I have a single purpose in this post. That is, I would like to clarify the difference between hospice care and palliative care. It is a very important distinction, but one that has evolved over the past several years and one that deserves clarification for healthcare providers as well as patients, families and future patients and families.
Before we can talk about palliative care, I think we should define hospice care. I found the following definition on the NHPCO website:
http://www.nhpco.org/i4a/pages/index.cfm?pageid=3285
The term “hospice” (from the same linguistic root as “hospitality”) can be traced back to medieval times when it referred to a place of shelter and rest for weary or ill travelers on a long journey. The name was first applied to specialized care for dying patients in 1967 by physician Dame Cicely Saunders.
Key to the definition of hospice, then, is the reference to "specialized care for dying patients". Hospice focuses on controlling symptoms in the person who is dying. Hospice is about dying well.
Palliative care, on the other hand, is all about providing care to help seriously ill people live the kind and quality of life that they desire. Palliative care is about living well.
Let me provide an example.
John is a 16-year-old with cystic fibrosis. Throughout his life, John has been adherent to his medication regimen and breathing treatments. He has played baseball, soccer and basketball throughout his schoo(l years, and has never been hospitalized - until now. John is admitted for a CF exacerbation and pneumonia. And, he is terrified. He clearly states that he does not want to be in the hospital; that he is worried about falling behind in school; he misses his friends; he has a worked parttime to raise the necessary money to go on his youth group mission trip this summer.
John needs more than antibiotics and breathing treatments - he needs a variety of types of care. He needs excellent medical care to ensure that he recovers from the pneumonia. But John needs more than that. He needs care that addresses his psychological, social and spiritual needs. He needs to stay connected at school, with his friends and with his youth group.
John needs palliative care.
He needs support to ensure that he has the quality of life that he has had up to this point, and that he wants going into the future. John's healthcare team and those who care for him in his natural environment (teachers, friends, coaches, youth pastor, etc.) need to team and work together to determine how to keep the quality in his life.
That's what we do at KU Kids Healing Place. We help keep the quality in the life of a kid. In my next post, I will tell you how we do it.
Quality of life.... throughout illness.... for weeks, months, years. Palliative care ....it is all about living well.
Wednesday, January 18, 2012
Monday, January 16, 2012
'What are you doing for others?'" - Martin Luther King, Jr
April 4, 1968... the day Martin Luther King, Jr. was assassinated. I remember that day vividly - and the days that followed. Little did we know that Robert Kennedy's assassination would occur just 2 months later. But, before I can recount the impact of Dr. King's assassination, I need to paint the picture for you about what had gone before. In the end, I will also let you know how all of this connects to pediatric palliative care and why I do what I do today..
I was a sophomore at an urban high school that was nicely integrated. We had just lived the journey to achieve integration in our schools. When I was in elementary school, there were 2 African American students in my school. By junior high school, the school was integrated, but African American students were still very much the minority, and there was another junior high school, not far from the one I attended, that was predominately African American and another that was predominately Hispanic.
Our generation was at a crossroads in our attitudes. Many, of all races, were raised in families that embraced prejudice and clung tightly to the belief that segregation was the best way to go. White parents and black parents and Hispanic parents spoke of the school pride that was attached to the 'black' and 'white' and 'Hispanic' schools. I do not remember, among adults, a strong desire for change. Rather, I recall a rather complacent acceptance of continued segregation, steeped in fear and ignorance.
But my generation was ready and willing to cast off the past and friendships developed easily between races. We were in a fertile environment of learning, playing sports, engaging in theater and enjoying a wide range of other activities together. Students were interacting, developing friendships, even trying on a bit of dating. We were the experiment in integration and it was working. Integration in our school felt easy; natural.
Then, Martin Luther King, Jr. was shot. He was shot in the evening, and I remember sitting around or tiny Philco black and white TV, feeling shock and confusion. News coverage in 1968 was not what it is in 2012. Stations would break in with small pieces of info: "MLK was shot, condition unknown"; "MLK rushed to a hospital in Memphis"; "MLK has died at the hospital". That was about it.
The next day, it was not "business as usual" at school. People seemed.... tense..... distrustful.....afraid. Literally overnight, our student body became segregated again. Black students did not speak to white students and white students did not talk to black students. The lines were drawn. Fights broke out in school. Cherry bombs and M-80 firecrackers were thrown at students, randomly, by other students. There were rumors that some students were caring guns for protection at school. Soon, we had armed policemen in the hallways of our school.
We recovered - sort of. But the trust and camaraderie were never quite the same. We didn't recapture that special something.... that beauty of natural integration.
But the lessons of Dr. King resounded with us all. We had a heightened awareness of who he was and what he stood for. Sure, we had known that before he was assassinated, but now we owned that. And, he was the king of deep, thoughtful statements that could be held on to for comfort during those very difficult times. Some of my favorites include:
For me, those lessons of my youth has ingrained in me a spirit of asking "What am I doing for others?". Pediatric palliative care (#pedpc) screams that question at every turn. Infants, children, adolescents who are seriously ill and their families share some of the challenges that Dr. King had identified. They are a population who are often seeking equality in healthcare and are struggling for the answers that will enable them to survive the most challenging situations.
So many of my classmates chose careers that responded to Dr. King's query, "What are you doing for others?" Are we still getting that message out to our young people?
I hope so. Because, after all, "Change does not roll in on the wheels of inevitability, but comes through continuous struggle" and "All men (people) are caught in an inescapable network of mutuality".
I was a sophomore at an urban high school that was nicely integrated. We had just lived the journey to achieve integration in our schools. When I was in elementary school, there were 2 African American students in my school. By junior high school, the school was integrated, but African American students were still very much the minority, and there was another junior high school, not far from the one I attended, that was predominately African American and another that was predominately Hispanic.
Our generation was at a crossroads in our attitudes. Many, of all races, were raised in families that embraced prejudice and clung tightly to the belief that segregation was the best way to go. White parents and black parents and Hispanic parents spoke of the school pride that was attached to the 'black' and 'white' and 'Hispanic' schools. I do not remember, among adults, a strong desire for change. Rather, I recall a rather complacent acceptance of continued segregation, steeped in fear and ignorance.
But my generation was ready and willing to cast off the past and friendships developed easily between races. We were in a fertile environment of learning, playing sports, engaging in theater and enjoying a wide range of other activities together. Students were interacting, developing friendships, even trying on a bit of dating. We were the experiment in integration and it was working. Integration in our school felt easy; natural.
Then, Martin Luther King, Jr. was shot. He was shot in the evening, and I remember sitting around or tiny Philco black and white TV, feeling shock and confusion. News coverage in 1968 was not what it is in 2012. Stations would break in with small pieces of info: "MLK was shot, condition unknown"; "MLK rushed to a hospital in Memphis"; "MLK has died at the hospital". That was about it.
The next day, it was not "business as usual" at school. People seemed.... tense..... distrustful.....afraid. Literally overnight, our student body became segregated again. Black students did not speak to white students and white students did not talk to black students. The lines were drawn. Fights broke out in school. Cherry bombs and M-80 firecrackers were thrown at students, randomly, by other students. There were rumors that some students were caring guns for protection at school. Soon, we had armed policemen in the hallways of our school.
We recovered - sort of. But the trust and camaraderie were never quite the same. We didn't recapture that special something.... that beauty of natural integration.
But the lessons of Dr. King resounded with us all. We had a heightened awareness of who he was and what he stood for. Sure, we had known that before he was assassinated, but now we owned that. And, he was the king of deep, thoughtful statements that could be held on to for comfort during those very difficult times. Some of my favorites include:
- In the end, we will remember not the words of our enemies, but the silence of our friends
- All men (people) are caught in an inescapable network of mutuality
- Change does not roll in on the wheels of inevitability, but comes through continuous struggle
- What are you doing for others?
For me, those lessons of my youth has ingrained in me a spirit of asking "What am I doing for others?". Pediatric palliative care (#pedpc) screams that question at every turn. Infants, children, adolescents who are seriously ill and their families share some of the challenges that Dr. King had identified. They are a population who are often seeking equality in healthcare and are struggling for the answers that will enable them to survive the most challenging situations.
So many of my classmates chose careers that responded to Dr. King's query, "What are you doing for others?" Are we still getting that message out to our young people?
I hope so. Because, after all, "Change does not roll in on the wheels of inevitability, but comes through continuous struggle" and "All men (people) are caught in an inescapable network of mutuality".
Tuesday, January 10, 2012
The Death of the Twinkie?!
In addition to Twinkies, Hostess makes the yummy chocolate cupcake with cream filling - the Hostess cupcake (does it have another name?). Remember the delightful little white icing squiggle that swirled down the center of the cupcake? It was always great fun to try to gently remove that squiggle, eating it first, before touching the cupcake itself.
Hostess also gave us Wonder Bread... that soft, squishy, always-fresh bread. My dad had a proclivity for the more expensive Cake Box bakery bread which was a dense loaf of bread. Thus, Cake Box bread (always a bit on the hard side) was the foundation for our daily sandwiches. But when I went to my friend, Judy Alexander's house, I got to feast on Wonder Bread! There were always a lot of fun things to do at Judy's. I will have to tell you about harvesting worms (night crawlers) from her back yard. Don't let me forget!
There were a lot of things one could do with Wonder Bread. Like removing the crust and then squishing the entire piece of bread into a small, smooshed together square of soft, squishy dough. If you squeezed hard enough, the square of dough felt like it was raw dough again. It was really quite magical. And, Wonder Bread made the perfect PB&J sandwich. It was amazingly soft!
Perhaps the best culinary delight that Wonder Bread had to offer was (only at Judy's house!) the Sugar Sandwich. Judy first offered me a Sugar Sandwich when I was about 5-years-old, and I thought it was about the most wonderful thing in the world. One of the really great things about a Sugar Sandwich, is that Judy and I could 'cook' them all by ourselves - quite a feat at 5 years of age! To create a Sugar Sandwich, one spread the bread with very soft butter (you could absolutely destroy a slice of Wonder Bread with hard butter or chunky peanut butter! Had to leave the butter dish out on the counter for a few hours.). After a thick layer of butter was properly applied, sugar was sprinkled on top. Not just a little sugar - a LOT of sugar. I think the butter and sugar together were at least a quarter of an inch thick. That's it - 3 ingredients that led to the perfect food. When you ate the Sugar Sandwich, it had an interesting 'feel'. The sugar provided a slightly irritating crunch to each bite. And, the sandwich was hideously sweet. Mixing the sugar and butter gave it kind of a creepy, sweet, greasy texture. Sweet, crunchy, greasy. It was really quite annoying. A better descriptor might be disgusting.
I did not like Sugar Sandwiches at all. Actually, I hated them (Sorry Judy - I just could never quite tell you). I think it is time that Hostess filed for bankruptcy. What were they trying to do to me, anyway?!
Good-bye Hostess.
A Teamsters spokesman declined to comment. A spokeswoman for Hostess's other main union didn't immediately respond to a request for comment.
Sunday, January 8, 2012
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!
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!
Wednesday, January 4, 2012
A bit of a detour
Okay, I already feel responsible to all of you! And by "all", I mean all 5 of you on here. I don't want to tell you I'll do something and then drop the ball. But, I'm very, very sleepy! I stayed up way too late last night, and have to be up way to early tomorrow morning. So, you may not even notice; none of my large group of followers may even be looking; but I'm here to tell you that I'm not saying anything about families tonight (except that families are very wonderful!). Instead, I am going to go to bed and dream about families. And contemplate all that I need to say about families. And write about families very soon. Probably tomorrow. So, until then, go hug your spouse, partner, parent, child, sibling, aunt/uncle, grandparent, pet or any other family type member that is near. And I'll see you soon!
Snore.....
Kathy
Snore.....
Kathy
Tuesday, January 3, 2012
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.
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.
Monday, January 2, 2012
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
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
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