Saturday, March 23, 2019

Expanding the Frontiers of Hope

With the advancements of science and technology, it is now possible to reliably diagnose rare conditions early in pregnancy.  Likewise with the explosion in genetic analysis, we can now identify the cause of previously uncharacterized syndromes.  Whereas these diagnostic capabilities offer the certainty of a diagnosis, they also have the potential to launch families into new, and often uncharted waters filled with an array of questions about the future.

Many rare conditions carry risks of future cancers, intellectual disability, autism, psychiatric co-morbidities, or seizures.  The risks of future diagnoses are based on small numbers of patients with conditions that have variable presentations and outcomes.  Parents are faced with statistics that we might try to represent as a slim possibility, but we must remember that they are seeing this slim possibility through the lens of a parent whose child has a rare condition.  

Receiving a diagnosis of a rare condition seems such a random and unimaginable event,  making the leap to seeing your child with a series of future random and unimaginable events is actually rather obvious.   If we add to this the anachronistic label of “lethal diagnosis”, the advent of rapidly expanding technological boundaries may not seem so comforting. 

My experience has been that most parents will do anything within their means to help their children.  Parents of children with disabilities or medical complexity are no different and are frequently quite innovative in their attempts to create opportunities for participation and inclusion.  When the status quo is not enough, they advocate for something different or they figure out a way to make it work. 

Statistics also provide a window into survivability.  We know with certainty that many conditions carry the prognosis of a limited lifespan.  Since it is nearly impossible to predict the length of a lifespan, especially as the boundaries of science and technology continue to expand, we land, once again, in the arena of uncertainty.  Parents and clinicians alike must learn to live with uncertainty.

So, where does hope fit into this equation?  We all need hope to continue in the day-to-day care of our children and patients.  We certainly need hope to support one another.  We also need hope to innovate, to advocate, to make meaning and to risk love.

And what about the notion of false hope?  If we know that an outcome is unlikely, is it wrong or misleading to encourage abundant hope?  Is it truly in the best interest of the patient, family or clinician to protect each other from the disappointment of a sad outcome, even if it is anticipated?  Is it any less sad if it is unexpected?   Is it false hope, to imagine with a parent that their child will walk, or talk, or make it to Disneyworld with a ventilator in tow?  I don’t think so.

Encouraging hope in a parent or caregiver is an act of kindness.

Recently I was invited to take part in an annual round table dinner-discussion hosted by the Anne L. Brodie Fund for medical education.  The fund also supports students as they learn the "skill and heart to care for patients" with the aim of becoming The Brodie Renaissance Physician.

The Brodie Renaissance Physician: Is called to artful, compassionate, 
patient centered care. Takes responsibility for the whole patient / person. 
Is adept with the newest technology but also possesses 
finely honed listening and physical exam skills 
to limit dependence on technology. 
Strives to improve on each individual patient encounter, 
and also on systems of practice. 
Is a scholar, teacher and role model.

In preparation for our dinner discussion, each guest was asked to reflect on the intersection of technology and caring, and to give an example of a situation where technology could never replace the physician.  Offering hope, and expanding the frontier of hope seemed an apt example from my work with families of children with medical complexity.

As I have gotten to know families whose children carry a “lethal diagnoses” or live with significant, life-limiting disability and medical complexity, I have seen magnificent hope blossom amidst slim possibility for success.   I have experienced the frontier of hope expand as parents and clinicians join together with proximity to the challenges and the risk of disappointment. 

Extending hope across the chasm of feared disappointment is a great kindness.  Learning to expand the frontier of hope is as significant as extending the boundaries of science and technology.   We need to challenge ourselves with equal energy and determination on both fronts.

Saturday, April 7, 2018

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.  

Saturday, March 17, 2018

Arnold P. Gold: A Legacy of Hope and Kindness

Ellen Seidman writes a blog called Love that Max: Kids with Disabilities who Kick Butt. In a recent post titled "You never forget the really kind doctors (or the not-so-kind ones)" she recalls an encounter with Arnold Gold, a pioneering pediatric neurologist.

Ellen's son, Max, suffered a stroke as a newborn.  She met Dr. Gold while Max was in the NICU and their world had turned upside down.  "Babies can have strokes?" she wondered in panicked disbelief.  What Ellen remembers most about Dr. Gold was his warmth and how he talked with them about what was possible instead of what was ominous. He concentrated on how they could help Max.  He provided hope at a time when their world seemed to be collapsing around them.

Arnold Gold saw patients until the age of 88.   He passed away in January, but a foundation named for him lives on.  It's mission is to support the humanistic passion that motivates clinicians to enter healthcare in the first place.  Here is their mission statement:

The Arnold P. Gold Foundation’s overarching goal is to create the Gold Standard in healthcare – compassionate, collaborative and scientifically excellent care – to support clinicians throughout their careers, so the humanistic passion that motivates them at the beginning of their education is sustained throughout their practice. We strive to ensure that care and respect always govern the relationship between practitioner and patient.

One of the signature innovations of the Gold Foundation is what we call the White Coat Ceremony.  The ceremony serves as a rite of passage for incoming students and is a way to elevate the value of humanism as the core of healthcare.  For physicians, it includes reciting the Hippocratic Oath.   Many schools now engage their students in a collaborative process to write their own oath which they will recite again at graduation.

In 1988, well into his academic career, Dr. Gold was conducting rounds when a new medical student presented a patient as the "the brain tumor in 209."  According to his New York Times obituary, Dr. Gold's response was just as you might suspect.

‘The brain tumor? Isn’t there a child involved in this? Tell me about the child, tell me about the family. Tell me how this is impacting on the family. Do you know any of this?’ ” 

Apparently, the student knew nothing of the humanity of their patient, and so began Dr. Gold's quest to protect and support the humanistic passion that motivates students at the outset.  He focused on what was possible and thereby has left us with an enduring legacy of hope and kindness.

Saturday, February 17, 2018

Bystander Kindness: Speaking Up and Speaking Out

During a recent well child check up, I asked a quiet 6 year old about school.  With a gentle prompt from her mom, she talked to me about how she's been trying to learn to speak up for other kids.  Intrigued, I offered that this is something grown ups need to practice as well.  Nodding in agreement, she said, "Sometimes kids make bad decisions and are mean."  "Yep," I responded, joining her on the carpet to play. "And then what do you say?"

Without looking up from the kitchen toys in her lap, my sweet six year old patient said, rather matter of factly, "I go up to them and I say, Stop saying that, it's mean." 

Speaking up and Speaking Out can be acts of kindness.

Learning to Speak Up is a necessary part of parenting a child with special needs.   Too often, parents second guess themselves as they advocate for their child's health.  "Am I becoming that parent," they wonder.   You know, the parent that the staff talks about in the break room-- the demanding or pushy ones. 

Parents soon discover that building a relationship with the provider makes advocacy easier.  There is a little dance they learn, a shuffle of sorts, between wholesome friendliness and immobile assertiveness.  When the provider likes to dance and everyone agrees on the music, well, then we've got a good time.  Whether it's liturgical or artistic, or improvisational, the dance flows and people feel connected and in sync.

Unfortunately, the dance is not always so smooth.   Grown up clinicians make bad decisions and say mean things.   Often, their comments and assumptions result from a lack of proximity to the reality of the caregiver's life.

Speaking Out takes courage when you may alienate the very people whom you depend upon to care for your child's well-being.

Bystander kindness is Speaking Out for the vulnerable, voiceless or marginalized.

Bystander kindness can be using our words and actions to create increased proximity between the world of the caregiver and the world of the health care team.   Beginning with a compassionate statement creates an invitation to increase our proximity.

"I imagine it's been hard to get much sleep since Henry has been so fussy.  When was the last time you got a decent nights rest, Mrs. Clark?"

"It is so stressful to watch a child lose weight.  I imagine you must be frantic with all of her retching."

Assuming positive intent and staying curious also open the door to increased proximity and a deeper awareness of the caregiver's reality.

"Tell me a bit more about what you mean by nothing seems to be helping?"

"What is your best guess about what is going on?"

And, sometimes, let's face it,  someone needs to push re-set with an apology.

"I'm really sorry, it seems that we have gotten off on the wrong foot.   Let's try that again.  This time we are going to do our very best to listen carefully to your concerns and questions."

Anyone on the team, or in the room, can Speak Out with bystander kindness.  With a deep breath we can all be back in the dance.

"I go up to them, and I say, Stop saying that, it's mean."  Kindergarteners can be so direct.  I wish it were so easy in our adult daily lives.  I wish it were always as safe.

Bystander kindness can also be compassion after the fact.

The elevator door closes leaving a shocked young medical student in a hijab speechless and near tears.  Confronting the angry man who has just hurled a racial slur, may not be safe.  Comforting the woman takes only time and acknowledging the horror of what happened.

"Oh wow.  Are you OK?  I'm so sorry that you had to hear that.  I hope you never have to hear that ever again."

Parents tell me that people often stare or try not to stare at their children with special needs.  One mom recently told me that "the crowds part at the Farmer's Market," as they move along looking for fresh produce and warm donuts.   Is it the wheelchair, the ventilator, the oddly contorted smile on their child's face?

Bystander kindness at the Farmer's Market on any typical Saturday morning might look like casual conversation about the best booth for beets.

Jerron Hermon, pictured above, is a professional dancer with hemiplegic cerebral palsy

Sunday, February 11, 2018

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.