Hard to bear

I’ve been doing pediatric hospice visits this last week.  I knew, as a mother, this would be more difficult than the adult hospice population.  Each newborn I’ve seen with chromosomal abnormalities so life altering, that they won’t survive past a year of age, have pulled at my heart as I imagine what the parents must be feeling, struggling each day.  What has surprised me this week, is not the tough medical conditions, or my own emotions as I relate to being a parent, but it’s the social situations that have caught me off guard.

It seems that each child has come from strained social circumstances as well.  Little Marcus is 8 months old now, but has a rare disorder with his brain. Instead of splitting into two halves, only one large brain formed.  This causes serious mental problems: he can’t coordinate swallowing, so is fed by a tube in his stomach, he has problems breathing and needs oxygen, he is blind and probably deaf, and has seizures everyday of his life.  His mom is just 18, pregnant in her last year of high school, she wasn’t prepared for this form of mother hood.   Her boyfriend has stepped up and is helping out, but they weren’t planning on marrying, or being together after high school.  Life looks so much different now. 

Jamie is only 2 weeks old, born with a similar problem as Marcus, but worse.  She also didn’t form a nose, so there’s a gap from her nose buds to the mouth, a very severe cleft palate.  She also has all the problems Marcus has.  Her young parents had dropped out of high school and were newly dating.  They were shocked when they became pregnant, and even more when they learned of all of jamie’s disabilities.  When I visited this young family they were living with friends.  The tiny apartment housed 2 families, 3 boys ages 2, 2 ½ and 3 and now Jamie and her parents.  It was chaotic as the 3 boys ran around asking about the feeding tubes in jamie’s belly and why there was a whole in her face. No one in the entire apartment was older than 20. 

More than coping with taking care of a child with such complex medical needs, I wonder how the experience of the children dying will affect them.  Each of these children will likely not make it to a year of age.  To be 16 and mom is hard, to be 16 and have to watch your child seize 3-4 times a day, up to 2 hours each time seems unbearable, but then to be 16 and live through bonding and loving that baby and watching them die in a year, seems almost a breaking point.

The key incident

Before embarking on Friday’s home visit’s I reviewed the info I had on each patient.  The first home I was to visit had a note from the nurses on it: “Patient share’s duplex with drug dealers, always take security with you if going after dark”.   I was going in the day, but it did make me a little more cautious as I made my drive. 

As luck would have it, in my nervousness to hide my computer, iPod, etc in my car when I arrived at the patient’s house, I jumped out and habitually pressed lock on the car door and saw my keys still sitting in the console.

My heart sank.  Of all places to get locked out of my car, I’m in some dangerous crime filled neighborhood!  There was nothing more to do just looking into my car, full of regrets, so I made my way to my patient’s half of the duplex.   

As I knocked I had the thought- had I left all my valuables in plane sight, maybe someone would try to break in, and then I’d get my keys!! 

I met my patient for the first time, in one breath introducing my self and lamenting about my car key situation.  She’s a young woman, 48, with colon cancer who’s husband died last February of the same disease.  She has a 9 year old and a 30 year old, but no kids in between.

Although tired, and in bed, she immediately went to work on my problem.  I tried to dissuade her to not worry, that I was there to see her, but she wouldn’t have it. She began calling her landlord and neighbors.  “I’m sure one of these young men around here can break into your car” she muttered.  I’d hear her ask for so and so’s son, then take ownership as if it was her car,  “Dewon, I locked my keys in my car, you think you can come get them out?”  They’d talk a bit, but everyone probably saw my car parked outside and declined to come try.

Later, my husband agreed to get off work and come and unlock it.   I ended up spending  2 1/2 hours with this patient.  We didn’t discuss anything too profound; I tried practicing what I’ve heard of as the ministry of presence.  Not wanting to exhaust her, I’d often remain silent, letting her rest.  Then we’d talk for a little bit about her life.

In those silent moments I thought a lot about my key incident.  I know that had I not been so nervous I wouldn’t have made the mistake. I’d now spent an afternoon here, and was embarrassed at myself for the prejudices I had when I had pulled up into this neighborhood. 

When I left, we hugged as friends, and I was glad the day had turned out as it did.

Tension

I had a hour long drive to go visit a new home hospice patient.  She lives with her family in a very small town. I passed many farm fields covered with ice and snow to get to the town.  I found her street and recognized her home easily. I had already heard that this little town had surprised she and her family by building them a new home.

Jackie was diagnosed with lymphoma last year, and has had the most aggressive therapy available for this aggressive form. She and her husband had bought an old farm house and were in the process of fixing it up when she was diagnosed.  While gone for 3 months, away from her kids, getting a bone marrow transplant, the town had volunteered and built a magnificent home.

I walked up to the front, passing bikes strewn in the snow and rubber balls hidden behind bushes. I felt myself growing sad just walking to the door.

Jackie is my age, with 5 children, ages 2 1/2 up to 12.  MY AGE and dying.

Jackie's husband welcomed me in, to more Christmas chaos with decorations and wrapping paper around.  Jackie was able to walk out to greet me for just a few minutes before retiring to bed from exhaustion and nausea.  Her hair short, having just started to grow back after chemo. Face thin, having lost 50 lbs.

It was a hard visit. For the first time, I sensed tremendous distrust in me as a young hospice physician. Perhaps it was anger on her part at my life, or just the weariness of fighting so hard to beat something impossible to beat.  Regardless, there was a lot of tension in that house.

It's so different when I work with young patients vs. older one's. Young patients often keep hoping for miracles. Comments her husband made led me to believe that they both are still expecting she'll be cured, even with all medicines now stopped.  There's often more escapism in young people as well.  When it gets so hard to face the reality of being a mother of 5 and dying, it becomes easier to take medicines to go to sleep.  She's avoiding the pain, with drugs, but meanwhile loosing the precious time she has left with her family living.

Usually I leave visits feeling good, but not this day.  Passing the bikes again, I had a heavy heart.

Prayer for compassion

My impression from my initial visit 2 months ago was the Mr. J had led a very hard life, had been in jail, had been homeless at one point and had extensive alcohol and drug use in the past. He now had metastatic lung cancer to his brain and I was making a follow up visit.  He’d been drinking 24 ounce beers all day, so my initial expectations for the visit were very low.

I went through the usual stuff, asking about pain, constipation, appetite, sleeping, etc. He was sober enough to answer through the questions, but at times would start to drift off again.  I’d watch him light a cigarette, take a puff then forget it was in his hand. It’d continue to smoke up the room and my lungs, and he’d drift back to sleep.  “Mr. J, you need to be careful when you’re this sleepy and smoking, I’d hate to see this house catch on fire.” He’d wake up, the cigarette now burned to a little nubbin and puff once more before lighting another. 

I really wanted to finish up.  It was the last visit on Friday afternoon and I was queasy from the smoke.  I, however, forced myself to be patient.  “Anything else on you mind?”

Mr. J then surprised me.  For the next 15 minutes he began to talk about God.  He spoke of how sad he’s been.  How at first when he was diagnosed he questioned God, “why me, why my family?”  He voluntarily said that he’s come to an acceptance now.  He still prays that God will heal him, but he is at peace with his disease. He said the hardest thing now is that his mom and aunt haven’t accepted it.  He then fell asleep again and even with another question to follow up on his statement, he kept sleeping.  I sensed he had reached his end point. 

I went up to him to say goodbye, again having to shake him awake. I asked if there was anything else we could do and he said “just pray for me”.  I went deeper, “How should I pray for you?” He asked for strength, and then just as I was turning to go he chimed in, “one more thing to pray for, pray that I have compassion.” 

I was actually moved by his simple requests. A man, dying of cancer, who has had problems sleeping, problems with pain and anxiety, a man who has struggled with things he’s not been proud of in his life.  The two things he wants most are strength and compassion. 

When I had word that Mr. J was drunk and emotional, my own prejudices imagined he’d either be riled up,  flirtatious or weeping with self-pity.  I was shocked to find his emotionality was appropriate.  He’s doing the work people are supposed to do, as they get ready for death.  In fact, Mr. J, with his cigarettes and alcohol, his stab wound scars and tattoos, was doing a better job coping than many of my other patients.  More surprising to me than even the work he was doing on death, was that he’s been able to move beyond ego centrism.  When he asks for compassion, he’s thinking about others, and how he acts towards others.  Death and disease are often so inward, focused solely on self and how to feel better, that I rarely find people wanting to improve themselves for the sake of others.

I had to think, when was the last time I asked for compassion?

More Drama

I had a dramatic family meeting last night.  My patient, Yvonne, a young 40ish woman with metastatic breast cancer has been in our facility for pain management.  She's getting ready to transition either back home or to a nursing home for the last weeks/months of her life. 

She's had a tough time, her 3 teenage kids don't seem to be accepting of her decline. Since she's been gone from home, 2 of them have dropped out of school.  She can't be around to encourage them to go, to take care of them, to help them keep their paths straight.

I met with her kids separately, to make sure they understood how serious their mom's cancer was. Also, to give them a chance to ask questions.  We then went back for a larger meeting. All of the patients brother's and sisters and cousins came. About 25 people all circled around the room.  I knelt on the floor next to my patient.  I spoke to her, but for the benefit of everyone.  I explained where we were at in her disease, and what the options were for next.  All of the family voiced the desire to take care of her at home, ready to pitch in. As I wrapped up I said something like, "Now is the time as a family to be saying the things that need to be said".

One of her brothers spoke up, "I just want to say, sis, I love you... and doc, thanks for everything". Another sister started to tear up, "I have something to say too,"  I was really amazed, I hadn't meant THIS moment was the time to say everything, but hey, the mood was there.  The sister kept choking up, "If ever we needed to be a family, it's now"  People were amening and crying.  The sister was visibly having a hard time speaking, "What I have to say is.... our niece, kiki has died"  At this, screams erupted. People jumped up wailing, saying "What!, Why are you saying this? How can you say this in front of Yvonne" Pandemonium, as people ran down the hall crying, shouting, moaning and angry.  Yvonne sat, tears streaming, looking weak and shocked.  The sister making the announcement said to me, "Yvonne raised Kiki, she was a 4th child to her.  Kiki was only 12, she had cerebral palsy from birth, and her death had been sudden."

What a way to make an announcement! You'd think there was a more subtle way to let someone know their child had died. After comforting my patient, I got up to leave... that meeting was defiantly over, with a big black exclamation point.   

Ignorance Bliss?

Something to ponder. 

As science advances, one of the things that will occur is the linking of cancers to choices. We know now all about the links of smoking, obesity, etc.  But, what if we're able to pinpoint all cancer to a specific behavior?
So what?

Well, think of this.  Is it comforting to be able to assume the cancer you're dying from is just happenstance? Perhaps it allows you to blame God? Or at least be able to blame circumstance. The responsibility is at least not yours to have to sit with, hour after hour, as your body withers. Will science take that away? We are searching for reasons, aren't we?  But what if all the reason's just point to ourselves?  We can't then be mad at God or even chuck it up to LIFE... it becomes our own grief at bad choices.

What I'm not sure of is if our new information and causations will be helpful or harmful. I see a lot of guilt with certain cancers, which seems to get in the way of the dying process.  At the same time, I see a lot of blaming God for things that don't make sense that also hinders the closure process.  

Be prepared: by the time you die, you may know exactly what food you ate too much of, or what behavior you did that will be the ultimate cause of your death.  It will be interesting to know if it changes anything.

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.  

The Narrative

Narrative in medicine is a huge part of the human struggle with disease.  Another way to say this is, our stories help us cope.

A 70 ish hardworking farmer had a stroke at home and collapsed hitting his head and causing a bleed in his brain. He was rushed to our hospital and placed on life support. The neuro intensivist spent days trying to fix him. He had a drain from his brain to help relieve the pressure, he was on medicines and fluids to correct any imbalances in his electrolytes. Our team came on board to support the family and honor his wishes.  They were giving him time to wake up, as sometimes can happen with stokes in the few days after the event.  They spoke of his humor, and daily laughter. They said he always told them if he couldn't laugh and be at home he'd rather die.  It became clear that the best case scenario would be him living in a skilled hospital on an breathing machine forever.  The family made the hard decision to take the breathing tube out, which would mean he would pass away.

The day this was decided, I was in charge of the process. The family didn't want to be in the room when we took the tube out. He was breathing well enough, we assumed he'd probably do okay for a day or two off the machine.  The family went to lunch and we got everything ready and pulled out the tube and the drain in the brain.  I watched him like a hawk, looking for signs that he was struggling, so I could give medicine to take away the struggle. In minutes from the tube coming out he was making changes that indicated he would not last days, but likely die in minutes.  I panicked- THE FAMILY WAS AT LUNCH! 

I quickly began paging their names overhead in the hospital, and calling cell phone numbers. Doing this I kept peeking at him in his room, watching his breathing space further apart.  Finally I spotted the family down the hall, seeing in their movements they had no idea of the urgency to get here. I met them, and calmly tried to prepare them for the sudden changes, that he was close to death.  They now rushed into the room.  I could see he had already died. They hovered around him, stroking his face and hands all saying their I love you's.  His wife of 60 years bent close to his ear and whispered to him.  I knew this was important so I just waited several minutes and then gently said I needed to check him. 

I was sure they all knew he had died, but as I put my stethoscope to his chest to confirm it, and then solemnly nodded that he was gone, a new burst of tears issued forth.  They hadn't known.  Then in the moments of tears and hugs I heard a daughter say, "At least we were here by his side when he died, he needed us to let go,  it turned out so perfectly"  I had been thinking how unfortunate it was they had missed it, but now I saw they believed they had made it. I kept my mouth shut with the correction and heard other members now voice similar sentiments on the timing.

I realized now that this narrative would be a part of this family's life long story. And the story of being there, saying goodbye and ushering him into the afterlife was more crucial than the actual facts.  Some may say truth is more important, but for them, the perception offers more healing.

Chance to say goodbye?

We had a very messy family situation on Friday.  A 40 something man with HIV, Hep C causing liver failure and lymphoma in his brain had come into the hospital very sick.  For years he's told his family that he wouldn't want to be kept alive on machines.  He was so sick when he arrived that the ICU team needed to decide quickly whether to intubate him or let him die comfortably. The patient was too confused to give and answer, and the plan was to honor his previous wishes and not put him on machines.  However, his youngest son, 17 was panicking and demanded his dad be intubated.  It's hard in those situations to know what to do. Usually it's better to intubate and then withdraw care later, as you can't really change once he dies.

We got involved the next day to help the family sort out what to do, now that their dad was where he never wanted to be- living on machines.  I went to the ICU to see the patient first.  He was the color of a sunflower, his skin full of fluid making him puffy.  His feet and hands were already turning blue, like they do when someone's dying.  It was clear to me after seeing him, that he was going to die despite all the medical intervention. 

We sat down with the family- an ex wife, 3 kids with from different moms, and family friends. We talked about him and his wishes and how sick he was. The family finally grasped the situation and one daughter said, "I guess the only question then is when do we stop the machines, because we also don't know what to do about his other son..." AT this moment she chokes up and everyone in the circle starts crying more.  We ask if the other son is out of town?  "No, he's here at the hospital" We learn that this 23 year old son  was in a car accident the night before, and broke his neck, and looks like he might be paralyzed. He was in the neuro ICU and didn't know his dad was even at our hospital.  His mom, different from the ex we were talking to, had told everyone to keep the news from him, as he would be too stressed.  Although he'd been asking about his dad since the accident, everyone was lying to him. 

We were of course aghast at this. The immediate question was should they tell him about his dad? And the answer was an emphatic YES.  The long term ramifications of being lied to about someone dying can be devastating. While done out of protection, the family wasn't thinking about days from now when they'd have to tell the truth.  The second question was equally important, could we arrange a way for the son to say goodbye to his dad if possible? I went to work calling the neurosurgeons and trauma surgeons for their input.  They all cleared him to go by hospital bed. The hospital is pretty big, so he'd actually be wheeled from one building to another.  The ICU room where his father was dying was big enough to accommodate another bed, however because of the son's neck injury he wouldn't be able to turn his head to see his dad.  We'd need to lift the head of the bed to almost sitting for him to say goodbye.

All the planning looks to be in vain. We talked with the son's mom,  frazzled by having a son who is likely a paraplegic and an ex husband dying on a ventilator, all at the same time.  She is angry at the world right now and has decided she won't tell her son about his father. She's in protection mode, and to her, having him even just be told that his father was dying could make him give up on his own recovery.  She says she'll think about it, but I believe that while "thinking" the dad will probably die.

This is the hard part about all of medicine.  We can give information and have opinions, but ultimately people make their own choices. In this case, I'm glad I won't be around to be a part of the the truth telling later.  I can only guess at the son's sense of betrayal and regret for a moment that was possible, but gone forever.

Visitors

There are unexplainable things that happen near death. Here's a story from this past week.  A 40ish female had been in hospice dying of lung cancer. I've had a chance to talk with her everyday, and watch the slow process of dying.  She made it clear in the beginning that she didn't believe in God, and thought death was either final or perhaps we'd be reincarnated...but she definitely didn't ascribe to any heavenly afterlife beliefs.

She started making some rapid changes indicating that things were getting closer. Hadn't had any fluids in days, was mostly sleeping, having spells when her breathing would stop for 20 secs. I went in one morning and sat on her bed, as was custom. "How are you doing today Sally?"

With all the energy she had she'd half lift her eyes to see me and then close them to talk. "I'm doing okay" She said weakly. I just waited in silence for her to talk. She started up, "However, there's this man that keeps coming in here." I was surprised, "oh really?" because no one else had been in to see her that day. She continued with a frown, "Yes, he keeps asking me to come with him, to come to the other side"  She didn't see my eyes get big.  She took a break and then went on, "I just wish he'd answer all the questions I have".  "Who sally?" I asked still wondering about this man that was visiting her. Then she really shocked me when she said, "The Lord". 

How to explain this medically? I think there is no way.  Sally died shortly after that, perhaps finally deciding to go with that man to a better place.

Oscar

Did anyone hear about Oscar the cat on NPR this am?
 LINK: (http://www.npr.org/templates/story/story.php?storyId=12249387)

There's an article in the New England Journal of Medicine that came out today about this cat with uncanny abilities.  He has lived since a kitten in the a nursing home in Rhode Island. He interacts with the residents and staff, but when he enters a room and jumps up on the bed to sleep with an elderly patient, the nurses usually rush to a phone to call family in.  That's because Oscar somehow senses when people are close to death-  usually within hours the nursing home patient dies.  He's been at 25 deaths, and is viewed as one the most accurate predictors of someone being about ready to die.  Doctors aren't even that good- we'll get down to 24-48 hours, but rarely to the 3-4 hour mark.  It makes you wonder what he senses?  They say he kind of sniffs the air as he wanders in and out of rooms.   Is there a smell of dying?  If so I haven't whiffed it yet!!!

Works Vs Faith

The chaplain that works at the House told me when I started that he can always tell when patients are brought up under a works based or faith based belief system.  I started paying attention to this myself, and noticed the trend. Often when patients think that what happens to them after they breathe their last breath is based on what they've DONE in life, hey start getting nervous. They question if it was enough, they have bad dreams, they get agitated when awake and often fight dying right to the last moment. It's hard to feel secure if the only thing that counts was your actions in life.  In contrast, those who believe they are loved despite what they've done are always calm. They sleep peacefully, spend time sharing memories instead of questioning the past, and they die gently.  It seems oversimplified, but the pattern is present everyday that I work.  

The Cruise

This is not the way you'd like the end to be.  A sweet elderly man with cancer had been living with his wife at home. She managed to arrange for him to be admitted to a rehab facility.  This in itself is silly- because rehabs are for people who have things you rehab from- like car accidents, strokes, heart attacks.  When cancer is riveting your body, doing physical therapy 3 hours a day isn't going to help you get better.

The real reason for the rehab soon was evident- because the day she dropped her dying husband off, she left town for a cruise with friends. Didn't call anyone while she was gone, never checked in with her husband.  It was if she skipped town.  The poor man was heart broken, like an old dog someone leaves at the pound. He declined very rapidly in the rehab place.  The rest of the family had to step up to decide what to do next.  That's when they opted for the "house".  I met him when he arrived.  He doesn't have long to go, but this sudden abandonment is weighing on his mind.  Though he hasn't said a word, he's restless and sits, leaning forward with his head in his hands.  Occasionally he slaps his fist against his other hand. He's struggling, and fighting his thoughts. He's angry and devastated, and dying with things unsaid.  

The wife is due back in town today. The family wonders if she'll even try to find him. It might be good if she does come, perhaps giving him a way to let go of his anger.  It's his only hope to go peacefully. 

Unquiet mind

I've never been so close to an unraveling human brain. A 70ish man had collapsed after having a bleed in his brain. He'd had other complications in the hospital including a seizure and respiratory failure.  We met him when he was already on the breathing machine. Unfortunately, even with no medicines to make him sleepy, he was still not responding, even when we caused him pain.  This is a very ominous sign.

This man had a wife and a severely mentally challenged son. His wife and son would come visit every day at the same time. The son was in his 30s, with debilities in seeing and cognition. He was a gifted pianist and always had headphones on listening to music to keep him calm. 

A helpful thing in this case, was that the patient had an advance directive that spelled out exactly what he'd want and not want in this situation. It was explicit that he'd not want to be on the breathing machine, or have dialysis or even tube feedings.  Our team had begun the slow process of helping support his wife and walking her through the process of letting go.

Unlike any other person I'd ever met, his wife had this unnatural ability to control our meetings by not letting anyone else talk.  She'd open her mouth and talk non stop for an hour. It was if she couldn't stop her brain. You could tell she didn't trust herself, so if she kept talking, she'd not have to hear the bad news we were telling her, and she'd not have to make any decisions on what to do next.

My last day I met with her for 2 1/2 hours. I was just trying to clarify her wishes, to either keep him on the machines even though he never wanted it or to change our approach. I remember listening to her talk, fascinated by her thought process. I didn't realize then, it really was unwinding.  Think of someone on the brink of insanity, with thoughts popping in their mind, but the filter gone.  She seemed to not be able to control the direction of what she was saying, and actually realized she was on the cliff of insanity.  At one point I had been able to get in a sentence about her husband and she panicked.  "Don't say another word" she half screamed as she grabbed my hands.  "Okay" I said and was shocked as she reached out and literally grabbed my mouth to close it.  "I told you, not another word...oh look what you're making me do, I didn't want to think about this today, I can't do this" Her eyes looked frantic, as she kept talking...it was as if I, by speaking, was some how stealing what little control she had on her brain.  I stepped back worried if I did utter another sound she'd really attack me.

She managed to get it back together and we left the meeting calmly after another hour.  Amazingly, she decided to withdraw care a few days later.  Then, her fragile mind did collapse- she had a true psychotic break and is currently admitted to a psychiatric ward.  

How strange to witness a brain unraveling.  All the safety mechanisms gone,  verbally  I was witnessed what  it was like to be in her brain as it spun out of control... In someways I'm lucky all she did was grab my mouth and hands, you can never predict what truly psychotic people may do!

Prognostication

There's a word in palliative medicine we talked about this 1st week of orientation called prognostication. It's especially important in this field.  Doctor's make prognoses all the time-  we tell people in clinic when we expect their infection will respond to antibiotic treatment, or when their rash will leave.  We guess when broken bones will heal and when pain from a muscle injury should dissipate.  However, when it comes to the time of death, doctor's are a bit more nervous.  The thing is, just like all other things in life- most people WANT to know what we think.  Knowing helps with the preparation, and with coping.  It helps not just the patient, but the family too.  The problem is historically doctors haven't done a good job of giving our prognosis on time of death.  This has to do with several things- from not wanting to communicate bad news, to not wanting to be wrong when guessing. 

In my field of medicine, when everyday I am seeing people who are actively dying- it's important to become good at prognostication.  It will be one of many uncomfortable things I'll do this year. I'm to continually work on getting more accurate in predicting the time of people's death.  The deep question then becomes 'is there such thing as becoming too accurate?'  Hypothetically if doctor's could develop a system with computers and genetics, etc that had no error rate- 100% correct, all the time, at telling people when they would die - - -  should we?  

Eve of fellowship

Well, I guess it's time to be a little more regular at this-  And perfect timing, as I start my new training tomorrow.  That's right, I am officially done with residency. I survived what most would say are the roughest years of a doctor's career.  Does it feel good to be done?  Absolutely.  In fact, as I am at the eve of my next life change, I recognize a different feeling within.  Instead of the typical anxious, dreadful, excitement that accompanies life changes (I.E. high school, college, med school, residency).  I finally only have excitement.  The anxiety and dread of something new and challenging is gone. 

That's for 1 huge reason-  I'm going to be doing something I love. My fellowship is in palliative medicine, so I begin a career helping people and families through the process of suffering and death.  I'm careful when I talk to people about this upcoming year- I try not to say "I'm looking forward to a good year", because that seems kind of glib.  But I do say, "I'm looking forward to a meaningful year".  And perhaps because I am someone who relishes meaning, that's why I'm truly excited about this start.  

So, on to a life of endings- but a huge new beginning for me -

Nature and Nurture

I love psychology - but it's frightening what we parents can DO to those in our charge!   Last week I got to observe a counseling session.  The session itself was pretty boring, but the background was fascinating.  This 50 year old woman was the eldest child in her family.  When she was 5 or 6 her parents realized that her 4 year old sister was mentally challenged.  Not knowing how to be "fair" to both girls, they decided to just treat them both as if they were mentally handicapped!

For her whole life, this intelligent woman had all of her decisions made for her as if she was incapable of making choices.  A smart woman, avid reader, good at math, etc -she is socially a mess.  She's 50 and has lived 20 years in the same apartment- that was after moving from her parents house. She has never dated, EVER.  Why? because her parents told her not too.  In the session it was fascinating to see that she still can't make decisions, she has been trained to ask her mom and dad (now in their 70's).  She has no depth whatsoever, was never trained to THINK. 

2 lessons then: 1)Just because you are given the capability, I.E. "IQ", if the right environmental cues aren't available you can still be "dumb"ed down.  2)Seeing the consequences, I don't recommend this form of "fairness" in parenting!

First Intubation

Another fun first.  Some would say it’s a little late for this first, as I am 2 months shy of finishing residency.

I was doing an ER shift last Friday the 13th.  I had heard the ambulance tuner go off, and minutes later the paramedics came rushing in with a woman in her 50’s. I heard them saying she’d been found on her couch, unresponsive.  The ER doc looked at her and then said loudly, “this would be a good one for a resident to intubate”

It was the moment of truth.  I could easily stay where I was and pretend I didn’t hear his statement.  Surely someone else would love to practice putting a small tube down a dying woman’s airway? The thing was I had done precisely this for the last 3 years; let others practice this last scary skill of medicine.  I knew it was my time.  I took a deep breath and put on my confidant actor self.

“Dr. Wood, I’d like the practice” I said as I s tepped into the chaotic room with the code in process.

He handed me the laryngoscope and tube and said “Go for it” , then asked, “how many of these have you done?”

I think the 8 nurses busy putting in IV’s, drawing blood and bagging the patient all stopped at once to hear my response.  “Uh, none, this is my first.” I definitely heard some chuckles.

“When you’re ready doctor” the nurse to my left said.  I said okay and they took off the mask that had been pushing air into her. I moved her tongue, but the blade and light in and lifted her chin towards the ceiling. I then hoped the tiny black hole I saw deep down her throat was her wind pipe/trachea.  I grabbed the tube and I heard someone say “It’s a good sign, she has the one eyed wink”  To see better my left eye was scrunched together tightly.  With a little fumbling with the tube, I finally slid it in and prayed I hadn’t picked the wrong hole leading to the stomach.  A few moments later all the confirmatory signs showed I was in.  “Great job” I heard with a small applause.

It wasn’t until I was out of the room I started shaking. Now I'm a doctor, right.  Intubating is some understood right of passage of residency.  And now I can’t think of any other milestones left to cross!

Happiness?

I read an interesting article about happiness this week.  Ever thought about what happiness is?  This article talked about it being more satisfaction than pleasure.  I think society tends to pursue pleasure assuming it will make them happy- when really it's more about being satisfied.  They did this interesting survey-  what would you pick--- You could make $50,000 dollars a year and everyone else you know would make $25,000.  OR  you could make $100,000 dollars a year and everyone else would make $200,000.  What's your choice? 

Most people in the survey chose to make less money- to make $50,000.  Because to them it was more important to be better off than their neighbors than to actually have more income. Interesting huh?  If only we could learn to be satisfied with what we have, without looking outward for a sense of meaning...I think that is when real happiness and/ or even contentedness occurs. 

Denial

In psychology we learn about all of the ways people cope - sublimation, rationalization, reaction formation, etc.  I think the biggest one I see in clinic is denial.

I am working with a surgeon this month who does a lot of breast biopsies and mastectomies.  He'd shown me a mammogram earlier of a woman with certain cancer- the shaggy white edges of the dense mass on the film was ugly looking, as most cancer is.  He purposely scheduled her biopsy for a day I was in clinic. The woman was a spunky young 73 year old who had never had surgery and was on no medications.  She had also missed several years of mamm's because she felt so healthy.

We used the US machine to find the big mass and then using a fancy biopsy gun took several small pieces that looked like 1/2 inch long spaghetti noodles. Unlike breast tissue, these noodles of tissue where very hard and firm like cancer.  The surgeon said nonchalantly "well, we'll let you know in a few days, but this is undoubtedly cancer"

The woman didn't even blink an eye, and even smiled when she said "oh, now doctor, you don't know that! I'm trusting in THE LORD, I have a lot of people praying for me, it's not cancer".

She looked at me for validation, but I couldn't give it. This was cancer and she was displaying denial.  It's not like we were saying "we'll let you know IF...but we'll let you know what KIND" I smiled back trying to convey the seriousness of the world she was getting ready to enter.  I just hope her absolute confidence in God won't shatter when we tell her the pathology results...  because, the results came back today, and it is invasive ductal cancer.