I have been an errant blogger ... life has interrupted my desire to blog. First and foremost, I have a lovely new granddaughter. She is one month old and I marvel at how such a tiny being has become such a huge force. I miss her when I do not see her for a day or two. She has caused me to reflect, in a different way, about children who die.
Since I have been working in pediatrics for 30 years, I have experienced the "what-if-this-were-my-child" phenomenon for many years. When my daughter was five, every headache signified a brain tumor, not yet quite big or intrusive enough to cause more marked symptoms. My son's plight seemed to be acute lymphocytic leukemia: swollen lymph nodes, aching legs, fatigue. I do not say this to make light of either of this horrific conditions; I am not making fun of the diagnoses and, certainly, am not disrespecting those who have these diseases. Rather, I am just saying that I have long worried about my children's health.
Now, I have a new perspective - but not one that is better. Now I worry about this precious grandbaby. And about her precious parents. Now I can step back far enough to realize that the reality of the experiences of parents, siblings, grandparents, aunts and uncles and others who love very sick children must be unimagineably awful, sickening, screamingly over-the-top terrible. Now my heart hurts for kids and their families more than ever.
As someone who provides psychosocial support to families of very sick infatns, children and adolescents, I realize that we are unable to ease the pain much. We try, but do we ever really succeed?
I hope so.
I fear not.
Showing posts with label children. Show all posts
Showing posts with label children. Show all posts
Thursday, May 31, 2012
Monday, March 5, 2012
Happiness: From whence does it come?
I am happy. I am very happy. You may not realize that when you look at me because, at my age, I don't run around and jump up and down anymore. I don't giggle out loud or tell jokes when I am with a group of friends. I'm not sure if I even smile a whole lot, although I hope I do because I think people look much younger and prettier when they smile. The point is: You may never know I am happy by looking at me, nor might you anticipate that I would be a person who would be happy.
I have wondered about it myself. There are several reasons why the experts might believe I would be unhappy. I live alone: statistics say that people who live alone are often depressed. And, I am getting older. My daughter has an Ap (new word in our lexicon - is it capitalized?) on her cell phone that has everyone's birthday on it. Mine is in red this year because this year's birthday is what her phone calls a 'milestone birthday'. It ends in a zero, so I guess that's all it takes to make it a milestone. Depression is a common concern in 'the elderly" (good grief - is that soon-to-be demographic?!). Further, I really need to lose some pounds. I have thought about that and joined a gym and Weight Watchers. I just need to go to one of them. Maybe both. I would do so if I could seem to get out of work before 7 p.m. The point is: Excess weight has been shown to be correlated to depression. And, I work with very sick children and their families. Some of them even die, and many of them have significant pain and even suffering. That, for all intents and purposes, should lead to some real sadness.
But, I am happy. I am not on antidepressants. I am just continuously happy. And, I feel like I need to figure out, and explain, why.
I think I have figured it out, for the most part. It is really the above list that may be credited with my happiness. Consider the fact that I work with very sick children and their families. I will not deny that, some days, I see and am a part of some very sad things. But, every day, I also get to observe families at their very best. I see parents who devote themselves, completely, to their children. I see siblings who make cards for their sick brother or sister and sick kids who want to share their gifts with their siblings at home. I get to watch grandparents, aunts & uncles, cousins, friends, classmates and others work to figure out how they can help the family of the sick child. In other words, I see love in action. No one is arguing about the bad call that the umpire made at the brother's baseball game, or the fact that the algebra teacher asked the sister in the family to stay after school - so she could help her with a tough assignment and, while in the process, give her an extra dose of TLC while her little brother is dying. No one yells at one another over the routine, insignificant matters of the day. Rather, they spend every moment cherishing one another and the time they have together. Of course, there are exceptions to this description, but most families grab the gusto while they have the chance to do so.
And, observing the pain and beauty of these families, reminds me of all that is good in my life, great and small. My weight and my age become meaningless. My health, other than a bum knee, is remarkably good 'for my age'. I eat healthy foods, sleep very well, and do a bit of exercise (I need to increase that).
And, I really don't live alone. I live with two amazing dogs who entertain me and love me unconditionally. They are really terrific roommates and company, and they let me watch whatever I want to on television or read a book or have friends and family over for dinner. And let me tell you, I thoroughly enjoy 'living alone'. I have the best of both worlds: I thoroughly enjoy my own company, and I have a very active social life. I can choose which I want, when I want. Not bad if you ask me!
Most importantly and at the root of my happiness is my family. My amazing, wonderful family. I have a daughter and son-in-law, only a few minutes from me, who are waiting, with eager anticipation, for their adopted baby to find his or her way to them. They so excited for that amazing moment when they become parents! My son was in the Air Force during the wars in Iraq and Afghanistan, but he came home to me, unscathed. He and his adorable wife live about 30 minutes from me and are an amazing, loving couple.
I have a sister who supports me and my kids in every challenge. As a police chief, she gives very sound, practical and excellent advice! My brother, sister-in-law and their family live in NC. Jack and Betty, my 85-year-old uncle and aunt are still (although tenuously) living on their own, with me doing their grocery shopping and visiting weekly.
And I have Kim, my best friend, confidante and greatest cheerleader. Kim works with me, so understands the ups and downs of my work in a way that is very comforting. Our friendship ensures that I am never lonely. I can always call Kim and she is ready for a movie, some shopping, or even a vacation together. She spends every holiday with us, and I, along with all of the rest of my family, consider her to be family, as well. Yes, I am blessed with an amazing family and they give me strength and joy every day.
So, we are back to where we started. I'm happy. And this time, I am not trying to explain it or apologizing about it! I have every reason in the world to be happy. I have an understanding of those things that create happiness, and I take very good care of them: my children, my family, my health, self-care.
Yep, I am happy. I am very happy. And, I am smiling!
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!
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
Subscribe to:
Posts (Atom)