I'm baaack!  The thing about pediatric palliative care is that it grabs you by the neck and won't let go.  I am realizing the need to take control of certain aspects of my universe and so I WILL be blogging - as much as a tonic for myself as anything.  So get ready - here I come!

Now

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.

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!  

Sit. Speak.

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

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

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

  

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

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

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

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!

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

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!