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. 

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. 

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.

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. 

'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:

•  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

           and my personal favorite

• What are you doing for others? 

And so I posit that my attitudes and my classmates' attitudes and the attitudes of students throughout the country were affected that April 4, 1968 when Dr. King was shot.  We not only experienced the loss of a great social activist and leader, but we also recognized how intolerance and prejudice could affect our personal, treasured relationships.  And perhaps we realized how that lesson extends to all relationships in our lives - that each one is precious and needs to be protected in whatever way we can protect it.

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". 

The Death of the Twinkie?!

I have some distressing news.  It was announced today that Hostess Brands Inc. is preparing to file for Chapter 11 bankruptcy protection as soon as this week.  This would make the second time that there was significant court restructuring for Hostess in the past few years.  This is significant.  Oh sure, it is a pretty big deal that a major company is having such huge financial problems.  But the reality is:  Hostess is the baker of the TWINKIE.  That wonderful, chemical-laden, cream-filled sweet concoction that so many of us grew up  swapping at lunch and enjoying as a fine after-school cuisine. Some of the boys could bite of the top of the Twinkie, and somehow manage to eat all of the cream out of the center, with the cake remaining completely intact.  I could never figure out how it was done.  It was one of those skills kind of like rolling your 'Rs' or doing a backward roll.  No matter how hard I tried, I was just not ever going to master those tasks.

 

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.

Bloomberg News

Hostess Brands has been facing a cash squeeze. Above, the company's bakery in Sacramento, Calif., last year.

A Teamsters spokesman declined to comment. A spokeswoman for Hostess's other main union didn't immediately respond to a request for comment.