot about the him and hovered now by the wife.  I glanced down at my patient, and noticed his breathing had changed, a long long pause and then a very shallow breath. He was dying, right then, and everyone had forgotten about him. They were all debating about taking the wife to the ER, and she kept shouting, "No, I want to stay here!"  I finally interrupted, "Mrs B, I think you should stay, you should also take your husband's hand now, because it won't be long".  Everyone's head's whipped around and had that wide-eyed look.  A daughter looked at me, then at her father, "You mean he's dying?"  I nodded my head and the swarm moved back around the patient's bed.  The stress and emotions of having their mother just pass out, and now moments later having their father dying was too much.  Loud wailing and sobs filled the room as I watched him take his last breath. 

How ironic for his wife to have passed out, literally minutes before he died, as if his soul leaving somehow sapped some of hers away. And they had almost missed it. He almost slipped away with everyone in the room, and yet not one person's eye's on him.   Maybe that's what he had wanted.

Prisoner of the home

I've started home visits this month.  A little different pace than working in the hospital.  I like getting to come into people's space.  Their homes tell so much about them. A little glimpse that most doctors don't get into their patient's lives.

One of my encounters yesterday stands out, not because of the appearance of the patient's home, but the appearance of the patient himself.  He's had squamous cell carcinoma of his sinus for 2 years.  The cancer has literally eaten away his face. 

When you see him, he has something like a curtain hanging over his right cheek.  Some pads are taped up to his eye brow, and then hang down over the area of destruction so you can't see.  He's developed a nervous tick over these 2 years, his right hand taps the tape, while his hand conveniently covers the dressing.  I assume it started whenever the first lesion appeared, kind of hiding it from people without them noticing.  Now this habit is a full blown tick, he can't stop the motion. 

I was amazed when the dressing came off.  The perspective was something I've never seen.  From below his eyebrow down to his lower lip is a large cavern.  NO longer any eye, cheekbone, top lip. It's uneven and oozing, as if some creature just took a giant bite out of him. He wears dentures still to help him drink fluid (since his lip is gone).  Thus peering down at him, I could see the top of the upper dentures; as he moved his jaw, they moved. The hole is the size of a grape fruit- his nose only half there.  He can't take any solid food, and even fluid pours out of the right side, so that only a few ounces get in. 

It must be hard for him on many levels.  One, he's a prisoner of his house, to embarrassed to leave, even with the dressing, people would stare.  He hasn't been out in over a year. The other hard thing is the visibility of the cancer.  If there's a blessing in most cancers, it's that it's on the inside...so we don't see it's destruction. To have to feel, watch, and experience the eating away of your body must be torture.  

Communication

You never know what direction a palliative care consult may take.  Our team got involved with a 40ish man with a rare condition. He had Berger's disease, which is a disease of blood vessels that can be very painful.  In fact his fingertips had auto amputated- basically died- leaving just the nail sticking out by itself.  Another problem with this disease can be forming clots. He came in the hospital needing surgery for some clots in the vessels in his legs and ended up having multiple strokes, leaving him in a coma state, unable to wake up, talk, etc.  That's when we came on board.

What makes this story unique is the family. We had a family meeting and the patient's son and extended family decided to move to comfort measures- meaning we'd stop all the extra meds we were using to prolong this poor man's life, and let him die naturally. They all talked about how miserable he'd been with this berger's disease- always in pain, and getting worse and worse.  They new he'd never recover from these massive strokes, so the best thing was to make him comfortable.

As extraordinary as it might seem, this same son attempted suicide last night at 8 o'clock, and unbeknownst to him, his father died an hour later.  Just as his father was leaving our care, the son was being admitted to the very same ICU unit his father was leaving.  The ICU team and even the psychiatrist that came to see the son all avoided the news about his father...who wants to tell a suicidal person someone they love just died?  That's when I got a page.

"We were wondering if you'd be the one to tell him his dad died...after all you did meet him at the family meeting, and no one else wants to do it"

I guess when you're in a specialty that specialized in communication, people want you to do their dirty work.  So at 3 in the afternoon, 18 hours after his dad died, I knocked on his glass ICU door, took a deep breath and jumped in.  He actually took it okay, was upset and sad, but had expected it... I think he was just happy someone told him.  It might seem unwise to tell a suicidal person about their father's death, but better now while he's safe, being watched like a hawk then finding out later on his own.