Who has the say?

What do you do? 

She’s in her 20’s.  She’s battled sickle cell disease all her life, with a list of hospital stays that would fill a notebook.  In fact, she even had a baby while in the ICU. That’s right, hooked up to a vent, on blood pressure medicines; they did an emergency c-section last year in the unit!  They told her family at that time, they didn’t think she’d make it out of the hospital.

But she did.  She was even able to get off the trach (breathing hole in her neck).  So when she came in this time with pain, and called her sister from the ER in a panic saying, “Tell everyone I love them, I think this is it”, no one really believed her.  She even told her sister whatever happened she wouldn't want to wind up stuck on machines.

But she is.  This time in the hospital she had an arrhythmia and her brain had some time without the proper amount of oxygen. She not only wound up on the ventilator, this time she didn’t wake up.  All the scans and tests show severe brain damage.

We sat down with the family- a confusing mix of people.  A biological mom who gave up custody, a foster parent whom the patient verbally said she wanted making decisions, and 2 sisters who are now raising our patient’s child.  We gave them the bad news about her brain injury.  We let them know the neurologist thinks she has only a 5% chance of getting any better.  We painted the bleak picture of putting in another trach, of placing a feeding tube into her stomach and of moving her to a nursing home for people in vegetative states. 

We reminded them of what she told the sister, about the premonition of dying and not wanting to be stuck on machines.  Still, the family said, proceed with all the things that will keep her stuck. 

What to do.  They are making decisions, but maybe not the decisions the patient wanted them to make.  Yet, who are we to take away that hope they have, that 5% chance of her improving from the blank stare, body rigid, hooked up to machines existence that she’s currently in. 

What to do?

A Challenge

There's just something about feeding and children that is inseparable.  Or maybe it's feeding and motherhood? Regardless  I had a case recently that's been one of my more challenging ones personally.

Max was born with a brain condition that didn't allow him to interact with others.  He was blind and deaf, so as you may imagine, touch was not a comforting thing, but an intrusion to his dark silent world. The part of his brain that thinks, remembers, or feels was not formed.  Basically he was living, but not experiencing. 

Max's mom did an amazing job raising him. He ate and slept and cried.  He never smiled and always screamed when being held. He never spoke and his eyes were always closed. His little body grew until one day at age 3 he quit being able to eat.

His mother took him to a children's hospital where test after test was run to determine why max couldn't swallow anymore.  The doctors finally told her, "his body has just outgrown his little brain."  The choice was now hers, should she have the doctors put in a feeding tube or let him live out the rest of his natural life as he was able without medical intervention?

Bravely she decided not to intervene with his disease course.  So he came into our hospice care for the last weeks of his life.

Everyday when I visited Max I had to do a lot of internal work. Emotionally I'd see a little child with an otherwise healthy body asleep, with little thin arms and a dry little mouth. A part within me said "FEED THIS CHILD" and I'd have the urge to find a bottle and at least try to let him eat.  I'd watch his heart beat through his shirt and smooth his hair and pray that we weren't causing him pain.  Logically I'd have to tell myself over and over again that even the smallest amount of milk would cause him to choke and cough and have more discomfort.  I also had to force myself to remember his condition.  This wasn't my daughter that I was starving to death, this was a little boy who had lived his life in the dark, in silence, with an occasional intrusion of touch that frightened him.  A boy who's brain had reached it's limit on what it could support. 

I can tell you that the longer he lived without food or water, the harder each visit became.  In total, he lived nearly 3 weeks with us.

3 weeks that I tried to figure out why I felt so torn about his eating, when almost every disease process we can get, ends with days and weeks of not eating.  Everyday I treat people dying of cancer, of liver disease, of dementia or heart disease, who all quit eating.  It's natural.  So, was it his 3 year old age or the inner mom in me that found it difficult?  Still trying to sort it out.... 

Visions

I'm always intrigued at the things people talk about and "see" as they get closer to death. Especially the things that are unexpected.  For instance:

There's a sweet elderly Jewish lady at the "house" with colon cancer.  She's still very coherent, but isn't eating much anymore, and can't get out of bed.  This week when I sat down for one of our regular talks she said, "Last night I went to Heaven and was told to put my arms around the 2 that loved me most"  I encouraged more by asking who those people were. "Jesus" she said matter of fact like, "He suffered so much, you know?".  I waited a while and she continued, "God was there too."  I asked if he said anything and she broke into such a wide and peaceful smile, "that I was well loved"

Of course people of the Jewish faith believe in Jesus as a wise teacher, but I didn't expect him to be held as one of those who loved her the most. It gives more credibility to her vision because it's not what you'd expect. I'm looking forward to Monday, to see if she's had any more visits to Heaven.  

Impossible odds

Manuel was born 12 weeks early to first time parents of a small town in my state.  The trauma from needing a ventilator with such underdeveloped lungs led to permanent lung damage that required a tracheotomy to be placed.  A ventilator is hooked up to this small hole in his neck at all times.  He also was so young, part of his throat hadn't formed right, necessitating that a feeding tube be placed for him to eat.  One complication after another, until an entire year passed in the children's hospital I'm rounding at this month.  A year in the same crib, same room, same nurses. 

Manuel's mother came to this hospital when Manuel did, and hasn't been back to her home since.  She spends each day with him, and each night at a Ronald McDonald home for parents with sick kids.  Her husband, to keep his job, lives hours away, only able to visit every few months.

As Manuel's 1st birthday approached everyone was in good spirits, because it looked like he could finally go home. He'd still be on the breathing and feeding machine, with visiting nurses everyday to their home, but it would be home.  Manuel's mother, who spoke no English when Manuel was born, now conversed with the nurses with ease about her delight to finally get out of the hospital. 

They had to just do one more CT scan. 

The CT scan showed the unthinkable, some spots on his liver that came back as liver cancer. Completely unrelated to his other medical problems, this child was unlucky enough to have a very rare cancer as well.  You can imagine what a hard conversation it was to sit Manuel's mother down and tell her the news.

The nurses tell me that she took the news stoically as the doctor talked about options for chemotherapy that may cure the cancer, if his little body can survive the treatment.  The cancer is rare enough that someone as sick as Manuel has never been treated.  As soon as the doctor left though, her tears flowed strong and bitterly. 

Manuel is due to start the chemo tomorrow.  His parents decided to give it a shot.  I watched Manuel today chewing on a plastic cap of his feeding tube, laying on his back in his crib, having never sat up, or put weight on his legs, having never said "da da" or even cooed. And now, despite all those setbacks, he has to battle cancer.  Doesn't seem fair.

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.