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Is Palliative Care PC? :: Illustrating a Working Benefit :: Moral Code :: Recipe for a Revolution

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2 hope 2010

hope 2010

contents
COVER STORIES: COUNTRY

5 UNDISCOVERED
by James Evans California history is in the making with a new Pediatric Palliative Care Benefit.

31 UPresources offer best TO SPEED NHPCO

practices on pediatric palliative care.

32 jUST ThE FAqs about Frequently asked questions

pediatric palliative care.

16 RECIPE FOR A
by Richard Cole Brueckner Ever wonder how lasting change starts? Read this guide to coalition building.

REVOLUTION

20
IS PALLIATIVE CARE PC?
by Paola Bruni and Lorry Frankel, MD A physician, a philosophy, and the future of healthcare for children with chronic, life-threatening conditions.

IN FOCUS:

31 CALIFORNIA
hEALThCARE FOUNDATION mOmENT

ILLUSTRATING A WORKING BENEFIT

22

by Leslie Adams, MSW, Lori Butterworth and Devon Dabbs Curious about the new Pediatric Palliative Care Benefitwhat is it, and how does it work? Come take a closer look.

37 mOmENT BY 35 INSPIRED
PhIlaNThROPY

13 ShARING WISDOm by Lisa Buell and Tara Manjunath 15 FEW AND FAR
by Hillary Rosner Got wheels? For low-income parents caring for a sick child, a ride can be a life or death proposition.

To tell the truth, two moms dive deep into their stories of love and loss.

25 mORAL CODERN, by Hollye Harrington Jacobs,

DR. RIChARD BEhRmAN

9 INTERVIEW WITh

MS, MSW and Lori Fewster-Thuente, RN, MSN An exploration of the ethical issues that arise in pediatric palliative care.

Maverick fundraisers dedicate themselves to a righteous cause.

BETWEEN

by Ann Andrews Morris An editor of the groundbreaking report, When Children Die, discusses the current situation of pediatric palliative care.

27 EBB AND FLOW by Dianne Gray

CONTRIBUTORS

36 hONORED
The wonderful people and organizations that make pediatric palliative progress possible.

Darkness comes and darkness goes, and happiness aint never how you think it should be so.

10 A NATIONAL
by Paola Bruni A glimpse at whats being done around the country to support seriously ill children and their families.

PERSPECTIVE

19 BRIDGE PEOPLE by Paola Bruni 24 GROWING UP

28Jensen A VILlaGE 37 VISIONARY IT TAKES INVESTORS by Lisa

Care coordination circles the wagons around children and their families.

Family Advisory Council offers clinicians a direct link to parents caregiving experience.

Foundation partners who have stood with us to make a compassionate and just healthcare system a reality.

12 IN mY OPINION by Sue M. Huff, RN, MSN

DYING

POLST

30 PARENTS TALK
by Leslie Adams, MSW Is it just another form? Or does the POLST offer peace of mind for parents?
Cover credits: Photography by Moment by Moment, Liz de Puydt. www.momentbymoment.org.

Looking to lower healthcare costs? How in-home care may be one answer.

by Tiffany Christensen She calls herself sick girl. Insights from a lifetime of living with cystic fibrosis.

hope 2010 1

contributors
ANN ANDREWS MORRIS [Interview with Dr. Richard Behrman, p. 9] has more than 20 years of experience in national news (ABC News & U.S. News & World Report) and nonprofit communications. She runs AndMore Communications and lives in Arlington, VA, with her husband Bob. HILLARY ROSNER [Few and Far Between, p. 15] writes about science and the environment for the New York Times, Audubon, and Town & Country, among others. Her work recently appeared in Newsweek, Mother Jones, and OnEarth. She lives in Boulder, Colorado. JAMES EVANS [Undiscovered Country, p. 5] is a former award-winning news and feature writer for the Pacific News Service in San Francisco and the Toronto Globe. He is currently living in Santa Cruz, California. LISA JENSEN [It Takes a Village, p. 28] covers a wide-range of topics as a longtime film critic and columnist for Good Times in Santa Cruz, California. A former book critic for the San Francisco Chronicle, her novel, The Witch From The Sea, was published in 2001. RICHARD COLE BRUECKNER [Recipe for a Revolution, p. 16] is an undergraduate at the University of California, Santa Cruz. He is a writer, musician, craftsman, sociologist, and fire dancer. LORRY FRANKEL, MD [Is Palliative Care PC?, p. 20] is a professor of Pediatrics (Critical Care and Palliative Care Medicine) at Stanford University. Dr. Frankel is the Medical Director of Pediatric Palliative Care at Lucile Packard Childrens Hospital in Palo Alto, CA. LESLIE ADAMS, MSW [Illustrating a Working Benefit, p. 22; Parents Talk POLST, p. 30] is community liaison for TrinityKids Care in Los Angeles, and program director of Childrens Hospice and Palliative Care Coalition. She is a former member of the palliative care team at Seattle Childrens Hospital. DIANNE GRAY [Ebb and Flow, p. 27] is president of Hospice and Healthcare Communications, a speakers bureau and communications firm focusing on end-of-life and palliative care issues globally. Dianne is an award-winning writer, speaker, and humanitarian based in Naples, Florida. TIFFANY CHRISTENSEN [Growing Up Dying, p. 24] is the author of Sick Girl Speaks! and a public speaker living in Chapel Hill, North Carolina. She currently works with Project Compassion educating parents, families, healthcare students and professionals about patient advocacy, advance care planning and organ/tissue donation. PAOLA BRUNI [Guest editor and writer; National Perspectives, p. 10; Bridge People, p. 19; Is Palliative Care PC? p. 20] has more than 15 years experience as a commercial and nonprofit writer, editor, and strategist. She is the founder and principle of WritePath Strategies and lives in Aptos, CA with her husband Kip, and their pit bull, Hapa.

SUE M. HUFF, RN, MSN [In My Opinion, p. 12] possesses 20 years of experience as a practitioner and educator in the field of pediatric palliative care. She is the Director of Pediatrics at Home for Johns Hopkins Medicine in Baltimore, Maryland. 2 hope 2010

contributors
HOLLYE HARRINGTON JACOBS, RN, MS, MSW & LORI FEWSTER-THUENTE, RN, MSN [Moral Code, p. 25] Jacobs holds a Masters of Science in Child Development and a Masters in Social Work. She is vice president of programs for the Dream Foundation and former program director for the End-of-Life Nursing Education Consortium (ELNEC) Pediatric Program. Fewster-Thuente is currently a doctoral candidate at Loyola University in Chicago where she is also on the faculty at the Marcella Niehoff School of Nursing. TARA MANJUNATH & LISA BUELL [Sharing Wisdom, p. 13] are contributing writers for CHPCCs Sharing Wisdom online resource, Family Advisory Council members, and advocates and speakers promoting pediatric palliative care nationally.

HOPE Magazine 2010

A Publication of Childrens Hospice and Palliative Care Coalition with generous support provided by the California HealthCare Foundation Editorial Director Paola Bruni Deputy Editor Devon Dabbs Art Direction and Design Jennifer Moran, www.jenmorandesign.com Research Lori Butterworth Richard Cole Brueckner Liz Sumner, RN Illustration Susie Duckworth Illustrating a Working Benefit Photography Moment by Moment, momentbymoment.org Art Durand, artdurandphoto.com Liz de Puydt, ldphotography.com WHO IS CHILDRENS HOSPICE AND PALLIATIVE CARE COALITION? CHPCC is a nonprofit organization dedicated to ensuring compassionate, comprehensive care for children with life-threatening conditions. Together with their families, CHPCC speaks out for those too little or too sick to speak for themselves and creates programs that directly improve the quality of their lives. EDITORIAL PURPOSE HOPE magazine is an annual publication of CHPCC designed to bring awareness to the issues that surround healthcare for children living with serious, debilitating illnesses and their families. The opinions expressed by contributors and editors are their own. SPECIAL THANKS To Times Publishing Group, Inc. and Publisher Patrice Edwards who provided the impetus for HOPE magazine and generously supported the publication from 2005 2008. CHPCC contact information: 65 Nielson Street, #108, Watsonville, CA 95076 ph 831.763.3070 fx 831.786.9105 www.ChildrensHospice.org
Copyright 2010 Childrens Hospice and Palliative Care Coalition. All rights reserved. To request permission to republish an article, call 831.763.3070 ext. 201, or fax 831.786.9105. Reprints produced by others are not authorized.

Did you ever know that youre my hero? Youre everything I wish I could be. I could fly higher than an eagle, cause you are the wind beneath my wings. Bette Midler
This issue of HOPE magazine is dedicated to Lori Butterworth, Co-Founder and former Co-Executive Director of Childrens Hospice and Palliative Care Coalition. Your continued passionate commitment to the well being of children inspires us all.

hope 2010 3

chairmans letter

The Future of Pediatric Palliative Care in California

am a firm believer in the transformative power of people united by a mutual cause. It seems like common sensegather a group of passionate, focused individuals together, agree on a mission, take action, and magically, change occurs. Simple, right? No, in fact the process of changing underlying systems is a complicated endeavor and one not recommended for the faint of heart. Healthcare reform grinds the headlines daily. Lack of funding and state budget deficits, the reasons why change should not occur are more evident and more highly touted than the successes. Yet, there is HOPE. Amidst the plague of negativism, righteousness prevails. With this issue of HOPE magazine, you will have the opportunity to celebrate alongside us at the Childrens Hospice and Palliative Care Coalition (CHPCC) as we take you through the new Pediatric Palliative Care Benefit being piloted in our fair state. The Benefit recognizes that children from low-income families who are chronically suffering from life-threatening conditions need a special kind of support. And the responsibility for providing that care rests with all of us as human beings, as parents, as communities, and as the voices that can speak out on behalf of those too little or too sick to speak for themselves. For the past eight years, Lori Butterworth and Devon Dabbs, the founders and co-directors of CHPCC, have had the audacity and single-minded focus needed to make the Benefit a reality in California. And as you will read throughout these pages, they have not achieved their successes in a vacuum. Children and families, healthcare professionals, lawmakers, donors and friends have accepted the challenge, and joined in the movement to ensure that children are given the attention they need to grow and thrive in the midst of battling debilitating illness. Across the nation, visionaries are leading the quest to instill compassionate, family-centered care for children in our communities. HOPE is an honorarium to all of the courageous leaders in this movement and to CHPCCs leaders past and present. We wish Lori Butterworth the greatest of success as she segues from her responsibilities at CHPCC to launch a new nonprofit entity designed to engage and teach the next generation of young philanthropists about the art of giving. And to Devon Dabbs, who has assumed the position of Executive Director of CHPCC, we stand right beside you. It is my most profound desire that through the pages of HOPE magazine, you will find inspiration, knowledge, truth, and the courage to embrace pediatric palliative care as a standard of healthcare necessary for all seriously ill children. Together, our commitment to make a difference in this crusade for compassionate healthcare has now become a reality. I am deeply grateful and honored to lead such an extraordinary coalition and a statewide awareness campaign that is helping pave the way for national change. I invite you to celebrate with us by becoming a Champion for Children today; please visit www.ChildrensHospice.org.

Childrens Hospice and Palliative Care Coalition BOaRd OF diRECTORs 2009/2010 Angela Chesnut Chairman of the Board Terri Warren, MSW Vice President Hollye Harrington Jacobs, RN, MS, MSW Secretary Gregory Harrison, JD Treasurer Bruce Berwald, JD Marilyn Stephens Calciano Cassandra Cotton Lorry Frankel, MD Sarah Friebert, MD, FAAP Dianne Gray Tess Reynolds Janis Wuelfing Joe Wuelfing Melissa Gilbert Sustaining Chair/ Spokesperson Richard Behrman, MD, JD Honorary

Angela Chesnut

4 hope 2010

California is a frontier in an uncharted world, a land filled with children in crisis who are asking to be rescued. Reaching them is a challenge, but pathfinders never have shrunk from difficulty. They embrace it. They examine the terrain and find the best way across it, and change it if necessary. The Childrens Hospice and Palliative Care Coalition (CHPCC) altered the landscape for children suffering from chronic and potentially life-limiting conditions. A grassroots effort founded in 2001 by Lori Butterworth and Devon Dabbs, CHPCC created a way to waive restrictive hospice eligibility regulations for child patients. The organizations success has propelled it into being an award-winning advocate responsible for fundamental improvement in the healthcare system.
Continued on the next page

Undiscovered Country
Pioneering a new benefit for children with life-threatening conditions
BY JAMES EVANS

hope 2010 5

aniela is a happy baby at 14 months, but she has Spinal Muscular Atrophy Type 1, a cause of respiratory failure if not for the breathing machine that keeps her alive. Her mother administers medication and treatment every four hours, and despite working full time, she and Daniela must share a two-bedroom apartment with another family merely to endure financially. Brandon, age 15, suffers from craniopharyngioma, a daunting name for tumors in the brain near the pituitary gland that often affect the optic nerves and migrate into the brain stem. Its a serious condition with lots of debilitating consequences, including severe headaches, growth failure and partial blindness. Treatment usually calls for trying to remove the recurrent tumors, followed by radiation therapy.

What is a pilot site?

Pilot sites consist of a California Childrens Services (CCS) county office, community-based hospice and/or home healthcare agency(s), and referring childrens hospital(s). There can be one or more childrens hospitals involved with a pilot site for any given county. For example, a child living in Santa Cruz County can be referred to the waiver by Lucile Packard Childrens Hospital, University of California Medical Center in San Francisco, or others. Coordination of pilot site providers is facilitated by the community-based care coordinator, typically employed by the home health and/or hospice agency(s). 6 hope 2010

Daniela and Brandon are two of the hundreds of children that will benefit from a hospice and palliative care pilot project designed to alleviate the physical, fiscal and familial pain that accompanies life-threatening childhood illnesses, without sacrificing the hope for survival. The project is a crucial step toward providing comprehensive care to the thousands of children in California who persevere in a medical wilderness. The pilot projects owe their existence to the pioneering effort led by CHPCC that resulted in Governor Arnold Schwarzenegger signing into law AB 1745, the Nick Snow Childrens Hospice & Palliative Care Act of 2006. Co-authored by former California State Assemblywoman Wilma Chan (D-Oakland), former Senate President pro tem Don Perata (D-Alameda) and former Senator Deborah Ortiz (D-Sacramento), the bill required California to seek a waiver from a federal law that prohibits seriously ill children from receiving any curative medical treatment while accepting hospice care. Chan, currently Vice President of Children NOW, comments on the implementation of the measure, [The waiver] provides a necessary and human approach to our sickest kids who should never have to choose between hospice care and curative medicine. The law also enabled the state Department of Health Care Services to establish pilot sites where critically ill children may receive hospice and palliative care without sacrificing medical treatment intended to prolong their lives or cure their disease. Santa Cruz, Monterey, Santa Clara, Alameda and San Diego counties were selected to launch pilot projects in 2009. Humboldt, Marin, Orange, Sacramento, San Francisco and Sonoma counties will join the project in 2010, while Fresno and Los Angeles will

begin in 2011. Counties not included in the waiver project have access to existing palliative care services offered through Medi-Cal and California Childrens Services (CCS) programs, as outlined in Numbered Letter 04-0207 from the California Department of Health Care Services (see sidebar Numbered Letter p. 8). Nick Snow, the laws namesake, was diagnosed in 1996 at

In 2002, When Children Die: Improving Palliative and Endof-Life Care for Children and Their Families, the Institute of Medicine (IOM) reported that children suffering from fatal illnesses, along with their families, too often fail to receive competent, compassionate, and consistent care that meets their physical, emotional, and spiritual needs. The IOM also chastised providers and funders for

Nick Snows bill enabled the California Department of Health Care Services to establish pilot sites where critically ill children may receive hospice care without sacrificing medical treatment intended to prolong their lives.
age 6 with neuroblastoma, a rare and deadly childhood cancer. He underwent 84 months of treatment (chemotherapies, surgeries, four types of radiation, a bone marrow transplant, many experimental therapies), and attained remission in late 2002. After more than three years of being cancer-free, he died in April 2006 from an infection. Nick Snow was an advocate in every sense of the word, dedicating his life to helping kids like him get better care. He would be so incredibly proud to see that this program, his dream, is being adopted by Medi-Cal and CCS, said Lori Butterworth. compromising services because of flawed organizational and financing structures, and neither collecting nor utilizing better data and scientific knowledge. The IOMs most dramatic revelation was that children and their families were confronted with a cruel choice of receiving hospice care only after abandoning hope of survival. The report stated that a mere 1% of children who needed hospice care qualified under federal regulations. To receive services, a physician must declare, and parents must sign a written statement affirming, that the child is likely to have less than six months to

live. The family must agree that their child will forgo any treatment intended to cure disease or prolong life (e.g. chemotherapy, radiation, transplant rejection drugs). When these 1970s regulations, developed from adult cancer treatment protocols, are applied to children, parents are left with an unbearable, heartwrenching decision. In order to receive family support and inhome pain management for their child, parents must accept that nothing else will be done to prevent their child from dying. CHPCC couldnt allow such injustice to stand. Butterworth

and Dabbs advocated easier access to hospice and palliative care services, including making them available to children from the time of diagnosis, not just in the final days of life. They pointed out that identifying when a childs final days might begin didnt account for human will. The desire to live is strong. My son Nick was terminal for seven years. He was known as the boy who flunked hospice twice, said Shannon Snow, Nicks mother. In talking with parents and medical professionals across the country, and researching medical data and documentation,

New Benefit Takes Root in California Communities

Pilot site demonstration programs went live in October 2009 in Santa Cruz, Monterey, Alameda, Santa Clara and San Diego counties. Marin, Orange, Sacramento, Sonoma, San Francisco, and Humbolt counties will join the program in 2010, with Fresno and Los Angeles counties following in 2011.

Humboldt

Pilot Site: October 2009 Pilot Site: 2010 Pilot Site: 2011

Sonoma Marin San Francisco Santa Cruz

Sacramento Alameda Santa Clara Monterey

Fresno

Los Angeles Orange

San Diego

Butterworth and Dabbs learned that the pain wasnt confined to patients, families, and friends. Physicians, nurses, and other healthcare providers, bound by legislative restraints, suffered from the impossibility of providing care that met the psychosocial, emotional, and practical needs of families with children undergoing intensive treatment for life-threatening conditions. Their research led to formative conclusions. First, children diagnosed with life-threatening conditions and their families need coordinated, comprehensive support that integrates curative medical care with psychological, social, emotional, and spiritual services from the point of diagnosis. Secondly, although a pediatric palliative care movement already existed and was growing among the nations childrens hospitals, community-based care by hospice providers was not widely available or utilized because there was no system of reimbursement for integrated pediatric home hospice and curative services. Those agencies who did provide it generally were compensated through private philanthropy. Thirdly, and perhaps most significantly, CHPCC decided to embrace an exponential model for its campaign. Despite being the new kid on the block, CHPCC quickly emerged as a leader in altering the palliative and hospice care environment by calling attention to what it had learned from research and experience. CHPCC was able to demonstrate that federal hospice eligibility requirements, when applied to children, resulted in: Parents facing an inhumane decision: try to cure their childs illness, or focus on pain management and quality of life. Medical professionals, caregivers, and families experiencing confusion, anxiety, and stress as a result of the unnecessary division between life-sustaining

My son Nick was terminal for seven years. He was known as the boy who flunked hospice twice, said Shannon Snow.

treatment and home hospice and palliative care. Children undergoing painful procedures and suffering from the symptoms of advancing disease without adequate relief, despite modern medicine being capable of relieving their pain and improving most symptoms. Families enduring the isolation and stress of caring for their child at home often have to administer medications, maintain complex life-sustaining equipment, and deal with emergency room visitscreating hardship for the family and compromising the health and lives of children. Additionally, families are often denied essential services such as: 24-hour on-call nursing, respite care, pain management, expressive therapies, and ongoing psychosocial and bereavement support. Making sense of data at times is more difficult than collecting it, which provoked CHPCC to pull together diverse experts parents, clinicians, policy makers, and administrators, among others, to make sure that the

hope 2010 7

State Plan Services Available Through Numbered Letter

Children with life-threatening conditions in California who do not live in one of the 13 pilot counties still have access to certain palliative care services concurrent with their curative therapies, thanks to Numbered Letter 04-0207. Issued by the California Department of Health Care Services on February 14, 2007, the Numbered Letter (a standard form of internal communication) identified existing California State Plan services available through Medi-Cal and California Childrens Services (CCS) that can help to enhance quality of life and alleviate physical and emotional distress. All children with CCS coverage have access to Numbered Letter services when authorized by the CCS Specialty Care Center or a CCS-approved specialist. Community-based palliative care services such as home nursing, counseling by a MFT (marriage and family therapist) or psychologist, visits with a social worker, and physical, occupational, speech and respiratory therapies can be provided by a home health agency. Children living in pilot counties with select CCS eligible medical conditions can access the full scope of services available through the waiver and CCS Numbered Letter 04-0207. Families with children enrolled in the waiver also will be assigned a care coordinator who will integrate a myriad of services including art, music and massage therapies, respite care, family education, and counseling including bereavement. As a medical advocate, the care coordinator establishes an integrated, comprehensive, community-based plan of care for the family and works to improve communication and support between providers. For the entire list of authorized in-home and outpatient services, consult the Numbered Letter at the DHCS website (http://www.dhcs.ca.gov/services/ccs/Documents/ ccsnl040207.pdf) or at the CHPCC (http://childrenshospice. org/wp-content/uploads/2008/08/ccsnl040207.pdf). For more information on Californias new pediatric palliative care waiver, visit www.CaliforniaPartnersforChildren.org or www.ChildrensHospice.org/benefit/waiver/

waiver program would work. Everyone agreed that care coordination was essential to success, and that the pilot projects would provide an opportunity to examine the combined effectiveness of the waiver and Numbered Letter. Three work groups, with CHPCC guidance, worked to ensure efficient implementation and program enhancement: Eligibility who can receive services under the waiver; Service Delivery who is providing service and what service they are providing; and, Data & Evaluation what information will be collected and how it will be evaluated.

Unfortunately, in the midst of this statewide struggle by parents, professionals and volunteers, California, along with the entire nation, was jolted by economic crisis. No one could have anticipated the severity of the state budget debacle and its impact on CCS and the many stakeholders within CHPCCs membership. Despite the continuing fiscal trauma, the California Department of Health Care Services, healthcare providers and families have remained undaunted by the challenge and unflinchingly committed to improving the lives of children, Dabbs said. Because of this dedication, CHPCC continues to rally stake-

The pain wasnt confined to patients, families and friends. Physicians, nurses, and other healthcare providers, bound by legislative restraints, suffered from the impossibility of providing care that met the needs of families with children undergoing intensive treatment for life-threatening conditions.
CHPCC is taking the lead in publicizing the waiver, hosting trainings, and rallying regional collaboratives in northern, central and southern California. Today, while the three regional collaboratives function independently and focus on areas of need specific to their region, they continue to collaborate and share information in a unified effort to develop solid, sustainable pediatric programs. CHPCCs Family Advisory Council also emerged from the planning process to address state and national issues that previously were taboo. The group is working on a myriad of projects Sharing Wisdom through Partnership for Parents (www. partnershipforparents.org), participating in parent panels at clinical conferences, engaging in advocacy work, and offering insight into implementing the Physician Orders for Life-Sustaining Treatment (POLST) when the patient is a child. holder unity, to clarify details of the waiver, and to encourage appreciation of the benefits of concurrent pediatric palliative care and hospice. The demonstration project will run from October 2009 to October 2012. CHPCC will provide general oversight, continue to offer support and training to pilot site providers, and assist in data collection to prove that the waiver program is a fiscally responsible and medically sound approach to healthcare for children with serious illnesses. The waiver will be up for renewal in 2012. CHPCC will not be idle in the coming years. Making the frontier safe is a continuing struggle, especially when clearing a path for people who cant clear it for themselves. CHPCC, body and soul, is showing both the route to a better world, and how to traverse it.

8 hope 2010

interview with:

Dr. Richard Behrman

Together with Marilyn J. Field, Dr. Richard E. Behrman edited the groundbreaking report, When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. The report from the Institute of Medicine Committee on Palliative and End-of-Life Care for Children and their Families was published in 2003. In a recent interview with Ann Andrews Morris, Dr. Behrman reflected on the progress that has been made and the challenges that still remain.

BY ANN ANDREWS MORRIS

What motivated the Institute of Medicine to publish When Children Die? They commissioned the report because they had heard from a number of their members that there was a problem in the provision of compassionate, consistent and affordable hospice and palliative care to children. Our goal was to quantitate the information and put it into one place in order to increase awareness about the issue within the medical community and among the general public. Do you think were any closer to providing what the report

hospital that doesnt have this provision in place. What remains to be done? On the positive side, we have been able to get waivers from Medicaid in Florida, Colorado, and California that make it possible to remove constraints that required us to make a prediction on when a child is going to die, which is almost impossible to do. It is important to get things changed nationwide so that we can pay attention to the severity of the illness and provide both palliative and curative care concurrently. Those constraints make it hard to do what is right

If you review the principles of end-of-life care, theyre really common sense, compassionate and caring guidelines.
calls medicine with a heart? I have seen real change. I think clinicians were always trying to provide medicine with heart, but this is an area that people are uncomfortable talking about so it wasnt getting the attention it needed. But since the report came out, there has been a real burgeoningat least in childrens hospitals across the countryof creating palliative and hospice care programs for children, if they didnt have them already, or improving them if they already had these programs. It seems to me that theres hardly a childrens for children. And so far, we only have waivers in those three states. Another area that still needs attention is in education. Although there have been significant efforts to educate health professionals, this is still a work in progress in terms of where and how its done. I do think nursing schools have done as well or better than medical schools in this area. Also, little headway has been made in private insurance. I do know that some insurers pay for it, but by and large no one has a handle on it.

With the current healthcare debate, are you optimistic about more progress being made? What seems irrational to me are the lies about the so-called Death Panels. This kind of talk has put hospice and palliative care in jeopardy. Anyone who has had contact with palliative care or hospice and not just with childrenis well aware of its value and meaning. If you review the principles of end-of-life care, theyre really common sense, compassionate and caring guidelines. So how anyone could distort that into anything other than that its good for a child or adult is beyond me. Unfortunately, I fear that all of this negative business, the distortion of the truth, is going to do harm to the progress that has been made. What are the next steps? The biggest need is for organizations like Childrens Hospice and Palliative Care Coalition that connect those working in the field with parents and others in the community who are advocating on behalf of children. Theres progress being made thanks to people who are aware that this is an important part of the healthcare system that needs nurturing and support.

hope 2010 9

WaTsONViLLE, CaLiFORNia
www.ChildrensHospice.org Contact: Devon Dabbs Childrens Hospice and Palliative Care Coalition (CHPCC) is leading the way to bring about lasting, fundamental change in Californias treatment of seriously ill children and their families. Through CHPCCs direct efforts, the federal government has approved a pediatric hospice eligibility waiver which is resulting in dramatic policy reform within the states pediatric healthcare system. For the first time in California history, children diagnosed with a life-threatening condition will have access to an innovative model of care that allows them to obtain community-based hospice and palliative services while continuing to receive curative treatment.

OMaHa, NEBRasKa
www.chsomaha.org Contact: Sue Base, LCSW The Hand in Hand Program at Childrens Hospital and Medical Center in Omaha is the only dedicated pediatric palliative care program in the state of Nebraska. The program began in 2006 as a regional resource for quality endof-life care for children. Staffed by a multidisciplinary team, Hand in Hand has responded to over 100 patients and their families. In 2008, the program received the Quest for Excellence Award from the Nebraska Hospital Association for their quality improvement success.

saN LEaNdRO, CaLiFORNia

www.georgemark.org Contact: Teri Rose George Mark Childrens House provides round-theclock intensive interdisciplinary pediatric care in a home-like, life-affirming environment. The House offers medical and emotional care for children with limited life spans and their families. Programming focuses on preserving the dignity and integrity of the child, providing expert pain and symptom management, and achieving the best possible quality of life as defined by the child and family. The House offers three critical services: respite, transitional (in between hospital and home), and end-of-life care.

a National Perspective
BY PAOLA BRUNI

and hospice care for children is still often met with fear and misunderstanding. A groundbreaking investigation in 2002 by the Institute of Medicine peeled away the facade that marginalized children with complex medical conditions, and exposed the isolation, despair and suffering of families surviving in a healthcare system ill-equipped to address their most fundamental needs. The subsequent report, When Children Die: Improving Palliative and End-of-Life Care for Children and 10 hope 2010

he adult hospice movement for decades has been a force for extraordinary change in the way Americans choose to live and die; however, the need for palliative

Their Families, inspired community leaders, advocates, and healthcare professionals to action. Today, the many contributors to this nationwide movement are developing innovative approaches to deal with all aspects of the challenge, inviting state and national legislators, insurance companies and private foundations to join the momentum that is transforming the way we care for children at all stages of life. The healing has begun.

BUFFaLO, NEW YORK HaRRisBURG, PENNsYLVaNia

www.dpw.state.pa.us Keyword Phrase: Pediatric Palliative and Hospice Care Contact: Uma Ramaswamy Pennsylvanias Department of Public Welfare recently published the final report on its statewide Pediatric Palliative and Hospice Care (PPHC) Task Force, which was convened in January 2008. The PPHC Task Forces final report evaluates the current pediatric palliative and hospice care service delivery system throughout Pennsylvania in 12 topic-specific categories and details innovative recommendations to improve services for children with potentially life-limiting illnesses and their families. www.hospicebuffalo.com Contact: Suzanne McDonnell Essential Care is a comprehensive home-based service for children with chronic and life-threatening illnesses and their family members. Specialtytrained professionals collaborate with the childs medical team during their illness, support their loved ones with in-depth psychosocial intervention, offer play therapy for the patient and siblings; and provide spiritual support to family members and caregivers during the span of the childs illness and treatment.

aKRON, OHiO
www.oppen.us Contact: Sarah Friebert, MD, FAAP, FAAHPM The Ohio Pediatric Palliative Care and End-of-Life Network (OPPEN) represents all childrens hospitals and varied hospice providers in Ohio. The agency works to enact policies and programs directed at making real, long-term changes within the state so that pediatric palliative care will always be available to children in need. OPPENs toll-free Comfort Line connects Ohios providers and families to palliative care advice, resource information and a Pediatric Palliative Care Resource Guide that aims to provide pediatric hospice and palliative care information to residents and healthcare workers in rural, isolated areas of the state.

disTRiCT OF COLUMBia, WasHiNGTON, d.C.

www.dcppcc.org Contact: Phil Carpenter The District of Columbia Pediatric Palliative Care Collaboration (DCPPCC) works to ensure that state-of-the-art pediatric palliative care programming is available to all children with life-limiting illnesses and their families residing in the District of Columbia. Advocacy, provider education, and the integration of pediatric palliative care across all clinical settings including hospital inpatient care, home-based care, outpatient ambulatory care and hospice, are DCPPCC essential strategies.

JaCKsONViLLE, FLORida
www.jax.shands.org Contact: Terry Eason Community PedsCare is a nationally awardwinning pediatric palliative and hospice program for children with life-threatening conditions. The program offers in-hospital and in-home medical, social service, psychosocial, spiritual, bereavement and practical support to children and their families in the 5-county northeast Florida region. The program was established in 2000 by Community Hospice of Northeast Florida, in collaboration with Wolfson Childrens Hospital, Nemours Childrens Clinic, and the University of Florida. It is also one of several hospice agencies participating in Floridas waiver, Partners In Care.

hope 2010 11

in my opinion

Looking to save healthcare dollars? Support the care of children in their homes and community.

BY SUE M. HUFF, RN, MSN

A new bill was recently passed by the House of Representatives, which brings us one step closer to healthcare reform in some capacity. How will the final product improve healthcare for children?

Improving access is at the top of everyones list. I have been working for many years along with others, including the Childrens Hospice and Palliative Care Coalition, to improve access for one group of children that has been left behindchildren suffering from chronic lifelimiting conditions. In the last 15 years, there has been marked change in education and awareness, slower change in access and new program development. States have responded by creating new waiver programs through the Centers for Medicare and Medicaid Services and proposing legislative change; those without waivers use workarounds to provide children and families choices in care. Despite these efforts, access to quality care at home for children is poor. There are few programs, and the alternative is to remain in the hospital, where the cost of care is at a premium. The goal is to create a bridge between acute care received in a hospital setting with care children can receive in their community, at home and at school; however, improving access alone will not address the barriers. Care at home can decrease healthcare costs and improve quality of life for the child and family. Yet, the number of new programs is not growing, in fact, the exact opposite. Even without factoring in palliative care needs, home health agencies are getting out of the pediatric business, and hospices are doing very little pediatric care. Some of the challenges in caring for this popula-

tion include: a relatively small patient volume; staffing challenges and a lack of pediatric expertise among staff; greater travel expense; longer home visits and higher number of visits per admission compared to adults. Another major contributing factor is reimbursement structure. Reimbursement rates are set for adult care, and they dont meet the needs generated by pediatric providers. Across the country, the average reimbursement rate by Medicaid for a nursing visit at home is less than half of the actual cost of care. For example, in Maryland, home health agencies are reimbursed $108.70 a visit, yet the cost of providing a nursing visit is on average $270.00. Agencies cant sustain a pediatric program without depending heavily upon philanthropic support, so in many parts of the country children who could receive care at home are not able to do so despite the fact that certain therapies can be safely administered at home. If we want to see in-home pediatric programs expand and flourish, insurance companies, including Medicaid and state funded programs, must reimburse providers at a rate that will match pediatric needs, sustain programs, secure pediatric expertise and give children and families choices in care, all the while saving healthcare dollars.

12 hope 2010

BY LISA BUELL AND TARA MANJUNATH

Sharing Wisdom is an online resource dedicated to families, clinicians, and community members interested in supporting and understanding how parents navigate the life of caring for their seriously ill children and the waters of grief. Two moms, Tara Manjunath and Lisa Buell, share their courageous stories of life, loss, and hope.

Tommy, Tar a, and Theo enjoying a da y at the beac h.

ith moms onths w , age 18 m Madison d Lisa. Nancy an

Lisa: I remember when Maddy was diagnosed with cancer. We saw the tumor on the ultrasound. It filled the right side of her pelvis. Oh my God, oh my God, I thought. Then we were transferred to the Childrens Hospital at Stanford. The doctors lips were moving but I only heard about half of what she said, Primitive Neuro Ecto Dermal Tumor. Sixty percent chance of survival, one shot at this, if the cancer comes backshes dead. We signed papers, took notes, asked questions. Everything happened

so fast. Tara: When my son Theo was three days old, I knew something was wrong. He was at home sleeping all the time. He had stopped even trying to nurse; he was fussy if he wasnt sound asleep. My gut told me that something wasnt right. I called the doctor in the middle of the night. I was told that I didnt know my baby, he was fine. I didnt listen. When morning came and Theo slept all night, I knew this wasnt just a mellow newborn. Lisa: Moms always know. Tara: I took him to the doctor. She told me to rush him to Dominicans NICU, not to even put his clothes back on. At Dominican, they took him right

hope 2010 13

away and started IVs, sedated him, intubated himI could barely recognize my baby. The doctor told me that he needed to go to Stanford. Theos heart was enlarged. But Stanford was for sick kids! Theo couldnt be THAT sick, he just needed antibiotics or something. I watched my baby drive away in an ambulance. I was just standing there holding a Polaroid of Theo the nurses had taken. Later that night, Dr. Bernstein, the Chief of Pediatric Cardiology told us that Theo was missing the left side of his heart. Theo would have died at home that day if we hadnt brought him in. I realized that listening to my gut had kept my child alive. Dr. Bernstein drew pictures of a healthy heart, and of Theos heart, offering three choices. The first was compassionate care, which meant unplugging him, holding him, and letting him die. The second was a heart transplant. The third, which is what we chose, was a series of three open-heart surgeries. Lisa: I remember our first hospitalization. We got through

angry, we couldnt even have a private conversation! As her words sunk in I realized we didnt have to give away our power as parents for Maddy to be saved. We had to find a way to be a part of her medical team.

He was in as much shock as we were. It meant a lot to us that he always took the time to visit Theo, even when he was on the cancer floor. Lisa: Thats when you know a clinician really gets it; its the

rooftop; bird; sky, oud, oof. Unbelievably those are sweet memories. Tara: After Theo got cancer we went on fast-forward lifesaving mode. He had 85 percent of his liver taken out. He got an infection, putting chemotherapy on hold. Some straggling cancer cell went haywire and the disease spread to his lungs. They said he couldnt survive. We started chemotherapy. We induced labor for our new baby in between chemo rounds in the hopes that Theos counts would be high enough to visit his new brother in the hospital. Luckily baby Tommy is an easy, happy distraction on our daily trips to Stanford. Theo is bald. He

e to go clear...tim scans are land. Maddys to Disney

I realized we didnt have to give away our power as parents for Maddy to be saved. We had to find a way to be a part of her medical team.
all the tests and were awaiting results. Clinicians filled the room trying to feel Madisons tumor; doctors, interns, I think the janitor probably got a shot at it too. I felt torn between gratitude and wanting to protect Maddy; she wasnt an experiment. Tara: Its a fine line. Lisa: The room finally cleared. My partner Nancy was holding Maddy who had tubes everywhere. I started to lose it. I wanted to take Maddy and run. A nurse came in to hang fluid. Overhearing our conversation, she simply stated, Shes your baby, and left. At first I was 14 hope 2010 Tara: Our family opted to keep Dr. Bernstein even though there were pediatric cardiologists much closer to Santa Cruz. He really cares about Theo! After Theos second heart surgery, we learned that Theo had hepatoblastoma, a rare form of childhood liver cancer. Lisa: Thats insane! Tara: They hadnt treated a child with Theos heart and Theos cancer before. They likened it to being struck by lightning twice. Dr. Bernstein came to see us while we were waiting to hand Theo over for the risky liver resection surgery.

Theo today, battle scars and a smile.

little things. Several months into Madisons treatment one of the nurses told us about the rooftop garden at the hospital. She gave us the code so we could get up there. Madison was just learning to walk. On the rooftop we smelled our way through jasmine, lavender and sage. Maddy learned her first words on that

throws up everything I trickle into his feeding tube. The days are hard. I have plastic barf bins placed strategically around the house. Theo is happythis is all he knows. Magically the chemotherapy worked. Theo is cancer-free! Two years later,
Continued on page 33

safe transportation for seriously ill children: a missing commodity

Few And Far Between

BY HILLARY ROSNER

t seven years old, Elena was diagnosed with osteosarcoma, an aggressive bone cancer. Rapidly increasing care needs, treatment schedules, and hospitalizations soon forced Elenas mother to leave her job. The commute from Salinas, a rural farm-working community along Californias Central Coast, to the University of California at San Francisco Medical Center, where Elena must go for weekly chemotherapy treatments, is three hours minimum each way. With no car or licensed driver in the family, Elena and her mother must travel the distance by public bus, or sometimes by taxi to the bus, to the train, and back again. For a healthy child, the journey would simply be inconvenient, but for Elena, its grueling, uncomfortable, and potentially life threatening. Because her immune system is virtually nonexistent, the germs shes exposed to on public transportation could prove fatal. Whats more, her cancer treatments leave her nauseatedand on the bus or train theres nowhere to pull over if shes sick. The treatments are also exhausting, for both Elena and her mother, and its virtually impossible for them to sleep on the long trip home. Thankfully for our hypothetical but all-too-real heroine Elena, there is helpbut main-

ly because shes lucky enough to live in Monterey County, where shes eligible for a program operated by the Childrens Hospice and Palliative Care Coalition (CHPCC). Its one of a very small number of programs around the country that provide safe, comfortable, free transit to medical appointments for seriously ill children and their families. In CHPCCs case, the program features a staff driver who picks up the families at their homes, drives them to the hospital in a Prius, waits during the treatment, and then delivers them safely back home. Started in 2006, the program has provided more than 300 rides to date. While most communities already have well-functioning transit programs for senior citizens meeting a clear demand, very few have similar systems in place for children. Those that exist are piecemeal and highly local, and many rely on volunteer drivers. Kid One, a nonprofit in Chilton County, Alabama, provides free minibus transit for children in need of medical or dental treatment. The group currently helps families in five Alabama counties. In the Bay Area, the Lucile Packard Childrens Hospital offers Carea-Van for kids, a program that pairs volunteer drivers with lowincome families who need rides to the hospital for treatment. But these programs are few

and far between. The American Cancer Society operates Road to Recovery, which matches volunteer drivers with patients who must travel to hospitals for treatment, but the program is for patients of all ages, not specifically for children. And according to Heidi Liscona, ACSs community director for the Central Coast region, the demand is far higher than the number of volunteers on hand. The demand for children is particularly pressing. Parents cant risk missing a childs scheduled treatment, so arriving at appointments on time is vital. And since many seriously ill children across the country cant be treated at their local hospitals, treatment often involves hours of travel to large medical centers. Unfortunately, for many families in which at least one parent has had to stop working in order to care for a sick child, the cost of gas or car ownership can be an impossible burden. Theres a lot of pain we can do nothing about, says CHPCCs Devon Dabbs, but there are some unnecessary pains we can do something about. This is one of them. These are programs people can build and support within their own communities that really can make a big difference for families, says Dabbs. As a country, we should really look to address this.

hope 2010 15

How Building Coalitions Can Remake Our World

Recipe For a
BY RICHARD COLE BRUECKNER

If theres one thing history can teach us, its that ordinary people are capable of extraordinary things when they commit themselves to an ideal. Consider all the progress weve made as a society in just the past one hundred and fifty years. Weve abolished slavery, secured the voting rights of all citizens, outlawed segregation and racial discrimination, and we even created the weekend. Each of these successes came about because people just like you and me decided to stand up for what they believed in. As Gandhi once said, Be the change you want to see in the world.

16 hope 2010

Revolution
His belief that every good deed, regardless of size, makes a difference is a philosophy that has been echoed by inspired world leaders for more than a century. As Robert F. Kennedy so eloquently stated, Each time a man [or woman] stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he [or she] sends forth a tiny ripple of hope...and crossing each other from a million different centers of energy and daring those ripples build a current that can sweep down the mightiest walls of oppression and resistance. This is the foundation of coalition buildingthe idea that individually we can make a difference, but together we can change the world. Coalitions unite the isolated efforts of people and organizations to create an empowered community. By standing in solidarity with their fellow human beings and tenaciously pursuing the necessary steps towards realizing a common vision, coalition members arent just advocates theyre revolutionaries. So ask yourself: Do I want to spend my life putting band-aids on problems, or do I want to help start a revolution? a sUCCEss sTORY Childrens Hospice and Palliative Care Coalition (CHPCC) is an example of one way to build an effective coalition. In 2001 Lori Butterworth and Devon Dabbs, alongside a handful of children, parents and other likeminded people, embarked on a journey to transform healthcare in California. They began their quest by delving deeply into the needs of families undergoing the challenge of caring for a child with a life-threatening condition. From this need emerged a vision of a healthcare system thats more natural, healing, and family centered. Since then, CHPCC has grown into a diverse network of individuals, families, community members, clinicians, policy makers, and organizations that collaborate to pursue a common mission: challenging the existing healthcare system for children and insisting that public funding for healthcare services for sick children be in line with their needs. Eight years later, CHPCC has grown to nearly 2,000 members across the country and has achieved numerous successes. If youre wondering what steps CHPCC took to get where they are today, youre in luck. Here are some of the fundamental tools and ideas that helped guide CHPCC in the process of building and sustaining their revolution. CONCRETE sTEPs OF COaLiTiON BUiLdiNG STEP 1. Identify a major need that is being neglected and formulate your movements vision. Think of the vision as your long term goal, a sort of ideal-

hope 2010 17

istic carrot-on-a-stick propelling your movement forward. The key to a compelling vision is to make sure that the voices of those you want to represent are right beside you from the very beginning. When Butterworth and Dabbs launched CHPCC, they had no personal or professional experience to fall back on. Neither had cared for, or lost, a child to a life-threatening illness. So what did they do? They immediately brought experts into the process: parents, kids, and clinicians. They listened, learned, and sculpted a vision that clearly represented the ideals of their constituents. Interestingly, one of the keys to their success has been their non-partisan approach and their ability to remain open and engaged when presented with seemingly disparate points of view.

STEP 3. Build a diverse collaborative network by reaching out to potential stakeholders and allies. Keep in mind that the more inclusive and receptive your network is, the stronger and more innovative it will be. When you bring people to the table, identify ways you can help each other and come prepared to listen, because mutual respect and flexibility are essential components of a thriving, evolving movement. It is in this spirit of collaboration that CHPCC established their Public Policy Committee, which is made up of representatives from multiple organizations with distinct constituencies. The Committee has been instrumental in advocacy efforts and in the development of a new Benefit for children. CHPCC also established the Family

Never doubt that a small group of thoughtful, committed citizens can change the world. In fact, its the only thing that ever has. Margaret Mead
blogs. They even have Facebook and Twitter accounts! STEP 5. Allocate resources wisely. The manner in which you distribute shared resources across a network is critical to its total effectiveness. Keep in mind that resource sharing includes information sharing, because information is a valuable resource to both your coalition and the cause its striving to help. A good strategy is to develop an efficient division of labor and resources: form task forces to solve immediate goals that advance your cause, and get the right people and resources involved. Form local and regional committees, undertake projects that attract and include motivated people, and develop strategies to connect people to existing local and regional organizations. CHPCC did this by helping to build and support regional collaboratives in northern, central, and southern California which facilitate the dissemination of information, gather input, and bolster regional support for children with life-threatening conditions. Bi-monthly or quarterly meetings have been instrumental in growing and strengthening on-the-ground support networks for these children. The hardest part of the process is keeping it all together. It helps to develop a shared praxis, a practical habitual practice, which is mutually beneficial and advances your cause. When people help each other out over and over again, members of even drastically different communities can forge lasting social bonds that make your movement that much stronger. This was the case in many of the programs that CHPCC has taken on. Throughout the process of developing the Coalition, building programs, and establishing policy, CHPCC chose to begin or end each meeting by focusing attention on the children, often taking a moment to go around the room and have those in attendance say out loud the name of the last child under their care. It was a poignant reminder to remain present and united, despite personal differences, and refocused attention on the children. a FiNaL WORd ON REVOLUTiON. Revolution is about committed individuals armed with a mission relentlessly pursuing a vision of justice in the face of adversity alongside an empowered community of friends and allies. If youre serious about changing the world, get out there and build a movement. Reach out to those whom you want to help, to the countless others who share your dreams, and to those with the resources to make it happen. Remember that its not about us and them, but what WE can do to make sure that the world our great-grandchildren will inherit is not only something we can be proud of, but something we can be proud that we helped to create. With patience, respect, and dedication you can use coalition building as a model for starting a revolution founded on diversity, flexibility, and solidarity that can remake our world. The path may be difficult, but the rewards will be great. References
Proprietary information authored by CHPCC co-founders Lori Butterworth and Devon Dabbs, including power point presentations and educational materials, were used as source documents. For more information, contact CHPCC at 831.763.3070.

Coming together is a beginning. Keeping together is progress. Working together is success. Henry Ford
STEP 2. Develop a mission statement. If your vision is where you want to be, your mission statement is your plan for how to get there. Like a game plan or a road map, it can help guide your decisions and focus your efforts. When things get tough or out of control, you can always fall back on your mission statement to get your priorities back in line. While CHPCCs mission statement evolved over the years, taking into consideration specific program strategies, its intention never changed: Childrens Hospice and Palliative Care Coalition exists to ensure compassionate, comprehensive care for children with life-threatening conditions. Together with their families, we speak out for those too little or too sick to speak for themselves, and create programs that directly improve the quality of their lives. 18 hope 2010 Advisory Council, comprised of bereaved and caregiving parents, to provide critical input and guidance in the creation of Coalition programs and policies. STEP 4. Communicate frequently with coalition members. Outreach is vital to building and sustaining your movement, so be creative. Teleconferences, podcasts, electronic newsletters, print magazines, social networking sites all of these are at your finger tips, so use them! Effective and ongoing communication is absolutely essential to building the sense of collaborative solidarity that coalitions need to succeed. CHPCC pursues active and effective communication through quarterly conference calls, regularly scheduled meetings, list serve newsletters, webinars, and

making the connection

Bridge People
What the Family Advisory Council is teaching clinicians about caring for children

BY PAOLA BRUNI

Joe Wuelfing is an obscure ambassador. He isnt a U.N. delegate or a known personality on CNN. Most bloggers dont know him, and hes no Twitter whos who. Wuelfing is a parent, a bereaved father, and a self-identified change agent in a growing movement to enhance dialogue between families and clinicians around the issues of caring for a seriously ill child.

ilies, caregivers, and the community through shared experiences. Though pediatric palliative care is a rapidly growing field in the U.S., little research has been done around best practices that take into account the perspective of parents. One study, conducted by researchers at Childrens Hospital in Boston and Harvard Medical School, reinforces that parents want honest and complete in-

Our experience as parents is vital to the further education of professionals who have been taught text-book medicine but who might lack the empathy and understanding to act appropriately in the face of such trauma.
Wuelfing is part of the Family Advisory Council (FAC) for the Childrens Hospice and Palliative Care Coalition (CHPCC). Their mission is to diplomatically teach clinicians what its like to be a parent confronted with a childs chronic, life-threatening condition. Our experience as parents is vital to the further education of professionals who have been taught text-book medicine but who might lack the empathy and understanding to act appropriately in the face of such trauma, says Joe. We work to promote learning and support among famformation, ready access to staff, communication and care coordination, emotional expression and support by staff, preservation of the integrity of the parent-child relationship, and faith. Unfortunately, the antithesis is more often the norm, with many parents feeling both abandoned and overwhelmed by the pediatric healthcare system. Its a crime when we get a call from a doctor that says, Your childs cancer is back; theres nothing else we can do. Give us a call when you need us, offers Lisa Buell, FAC parent panel rep-

resentative. Families are often forced to take on primary responsibility for managing their childs pain at home; later those same parents are having a breakdown when they have to give their next child a Tylenol suppository because it triggers the image of the final days of their first childs lifeI found that out three years after our daughter Madison died, when I woke up in the middle of the night with my partner, Nancy, crying in my arms. When Madison was sick, Nancy was the one who gave her suppository pain medication, and all these years, she was thinking she had killed our daughter. I remember telling that story at an Initiative for Pediatric Palliative Care retreat. Afterwards, several clinicians came up to me in complete disbelief. They had been practicing with the idea that it was empowering for parents to administer and oversee their childs pain management. They had no idea how that could haunt, rather than help, a parent. Recent studies provide growing evidence of Nancys experience as a form of post-traumatic stress disorder in parents of premature infants in prolonged intensive care. Parents have been integral to CHPCCs advocacy efforts since the organizations founding in 2001. The Council was formal-

ized in October 2008 and parent participation in educational workshops and symposiums is on the rise. The FAC was recently heralded for conducting an inspired parent panel at the National Hospice and Palliative Care Organizations Clinical Team Conference in Denver, Colorado. The group has been invited by the California Compassionate Care Coalition to host statewide pediatric trainings on Californias new Physician Orders for Life Sustaining Treatment (POLST) and to attend grand rounds at Lucile Packard Childrens Hospital and at the University of California, San Francisco. FAC members have also offered their services to the Center for Advanced Palliative Care on the development of a pediatric-specific document that defines palliative care, quality of life and living. The FACs charter, says Wuelfing, Build the bridge, share the expertise from the parents perspective, and improve the way in which healthcare is delivered for the next generation of families in need. For more information on CHPCCs Family Advisory Council, contact Leslie Adams, leslie@childrenshospice.org.

See References on page 34

hope 2010 19

physicians philosophy

Is Palliative Care PC?

BY PAOLA BRUNI & LORRY FRANKEL, MD

This is Moriah;
Dr. Lorry Frankel explains as we stop outside the entry to Moriahs room. At 24 months, shes never been out of the hospital for more than a few days here and there. Moriahs home-awayfrom-home has been the cardiac unit at Lucile Packard Childrens Hospital, a world-renowned center for pediatric care nestled in the grassy knolls of suburbia in Northern California. Born with a congenital heart condition, Moriah has been precariously balanced between life and death since day one. I find myself staring. Moriah is cherubic. Her golden skin, round features, and mop of black curls stand out against the antiseptic white of her hospital bed. She appears immobilized by a veritable squid of feeding tubes and breathing apparatus. Monitors beat out a constant rhythm, reminding me that the plastic menagerie is keeping Moriah 20 hope 2010

shes been here for 360 days,

alive. Her almond-shaped eyes reflect her world like dark pools. I wonder if she knows what she is missing, if somewhere in that tiny body there is a latent impulse to go racing into the sunlight. Will she ever be normal? Is this a reasonable quality of life for a child? What is pediatric palliative care? Dr. Frankel is chatting with Moriahs mom who is camped out with a book at her daughters bedside. His easy banter is telling. As a pediatric intensivist, much of his twenty-seven year career has been spent here, treading the halls of suffering and healing. Dr. Frankel is an elegant man with a graying beard and gentle eyes. His large frame and broad shoulders arent intimidating. He greets everyone we encounter on our tour with a broad smile and a few wordsparents, nursing staff, and physicians. Iconic in his presence at the hospital,

and well known for his controversial stance on palliative care for children, Dr. Frankel is no slouch when it comes to sensitive issues and promoting healthcare reform. Moriah will never be able to live without some sort of technology to help her breathe and eat, he offers as we move on. Her parents arent willing to consider a palliative option: comfort care without any medical intervention. That would mean removing all of the equipment that is keeping her alive. They are still hoping for a miracle. As pediatric care has evolved in the last 30 years, more children than ever are surviving from illnesses that were previously life-threatening. Mortality in children of all ages is down 30-50% in the last 25 years. Innovations sustaining life include improvements in surgical techniques, pharmaceuticals for better anesthesia, improved medical therapies including critical care, newer vaccines and antibiotics, and child safety laws. The result is an estimated 500,000 children in the U.S. living with a chronic medical condition, some of whom are dependent upon technology for nutritional, ventilatory, or cardiovascular support. Despite changes in mortality, approximately 51,000 children die each year. The majority of these children are under one year of age and most, but not all, die in the hospital setting (often in the Intensive Care Unit) and a great distance from their homes and extended family and friends. Pediatric palliative care has emerged during the last 10 to 20 years to assist in the care of children with complex medical problems. The integration of palliative care for children is important when a cure is not probable, or when cure is an unrealistic goal for the child and family, says Dr. Frankel. Ive always tried, and I still do, to look at organ failure and how to

best support the child and family. What is the likely outcome for this patient? Will a child return to a normal lifestyle? For ninety percent, the answer is yes. Five to ten percent will never recover. As an offshoot of the hospice movement of the 1970s, palliative care has become a necessary adjunct to traditional medicine. It is a tool that can be used to facilitate decision-making, provide counseling services to parents and family members, and support the healthcare team during the most difficult times. Getting people on the same page is one of the greatest challenges pediatric physicians face, comments Dr. Frankel. There are major hurdles. When a child is in intensive care, our goals are for the next hour, for the next day, for the next week. We are constantly revisiting the question of curative intervention and working to sustain the comfort of the child. As professionals, we have to examine the overall case, and we are morally and professionally obligated to provide all of the options. At the end of the day, families have to solve the problem, but we must do what we can to lessen the burden. For Dr. Frankel, embodying the philosophy and practice of pediatric palliative care has become an avocation. Palliative care is about decision making that compassionately considers the desires of the child, the wishes of the parents, and helps to identify community resources that can help meet their needs, he says. It asks the question, Is this just about survival, or is it about quality of life? As pediatric physicians, we must focus on making sure the child can grow and thrive. Families need support to undergo the psychological adjustments necessary to care for a sick child. And, we need to advocate for a healthcare system that supports the development of care plans that can define treatment.

Complexities surround the oft criticized and morally confusing issue of pediatric palliative care. Accepting pediatric palliative care into the healthcare continuum at diagnosis or early in the course of treatment is still a conundrum for many clinical professionals. Palliative care is extremely important, but it has an unfortunate connotation for so many people, observes Dr. Frankel. Weve considered changing it to comprehensive care, but my colleagues say, Does that mean Im not already providing comprehensive care? Palliative care, whether for an adult or a child, represents a fundamental shift in a medical culture that considers cure the only reasonable outcome. Palliative care is still on the fringe, Frankel comments. As professionals, we are still largely focused on healing. Physicians are still reluctant to discuss palliative care options because it means we have failed. As doctors, we treat disease. We dont allow our patients to die. We hope to

As professionals, we have to examine the overall case, and we are morally and professionally obligated to provide all of the options. At the end of the day, families have to solve the problem, but we must do what we can to lessen the burden.

find a cure. At the same time, palliative care isnt just for the terminally ill. It can be a support structure for both the family and the clinical team throughout the care trajectory. As Americans, how we value life and accept death, especially the death of a child, can inhibit access to the type of comfortbased support that palliative care offers. Religious and spiritual systems of faith and belief
Continued on page 34

hope 2010 21

illustrating a
BY LESLIE ADAMS, MSW, LORI BUTTERWORTH, AND DEVON DABBS

Working Benefit
Taking a family through the process
Does it make sense for a parent to have to mean in practical terms for a family of a child choose between comfort and cure for their very with a potentially life-limiting illness? It means the family will have access to a care coordinaill child? California recently answered this question with tor who will work with them to help determine a resounding No! by establishing a Pediatric Pal- what in-home, community-based services they liative Care Benefit Partners for Children. This need and how they can get them. Services may demonstration project, supported in part by a fed- include family support, 24/7 on-call nursing eral waiver, enables seriously ill children to access support, in-home instructions on how to use community-based palliative care concurrent with medical equipment, expressive therapies like music, art and massage, and respite care. It means fewer curative treatment. Partners for Children will roll-out in 13 pilot hospitalizations and more quality time at home counties over the course of the next three years. As with family. For clinicians based in the hospital, it means of November 2009, five counties are participating in the pilot: Alameda, Monterey, San Diego, Santa medical community partners who will monitor the Clara, and Santa Cruz. Humboldt, Marin, Orange, health and well being of the child while they are at Sacramento, San Francisco and Sonoma counties home. It means professional collaboration as they, will join the project in October, 2010, followed by along with California Childrens Services (CCS), jointly provide comprehensive care to their most Fresno and Los Angeles counties in 2011. What does the Pediatric Palliative Care Benefit vulnerable patients. WHO IS ELIGIBLE? The Pediatric Palliative Care Benefit serves children 20 years of age or younger who have an eligible medical condition* and who qualify for full-scope Medi-Cal benefits. Children may not be enrolled in another waiver, but may disenroll from one in order to participate in the Partners for Children Waiver. Because the Benefit is a demonstration project, it is limited to those who live in one of the 13 pilot counties. HOW IS A REFERRAL MADE? The childs primary care physician, his hospital medical team, or his CCS case manager can refer the child to the program. A family may also self-refer. Once the CCS Nurse Liaison determines eligibility and the family chooses to enroll, the Nurse Liaison will work with the family to select a communitybased hospice or home health provider. HOW DOES A FAMILY RECEIVE SERVICES?
The care coordinator from the selected hospice or home health agency will meet with the family to discuss goals of care and to create a plan that outlines their wishes. Together with the family, the care coordinator will identify and arrange for a local team of specialty providers to address the unique needs of the child, parents, and siblings in their home environment.

*The list of medical conditions that may qualify a child to receive services includes: Cancer Cystic fibrosis Brain or head injuries Spinal muscular atrophy Duchenes muscular dystrophy dependent on a ventilator Intestinal problems and dependent on IV nutrition Liver or bowel transplant Heart defects or conditions Problems following a transplant Leukodystrophies

hope 2010 23

helping children find their voice

Growing Up Dying
BY TIFFANY CHRISTENSEN

When I was a little girl, as young as five or six, I remember having a sense that cystic fibrosis was not a curse or a mistake. I remember distinctly feeling that my disease was something I was given on purpose and was something that I was meant to learn and grow from. At the same time, the world in which I lived, the culture of my family, of healthcare, and of society at large, were all giving me a different message.

n elementary school, I had several teachers who, with pity in their eyes, would tell me how sorry they were that I had been given the short end of the stick. One teacher remarked that no one should ever have to suffer the horrible things that I would suffer due to living with cystic fibrosis. My sense that this disease was a gift began to transform. From all of the information around me, it became clear that I should not feel good about having this genetic disorder but, in fact, that I should feel very bad about it. As adults caring for sick or dying children, we must understand that every word, every tone in our voice, and every facial expression is a clue that children will use to piece together the truth of their illness. As a sick child, I often was unsure about the facts of my health status and had no larger context for it other than the knowledge that I was different from my healthy peers. I looked to those around me to guide me, to tell me if what was happening to me was good, bad or scary. I took my cues and acted accordingly. Many of my beliefs about cystic fibrosis itself were based on rumors and half truths. Another elementary school teacher told her classroom that I would be dead by the time I was 21, and this rumor got back to me. This I took as truth and spent nights awake thinking about the number 21. During clinic visits, my mother and the physicians sometimes spoke in hushed tones in the corner, and I listened for

more clues about what was happening to me, basing more and more of my understanding on a word or phrase taken out of context. My family and my healthcare providers sought to protect me from the grim realities of the illness but instead only allowed me room to let my imagination run wild. As we all know, the imagined is often far worse than the reality. During my first hospital stay at age 12, my own mortality became very real to me. A ten-yearold boy with cystic fibrosis died down the hall from me. I once again put clues together and formulated ideas about the meaning of having a short life and leaving behind a grieving family. Many things about this picture pulled at me but perhaps one of the more difficult was this feeling that I, as an individual, was yet unknown. I could feel potential and uniqueness inside of myself that had not begun to outwardly manifest. This left me with a desperate desire to be seen and acknowledged before it was too late. My desire for acknowledgement was not unique. For many people, a great psychological need at end of life is to know that we have made a difference or left our mark on this world. This need is not different in children. Seeking ways in which childrens personal philosophies can be embodied can give them the opportunity to see their legacies come to life. This can give them the peace and satisfaction
Continued on page 34

24 hope 2010

Moral

CASE STUDY

C de
Ethical Issues in Pediatric Palliative Care

Case: Katy is a one-week-old infant in the Neonatal Intensive Care Unit (NICU). She was born at 36 weeks with severe holoprosencephaly, a birth defect in which the front portion of the brain fails to separate into two hemispheres, causing critical abnormalities and still birth or early death. She also has a cleft lip and palate and suffers from severe seizures. Katys mother had no prenatal care. Her parents
BY HOLLYE HARRINGTON JACOBS, RN, MS, MSW LORI FEWSTER-THUENTE, RN, MSN

are married. She has a five year-old brother. Katys father is unemployed. The family gains its livelihood on Katys mothers modest income working part-time at a library. They have no insurance. Katys mother is a Catholic Latina and her father is a Baptist African American. The NICU team has told Katys parents that the prognosis is grim and it is likely that Katy will die within days or weeks. Katys mother wants Katy to receive palliative care without pursuing aggressive lifeprolonging treatment. Katys father insists that everything be done for her. The healthcare team supports Katys mothers wishes for palliative care and believes that ongoing medical interventions are futile.

Death at any age is traumatic for families, but caring for dying children is especially challenging. As children and their families struggle to deal with their emotional stress, they can benefit from the presence of, and services provided by a trusted interdisciplinary healthcare team

that includes nurses, physicians, social workers, chaplains, childlife specialists, and volunteers. Among the ethical issues they confront are what, when, and how much medical care a child should receive. In Katys situation, concerns include whether to prolong her life, whether to

withhold and/or withdraw medical treatment, the implementation of do-not-resuscitate orders, and allocation of resources. In all circumstances the key to achieving the most positive outcome is to prevent ethical issues from
Continued on the next page

hope 2010 25

becoming emotion-laden ethical dilemmas. The Four Box Method is designed to accomplish the most satisfying results for everyone involved. It provides a practical approach to ensure effective communication and understanding, to identify the pertinent facts and values in any clinical situation, and to facilitate the discussion and resolution of ethical issues. In the Four Box Method, every clinical case can be analyzed by means of four topics: Medical Indications, Patient Preferences, Quality of Life and Contextual Features. MediCal indiCations refer to the medical evidence for or against the use of diagnostic and therapeutic resources to save life, restore health and function, prevent death, and/or assist in a peaceful death. In Katys case, the team should fully understand her medical diagnosis, treatment options and prognosis. What are the goals of Katys treatment? What are the probabilities of success? What will happen in case of failure? Each of these questions should be answered first in a team meeting and then in a discussion with Katys parents. Patient PreFerenCes also must be considered. Because infants are unable to make their own decisions, parents and guardians have the moral and legal authority to decide for and act in the best interest of children. The interdisciplinary team should ensure that both of Katys parents are informed about the benefits and risks of medical treatment. For example, Katys father states that he wants everything done. Some parents believe that if they choose to stop aggressive treatment in favor of only comfort care, they will be viewed as abandoning their child. It is the duty of the interdisciplinary team to help Katys parents understand that there is no cure for Katy and that by transitioning to palliative 26 hope 2010

care they are doing everything for Katy to ensure the relief of pain and suffering. To achieve a satisfying agreement, it is essential that the team be sensitive to and seek to relieve the parents fears and emotional stress. Quality oF liFe must be considered in all clinical situations. The team should ask Katys parents what quality of

Features must be taken into consideration. Due to the complexity of physical and psychosocial care at the end of life, the potential for discord between healthcare providers and families is very high. Family and provider issues have the potential to influence treatment decisions. Conflict between parents and among healthcare team members most

Medical Indications

Contextual Features

Quality of Life

FOUR

BO X
M
HOD ET

Patient Preferences

It is the duty of the interdisciplinary team to help Katys parents understandthat by transitioning to palliative care, they are doing everything for Katy to ensure the relief of pain and suffering.

life means to them. The team must ensure that Katys parents comprehend their daughters physical and mental condition and what that means for her and their future. Finally, the team needs to create a plan with a clear rationale for Katy to minimize her pain and suffering and maximize the quality of life for both her and her family. Because every clinical case is embedded in a larger context of families, communities, institutions, and financial and social arrangements, Contextual

often occurs in situations in which treatments fail to achieve desired results, which may cause discomfort, suffering and other References unexpected consequences. The Beargen, R. (2006). How hopeful team has a responsibility to con- is too hopeful? Responding to sider, respect and support Katys unreasonably optimistic parents. Pediatric Nursing, 32(5), 482-486. parents, both individually and as Kopelman, A. (2006). Understanding, a couple. avoiding, and resolving end-of-life Financial and economic fac- conflicts in the NICU. The Mount Sinai tors are considered in Contex- Journal of Medicine, 73(3), 580-586. tual Features. Because Katys Jonsen, A., Siegler, M., & Winslade, father is unemployed and the W. (2002). Clinical ethics: A practical family has a modest income with approach to ethicalthdecisions in clinical medicine (5 ed). New York, no insurance and because state NY: McGraw-Hill. resources are limited, home care

for Katy will likely be cost prohibitive. Cultural and religious considerations also impact decision making. Katys parents different religious and cultural backgrounds may influence their perceptions regarding the benefits of palliative care. The team needs to reconcile these differences into a unified treatment plan that is in Katys best interest. Ethical issues are present in every clinical situation. The key is to prevent ethical issues from becoming strife-ridden ethical dilemmas. Using the Four Box Method, open communication and rational decision making become possible, resulting in the resolution of ethical issues and the production of an optimal treatment plan benefiting the child, family and healthcare team at the end of a childs life. In Katys situation, the entire team consulted with her parents and resolved the many difficult issues generated by Katys life and death, including her fathers fear that if he did not pursue aggressive medical treatment, he would not be fulfilling his role as a parent. The team, acknowledging the pain and anxiety of the situation, reassured him that palliative care was in Katys best interest and that the family would continue to be supported throughout Katys death and bereavement. Katy was discharged two days later with home hospice and died peacefully two months later, surrounded by her family.

inside a mothers story

Ebb and Flow

As I walked on an early summer day in South Florida, I listened to Duncan Sheiks She Runs Away. I caught a phrase about symptoms and then the darkness comes and the darkness goes, followed by happiness aint never how you think it should be so. It provoked a revelation. Pediatric palliative care is necessary because the darkness comes and the darkness goes, and happiness aint never how you think it should be so. It was Christmas Eve when our pediatric neurologist told me that my beautiful blondhaired, green-eyed, four-year-old son Austin, was diagnosed with a rare degenerative brain disease, NBIA disorder, and probably would die within a few years. I will remember forever that dark moment, thinking the light never will shine again. Like most parents, I researched, read, cried, prayed, and cried some more. I came to understand the terms spasticity, dystonia, and neurogenerative brain disease. What I had no way of comprehending was the depth of suffering the disease would impose on Austins body, or the way pain could ebb and flow over minutes, hours and even days gripping my little boy with such force that I would have given my own life thousands of times over so that he would not have to endure another nanosecond of suffering. When we finally became acquainted with hospice care, I was sure that by picking up the telephone and signing the admission papers (even though we were athome patients until the end), it meant that we had been defeated. I had given up on my son and, in essence, on myself too. In hindsight, I could not have been

BY DIANNE GRAY

Dianne and her son Austin shared quality time together floating in the pool thanks to a creative hospice nurse who didnt see Austins oxygen tubing as an obstacle.

more wrong. Instead I became friends with a system of care that includes comfort, guidance, education, pain management, and the ability to enjoy what Elisabeth Kubler-Ross taught, which is the concept of living fully while dying. Pediatric palliative care is the solution, because the agony does come and can go at all hours, stealing away precious moments of the time I had left with my child. Palliative care allowed us to share moments of genuine happiness that we would never have been able to experience. We tasted chocolate ice cream in bed, smiled at Timon and Pumbaas jokes, and baked in the kitchen with Austins sister Christina. We even floated in the pool with connected sections of oxygen tubing. One nurse scowled when I suggested it, while the one who made it happen giggled! We even found a way to swing in the backyard despite the

naysayers insisting that it couldnt be done. Palliative care opened the doors to the creation of happy memories, not only for Austin, but for those of us who remained after his passing in February 2005. I am listening to Duncan Sheik again, and I agree with him, the darkness comes and the darkness goes and happiness aint never how we think it should be so. It was never a life I would have requested, but looking back I can say I was able to live fully and appreciate the ride. Without palliative care, I may not have been able to feel this way as the darkness may have stayed and the happiness may have gone unrecognized. I am indebted to our palliative and hospice care team for supporting our family. It is not a perfect system, yet I will cherish the perfect moments that I shared with my son for the rest of my life.

hope 2010 27

It Takes A
Building a Model for Care Coordination
BY LISA JENSEN

Village
It takes a village to raise a child and educate them, nurture them, and care for them when they need attention. As a proverb, it transcends its African source. That the welfare of a child is the responsibility of the community at large, not only the childs parents, is a universal truth, and one especially meaningful when the child is facing a life-threatening illness. Sadly, families coping with this crisis have little access to community-based hospice and palliative services available for adults. But thanks to innovative programs like the Childrens Hospice and Palliative Care Coalitions Partnership for Children, community-based care coordination is improving the quality and availability of care for these children and the families who love them. What, exactly, is care coordination, and why is it so essential? Ask parent-activist Lisa Schoyer, whose son, Quin, died at the age of six years, nine months, from a rare disorder compounded by cancer. I needed a care coordinator, says Schoyer. That would have allowed me to be more of a parent. She was too busy dealing with specialists, agencies, and organizations, trying to get all of the pieces to work, to spend enough quality time with her son during the final stage of his life. When a child is ill, a bewildering buffet of options confront parents whose plates are already heaping full. Besides the daily tasks of keeping a family functioning through this emotional time, their childs treatment may involve rehabilitation, curative or life-prolonging therapies, or research trials; it may combine caregiving by community-based agencies with periodic, or at times frequent, admissions to the childrens hospital or clinic appointments with medical specialists who may not be located nearby. Parents may need to apply to state, federal, or local agencies, advocacy groups or professional organizations for services and resources. Each of these groups assigns its own case manager to the child and his family. But, as Schoyer recalls, When my son was sick, we had nine case managers. We needed a care coordinator to organize the case managers. The difference between a

28 hope 2010

community-based care coordinator and a case manager is the subject of some confusion among healthcare professionals. Yet their functions are clearly distinct. A case manager focuses on meeting the familys needs as they relate directly to the service for which his or her organization is responsible. Typically, there is little or no communication between individual case managers for, say, a specialty hospital, a medical clinic, and a government agency, even though all are involved with the same child and family. This silo effect leaves families often overwhelmed and scrambling to find cohesion among the disparate groups offering up plans, orders, and recommendations for their child. As Schoyer says, I ended up being the person talking to each of the doctorsand I didnt have the capacity to research all of the details. The role of a care coordinator is to establish a timely, seamless continuum of care between all the organizations (and case managers) involved in a childs care. A coordinator works to design and implement a personal comprehensive caregiving plan for a child, and advocates on behalf of the family for services and support. In 2008, the California Department of Health Care Services (DHCS) named CHPCCs Partnership for Children (PFC) program as the state model for other communities looking to adopt care coordination as a standard of support. Following the PFC pattern, anyone building a care coordination program should begin by organizing their local caregiving community. Find out what medical, emotional, spiritual, social, and financial agencies and resources already exist, and bring them together in a dialogue on how best to serve the needs of local families. Once these various agencies

When my son was sick, we had nine case managers. We needed a care coordinator to organize the case managers.
are on board as partners in care, its the care coordinators role to keep the lines of communication open between themfacilitating the sharing of critical information and avoiding duplication of services. As partners begin to work in collaboration, the care coordinator scrutinizes the system, identifies unmet needs, and addresses themfrom practical matters like transportation and respite, to pediatric training for hospice workers who traditionally care for the elderly. Of course, the most crucial part of community-based care coordination is the community itself. Support circles consisting of friends, family, volunteers from communities of faith, and others can provide much-needed practical services (running errands, helping families to complete confusing forms) as well as provide emotional support. And because community involvement shouldnt come to an abrupt halt if and when a child dies, the care coordinator can also promote a system whereby these community caregivers can stay in touch with families on holidays, birthdays, etc. In this way, even grieving families can maintain the valuable sense of emotional and spiritual support they need after the death of their child. Care coordination allows parents to do what they do best: maintain a loving and stable home life for their child, while sharing their

most precious resourcetime together. Care coordination is a key element of Californias new federal waiver, Partners for Children, designed to provide community-based palliative care services for children with lifethreatening conditions, reimbursable through full-scope Medicaid. The Partners for Children program is now being implemented in the first five of thirteen California pilot counties: Santa Cruz, Monterey, Alameda, Santa Clara, and San Diego. By providing the tools and expertise for other communities to build their own networks of compassionate, comprehensive, communitybased support, these care coordination pioneers are creating the proverbial village that will revolutionize the way we care for seriously ill children and their families.

C O O R D I N A T I O N

The role of community-based care coordination is to establish a timely and seamless centralized continuum of care for children and their families. This is achieved by creating more fluid communications:
n between care settings (home, clinic, hospital). n between multiple care providers (doctors, therapists, specialists, hospice). n between agencies, service and support organizations.

A care coordinator works with the family to develop and implement a Family-Centered Action Plan (F-CAP) to identify and address the specific social, emotional, spiritual, physical, and economic needs of the child and family.

To this end, the duties of the care coordinator may include: n on-site visits to monitor the health, safety, and welfare of the child. n coordinating medical treatment plans and other services between providers to avoid duplication or disparities of treatment. n keeping the family informed and educated about treatment. n accompanying child and family to medical and other service appointments. n monitoring of the F-CAP to ensure that all the familys needs are being addressed.

C A R E

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innovations in healthcare

Parents Talk POLST

BY LESLIE ADAMS, MSW

How can a form printed on bright pink cardstock help a family and a medical team through one of lifes hardest conversations? The Physician Orders for Life-Sustaining Treatment or, as it is more commonly known, POLST, is more than a form; it is a conversation catalyst. The POLST promotes clear, concise and honest dialogue between the medical provider and family as they discuss endof-life healthcare planning. Once completed, the POLST is honored across care settingsin the community, at respite, and in the hospital, freeing families from repetitive, difficult conversations. Childrens Hospice and Palliative Care Coalition asked their Family Advisory Council (FAC) to consider the use of the POLST when the patient is a child and to offer guidance to healthcare professionals working to implement the new form. Their hard-won advice: Explain that comfort measures are medical treatment. When a doctor you have worked with over the last two years on your childs treatment tells you, there is nothing more that we can do, you believe him. When the doctor told us that, we didnt know that there were comfort measures that could be taken. We literally thought there was nothing more that he could do for our daughter.

Validate the parents. It is important to hear from the doctor, You have done everything you could. You are a good mom. Whatever you choose to do, trust that you are making the right decision.

Respect family ethics, values, and faith. Medical facts arent Provide honest information the only part of the decisionin plain language. It was hard making process. We decided to for me to process what the doc- forego experimental treatment tor was saying. I didnt under- for our son. The probability of stand all the terms, but was too success was low and we are a family of strong faith. We knew, stunned to ask. and he knew, that even if he died, Offer a compassionate ap- he would be okay. proach. I look back and I cant To use the POLST effectively, remember the exact words of the medical conversation FAC members agreed, the mostly I remember how people medical team must carefully define each treatment opspoke to us. tion, discuss how each option acknowledge the child and will affect quality of life, and relay information appropri- explain who will provide the ately. My child wanted to know treatment and where. Using everything that was going on but the POLST as a guide, informed only wanted to hear the informa- choices can be made. tion from her mom. The medical team honored this request. It made me feel like they respected her as a person.

30 hope 2010

A ClOSER lOOK

up to speed

SO whATS ACTuAlly ON ThE POlST?

Talking with physicians about palliative care for your child is tough, but its also important. The POLST gives you concrete choices while making it easier to talk about your childs care. The POLST forms may vary from state to state, but they all cover common ground. One section allows you and your family to decide if and how resuscitation will be attempted. Another part outlines three levels of medical intervention to choose from comfort measures only, limited additional intervention, and full treatment. It also gives you options for artificial nutrition. With the POLST, you can personalize your childs care and change your mind at any time. Once the POLST is signed by you and your childs physician, it goes wherever your child goes. You wont have to repeat yourself, and thats the point.

NHPCO Shines Light on Unmet Need

The National Hospice and Palliative Care Organization (NHPCO), in conjunction with the Childrens Project on Palliative/Hospice Services (ChiPPS), developed the first national pediatric principlesStandards of Practice for Pediatric Hospice and Palliative Care Programs, based on data collected through their pediatric services survey (2007). The survey revealed that while the majority of hospice agencies and palliative care programs serve pediatric patients, only a small minority had formal pediatric programs with specially trained staff. Providers demonstrated a real need for the education, resources, tools, and methods required to create high quality, sustainable programming.

The Standards, along with a recent report Facts and Figures on Pediatric Palliative Care and Hospice, by Sarah Friebert, MD, offer clear insights into best practices and the current culture of pediatric palliative care. Both resources are available online at www.NHPCO.org/pediatrics. Also on tap, ChiPPS quarterly E-Newsletter provides up-to-date information on the latest news in pediatric hospice and palliative care. Email CHIPPS2@NHPCO.org to receive this free newsletter.

In Focus
California HealthCare Foundation
Since 2005, the California HealthCare Foundation (CHCF) has partnered with the Childrens Hospice and Palliative Care Coalition (CHPCC) to increase access to palliative care for children with life-threatening conditions. At the debut of this partnership, only 422 children used the Medi-Cal Hospice Benefit a small fraction of the children and parents who could benefit from it each year. Too many children receive ineffective and expensive care while their pain and other serious discomforts go poorly addressed. California is now poised to dramatically expand access to palliative care for Nick Snow children and their families, following enactment of the 2006 Nick Snow Hospice and Palliative Care Act, and subsequent federal approval of the states

The Physician Orders for Life-Sustaining Treatment was signed into California law on January 1, 2009. For more information about POLST, visit http://finalchoices.org

Pediatric Palliative Care Benefit in 2008. These achievements wouldnt have been possible without the strong leadership, tireless passion, creative thinking, and collaborative spirit of CHPCC. CHCF is extremely proud of CHPCCs accomplishments yet much remains to be done. For this reason, the foundation continues its partnership with CHPCC to promote awareness of the palliative care services available through Medi-Cal, to build and strengthen pediatric palliative care skills that integrate the experiences of parents and families, and to build operational capacity among counties selected for the Medi-Cal pilot for appropriate referrals.

hope 2010 31

just the faqs

Frequently Asked Questions About Pediatric Palliative Care

Q Is palliative care just another word for
hospice? GW: No. Palliative care is for anyone with a potentially life-limiting illness. In pediatric palliative care, children may receive curative treatment right alongside comfort care, and may recover to lead long lives. Pediatric hospice care is for dying children whose families have decided that continuing curative treatment will cause more harm than good. DK: Hospice care is a subset of palliative care. Imagine a big circle. That is palliative care. And within that big circle is a smaller circle. That is hospice care. show a very sad crying face and a very happy face, and every face in between. We encourage children to point to the face that demonstrates how they feel.

Q What do most children want from a

healthcare professional? GW: Young children want a genuine friend. Adolescents need an honest confidant. Overall, children and adolescents need someone who has the time and is willing to do it their way. DK: Children want to know what you are going to do and why. For example, if you say that a poke wont hurt and then it does, you have lost their trust. They want honesty.

Q What else should families know about

pediatric palliative care? A conversation with Gay Walker, RN, Director, TrinityKids Care Hospice, and Diane Kurtz, RN, Pediatric Palliative Care Manager, Pathways Home Health and Hospice. Combined these two California-based nurses have more than 55 years of experience in pediatric healthcare.
BY DEVON DABBS

Q Why is caring for a child at home so

important? GW: Ask a child, Do you want to be in the hospital or would you rather be home? Most say, Home! We are able to provide families with the medical assistance and the knowledge to keep their child comfortable, so kids can safely be at home. DK: Children thrive at home. Like most of us, children are happier, eat better, and are more comfortable when they are at home in their own beds surrounded by their own things.

DK: It is an opportunity to have the best quality of life possible for the child, because palliative care directly addresses their emotional and physical pain. As a result, their bodies often respond better to treatment.

Q About pediatric hospice?

GW: That they are not alone during this time of unimaginable crisis. When the goals of care begin to shift from cure to comfort care exclusively, a team of experts in end-of-life care can provide the child and their family with spiritual, emotional and physical comfort, helping to alleviate their fears. We mustnt forget, that even when they are dying, children are still growing. We need to be compassionate about the process of a child growing and changing as he or she is dying at the same time. Hospice team members are the experts in this area.

Q So when should pediatric palliative care

be introduced? GW: Ideally, palliative care should be introduced at the time of diagnosis of a potentially life-limiting illness. DK: There are many things we can do early on to assist families with medical decision making, setting family goals, and providing physical and emotional support.

Q How do you manage a childs pain?

DK: One of the most important aspects of palliative care is to keep children as free of pain as possible; however, children cant always tell you where it hurts, so we have to be detectives and ask, Is it in your tummy? Are you spinning? Does it hurt all the time or come and go? We also need to watch their behaviors for clues. GW: When children tell us their level of pain, we need to believe them and treat it accordingly. If a child is too little or unable to tell us how they feel, we use different pain rating tools such as drawings of faces that 32 hope 2010

Q How will Californias new Pediatric

Palliative Care Benefit change the manner in which you care for a child and family? DK: We will be able to provide more services that enrich their lives, enabling them to live as fully as possible.

GW: We can develop a stronger relationship with the child and the family. We can be true partners in care, and be by their side throughout the journey wherever it may lead them.

Sharing Wisdom, continued from page 14

we convinced the doctors to do his third heart surgery. Now we are in the good years. Theo is eight years old. There are no imminent surgeries, no feeding tubes or PICC lines, no home nurses. We just give Theo his meds twice a day, make sure his hearing aids have batteries, and live. Lisa: Hes a miracle. It still must be hard. Tara: Sometimes people ask about Theos scars. Hes comfortable running around without his shirt, especially since we live in a beach town. I always notice people whispering to each other, eyes on him. His battle scars are

Tara: Those of us who have been thrown into the world of sick children really do walk around feeling cracked open and vulnerable. Anyones question, at any time, could make us go somewhere we really dont feel like going. Lisa: We have to find what works for us. Tara: Totally. Its sad to think about all that Theo has to deal with every day. I am constantly aware too. If he is tired, or doesnt have an appetite, theres always a corner of my mind thats on guard watching for heart failure. There will be a time when his heart poops out. So far its working well, but eventually he will need more heart repairs

e dress. rple danc in her pu irls Maddy tw

I dont know that Ill ever be able to accept that Madison didnt get to grow up and have a full life. But every parent, family member and clinician who is touched by our children has learned to celebrate life and live with loss.
intense. People expect to hear gory details from some crazy accident. When I give my nutshell response, that he had three open-heart surgeries AS WELL AS liver cancer, theyre usually shocked out of their whispers. When kids ask about his hearing aids, Theo says that hearing aids are like glasses for his ears. Lisa: Even little Theo has learned to script his answers! After Maddy died, my best friend Georgine opened up her heart, let me crawl inside it, and carried me through years of grief. She helped me find the words to respond to questions; Is this your first pregnancy?, How many children do you have?, or the really tough one; Hows Madison doing? She taught me to answer only what I felt comfortable with. She said, If theyre your friends, they will understand. If not, f*#k em. She gets it in a way that nobody else does. and maybe a transplant. I try not to think too far ahead. What was it like after you lost Maddy? How did you make it through the days? Lisa: The first few months after Maddy died one of my friends said to me, Youre not going crazy, youre grieving. Those words helped save my life. I did feel crazy. If I wasnt replaying memories, I was desperate to forget the hurt. Our friends supported us. They cooked, shopped, cleaned and sat with us in the quiet. Everyone kept calling even when we didnt return calls. They shared stories and said her name. Our friends and family still remember Maddys birthday and the anniversary of her death. After a decade of living with loss, I can finally tell Madisons story without shoving my mouth full of vanilla frosting. When my children get sick, I believe theyll

Theo holdin g his new br other, two weeks after start ing chemo

get better. Im still afraid of taking them to the doctor, but I can go by myself now. I dont know that Ill ever be able to accept that Madison didnt get to grow up and have a full life. But every parent, family member, and clinician who is touched by our children has learned to celebrate life and live with loss. Tara: Its so important to remember to celebrate life. I do this constantly with Theo. Every year we have a healthy party to celebrate his remission. I focus on one day at a time and if that feels like too much, I concentrate on each moment. So far, its

worked. To see Theo today, as an active, rambunctious eight-year -old, youd never imagine what hes endured. He skateboards, plays baseball, is at the top of his class, eats more than I do, and is a happy, wise little person. I knew he could do it. I tried. I trusted. I listened to my gut. I enjoyed the little moments in between the big moments. Lisa: Keep it up girl! Tara: You too, Mama!

hope 2010 33

Growing Up Dying, continued from page 24

of knowing they will leave this world a little better than when they arrived. Such was the case with Brendon, an eleven-year-old boy living with end-stage leukemia in Washington. On his way home from a clinic appointment one day, he noticed a group of homeless people in a nearby park. Brendon found this sight to be unfair and stated, Theyre probably starving, so give them a chance. His family responded and made 200 sandwiches, helping those hungry and in the park, and allowing Brendon to see his own legacy of compassion in action. It can be a mistake to assume that sick or dying children are unaware of what is happening to them. In my life, thoughts of my illness and death were always at the front of my mind but something I felt was necessary to keep to myself. Adults asserted that these topics were off limits because of my youth, but looking back, I believe it more often had to do with their own discomfort. A child dying in our culture is considered the worst-case scenario, and, as a very sick child, I felt the weight of that belief. I had things worthy of saying about my circumstances but did not feel I had a voice in such matters. Six-year-old Elena from Chicago might have felt the same way I did. As she was dying of a brain tumor, Elena secretly wrote notes to her family and hid them in backpacks, in books, in dresser drawers, between dishes in the china cabinet and in photo boxes. After her death, her family began to find these notes. As it turned out, she left behind hundreds of messages. While I cant know what Elena was thinking, I imagine she used these notes as a way of saying what needed to be said even though she felt the same pressure to protect her family 34 hope 2010

from her reality. Of course, being open about such thoughts and feelings would be the ideal. Finding ways for children to participate in the shaping of their legacies can be healing for both the children and their families. For example, we all have family stories we tell about deceased persons whom we love, and often these stories are passed down through the generations, woven into the family tapestry. Too often, we wait to tell and cherish these stories until after a loved one has died. If a child is dying (or an adult, for that matter), it may be heartwarming for him or her to know which personal stories will be passed down through the ages. Will they be funny stories? Stories about when the child was particularly brave? The story of this childs birth? Whatever the stories may be, sharing such memories with dying children will reassure them that they will never be forgotten while offering them the chance to add insight as to how they would like to be remembered. Giving dying children the opportunity to express who they are and what they believe is the first step in allowing them to leave behind a piece of their own individuality. By thinking strategically, it is possible to take these personal beliefs and expressions and move them into action. However it may manifest, it can be gratifying for children to see that they have the ability to impact the world around them. In addition, having this kind of emotional and practical structure can encourage bonding and sharing between griefstricken family members and the dying child. Even in the face of such a painful loss, there can also be joy. Excerpt from the upcoming Project Compassion publication Finding Your Voice: A Patient Advocacy Workbook. www.project-compassion. org and www.sickgirlspeaks.com.

Is Palliative Care PC?, continued from page 21

also come into play as potential obstacles. Plus, as Dr. Frankel states, We need to put our money where our mouth is. Reimbursement for palliative care is essential. Public and private payers need to agree that concurrent curative and palliative therapies are important, especially when the patient is a child. And we need civic leaders to address this issue responsibly and not summon irrational behavior by referring to palliative meetings as death panels.

diagnosis. Most of pediatric palliative care is finding out what families really want. Our job is to bring the focus back to the patient. We pass doorway after doorway in our trek through the cardiac unit. Each is different. Some rooms are elaborately appointed, with brightly colored pictures adorning the walls and a zoos worth of furry toys tucked into corners. Others are barren. Yet no matter the dcor, little heads peak from beneath blankets, hospital rails glisten and a chorus of sound tells me that hearts are

People need to understand that palliative care is not giving up it is giving appropriate care.

The future of pediatric palliative care is uncertain, but inroads are being made to ensure the longterm efficacy of this compassionate approach. Medical schools need to train our next generation of clinicians in palliative care, offers Dr. Frankel. We need the clergy to address this issue. And we need demonstration programs to show how helpful palliative care can be. People need to understand that palliative care is not giving up, it is giving appropriate care. A noncurative approach to a patient, especially when the patient is a child struggling against extreme circumstances, should be initiated as part of a comprehensive plan of care. In this way, a family will receive support with decision making regarding their childs care from the point of

still beating. I cant help asking, Dr. Frankel, dont you ever get tired? Dr. Frankel stops in front of the elevator. His brow furrows. Ive learned to compartmentalize, he says. I play golf, spend time with my family and friends. It didnt used to be that way though. So what is your vision for the future? I ask. Dr. Frankel replies. I see palliative care becoming a mainstream integral component of medicine that embraces healing even when there is no cure. Dr. Lorry Frankel, Emeritus Chief of Critical Care Services, Lucile Packard Childrens Hospital based in Palo Alto California. He is also a Board Member of the Childrens Hospice and Palliative Care Coalition.

Bridge People: References from page 19

References:

mendations, by Elaine C. Meyer, PHD, RN, Marilyn D. Ritholz, PhD, Jeffrey P. Burns, MD, MPH, Robert D. Truog, Pediatrics, Volume 117, pages 649 to 657. For Parents on NICU, Trama May Last, by Laurie Tarken, The New York Times, August 24, 2009.

Improving the Quality of End-of-Life Care in the Pediatric Intensive Care Unit: Parents Priorities and Recom-

inspired philanthropy
Everybody can be great because anybody can serveYou only need a heart full of grace. A soul generated by love. And you can be that servant.
Martin Luther King, Jr.

Champions for Children

love notes

Moriah the Miracle

Victoria and Justin Nelson approach life as a team, with strong faith and a deep sense that love is above all, most important. They have great respect for doctors and the medical community. We are going to listen to the doctors, Justin shares. We know doctors dont want to see their patients fail and we take what they say very seriously. At the same time, we have learned that they cant always predict what is going to happen. Like all of us, they are doing the best they can. They are making an educated guess. From Justin and Victorias perspective, Moriahs life is miraculous. She has disproved one dire medical prediction after the next. Many people have talked with us about quality of life versus quantity of life, says Victoria. One nurse shared that she had her doubts, but once she got to know Moriah, she said, I see that she is such a special little girl, the happiest little girl. She is just thriving. Moriahs ventilator requires she live at the Childrens Recovery Center. Justin and Victoria are hoping for another miracle. Maybe as her lungs grow, she can be weaned off the ventilator, Justin offers. None of us know when our final day will come. She is so joyful, loving, strong, and determined. She is showing us how we are supposed to live. You can read more about Moriah and her family at www.momentswithmoriah. blogspot.com

There are forces of nature that are quite unstoppable and CHPCCs all-volunteer Champions for Children philanthropic auxiliary qualifies. In the fall of 2008, an enthusiastic group of Santa Cruzians banded together to facilitate the first annual Come Fly With Me fashion show and fundraiser on behalf of CHPCC. Committed to the cause of alleviating the suffering of families facing a childs life-threatening illness, Champions donate their time and expertise to support a myriad of fundraising events and to provide administrative assistance to the organization.

As Champion Emily Bernard shares, I think it is a wonderful group that comes together for a tremendous cause that is so sad, but also so amazingly hopeful. Its a very honest and sincere way to serve young children in need. Champions embody the essence of grace under pressure. We honor CHPCCs Champions for Children and are humbled by the generosity and contribution of each individual member. Go to www.childrenshospice.org/we-arechampions-for-children/ for more information.

Johnnys angels: depp Fans for Charity

Since 2007, Johnnys Angels: Depp Fans for Charity have been working to raise awareness about the needs of seriously ill children and their families internationally. Founded as a private entity offering Johnny Depps fans with a meaningful opportunity to honor the actors lifestyle and humanitarian commitments, the Angels have evolved into a motivated philanthropic organization promoting palliative and end-of-life care for children. Our vision is to raise funds for Childrens Hospice and Palliative Care Coalition, says Christine DiRienzo, one of the Angels founders. We believe that no family should ever have to care for a dying child without support. The Angels facilitate fundraising campaigns and online auctions touting Depp memorabilia, and encourage Depps fans to create their own fundraisers under a Think Globally, Act Locally philosophy. We love the Angels. Find out about Johnnys Angels current activities at www.johnnysangels.org

special acknowledgement to:

eBay Mission Fish for enlisting a global community of shoppers to support CHPCCs efforts on behalf of those too little or too sick to speak for themselves. Micheal Bethke of the Rotary Club of Santa Cruz and his wife, Deborah

Sweeney whose creative genius and big hearts led to the Raising Hope by Raising a House campaign. The Watsonville Association of Realtors because of their unwavering commitment to hosting successful events that support compassionate care for children.

Join the list of CHPCCs inspired philanthropists today!

hope 2010 35

Childrens Hospice and Palliative Care Coalition

Honored Contributors
Tim & Jody Akimoto Vincent Altman Annieglass Jennifer Antrim Jane & Carlos Arcangeli Margaret Arcangeli Arcata Elementary School Anne Bette Archer April & Chris Arisian Ashby Confections Azure Skin Care Donna Badawi-Sim Ballan Tuck, DDS Bay Federal Credit Union Erica Berg Emily Bernard Bernard McGraw, DDS Bruce Berwald Michael Bethke & Deborah Sweeney Patrick Bethke Nora Bianchi & Marty Hobbs Judy Boemer Chip Bogaard Ed Bogner Frances & Michael Bolzon Harold & Nancy Boschetto Boulder Creek Flowers Peter Boyce Chandra Brantley Jane & Suzanne Brooks Paola Bruni & Kip Allert Hilary Bryant Ellen Buckingham Linda Bukowski Kristin Burr Burrell School Vineyards Pamela & Corey Butler Joseph & Rosemary Butterworth Buttonz Jewelry Marilyn & Drew Calciano Calif Credit Union League, Monterey Chapter Californias Great America Bruce Canepa Capitola Book Caf Patrick & Carla Carstens Cartwright, Scruggs, Fulton, Walther Sharmanie Cheleden Angela & Robert Chesnut Amanda Chizek Keith & Karen Chreston William Christie DDS Cinnamon Bay Clothing Cleverquill Elizabeth Clifton Coastside Concierge Community Printers Congregational Church of Soquel Michael & Karen Conley Cooper Technologies, Inc James Corbeau Jan & Gene Corriden Cassandra Cotton Anthony & Lisa Crane Sky Crawford Creative Design & Upholstery Faye Crosby Katie Daly Dancy Daria Daniels Silasi Darco Robert Deacon Debutante Clothing Boutique DeCorte Creative Silver Delisch Dell Williams Jewelers Deluxe Foods of Aptos Julia Dempsey Dermatology Surgical & Medical Group Bonnie & Tony DeVarco Diane Davis Interiors Christine DiRienzo Disneyland Dominican Hospital Susan Samuels Drake Garance Drosehn Kim Drury Art Durand Chris & Yolanda Dybdahl Energetix Outdoor Fitness Harland & Johanna Epps Robert & Susan Evlan Richard & Justin Faggioli Fionna Floral Fish Lady Amie Forest Freedom Bakery & Confections Freedom Rotary Lorry Frankel, MD Sarah Friebert, MD Fusion Salon Galla Cabana Virginia & Tim Ganley Gateway School Geringer, Luck & Rode, LLC Cori & Matthew Gerlach Melissa Gilbert Giro Sport Design Diane & Michael Glazer & Family Diane Ross Glazer, PhD Global Impact Dora Gonzalez Good Search Good Times Granite Construction Roy Granovski Graphix Gallery & Framing Gravago Gallery Dianne Gray Diane Grunes

Kathleen Haile Ethel Harder Harrahs/Harveys Ann & Thomas Harris Jr Gregory Harrison Christine Hatch Jane & Will Henry Ann & Robert Hestand Jane & Robbie Hiatt-Pearl Terri Cowger Hill Hilton Santa Cruz/Scotts Valley Chris Hodgson John Hope Hopscotch Jocelyn & David Hoy Hulas Island Grill Il Motorino In Vino Veritas Hollye & Jeffrey Jacobs Roger J. Janow Financial Planning Ellen Jervis Heysa Jensen John Kaemmerling Photography Johnnys Angels Judi Wyant Antiques K9 Clinic Nadine Kadekian Kaenon Polarized Kaleidoscope Tom Kane Charlene Kannely Kates Kitchen Garden Kathryn Kennedy Winery Virginia & Marcus Kaufman Diana & John Keith Marjorie Kidwell & Lyle Dewitt Sally Kiff Kitty McNeil Designs Astrid Kohl Richard Kuhl Brooks Lambert Laser Hair & Skin Solutions LAtelier Salon Gerri LeCrone Legends Theatrical Karen Loeffler Anne Lindberg Little Ruler Liz dePuydt Celia Lopez Anna & Paul Lui Mary & Ron Magee Marinis Matt Steinmetz Electric Charlotte Matusik Penelope & Bruce McQuire Charlotte & Jay Meisel David Mello Jenifer Meltzer Gini Mesiti-Miller Metro Santa Cruz Michael & Marisa, LLC Judy Miller Monrovia Nursery Monterey Bay Classic

T-Bird Club Monterey Bay Properties Gail Moore John Morrison Jill Mueller Musical Me, Inc/ Music Together Cindy Myhra Mystery Spot Nagamine Nursery Neatly Organized Newmans Own Organics NHS Sherry Nicholson Amrik Nijor John Noble Patricia Noel Nubius Organics Michael OHearn Tim OKelly ONeill Surf Shop Eileen Ormsby Gail Ortiz Oswald Restaurant Ow Properties Pacific Gallery & Custom Framing Marie Padilla Barbara Padseresht Louis Paratore Pasatiempo Golf Club Denise Peacock Tammy Pendleton Photoflex Products, Inc Scott Pinheiro Elizabeth & David Price Elizabeth Prieto Carl Primavera DDS Carolee Prince Printworx Paula and Robert Quinn Receivable Management Reed & Graham Tess Reynolds Lief Rideout Nanette Riendeau Susan & David Rose Robert & Cathie Ross Richard & Robyn Ross Rotary Club of Santa Cruz Rotary Club of Santa Cruz Sunrise David & Ellen Rothenberg Rouge Rouge Nancy Rubin San Jose Giants Santa Cruz Beach Boardwalk/Seaside Co Santa Cruz DJ Santa Cruz Medical Foundation Santa Cruz Pet Resort Sarahs Vineyard D Lynn Scally Jennifer Scarbrough Edith Schneider Elizabeth Schoyer Norman Schwartz

SCMS-Wavecrest Junior High School Mary Scoppettone G Dana Scruggs III Cynthia & Ronald Sekkel Seraphina Sessions Seven Directions Art Institute Kevin Shih Shoe Fetish Hilary Shuman Sid Slatter Kerry Smith Christopher Smith Soif/La Posta Soquel High School Key Club Spa Fitness Manny & Sarah Steffen Sandy Chen Stokes Susan Gallery Sweet Asylum George Tabet Afshin Taghechian Mark Taliento Talmadge Construction The Studio Kimberly Thomas Julie Ulmer & Steve Alves Juan Valledor & Laurie Negro Vida Vine Hill Winery Vinocruz Volunteer Center of Santa Cruz County, Human Race Sarah Walls Terri Warren Watsonville Association of Realtors Jack Western Tanya Westervelt Westside Animal Hospital Beth & Michael Whiting Lela Willet Susan Willig Jon Winston Jill Winston Joe & Janis Wuelfing Yellow Brick Road Benefit Shop Yvonne Karyn J. Zervalis Zinnias Due to space restrictions, we are only able to list major donors for the 2008/2009 fiscal year. We have made every effort to ensure the accuracy of this list; however, if there are any errors or omissions, please call us at (831) 763-3070 with any correction.

36 hope 2010

foundation partners

Visionary Investors
Childrens Hospice and Palliative Care Coalition is deeply fortunate to have foundation partners who support the vision of compassionate healthcare for children and their families. We humbly acknowledge their financial contribution to our work during the 2008/2009 year and extend our most profound gratitude. California HealthCare Foundation The Gary and Linda Bergthold Donor Advised Fund at the Community Foundation of Santa Cruz County The Eckhardt Chandler Fund at the Community Foundation of Santa Cruz County The Driscolls Charitable Fund at the Community Foundation of Santa Cruz County The Rocky and Judy Franich Fund at the Community Foundation of Santa Cruz County The Robert N. and Florence Slinger Fund at the Community Foundation of Santa Cruz County Doolittle Fund of the Community Foundation for Monterey County Conrad N. Hilton Foundation Harden Foundation Hospice Foundation The J.M. Long Foundation Lucile Packard Foundation for Childrens Health The Markie Foundation at the National Heritage Foundation Monterey Peninsula Foundation, host of the AT&T Pro-Am Michael T. Riordan Family Foundation Salinas Valley Memorial Hospital Foundation (Childrens Miracle Network) Sigma Alpha of Omega Nu Santa Cruz Union Pacific Foundation SALUTE TO CHPCC ORGANIzATIONAL MEMBERS City of Hope National Medical Center Hospice of the East Bay Hospice of Santa Cruz County Hospice of the Valley Lucile Packard Childrens Hospital TrinityCare Hospice TrinityKids Care

Moment by Moment
Laughter lingering in a gleaming eye. A mischievous smile. The bond that is palpable between a child and his or her family. These are some of the things that Moment by Moment captures for seriously ill children and their families in California. Founded in 2005, Moment by Moment is a nonprofit organization with an all-volunteer staff of 250 professional photographers that is connected to every childrens hospital in the state and provides portraits to over 50 families each month. The spirit of a child does not hide in their illness, says Executive Director Karen Henrich. This is a guiding principle of the organizations volunteers as they photograph the determination, love, and connection of each family. Moment by Moments photographers volunteer their time to shoot and produce portraits, which are completely free of charge to the family. Henrich, who personally builds and maintains relationships with each hospital, volunteers her time as well. Donations are used for the direct costs associated with photo sessions, producing prints and CDs of the images, and delivering the portraits to families. Tax-deductible donations to Moment by Moment can be mailed to 1499 Sunnybrook Road, Alamo, CA 94507 or made online at http://www.momentbymoment.org.

In Focus

hope 2010 37

Help us give voice to those too little or too sick to speak for themselves. support Childrens Hospice and Palliative Care Coalition.

Hundreds of thousands of children struggle every day with chronic life-threatening illnesses. They are not strangers. They are our children, our nieces and nephews, our friends and neighbors. And they need our help to speak out for them and with themto demand that our healthcare system rise to meet their needs. Please give generously to Childrens Hospice and Palliative Care Coalition today and count yourself among the voices that are making a difference. Give HOPE! Childrens Hospice and Palliative Care Coalition is a 501(c)3 nonprofit organization. Contributions are tax deductible.
65 Nielson Street, Suite 108 Watsonville, CA 95076 831.763.3070

www.ChildrensHospice.org