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CHOP Family News - Summer 2009 Family-Centered Care


                       Family News
                                                                                          Summer 2009

Building	the	Family-Care	Team	Partnership	Through	Daily	Rounds
                                   When	Kerri	Hanlon	comes	             Kerri’s	input	was	critical	when	the	pain	team,	a	group	of	
                                   to The Children’s Hospital           specialists that tackles the toughest cases, suggested that
                                   of Philadelphia with her son,        perhaps	Sean’s	reactions	were	“just	the	way	he	is.”	Kerri	
                                   Sean, she brings something           whipped	out	the	video	of	a	family	trip	to	the	Grand	Canyon	
                                   special: photos and videos of        that	showed	Sean	laughing	and	joyful.	“This	is not the way
                                   Sean that show him smiling,          he	typically	is,”	Kerri	told	them.
                                   interacting and having fun.
                                                                        Different units at the Hospital function differently. There
                                   That way, when physicians on
                                                                        may even be variations on a unit depending on the focus
                                   daily work rounds ask about
                                                                        of the care team, how sick the patient is and how close to
                                   her son, she can use the visual
                                                                        discharge he is. Sometimes the team will come into the room
                                   aids to show what her son is
                                                                        for rounds. Some attending physicians prefer to hold
Kerri Hanlon and Sean at the       like when he’s his usual self.
                                                                        discussions on all of a unit’s patients in a conference room
Grand Canyon                        Sean,	11,	has	cerebral	palsy	and	   and then do rounds, where they update parents on their
gastrointestinal issues and is non-verbal. His parents are his voice    child’s care plan. Some units are exploring other ways to
and are critical to telling healthcare providers how he’s doing         collaborate with patients and families. The goal is the same:
because	they	know	him	best.	“Since	he’s	not	able	to	tell	them	          improved outcomes through partnerships between the care
if	he’s	in	pain	or	how	he’s	feeling,	that	falls	to	us,”	says	Kerri.	    team and the family.
“Doctors	can	evaluate	him	clinically,	but	we’re	in	the	best	position
                                                                        “We	know	that	working	closely	with	parents	enhances	
to	compare	his	present	status	to	his	baseline.”
                                                                        compliance,	efficiency	and	patient	safety,”	Ballantine	says.	
Last fall, Sean was an inpatient for about six weeks following                                                 continued on next page
surgery, and the Hanlons were key partners in his recovery. Every
morning	Kerri	or	Brian,	Sean’s	dad,	was	present	and	participated	
in the daily work rounds, when the multidisciplinary healthcare
team on an inpatient unit reviews each child’s current condition                             Fun Facts
and creates the treatment plan for the day.
“This	visit	we	were	welcomed	and	included	on	rounds,”	Kerri	
says,	“and	I	really	appreciated	it.	Sean	was	having	severe	pain,	         There’s one important but often unrecognized group of
and they couldn’t find the point of origin. It was critical we were       professionals who play a critical role in patient care and
fully included. My husband and I aren’t medical professionals,            safety: the highly skilled biomedical technologists. They
but	we’re	the	glue,	the	continuity	in	Sean’s	care.”                       keep all CHOP’s medical devices and other complicated
                                                                          medical systems up and running, and train other staff
Allison Ballantine, M.D., one of Sean’s attending physicians              on	their	proper	use.	The	devices	are	as	big	as	an	MRI	
during his stay, recognizes the importance of family participation        scanner and as small as an infant IV pump.
in a patient’s care and is at the forefront of CHOP’s move to
include	parents	in	daily	rounds.	“Their	input	is	invaluable,”	            In 2008, CHOP technologists:
she	says.	“They	know	the	unique	experiences	of	the	child’s	life	          •	 maintained	22,348	medical	devices	located	in	196			
—	in	the	Hospital	and	at	home.”                                              departments across the Hospital
                                                                          •	 responded	to	21,737	repair	and	project	work	orders
                                                                          •	 performed	22,517	inspections	
continued from previous page
“The	parents	have	a	voice	we	need	to	hear.	Rounds	allow	us	to	            Kerri	remembers	a	Pediatric	Intensive	Care	Unit	resident	who	
bring them into the circle literally and figuratively. I want parents     started	one	morning’s	discussion	about	Sean	by	saying,	“Sean	is	
to	speak	up.”	                                                            a	lovely	10-year-old	with	a	bright	smile,	which	we	haven’t	seen	
                                                                          much	since	he’s	been	admitted.”	Kerri	says,	“The	attending	cut	
Here	are	Kerri’s	tips	for	parents:
                                                                          in and said, ‘Tell me why he’s here.’ No parent wants to hear
•	Let	the	care	team	know	you	want	to	participate	in	rounds.               ‘the patient is experiencing severe respiratory distress,’ but that’s
•	Check	each	morning	to	see	when	rounds	are	scheduled,	as	the	            the type of information doctors need to talk about. You need a
  exact time can change.                                                  strong constitution to listen to all the medical terms, but after
•	Be	respectful	as	the	team	does	its	job,	but	be	sure	to	correct	         all, it’s the	medical	problem	that	brought	you	to	CHOP.”
  misinformation	(for	example,	you	may	know	something	                    Ballantine	concurs.	“The	level	of	terminology we use can be
  important about your child’s medications, history or condition          daunting for families, but it’s necessary for clarity because we
  that	may	not	be	in	the	chart).                                          need	to	understand	the	patient.”
•	Prepare	questions	in	advance	so	if	they’re	not	answered	during	
  rounds, you can ask them while the team is there.                       In	the	decade-plus	that	Sean	has	been	a	CHOP	patient,	Kerri	
                                                                          has seen more and more examples of family-centered care in
•	Don’t	be	overwhelmed	if	a	dozen	people	are	present.	As	a	               action. Being welcomed to participate in daily rounds is the
  teaching hospital, CHOP is training the next generation of              most	recent.	“Every	doctor	tells	us,	‘You	know	your	son	the	
  pediatric specialists, and rounds are an important teaching tool        best.	Tell	us	what	you	think,’”	Kerri	says.	
  both for clinical issues and to model family-centered care.
•	Keep	a	notebook	handy	so	you	can	refer	back	to	prior	conversations.
•	Steel	yourself	to	hear	your	child	described	in	stark,	clinical	terms.

    The Parent’s Perspective
    From	the	First	Moment,	Kindness

    By Tracey Johnson                                                     Hematology social worker, Charles Adams, have been with us
                                                                          every step of the way. The Sickle Cell Program treats the whole
    This was my introduction to the wonderful world of                    child, the whole family. It begins with education and continues
    Children’s Hospital.                                                  with top-flight care as the need arises.
    I raced frantically to the Emergency Department, my twin              When	Christian	was	3,	he	developed	respiratory	syncytial	virus,
    6-week-old	boys	in	my	arms.	I	told	the	first	person	I	met,	
                                                                          better	known	as	RSV.	After	several	days	in	the	Hospital,	his	
    the	security	officer,	“I	don’t	know	where	I’m	supposed	to	be.	
                                                                          physician told us he would need a blood transfusion. My
    I	just	learned	my	babies	have	sickle	cell	disease,	and	our	
                                                                          husband,	Raymond,	and I were terrified. The nurse arranged for
    pediatrician	told	me	they’re	going	to	die.”
                                                                                                us to visit the blood bank, where staff
    With	a	kindness	I	later	learned	was	a                                                       explained the whole process: how the
    hallmark of CHOP, he calmed me down                                                         blood was gathered, tested and stored.
    and	called	Hematology.	Renee	Cecil,	                                                        They made us comfortable with the
    the sickle cell nurse coordinator, greeted                                                  procedure, and we agreed to the
    us.	Renee	sat	with	us	and	explained	that	                                                   transfusion. By the next morning,
    our sons were not going to die. She gave                                                    “C.J.”	was	running	up	and	down	the	
    me some basic information and set up an                                                     halls.	The	nurses	were	asking,	“Is	this	
    appointment for us to see a hematologist.                                                   the	same	little	guy?”
    CHOP	is	extraordinary!	We	walked	in	                                                         When	C.J.	was	5,	a	transcranial	Doppler	
    off the street, and people went the extra                                                    test showed he was at high risk for stroke,
    mile to help us. Christopher and Christian Christian, left, and Christopher threw out        one of the complications of sickle cell
    are	now	13.	Throughout	the	years	they’ve	 the first pitch of the Phillies’ 2007 season.      disease.	He	would	now	require	monthly	
    been CHOP patients, I’ve seen this caring                            blood transfusions, a procedure known as apheresis. Two big
    attitude hundreds of times in many departments and from              needles — one inserted into each arm — are needed to pull
    all levels of employees.                                             out his red blood cells and put in donated cells. It takes three
    Our	journey	hasn’t	been	easy.	But	we	know	we’re	not	taking	it	        hours each time, so it’s tough on a little person. But month after
    alone.	Our	hematologist,	Kim	Smith-Whitley,	M.D.,	and	the	            month for the last eight years, the nurses on the Apheresis	Unit	
News              & Moves Around CHOP
CHOP Earns Highest U.S.News & World Report Scores                           AmeriChoice Contract Extended Through 2011
Children’s Hospital was awarded the highest scores when                     Children’s Hospital has signed a contract extension with
U.S.News & World Report conducted its annual survey of                      AmeriChoice of Pennsylvania and AmeriChoice of New
children’s hospitals.                                                       Jersey	through	June	30,	2011.	Now	New	Jersey	families	
This year, rather than issuing an overall ranking, each hospital            insured	by	AmeriChoice	of	New	Jersey	have	easier	access	to	
received	a	“U.S. News	score”	in	10	specialties.	CHOP’s	combined             CHOP specialists because all CHOP doctors are considered
U.S. News score	of	944	is	far	better	than	all	other	hospitals.	CHOP	        participating providers.
is	ranked	No.	1	in	more	specialties	(five)	than	any	other	hospital	         Adolescent Care Center Adds Evening Hours
and	is	the	only	hospital	to	score	in	the	top	three	in	all	10	specialties.
                                                                            CHOP’s Adolescent Care Center has added evening hours,
Details are posted on
                                                                            staying open until 8 p.m. on Mondays and Tuesdays. The
Choice Is on the Menu at New Food Court                                     Center, at 3550 Market St., fourth floor, also has walk-in hours
                                                                            for	pregnancy	testing	(Monday	through	Friday,	1	–	4	p.m.)	and	
Choices, choices, choices. A huge expansion in the Main Building
                                                                            HIV	testing	(Monday	through	Friday,	9	a.m.	to	4:30	p.m.).	
cafeteria area now gives your family many more options than before.
                                                                            For more information, visit and click on
Do you want barbecue ribs for lunch, smoked on the premises in
                                                                            “Programs	and	Services”	or	call	215-590-3537.
a	new	smokehouse?	How	about	sushi	prepared	by	specially	trained	
chefs	while	you	watch?	Perhaps	you	have	a	yearning	for	pasta	or	a	          New Cardiac Echo Lab Provides Greater Capacity,
salmon burger, fresh off the grill. The new Food Court has them all.        More Convenience for Families
There	are	also	Kids	Pick	menu	items,	which	were	given	the	stamp	            The Cardiac Center opened its new Echocardiography
of approval by CHOP’s Youth Advisory Council. The Food Court                Laboratory in April. The new lab, on 3 Northwest in the Main
is	open	6:30	a.m.	–	7:30	p.m.	seven	days	a	week.	                           Building,	incorporates	technologically	advanced	equipment,	
                                                                            builds capacity, and increases families’ comfort and convenience.
On the Move                                                                 For	more	information,	call	215-590-3540.
Several programs and clinics have relocated to the sixth floor of the
                                                                            Nephrology Services Now in Voorhees, Springfield and
Richard	D.	Wood	Pediatric	Ambulatory	Care	Center.	Visit	the	sixth	
floor for: Amplified Musculoskeletal Pain Syndrome Program,                 King of Prussia Specialty Care Centers
Biochemical	Genetics/Metabolism	Clinic,	CARE	Clinic,	Infectious	            In addition to all the special services highlighted in the Spring
Disease Outpatient Services, International Adoption Health Program,         issue of Family News,	the	Renal	Outreach	Clinic	offers	
Neonatal Follow-up Program and Pain Management Program.                     Nephrology services at CHOP’s Pediatric & Adolescent
                                                                            Specialty	Care	practices	in	Voorhees,	N.J.,	and	Springfield	
                                                                            and	King	of	Prussia,	Pa.

have done everything possible to make it easier for him. There were         refer to the Hospital as Hotel CHOP because they are
days when we both cried. But, the nurses have always been there to          treated so well.
wipe away the tears.                                                        For me, serving on the Family Advisory Council and
C.J.	always	jokes	that	the	nurses	treated	him	like	a	king,	and	one	         Family Faculty, where I speak at employee orientation
day they really did. He came in and found they had draped his               and help residents understand medicine from a family
chair with a bed sheet to make it a throne. They put a cardboard            member’s point of view, are my ways of giving back to
crown	on	his	head	and	told	him	he	was	“King	of	the	Day.”	He	ate	            CHOP. It’s also why I’m president of the Sickle Cell
it	up!	C.J.	still	has	some	rough	days,	and	those	incredible	nurses	         Parents Network, which works to support, educate and
are always there to support him. He tells me the needles hurt less          advocate for Philadelphia-area families touched by sickle
because the nurses make him laugh.                                          cell disease.
Christopher has also experienced some of the complications of               I tell those families — as I tell my own children — what
sickle cell disease, including several blood transfusions and               I learned on that very first day I came to CHOP: Sickle
multiple surgeries. The twins, who’ll be in eighth grade in the fall,       cell disease is not the end of your life. You have the
have a relatively normal life: They play sports, go swimming,               disease, but it doesn’t have you. Be positive, think
participate in other activities and have discovered girls. I’m grateful     positive and surround yourself with people who can
they have each other to talk to about having sickle cell disease. They      provide you with great care. For our family, those people
say coming to CHOP is like getting a tune-up; they affectionately           are at Children’s Hospital.
                                Partners for Excellence
                  Ideas From Families for Families to Support Healthcare Partnerships

           Tips for More Effective Phone Communication
  By Paula Finestone                                                   •	Give	your	phone	number	and	write	down	the	name	and	
                                                                         phone number of the person helping you, in case you get
  Perhaps you’re scheduling a routine appointment for your child.
  Maybe you’re awake at night with a sick child and need medical
  advice. Or your family is anxiously awaiting test results.           •	So	that	you	understand	any	information	you	receive:	have	a	
                                                                         family member or friend listen in on the call; ask the staff to
  In these situations, we rely on the telephone to get information
                                                                         explain	further;	or	request	written	information.
  we need. Here at CHOP, we’re aware that much of the important,
  day-to-day interaction between families and the healthcare team      •	Repeat	what	you	hear	and	ask,	“Do	I	have	it	right?”	If	the	
  happens by phone. Effective phone communication can help               information	is	unclear,	ask,	“Can	you	say	that	a	different	way	
  build successful partnerships between families and the team, so        so	I	can	understand?”	
  your child can get the best care possible. To help you make the
                                                                       •	Once	you	and	the	staff	agree	on	the	issue,	you	can	talk	about	
  most of phone conversations with schedulers, nurses, doctors and
                                                                         the plan to help your child. If you have ideas about what you’d
  other CHOP staff, we’ve gathered tips for talking on the phone
                                                                         like to do, share them.
  from experienced families on our Family Advisory Council.
                                                                       •	Make	sure	you	understand	the	next	steps	and	that	they	are	
  Before You Call                                                        suitable for your child and family. Find out how soon your
  •	Get	paper	and	pencil	ready.	Write	down	your	questions	and	           child is likely to get better, and when a follow-up call, a
    important information: your child’s diagnosis, doctor, most          doctor’s	appointment	or	a	visit	to	the	ER	might	be	needed.
    recent weight, medicines your child is taking right now, the
    name and phone number of your pharmacy.                            •	Before	ending	the	call,	make	sure	all	your	questions	were	
                                                                         answered. Ask for the name and phone number of the person
  •	If	your	child	is	sick,	write	down	your	answers	to	these	
                                                                         you	should	call	if	you	have	other	questions	later.
    questions:	How	is	your	child	feeling	and	acting?	Is	there	a	
    fever?	What	have	you	tried	to	help	your	child	feel	better?	        After the Call
  •	Unblock	any	phone	“call	blocking”	in	case	you	need	a	call	         •	Read	your	notes	and	write	down	what	you	need	to	do	next.
    back; if using your cell phone, make sure you can receive calls.   •	Put	appointments	and	dates	to	call	back	on	your	calendar.
  Making/Taking the Call                                               •	Keep	phone	numbers	near	the	phone	and	in	your	cell	phone	
  •	Say	who	you	are,	your	child’s	name,	who	you	want	to	talk	to	         address book.
    and why you are calling. Do you need information, or is your       Paula Finestone is a family-centered care intern and a parent of a
    child	having	symptoms?                                             child treated at CHOP.

     The Editorial Board of CHOP Family News includes family
    members and staff of The Children’s Hospital of Philadelphia.
       Comments and suggestions are welcome and should be
    submitted to Paula Finestone at

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   column. After registering, select “Family News.”
                                                                                                                                            3025-Summer 2009/5.5M/07-09

    The Promise of Partnership
                 Family-centered Care

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