The goal of the Pediatric Advanced Care Team (PACT) is to help children to live as well as possible for as long as possible. PACT is the pediatric palliative care consult service of Children's Hospital Boston (CHB) and Dana-Farber Cancer Institute (DFCI). When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families (Field & Behrman, 2003) states that "palliative care seeks to prevent or relieve the physical and emotional distress produced by a life-threatening medical condition or its treatment, to help patients with such conditions and their families live as normally as possible, and to provide them with timely and accurate information and support in decision-making" (p. 2). The World Health Organization (WHO, 2006) has listed the criteria that must be included in pediatric palliative care:
* Care of a child's body, mind, and spirit
* Starting at the point of diagnosis and continuing regardless of whether curative therapies are pursued
* Expertise of a multidisciplinary team along with family and community resources
For PACT, this has come to mean that we consult on children not yet born, children living with life-threatening illnesses, and children who suffer traumatic events from which they may die. The purpose of this article is to provide a descriptive account of the formation and growth of this hospital-based pediatric palliative care consult service from its inception to the present.
The Need for Pediatric Palliative Care
In 1997, the year PACT was formed, researchers introduced evidence that, according to parental reports, children who died suffer a great deal in their last month of life (Wolfe et al., 2000). This research did not indict professionals for a lack of caring but rather illuminated the difficulties and challenges in meeting the needs of young patients and families at the end of life. The death of a child may elicit such strong emotions that we are unable to speak about it, have difficulty seeing it by bearing witness, or resist hearing about ways to enhance care (Contro, Larson, Scofield, Sourkes, & Cohen, 2004). Because childhood deaths have declined dramatically over the past century, when a child death occurs in the United States, it is usually unexpected and tragic. In 2003, approximately 53,644 children aged 0 to 19 years died in the United States, with approximately 53% of those deaths occurring in infancy (Hoyert, Menacher, Strobino, & Guyer, 2006). It is clear that palliative care is necessary and may benefit thousands of children and families, ranging from the couple with a high-risk pregnancy (Sumner, Kavanaugh, & Moro, 2006) to the family in the ICU with their teen suffering devastating injury from an overdose, to the family and child who lives with a progressive debilitating illness (American Academy of Pediatrics, 2000).
How PACT Began
PACT was formed by a physician, an outpatient advanced practice nurse, a psychologist, and an inpatient nurse, all working within the combined pediatric oncology program of DFCI/CHB. Our goal was (and continues to be) to provide interdisciplinary care to children with life-threatening illnesses and conditions and their families. We wanted to enhance open communication within and between primary care team members and family members, resulting in a comprehensive unified approach to care. Research studies continue to demonstrate the importance of family communication (Kreicbergs, Valdimarsdottir, Onelov, Henter, & Steineck, 2004), and communication between the physician and patient (Mack et al., 2005; Meyer, Burns, Griffith, & Truog, 2002). Another of our goals was to provide intensive symptom management and make palliative care available any time and any place, which reflects current research that showed that children whose families had end-of-life care discussions received more opioids and sedatives, suggesting greater attention to symptom management (Tan, Totapally, Torbati, & Wolfsdorf, 2006). PACT wanted to be a program that supported concurrent treatment of the underlying disease, another fact that has been demonstrated by research showing that parents and children often have dual goals of hope for cure and hope for comfort (Hurwitz, Duncan, & Wolfe, 2004).
Our ultimate goal in forming PACT was that interdisciplinary medical, psychosocial, and spiritual support of the child and family would lead to meaningful experiences, particularly in the face of uncertainty and/or a limited lifespan. This facilitation of a unified interdisciplinary approach to care and consistency in caring was aimed at decreasing feelings of confusion, abandonment, and hopelessness (Sourkes et al., 2005). Our premise has been that the promotion of early and ongoing discussions with families would lead to greater opportunity for living well and in comfort, with a greater opportunity for a "good death" as defined uniquely by each child and family (McCallum, Byrne, & Bruera, 2000).
Founding PACT clinicians were initially supported by the DFCI to participate in the Institute for Healthcare Improvement's initiative on improving end-of-life care in 1997 (Lynn et al., 2002). Of 48 institutions/programs represented in the year-long collaborative, PACT was the only pediatric team. We were charged with developing a palliative care program that would enhance end-of-life care in our institutions. After assessing the interest in palliative care in our institutions through a provider needs survey, we developed the program brochure to explain our proposed services using sensitive, nonthreatening language. Our brochure describes the program this way:
Our goals are to assist the primary health care team, families and children with advanced illness to prevent, reduce, and soothe symptoms. We support treatment of the underlying illness and at the same time strive for optimal quality of life. Through a family-centered approach, we promote healing, comfort, and making childhood experiences meaningful.
We introduced PACT at various forums for physicians, nurses, psychosocial clinicians, and other staff. We also immediately began monthly educational rounds open to all staff at CHB and DFCI. This strategy created a regular opportunity for open dialogue about palliative and end-of-life concerns in both institutions in a forum that never previously existed. One of our key strategies aimed at overcoming barriers among providers was to collaborate with existing services, such as the integrative therapies team, the pain treatment service, and the pastoral care department.
Our first oncology consults worked on a model of a team/family meeting. We brought together as many team members as possible (inpatient and outpatient providers, including community providers) for the first half hour to participate in a clinical update and discuss the perceived needs of the patient and family and any ideas or recommendations. We then invited the parents and child to join us. If the family preferred, they could designate a smaller group to talk with them. This format allowed PACT to introduce ourselves, talk about palliative care as not just end-of-life care, and assure team members of our flexible, nonthreatening philosophy. It was important to create these kinds of opportunities to be "visible" to all members of the primary oncology team.
From the beginning, PACT efforts were supported by both DFCI and CHB's physician and nursing leadership. Fortuitously in 1998, PACT was the recipient of a 3-year philanthropic grant that supported the infrastructure of the service and promoted further development of the pediatric palliative care consult service. Still, we recognized that there would be challenges to implementing a hospital-wide pediatric palliative care consult service, including (a) the emphasis on cure alone in a tertiary teaching hospital, (b) the presence of seasoned clinicians who would feel they already had experience and expertise in palliative care, (c) primary team members who might not welcome "another team" being involved in the care of "their" patient, and (d) clinicians who would feel that the patient and family "are not ready yet" to talk or think about the possibility that the child may not survive.
Broadening Our Scope
In the year 2000, the American Academy of Pediatrics set high-quality pediatric palliative care as a standard and endorsed a broadened scope of care. As stated in their position paper,
"Minimum standards of pediatric palliative care must include a mechanism to ensure a seamless transition between settings, including at least 1 consistent caregiver, the availability of expert pediatric palliative care assistance 24 hours a day, 365 days a year, and the availability of an interdisciplinary care team with sufficient expertise to address the physical, psychosocial, emotional, and spiritual needs of the child and family. At the minimum, this team will include a physician, nurse, social worker, spiritual advisor, and child life therapist." (AAP, 2000)
Consistent with this position statement, our team was considering expanding beyond the "oncology world" to offer consultation to children with any type of life-threatening illness or condition, their families, and teams. We were fortunate to receive a grant from the Initiative for Pediatric Palliative Care (Browning & Solomon, 2005; Heller & Solomon, 2005) to assist in expanding our services to children with non-oncology diagnoses. We consciously sought "champions" of palliative care in different programs and on different services throughout the hospitals. We invited these individuals to collaborate with PACT by becoming a part of the PACT committee, meeting three times per month. We also asked that they help identify patients and families who might benefit from PACT services, attend PACT educational rounds, and speak about PACT to their colleagues.
Importantly, the core team of physician, nurse, and social worker began rounding regularly on families and children who were inpatients, followed up with primary team members, and documented our recommendations in the chart. At the same time, we began billing for physician services. We were frequently asked to join clinic visits with primary providers and families, and we began offering home visits, which allowed us to further support and assess the child and family and help bridge the gap between hospital and home. We initiated regular telephone contact with families whose children were not hospitalized so that issues might be addressed early and they would continue to feel supported. We continued our outreach speaking to local and national groups.
Consequently, the consults we offer have become more flexible and may be with just the primary team for their support and assistance with strategies, with members of the primary team and family, or with just the family. Before each consult, PACT seeks medical and psychosocial information from the primary healthcare team members (inpatient and outpatient) and the medical record. We also use teleconferencing when necessary to join together providers with family members and PACT. For children in outpatient settings, we arrange to meet the family either at their home or at the hospital. PACT members make home visits approximately once a week for consultation or assessment of an established patient or sometimes for bereavement follow-up. Importantly, a PACT member is available to families or staff by telephone through the hospital page operator 24 hours a day.
A PACT consult may be requested by any member of the patient care team or by a family member. Some of the reasons for consults include:
* Facilitating discussions with the patient and/or family to establish or revisit goals of care
* Providing assistance with decision-making regarding quality-of-life concerns
* Facilitating team discussion to explore treatment options and recommendations
* Consulting on symptom assessment and management
* Acting as liaison to homecare and/or hospice
* Facilitating transition to end-of-life care at home or in a medical facility
The themes typically discussed include overall goals of care, symptom management, treatment of the underlying illness, resuscitation status, and family support. When with families, our strategy is to ask them to tell us first, while we listen, about their understanding of their child's illness and their hopes and worries (Mack & Wolfe, 2006). Box 1 contains examples of questions we find helpful for promoting communication with families and the child. This allows us to gain an immediate sense of "where they are" and allows for more intimate questions regarding physical, emotional, and spiritual support of the child and family. A written summary of the consult, including PACT's recommendations, is distributed to all members of the care team and the family if they participated in the consult. It is also sent to other team members who may not have been able to attend, such as the pediatrician, homecare nurse, or clinic staff, thereby ensuring that all providers are informed and hopefully able to provide more consistent care to the family (Figure 1).
In addition to consults, PACT offers education and training within the hospital setting and community and designs and supports research efforts into various aspects of pediatric palliative care and pioneering interventions, such as:
* A direct admission policy (to the hospital) for dying children
* Templated orders for escalating dyspnea, pain, and agitation at end of life (Houlahan, Branowicki, Mack, Dinning, & McCabe, 2006)
* Coordinating an inpatient comfort corner (hospice-like) room
* Enhancing bereavement programs for families and caregivers
* Research evaluating interventions aimed at improving quality of life for children with advanced cancer
The Present
Our outcome data are currently being analyzed. Although complete data are not available yet, we do know that oncology families are reporting being more prepared for their child's end-of-life course than previously. These families are also reporting that their children experienced less suffering (Hammel et al., 2001).
We currently have a core team that includes the founding medical director and nurse practitioner, an attending physician (intensivist), a social worker who has extensive experience with children diagnosed with neurological conditions, a physician fellow, a social work fellow, and a full-time coordinator. Both attending physicians are board certified in palliative medicine. The PACT committee also has grown to include bereaved parents, genetic counselors, a communication augmentation specialist, child life staff, clinical investigators and physicians, and nurses representing various specialties, including homecare. We continue to meet weekly to review cases, collaborate on initiatives, meet with individuals from the community, and keep updated on pediatric palliative care issues. Our monthly educational rounds also continue. Some examples of the subjects covered in the 2005-2006 educational rounds include "Adolescents Making End-of-Life Decisions: Their Reasons and Their Understanding," "Assessing and Managing Depression in the Physically Ill Child," "After the Tsunami: Healthcare Access Challenges in Indonesia," and "Care of the Terminally Ill Neonate: From Hospital to Home."
Over the years, our caseload has grown. From October 1, 2004 to October 1, 2005, we consulted on 83 new patients who ranged in age from the prenatal period to young adults. In 2005, 24 were oncology consults and 59 were non-oncology (Figure 2). Diagnoses have included chronic illnesses such as cystic fibrosis or chromosomal abnormalities, hypoplastic left heart syndrome, SMA type I, metachromatic leukodystrophy, and glioblastoma multiforme (Figure 3). We have met our patients before birth, while awaiting transplant, after relapses, and during exacerbations of potentially life-threatening events. We often meet families when there are no straightforward answers or when team members feel perplexed as to how to intervene with families, particularly regarding "the big picture." An example of one of our patients is "Quinn", whose case study is in Box 2.
Our progress is measured not only by the number of consults but also by the breadth of our interventions (Figure 4). We have consulted on some children who have never been hospitalized and have had several referrals made by parents themselves. We have been following some families for more than 3 years and some children we consider PACT "graduates" because they have survived the acute situation that led to the consult. We work closely with our integrative therapies team from CHB and DFCI, which offers massage, guided imagery, therapeutic touch, Reiki, and acupuncture. One attending physician is trained in hypnosis, and three team members are Reiki trained; we offer these interventions to our patients to decrease anxiety and increase relaxation.
In 2004, we received a grant to support a social work fellowship, and this fellow was able to do innovative expressive work with patients one on one and with several siblings. We host visiting clinicians from all over the world on a regular basis who observe from days to a month at a time. We have a comprehensive bereavement program, including mailings over 2 years and a successful parent support group. We provide bereavement visits and phone calls, often on a repeated basis. The importance of this outreach is validated repeatedly in studies (Contro et al., 2004; Macdonald et al., 2005). We also raise philanthropic funds to allow us to offer "small kindnesses" to families, such as a gift certificate to a restaurant, a special birthday outfit for a teen, flowers to cheer a mom enduring a long hospital stay with her child, a musical toy for a baby, and singing lessons for a teen.
Moving Into the Future
Our new challenges include ways to sustain and improve care with current staffing and funding. We would like to delineate opportunities for integrating palliative care at diagnosis of a life-threatening illness, recognizing that for some diseases having a palliative care specialist involved as a team member "in the beginning" may be beneficial. We also see the need for increased homecare and bereavement support for families. Finally, PACT is committed to expanding training opportunities for physician, social work, and nursing colleagues so that this comprehensive care continues. PACT strives to bring hope to families. Hope for amelioration of symptoms, hope for meaningful communication, and hope for days with optimal quality of life. Through a family-centered approach, PACT will continue to expand efforts to promote healing and comfort and make childhood experiences meaningful. Our rewards are in relationships and empowering others to maintain dignity, integrity, and wholeness throughout the lifespan.
Acknowledgments
PACT thanks the families, children, and staff who have contributed to our knowledge and understanding and have enriched our lives. We are deeply appreciative of the support from the Hasbro Foundation. We thank the principal investigator of the Initiative for Pediatric Palliative Care, Mildred Solomon, and the co-investigators for their support. We are grateful for the continued involvement and support from the physician and nursing leadership of Dana-Farber Cancer Institute and Children's Hospital, Boston.
Online
The Association for the Care of Children with Life-Threatening Diseases and their Families
http://www.act.org.uk
Association of Children's Hospices
http://www.childhospice.org.uk
Children's Hospice International
http://www.chionline.org
Children's International Project on Palliative/Hospice Services (ChIPPS) Administrative/Policy Workgroup.
http://www.nhpco.org/files/public/ChIPPSCallforChange.pdf
The Compassionate Friends
http://www.compassionatefriends.org/
The Dougy Center
http://www.dougy.org/
ELNEC Pediatric training program
http://www.aacn.nche.edu/ELNEC/ELNECPediatric.htm
Initiative for Pediatric Palliative Care
http://www.ippcweb.org/
WHO Definition of Palliative Care for Children
http://www.who.int/cancer/palliative/definition/en/
References