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.
Thursday, May 31, 2012
Thursday, March 22, 2012
Bartholome Lecture
Today we had the opportunity, at the University of Kansas Medical Center, to remember and honor one of our own - Dr. William (Bill) Bartholome, who died at the age of 54 of esophageal cancer. To say that Bill's contributions to the field of pediatric ethics were significant would be an understatement, for sure. At today's Bartholome Ethics Conference, two dynamic pediatric ethicists, Dr. John Lantos and Dr. Chris Feudtner, gave presentations that would have surely made Bill proud.
Our institution was the first in the nation to have a pediatric patient rights document; because of Bill. Soon, pediatric hospitals and units across the country were boasting new pediatric patient rights documents; again, because of Bill. In the mid-1980s, the first time I did a literature search on an ethics topic, most of the references I found were those of Bill Bartholome. He wrote articles, gave lectures, and taught students, residents and faculty that pediatric patients were individuals with developing decision making capacity and, as a result, that they should have a voice in their health care decisions.
In the mid-1980s, this was a rather shocking perspective. Prior to that time, parents had been the sole decision maker for their child and, legally, continue to be. But Bill was charting the course for ethical decision making. He was teaching us about what we should do and how we ought to treat children.
I was relatively new in my role as the school teacher and when I received a faculty appointment, from the Chief of Staff, to the Pediatric Ethics Committee, I thought I was pretty hot stuff! What I did not realize, at the time, was that I was about to have an opportunity that most would covet - the chance to learn from the master!
Maybe it was Bill's charisma. Or, maybe it was that this was heady stuff - a new direction in pediatric care. Or, just maybe it was that we knew we were setting the bar for how all children would receive health care in the future. Whatever it was, we soared to new heights on our pediatric ethics committee. We created pediatric patient rights booklets and we developed training materials and a schedule to follow as we set out to first train the providers in our institution; then the world!
It was touching today to see how many of Bill Bartholme's followers came out to honor him. There were 5 members of Bill's family, and several other family members who sent their well wishes. There were medical students who had heard of him and faculty who had known him. And, there were 'new believers' who listened attentively to the lessons Bill had taught us some 25 years ago, and listened as attentively now as we had then.
Bill was a bit magical, and so were John and Chris today. Their presentations built upon those things that we had learned years ago and called upon us to do more; do better. We must continue to advocate for the smallest and youngest of patients, who may or many not be able to advocate for themselves.
I'm ready!
Our institution was the first in the nation to have a pediatric patient rights document; because of Bill. Soon, pediatric hospitals and units across the country were boasting new pediatric patient rights documents; again, because of Bill. In the mid-1980s, the first time I did a literature search on an ethics topic, most of the references I found were those of Bill Bartholome. He wrote articles, gave lectures, and taught students, residents and faculty that pediatric patients were individuals with developing decision making capacity and, as a result, that they should have a voice in their health care decisions.
In the mid-1980s, this was a rather shocking perspective. Prior to that time, parents had been the sole decision maker for their child and, legally, continue to be. But Bill was charting the course for ethical decision making. He was teaching us about what we should do and how we ought to treat children.
I was relatively new in my role as the school teacher and when I received a faculty appointment, from the Chief of Staff, to the Pediatric Ethics Committee, I thought I was pretty hot stuff! What I did not realize, at the time, was that I was about to have an opportunity that most would covet - the chance to learn from the master!
Maybe it was Bill's charisma. Or, maybe it was that this was heady stuff - a new direction in pediatric care. Or, just maybe it was that we knew we were setting the bar for how all children would receive health care in the future. Whatever it was, we soared to new heights on our pediatric ethics committee. We created pediatric patient rights booklets and we developed training materials and a schedule to follow as we set out to first train the providers in our institution; then the world!
It was touching today to see how many of Bill Bartholme's followers came out to honor him. There were 5 members of Bill's family, and several other family members who sent their well wishes. There were medical students who had heard of him and faculty who had known him. And, there were 'new believers' who listened attentively to the lessons Bill had taught us some 25 years ago, and listened as attentively now as we had then.
Bill was a bit magical, and so were John and Chris today. Their presentations built upon those things that we had learned years ago and called upon us to do more; do better. We must continue to advocate for the smallest and youngest of patients, who may or many not be able to advocate for themselves.
I'm ready!
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.
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.
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 havewelcomed 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!
I'm not sure how - or why - someone could live without a dog!
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, March 4, 2012
HIPAA, Child Assent, consulting parents and all that jazz
When HIPAA was written, it was for all sorts of legitimate reasons: to improve the portability and continuity of health insurance coverage; to combat waste, fraud and abuse in health insurance and health care delivery; and more. Most do not know what HIPAA does - except for ensuring patient privacy
Wednesday, February 22, 2012
Who gets to decide when we die?
I 'do' a lot of bioethics. I read lots of ethics cases, research studies and journal articles. I talk to and share resources with others, from around the country, who are doing ethics. I am the chair of our pediatric ethics committee at the hospital. I am involved in several discussion forums and listservs that focus on bioethics. I do ethics consults at the hospital. And, I am currently taking the first ever pediatric ethics certificate course - a year long course that has rigorous requirements to enable one to receive a certificate in bioethics at the end. Throughout all of these activities, I learn so much. The topics are sometimes fascinating, and I always educational.
Yes, medical boethicists are, often, very deep thinkers.
And, I have a confession to make, and I'll make it to you all tonight! Although I am considered to be "one of them" (medical ethicist) by training and profession, I am not the deep thinker, philosopher type that characterizes some of my colleagues. They are philosophers who can talk/argue/philosophize about a topic for hours. I am simply one who lives in the middle of ethical dilemmas. And sometimes they are messy.
So, I am perplexed by a recent ethics online discussion and would like to ask you all to weigh in. The discussion goes something like this.
Dr. X is caring for Mr. Y, a patient in the hospital. Mr. Y's daughter, Miss Y, is his surrogate decision maker. Mr. Y has begun to decline rapidly and Dr. X has asked Miss Y if she wants to make him DNR (Do Not Resuscitate) status. Miss Y states no, she wants her father to be a 'full code', receiving CPR and all other supports to help him live.
Later that day, Dr. X determines that Mr. Y is 'too sick' to have full code status, and reinstates the DNR order. Over the course of the next several hours, Mr. Y continues to decline. Mr. Y dies, with no attempt to resuscitate him, despite the fact that Mr. Y had requested to be have full code status (all resuscitative care takes place). Dr. X states that he was very busy and therefore unable to contact Miss Y about changing his code status back to a DNR. Dr. X states that Mr. Y was so ill that there was no reason to try to resuscitate him.
So, my question(s):
Who gets to decide? Does a doctor have the right to determine when - and if - a patient should receive life sustaining treatment? Or, is that decision the patient's/surrogate's decision to make? Is this a matter of poor communication on the doctor's part? Was it unethical for the doctor to make decisions that were different than the patients? Or, does the doctor have the right to determine when he feels the patient's/surrogate's assessment may be inappropriate? This patient was apparently dying... would you feel differently about the doctor's actions if, for example, the patient was just moderately ill? Or, if it were you or your family member?
Ethics is never easy. Some go so far as to say it is dirty business. I am looking forward to hearing your thoughts!
Yes, medical boethicists are, often, very deep thinkers.
And, I have a confession to make, and I'll make it to you all tonight! Although I am considered to be "one of them" (medical ethicist) by training and profession, I am not the deep thinker, philosopher type that characterizes some of my colleagues. They are philosophers who can talk/argue/philosophize about a topic for hours. I am simply one who lives in the middle of ethical dilemmas. And sometimes they are messy.
So, I am perplexed by a recent ethics online discussion and would like to ask you all to weigh in. The discussion goes something like this.
Dr. X is caring for Mr. Y, a patient in the hospital. Mr. Y's daughter, Miss Y, is his surrogate decision maker. Mr. Y has begun to decline rapidly and Dr. X has asked Miss Y if she wants to make him DNR (Do Not Resuscitate) status. Miss Y states no, she wants her father to be a 'full code', receiving CPR and all other supports to help him live.
Later that day, Dr. X determines that Mr. Y is 'too sick' to have full code status, and reinstates the DNR order. Over the course of the next several hours, Mr. Y continues to decline. Mr. Y dies, with no attempt to resuscitate him, despite the fact that Mr. Y had requested to be have full code status (all resuscitative care takes place). Dr. X states that he was very busy and therefore unable to contact Miss Y about changing his code status back to a DNR. Dr. X states that Mr. Y was so ill that there was no reason to try to resuscitate him.
So, my question(s):
Who gets to decide? Does a doctor have the right to determine when - and if - a patient should receive life sustaining treatment? Or, is that decision the patient's/surrogate's decision to make? Is this a matter of poor communication on the doctor's part? Was it unethical for the doctor to make decisions that were different than the patients? Or, does the doctor have the right to determine when he feels the patient's/surrogate's assessment may be inappropriate? This patient was apparently dying... would you feel differently about the doctor's actions if, for example, the patient was just moderately ill? Or, if it were you or your family member?
Ethics is never easy. Some go so far as to say it is dirty business. I am looking forward to hearing your thoughts!
Wednesday, February 8, 2012
The Power of Dogs
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.
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.
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-
(Andrea Mohin/The New York Times)
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
(Andrea Mohin/The New York Times)
that this was the first time that he had touched an animal without hurting it, and further shared that it felt very good.
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.
The power of dogs
I know that many of you have dogs. Most of my friends and family members have dogs; I think I am attracted to dog people. And, I think there is a reason for that. Dogs are, naturally, helpful creatures, and they often are in the families of those humans who also like to help others. Those are the people - and the animals - with whom I enjoy spending time!
There are increasing numbers of article about dogs who are helping people get healthier in a variety of ways. Integrative Cancer Therapies published an article in 2006 about how ordinary house dogs could identify breast and lung cancer patients by smelling their breath. More recently, a University of Maine study is trying to determine if dogs can 'sniff out' ovarian cancer. In addition, many nursing homes and hospitals have known for several years that dogs can help patients feel better and, possible even aid in healing and recovery times.
There are increasing numbers of article about dogs who are helping people get healthier in a variety of ways. Integrative Cancer Therapies published an article in 2006 about how ordinary house dogs could identify breast and lung cancer patients by smelling their breath. More recently, a University of Maine study is trying to determine if dogs can 'sniff out' ovarian cancer. In addition, many nursing homes and hospitals have known for several years that dogs can help patients feel better and, possible even aid in healing and recovery times.
Wednesday, February 1, 2012
Spreading the word
Today I am presenting Grand Attending Rounds, along with Dr. Emily Riegel, for our pediatric department. Faculty, residents, students, nurses, social workers and a host of others will likely be in attendance. I love this opportunity - the opportunity to share with others what pediatric palliative care is and, perhaps more importantly, what it is becoming.
When I started 'doing' pediatric palliative care, it was end-of-life care. We 'circled the wagons' when we learned that a child was not likely to survive. And, we began a flurry of activity. Some of it was very good, and seemed to help families a lot. And, some of it was.... good intentions without much bang for ones' buck. We were all learning - families and professionals doing the best we could with the knowledge that we had at that time.
Today, we have much more knowledge. I have been very fortunate to have the opportunity to truly study pediatric palliative care, in addition to experiencing the same 'baptism by fire' that many of my readers likely experienced, too! It is exciting to see the learning opportunities that now exist. In my PhD program, I took a psychology course that focused on pediatric palliative care; a social work course that was entitled "Loss and Grief"; a nursing course that was on end-of-life issues; and several seminar (6 semsters!) courses that enlightened me about 'disability' and enabled me to develop my strategies and approach to enabling persons to engage to the maximum extent possible for them, at that moment.
Later, I took the End of Life Nursing Education Consortium (ELNEC) course, the Initiative for Pediatric Palliative Care (IPPC) training, and four courses from Mount Idea Center on Death Education focusing on children's grief and bereavement, parents' recovery after the loss of a child, and several other palliative care topics.
Even though I have had significant opportunities to learn about pediatric palliative care through formal courses, there is nothing that replaces what I have learned from children, parents and a few, precious colleagues (thank you, Dr. Barnard!). They are the persons who have taught me what is really important and how to do pediatric palliative care.
I have learned more as I prepared today's talk and am reminded of the sense of wonder I often feel when speaking about palliative care. Today, I will share some of what I have been fortunate to learn with my colleagues. My hope is that they will feel a bit of the glimmer of hope, wonder and excitement that I feel each time I have the opportunity to cross through another portal of learning. I hope I can be a bit of the light that illuminates their path.
When I started 'doing' pediatric palliative care, it was end-of-life care. We 'circled the wagons' when we learned that a child was not likely to survive. And, we began a flurry of activity. Some of it was very good, and seemed to help families a lot. And, some of it was.... good intentions without much bang for ones' buck. We were all learning - families and professionals doing the best we could with the knowledge that we had at that time.
Today, we have much more knowledge. I have been very fortunate to have the opportunity to truly study pediatric palliative care, in addition to experiencing the same 'baptism by fire' that many of my readers likely experienced, too! It is exciting to see the learning opportunities that now exist. In my PhD program, I took a psychology course that focused on pediatric palliative care; a social work course that was entitled "Loss and Grief"; a nursing course that was on end-of-life issues; and several seminar (6 semsters!) courses that enlightened me about 'disability' and enabled me to develop my strategies and approach to enabling persons to engage to the maximum extent possible for them, at that moment.
Later, I took the End of Life Nursing Education Consortium (ELNEC) course, the Initiative for Pediatric Palliative Care (IPPC) training, and four courses from Mount Idea Center on Death Education focusing on children's grief and bereavement, parents' recovery after the loss of a child, and several other palliative care topics.
Even though I have had significant opportunities to learn about pediatric palliative care through formal courses, there is nothing that replaces what I have learned from children, parents and a few, precious colleagues (thank you, Dr. Barnard!). They are the persons who have taught me what is really important and how to do pediatric palliative care.
I have learned more as I prepared today's talk and am reminded of the sense of wonder I often feel when speaking about palliative care. Today, I will share some of what I have been fortunate to learn with my colleagues. My hope is that they will feel a bit of the glimmer of hope, wonder and excitement that I feel each time I have the opportunity to cross through another portal of learning. I hope I can be a bit of the light that illuminates their path.
Wednesday, January 18, 2012
What IS palliative care?
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.
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.
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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