Introducing JimBob and PeggO

Growing up I never considered Jimmy a nickname.  An uncle once tried to call me Jimbo, which I flatly rejected.   Jimmy was my name.  I loved the way it rolled off my tongue: "Jimmy Ogan". My name had symmetry and a hint of alliteration. 

In middle school, all the Jimmys became Jims.  And I was never Jimmy again, except to family of course.

Somewhere along the way JimBob popped up as a term of endearment.  One of those random attempts at verbal affection.  No one actually  refers to me as JimBob, but I have always liked the sound of it. 

PeggO is another random attempt at verbal affection.

Thursdays at UVA Medical Center in the Department of Neurology are ALS clinic days.  A multi-disciplinary team of clinicians meet with ALS patients and their families to provide highly coordinated, expert care.  Patients welcome expert after expert into their exam room.  Imagine the patients holding court, receiving their trusted advisors one after the next.   It's great.  And it's one of the reasons that UVA is named as a Center for Excellence in ALS care.  

ALS clinic is also a long morning.

Yesterday was ALS clinic for JimBob and PeggO.

PeggO rises early on ALS clinic days, because JimBob needs to eat before clinic, and he needs snacks to get him through the morning.  PeggO makes soft boiled eggs and toast before clinic.  She has decided on 4.5 minutes for the perfect egg.  She's right, of course.  It's perfect.

Snacks for clinic include peanut butter, crackers, oranges, a banana, and shelled pistachios, because they are JimBob's favorite.  In between advisors, PeggO offers snacks.  The exam room invariably smells of oranges and peanut butter.

ALS clinic is an event for JimBob and PeggO.

Maybe you have noticed that exam rooms now have wide chairs that look like loveseats, because many American patients need a loveseat to sit comfortably in a chair.  They should probably offer loveseats on airplanes.

JimBob and PeggO love the loveseat.  They park them selves in the loveseat facing the computer station to hold court, snacks at the ready.

PeggO records every detail in her ALS journal.  She also consults notes from literature reviews, webcasted lectures, and general reading.  She knows JimBob's weight and Peak Expiratory Flow from every visit.   

JimBob provides comic relief.  Every Royal Court has a jester.  JimBob likes being a cheerful patient.   

PeggO and JimBob make an effective team.  The advisors leave smiling and grateful for the opportunity to help.  PeggO and JimBob leave feeling grateful for expert, compassionate care.

The ALS advisors had nothing but good news yesterday.  Functional status measured by the ALSFRS-R remains unchanged, Forced Vital Capacity remains above 100% predicted, and everyone was delighted to hear about the positive effects on JimBob's energy from the AMX00035 he is now taking off-label.  Everyone applauded JimBob and PeggO for running 2-3 miles mosts days. JimBob could do more stretching, and he could eat more protein.  Be sure PeggO has taken note of these necessary improvements. 

As for Righty and Lefty.  

Righty rose to every exam request in good humor and without fanfare.  Lefty struggled to demonstrate strength and coordination, especially in the thumb and between the ring and middle fingers.   Lefty gave it the old college try, and welcomed a gentle squeeze from Righty, a hand hug, after the exam.  God Love ya both.

Every story has a beginning, a middle, and an end.  Our ALS narrative is just beginning.  We are meeting the characters, identifying dynamic tension, developing the plot and a vision for the story arch.  Beginnings consume abundant energy.  Snacks and hugs are essential.

Kindness as Respite

I heard a new one this week.  That is, I heard tell of a simple triumph that caught me up short. 

A family recently put together the capital to buy a van to transport their 12 year old son who requires complete care.  The van came equipped with a lift and more space for his motorized wheelchair.  They were delighted to have new freedom to get around town and to his appointments with less effort.  The van also meant they could hit the road to visit family.   

Imagine you are on the road with your child and you need a pit stop.  It might be awkward to take your young son into the Ladies room, but it happens when they are small.   If your son is 12, they can generally manage on their own, with clear instructions about where to meet and an assurance to wash hands when he is done.

But if your 12 year old son is not independent, and you are traveling alone, what happens then?

This mom's solution:  a Cabelas porta potty for the van. 

Brilliant.  And, what a poignant reminder of the creative thinking, resilience, and unimaginable planning that is required to care for a child with significant needs.  

The porta potty for road trips also seems to me an apt metaphor for the nonstop life of caregiving.

This story got me thinking, once again,  about respite care.  My patients mention the lack of respite care all the time.  Most often it comes in an off-handed comment about how long it has been since they had dinner together, saw a movie,  went dancing.  One mom recently said, "I just want a couple of hours to go to Lowe's with my husband.  I'm so tired of trying to pick out paint with FaceTime."

Respite care is a necessary kindness in the life of constant caregiving.  

Who has not faced the dilemma of finding a sitter when you really need one?  Now imagine if your child has a tracheostomy, receives g-tube feedings, or needs a diaper change when he is 12 or 20.  The pool of sitters suddenly gets a bit smaller, and the risks of leaving your loved one loom larger. 

One small solution in my world comes in the way of undergraduate nursing students.  Our School of Nursing maintains a list of families needing respite care.   The students contact the families directly and work out the arrangements.  Frequently, the families grow close to the students and follow their progress through school.  It is a stopgap measure for sure--one more piece of the caregiving puzzle.

Not long ago, I visited a number of pediatric hospices across England.  Each health district in England has a pediatric hospice where families can utilized respite services.   For some families this makes a vacation possible, or a short trip for a family wedding or funeral. This seems such a sensible pubic service that respects and supports the family caregiver.  

The Legacy of Kindness

Health care is always delivered by a team.  The more complicated the clinical condition-- the more education or training involved in our care-- the larger the team.   Even when we are alone in the room with our patient, there are people outside the room who are arranging for labs and referrals, preparing a room for the next patient, answering the phone, giving shots or drawing blood, and most certainly there are people seeing to the details of insurance coverage, billing and collections.   Clear communication and efficient coordination across care teams are always a challenge. 

Some of the children I care for have 20 or more active participants on their team.  And the teams extend well beyond the walls of our clinics and hospitals.  Consider the special education teacher who supervises a g-tube feeding for her student, or the school nurse who gives daily medications that help to control my patient’s dystonia, or involuntary drooling or seizures.   Think about the whole range of in-home services for occupational, physical and speech therapy.  Respiratory therapists work with my patients who live at home on mechanical ventilation.  Care coordinators help to organize services and appointments and transportation.  Social workers are essential for support and the application for essential benefits.  Psychologists work with behaviors and coping strategies. 

Many of my patients have as many as 8 or 10 subspecialists who guide treatment and diagnostic work-ups.  It can be a dizzying array of people and personalities, each with a unique and active role on the team.   The families who need to manage the workings of a complex care team have seemingly countless opportunities to receive kindness or encounter more struggle.

Sometimes we--as individual members of the care team-- forget or underappreciate the vastness and complexity of the team.  We may overlook the synergistic stress that accumulates for the patient and their family caregivers as they move from appointment to appointment, decision to decision, fear to more fear. A routine appointment to discuss insufficient weight gain, could very well be a moment of brutal reality for a care-giver.  Despite arduous attempts, over months or years, with many skilled providers, their beloved child is not thriving, and today is the day when the realization hits home.

The kindness required at these points is no less necessary than at other moments.  A kindness deficit, however, is going to be glaring and memorable.

Kindness in the face of synergistic, cumulative care-giver stress can be as simple as a moment of silence.  Sitting quietly, with compassion for the emotion in the room, is a way to practice kindness.  Allowing for the care-giver to ask the same question over and over, as they try to take in what is being said, is another way to communicate kindness.  Stating clearly that we are not going to abandon the patient and their care-givers, when we have exhausted all currently available therapies, is perhaps the ultimate kindness.

When my wife is the attending physician on an in-patient care team, she meets with the medical students first.  She outlines her expectations for their successful and active participation on the team. Among her expectations are that they model kindness and compassion in two concrete ways.  First, they must include one descriptor that humanizes the patient.  “Mrs. X is a 32 year old English professor whose specialty is Dickens.  She is being admitted for.. . .”  “Mr. Y is an 82 year old grandfather of 12 who is very concerned about his dog Rex.  He is being admitted for . . . .”

The second required practice of kindness for medical students on my wife’s team is to be sure that the patient is put back together before the team leaves the room, and to ask the patient directly if there is anything more the team can do for them before they leave.  The student is responsible to model for the team these simple acts of kindness.  “Mrs. X, can I help you get your gown tied?  Here, let me get your tray table back in front of you so you can finish your breakfast.”  As the team prepares to leave the room, the student is expected to step up and ask, “Mr. Y, is there anything else we can do for you before we leave?”

My wife says that invariably the patients and their families are grateful, often returning the offering of kindness with their blessings for the team and their day.  “No, I don’t think I need anything else right now, but thank you for asking.  And you all have a blessed day.”

 There is, quite often, a ripple effect from the student’s kindnesses, as residents also begin their introductions with a humanizing adjective or clause.  In fact, there have been teams who get a little competitive to see who can discover the most insightful patient descriptor.  “Mrs. Z is an 88 year-old former Army nurse, who met her husband on a hospital ship during WWII.  She is being admitted . .”

Students remember these experiences of kindness.  Certainly, their offerings of kindness humanize the patients, who will ask for the student by name even after the student has moved on to another rotation.  The acts of kindness and consideration also humanize the students as future doctors.  The practice of kindness allows the student to build deeper trust and connection with their patients.  The complexity of the patient’s illness or disability is set in the legacy of a life, and encountered as another human being with whom they have a unique and privileged relationship.   Offering kindness has its own profound legacy.