Sit. Speak.

I am a dog person.  I have always liked dogs; over the course of the last few years I have grown to love dogs.  I also like dog people.  Most of my friends and family have dogs.  The charming thing about dogs is the way the give - and receive - love unconditionally.  And, people who live with dogs seem to have that same, laid back, easy going way of caring for, and about, people. 

Dogs let you know that you are important to them, and they like to take care of their people.  For example, my little 9 pound Papipom licks my ankles dry for me every day when  exit the shower.  And, there is something magical about the way my 45 pound Wheaton terrier lays across my feet, keeping them toasty warm all night.  I really think he understands that my feet are eternally cold. 

Professionally, I have had the chance to see dogs do amazing things with people who are sick.  I started the Pets for Life program in our pediatric department about 15 years ago.  We have
welcomed dogs, cats and even a bunny into childrens' rooms.  But, it is the doggies that do the most for kids.  Like the 18-month-old from the burn unit who, when out of isolation, toddled to the golden retriever and laid on top of the soft, amber fur, stroking the dog's locks.  There was an instant connection between babe and dog, and their love for one another was almost tangible.  And the 15-year-old who had just learned that he was now a quadriplegic after a gunshot wound to the spine.  As he snuggled with a little Chihuahua, he confessed that this was the first time that he had touched an animal without hurting it, and further shared that it felt very good.

  

My Harry is a soft-coated Wheaton terrier who has 'issues' (he sometimes stands in corners, staring at the floor; he sits on my lap and then becomes terrified and jumps down very aggressively; he barks at shadows).  Bamboo is the dog of my dreams.  He is half pomeranian, half papillion and he adores me as much as adore him. 

Bamboo started out in the world a step behind (literally) his brothers and sisters.  His mother chewed off one of his hind legs, thinking it was his umbilical cord (consequently, she was not nominated that year for the Canine Mother of the Year Award!).  His leg was gone up to the knee, and when he was about 3 months old, the bone grew and pushed out of the skin, requiring an amputation at the hip.  But Bamboo has never skipped a beat.  He runs, jumps, does sommersaults and he is completely joyous!  He loves life and everything and everyone in his life.

I'm not sure how - or why - someone could live without a dog! 

It's a Family Thing

In 1983, I met Jeff - an incredible, bright, energetic 7-year-old boy  who was diagnosed with Ewing's sarcoma.  Ewing's sarcoma is a cancer that usually occurs in the long bones of the arms or the legs.  It usually occurs during adolescence, so Jeff was very young to be diagnosed with Ewing's sarcoma. The tumor involved all of his femur, or thigh bone.  With bone cancers, the only chance for achieving long term remission or cure includes surgical removal of the tumor and about a year of chemotherapy treatments.  For some teenage patients, a titanium rod or a cadaver bone is used to replace the affected bone, resulting in 'limb salvage' surgery and the retention of the young person's leg.  However, in Jeff's case, the oncologic orthopedic surgeon determined that, due to the size and location of the tumor and Jeff's age,  the only option was to amputate his leg at the hip.  My job was to prepare Jeff for the surgery.  More about that in a future post. For now,  I need to stay on the topic of  'the family affair'!

Jeff was the youngest of three children, with thirteen and fifteen-year-old sisters.  His mother was a stay-at-home mom who spent all of her time at the bedside of her little boy, and Dad was a successful business man who visited Jeff and Mom in the evenings.  They were a strong family, and they put all of their focus on Jeff and his needs.  Their large, extended family.was there to help, also.

Over the course of the next year, I had a lot of opportunity to observe Jeff and his family as he spent most of the year in the hospital due to complications of his disease, surgery and chemo treatments.  His spirit was indomitable; his zest for life never wavered.  Nor did his family's support.  Mom, literally, did not leave her son's side for any reason.  At one point, Jeff was in the hospital for 7 weeks and Mom did not go home during the hospitalization, even though home was only 15 minutes away.   Dad came straight to the hospital from work and stayed until about 10:00 p.m..  Jeff's sisters came to the hospital  a couple of times a week for about an hour.  Extended family members  provided care for the sisters, cooked meals, mowed the lawn, shoveled the snow, did Mom's Christmas shopping and much more.

And Jeff's family began to fall apart.  Mom was exhausted and overwhelmed with her son's declining health.  She had lost her connection to Dad and to her two daughters.  She knew that had happened, and expalined over and over again that she had had no choice; after all, Jeff needed her constantly.  Dad began to become more distant from his family.  He frequently encouraged his wife to come home for a few hours and to start spending time with her daughters again.  After a few months,  he quit coming to the hospital every evening and only visited every once in a while.  Jessie, the thirteen-year-old sister, began to experience declining grades and also started acting out at school and with extended family members.  Jessie and Dad became very close throughout Jeff's illness. Fifteen-year-old Erin became extremely rebellious with Dad.  She started hanging out with a different group of kids, a group that had a reputation for getting into trouble.  Dad caught Erin sneaking out of the house several times, and one time he could not find her anywhere for 2 nights.  Dad called the police and reported her as missing.  After that, Erin refused to even speak to Dad.  Erin finally confided to her mom, at the hospital one weekend, that she had been experimenting with drugs and that she was pregnant.

When I met Jeff and his family, I was at a very early stage in my career at the hospital  Surely,  I thought,  their problems were very unique;  most families do not have these types of problems.  However, I soon learned Jeff's family displayed very typical issues of a family with a seriously ill child.  Of course, some families exhibit far fewer challenges and some exhibit even more.  But it is universally true that, when a child is diagnosed with a serious illness, the whole family suffers in some way.  The impact of the experience on the family cannot be eliminated, but there are ways to lessen the impact.

Today, we ensure that the ill child and their family members receive support along the way.  Palliative care is providing support for the journey.  Palliative care focuses on the quality of life of the patient and family in the physical, psychological social and spiritual realms of existence.  When palliative care starts at the time of diagnosis, it is possible help families predict difficulties and to avoid or lessen the effect of most of them.

Our team of physicians, educators, social workers, psychologists, nurses and more are caring for families in a very proactive manner, enabling them to predict where their pitfalls may lie,  and providing them with the tools that can enable them to avoid those pitfalls.  It is very difficult work for families, but when people love and are committed to one another, positive outcomes do occur. 

Almost 30 years later, I am amazed at how much better understand children, families and serious illness than we did in 1983! Palliative care used to be synonymous with a type of care provided at the end of a person's life to help ensure a "good" death.  Now, we know that attention on palliative needs of a patient and family ensures the best quality of life for all, whether the patient proceeds to cure; transitions to adult healthcare; or progress to end of life.

I am proud to be part of this bold, new form of care! I do not often see families with the complications experienced by Jeff's family.  I wish we would have known then what we know now! 

On a roll

So, perhaps I didn't jump in or jump off... rather, I rolled in!  Posting on day 2 makes me feel like I am on a roll - two post feels more like a real blog than one post did. My goal for today is to post sentences that make sense!  I read a couple of sentences from yesterday's post that suggest that I was dozing a bit as I wrote :)  I have developed a new skill in doing that.  I can close my eyes, feel my mind drifting off to sleep and still type!  But it is often very odd things that I type, that's for sure.

People frequently ask me how and why I approach pediatric palliative care as I do - from a community based, natural environment of the child perspective.  The answer is actually quite simple:  I was not trained as a health care provider.  I didn't go to medical school or nursing school.  Thus, I think more about where a child exists than about where a child is treated.  Most pediatric palliative care programs originate in a hospital or a hospice/palliative care program. A medical model drives the conceptualization of what palliative care should be, and that is a set of services and a care plan that includes rich set of medically based interventions. 

I, on the other hand,  trained in a program (KU's special ed program - #1 in the nation, of course!) in the 1970s where the focus was on the individual.   We believed that the child drove the bus (or built the pink castle) and we were there only to lend a hand if the child got into a jam. Children needed to learn to survive and thrive. 

When you think about it, children spend, during the school year, about 33% of their time at school and another 33% of their time sleeping.  By now, you have probably figured out that there is another 33% of their time remaining (okay math majors, 34% remaining!).  Think about your childhood or the childhood of your children.  Did you spend your evenings sitting in the living room talking to your parents?  Of course not!  Rather, kids and teens (*side note:  whenever I use the term 'children', 'child', or 'kid', I am referring to every creature from birth to age 21 ... or sometimes even older) spend most of their afternoons, evenings and weekends with friends, talking to friends, hanging out with friends at Youth Group, doing activities with friends at Girl Scouts, playing sports with friends, just playing with friends.... they are busy LIVING!!!  Thus, the focus on their physical, psychological, social and spiritual needs must exist in the places they are living, growing, playing.  Their friends need to be 'doing' palliative care with them; their teachers, spiritual leaders, coaches, bus drivers, all need to be aware of what the child is experiencing, and be ready to help them continue to live, grow and achieve to the greatest extent possible. I believe in "takin' it to the streets", and the 'it' is palliative care.

Palliative care, therefore, needs to focus on quality of life. It needs to address how a child, with a serious illness, can grab the gusto and get the best out of life.  To work, it has to start when a child is diagnosed or injured - when their big challenges are beginning.  Our palliative care program does not work on helping a child die - rather, we help kids live.  And, of course, if the end-of-life becomes a child's reality, we take care of the child and family and enable them to drive the bus, making the decisions that they want/need to achieve an end-of-life situation that is what they ordered.

Tomorrow, I am going to talk about family... moms, dads, brothers, sisters, pets, grandmas, grandpas, cousins, aunts, uncles and all the greats, grands, seconds, once-removed and anyone else that is hanging around!  Because it is really true - a serious illness in a child affects every person in the family.

Jumping in

It feels, in regard to blogging, as if I may be jumping 'off' rather than jumping 'in'!  I have known for some time that I both need and want to write a blog, and here I finally am... jumping off or in.

I am a bit of an anomaly, professionally speaking.  Today, I am the director of a pediatric palliative care program in a tertiary care hospital located in the urban core of a mid-western city.  And, I am a teacher. That's right:  a bachelors degree in elementary education and a masters in special education.  I suspect that I am the only teacher who is directing a pediatric palliative care program!  But, it is working and I am proud of our program and my journey to this point.

I trained (bachelors and masters degrees) as a special education teacher.  "Back in the day", when I was in college, special education teachers really specialized.  There were a variety of types of special education classrooms and programs, each separate from one another.  For example, in one school there may be separate classrooms for students with learning disabilities, hearing impairments, vision impairments, emotional disturbance, behavior disorders, health impairments, giftedness, and 4 separate classrooms for students with mental retardation:  mild, moderate, severe and profound.  During one's teacher training, you determined what type of special educator you wanted to be, and I decided to study to become a teacher of the "crippled and other health impaired".  Now, thirty-some years later, that terminology sounds inappropriate; insensitive.  But, at the time,  we believed that each of these special education categories, each group of students had unique types of learning needs.  For my students who were "crippled and other health impaired" (COHI), I used a special curriculum .... a separate reading, math, social studies and science text book....designed specifically for COHI learners.Amazing how much we have learned in the past 30+ years!

Today, we take a completely different approach to special education.  Inclusion is the norm, and students with a wide range of special needs are educated alongside other students with a variety of special needs,  and alongside their peers who do not have special needs or who may be gifted and talented.  There is no doubt that the social benefits of inclusion are significant.  Students with special needs are now being educated in the same world in which they work, play and live - in the real world.  I do think we did a smashing job at educating kids when special education ruled the world of learning.  It was common for learners to have their own, personal paraprofessional to help them with learning tasks that may be difficult for them to master without assistance.  So, students had a teacher AND their own tutor or helper.  I don't think they were as prepared to live in the real world, but I do think they were better prepared academically.

Back to who I am.  For some reason, I decided, at age 50,  that working toward a PhD would be "fun".  Often, over the course of he next several years, I pondered where I had determined that anything about earning a doctorate degree would be "fun" and it did cross my mind that a mid-life crisis little red sportscar would have been cheaper, easier to attain, and a lot more fun than earning a PhD!!  But, I wanted to study everything there was to know about children with chronic health conditions; how they learned; how they lived; and how they died. 

I applied and was accepted to the Therapeutic Sciences doctoral program.  It seemed to be a perfect fit:  an interdisciplinary program that would enable me to take courses from all schools at the state university - nursing, psychology, preventive medicine, public health, health policy and management, social work, etc. The foundation of the program was to change the way one viewed disability, and to focus on research, clinical practice and an attitude that recognized what people with disabilities could do, rather than what they could not do.  And I did choose the right program - it was a perfect fit, allowing me to learn all the things I needed to know about kids with chronic conditions. Five years later, I had earned my PhD and learned a lot of really good stuff! 

So here I am.... the director of a pediatric palliative care program!  And I think my perspective of appreciating the role of learning  to cope with any life challenge has been amazingly valuable.  I see pediatric palliative care through the lens of home, community, school, friends, sports.  Just as a patient needs to be dismissed from the hospital, so should pediatric palliative care!  Pediatric palliative care happens everywhere the young person exists, not just in the healthcare facility where they are receiving care. 

And, I know that teachers, friends, clergy, coaches and others who interact with the child do not, inherently, know how to provide palliative care.  We have to teach them!

I teach palliative care via interactive distance learning, telemedicine/telehealth and in face-to-face sessions.  We work to ensure that the child goes back to their home community to an environment that enables the child to continue to grow, succeed in school, date, be a boy scout, take dance lessons, etc. and work to become a fully successful adult.

So maybe every pediatric palliative care program should consider bringing a teacher into the program.  We do offer a new, fresh perspective!

I can't wait to tell you about my approach to palliative care - but I must.  It is late, I am sleepy and you have probably read quite enough for my first blog.  See you soon.

Kathy