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Service Delivery Innovation Profile

Pediatric Palliative Care Program Improves Communication, Reduces Patient Suffering, and Helps Parents Feel More Prepared for Child's End-of-Life Experience


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Snapshot

Summary

The Pediatric Advanced Care Team (PACT), a joint project of the Dana-Farber Cancer Institute and Children’s Hospital Boston, is a pediatric palliative care consultation service that addresses the physical, psychosocial, and spiritual needs of children with life-threatening illnesses and their families. PACT services focus on providing intensive symptom management as well as honest, complete, and sensitive communication with patients and families; other PACT activities include clinician education about, and development of institutional improvements in, palliative care. A retrospective cohort study found that PACT improved communication and documentation related to end-of-life care, helped ease patient suffering at the end of life, and helped parents feel more prepared for their child’s end-of-life experience.

Evidence Rating (What is this?)

Moderate: The evidence consists of before-and-after comparisons of key outcomes, including levels of communication and documentation, parental perceptions of their child's suffering, and parental preparation for their child's end-of-life experience.
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Developing Organizations

Children's Hospital Boston; Dana-Farber Cancer Institute
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Date First Implemented

1997
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Patient Population

Vulnerable Populations > Children; Terminally illend pp

Problem Addressed

Although adult patient populations have benefited from recent advances in pain management and palliative care, significant opportunities exist to improve palliative care for children.
  • Significant need for pediatric palliative care: More than 300,000 U.S. children are living with potentially fatal conditions and could benefit from palliative care; approximately 55,000 children die annually.1
  • Inadequate pediatric palliative care: Studies have found that children dying of cancer suffer from substantial pain, fatigue, and anxiety at the end of life and often die in an institution (despite preferring to be at home); in addition, communication with parents about the dying child's prognosis is often inadequate.2,3

What They Did

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Description of the Innovative Activity

The Pediatric Advanced Care Team (PACT) is a pediatric palliative care consultation service operated as part of Dana-Farber Cancer Institute and Children’s Hospital Boston. Key activities of the PACT service include providing clinical consultations, offering palliative care education to clinicians, and prompting system-wide improvements in pediatric care. Key elements of the program are described below:
  • Clinical consultations: The PACT team (including a physician, a pediatric nurse practitioner, and a social worker) provides clinical consultations to medical team members and to patients/families.
    • Referrals: A PACT consult may be requested by a member of the patient’s health care team or by the patient/family. The PACT consult team typically includes a physician, nurse, and social worker.
    • Information gathering and PACT team meeting: The consult team obtains relevant clinical, psychosocial, and other information from both inpatient and outpatient team members and from the patient’s medical record. The consult team meets to assess the patient’s clinical situation and discuss the needs of both the patient and family.
    • PACT consultations with parents: PACT team members introduce themselves to the family and set up an appointment for an initial consult. The content of the initial consult is flexible and may be stretched across several meetings depending on how fatigued the family is and PACT team judgment about whether information needs to be provided over a period of time rather than all at once. During the initial consult, team members describe available palliative care services to the family, and the family is asked to describe the child to the PACT team, including what he or she was like before getting sick. The goal of this exchange is to allow the team to see the child as a person rather than a patient. PACT team members ask parents about their hopes and worries and what factors are most important to them in the care of their child. They also inquire about how the child is feeling, including what symptoms are particularly bothersome. Other potential topics addressed during the initial or subsequent PACT consults with parents include:
      • Establishing or reviewing care goals
      • Ensuring parental understanding of the child’s illness
      • Facilitating decisionmaking regarding quality of life
      • Exploring the family’s access to and use of home-based and community support services
      • Determining the family’s spiritual needs
      • Determining whether the family is open to complimentary care options
    • Meetings with the child: Depending on the child's age and developmental stage, the team may meet with the child to discuss his or her hopes and worries, bothersome symptoms, and desires regarding care. PACT team members also perform a physical assessment of the child.
    • Communication and other activities with the care team: The PACT team engages in written and inperson communication with the care team and helps to facilitate care team discussions and access to needed services.
      • Written communication: PACT team members create a brief written summary of the initial consult. The first section outlines the primary goals of palliative care as discussed with the family (typically a mix of life-extending goals and ensuring comfort) and subsequent sections review symptoms and recommendations for symptom management and social support. The PACT team first reviews the document with the family to ensure that it accurately reflects the family's goals; the summary is then distributed to the health care team and included in Dana-Farber Cancer Institute/Children’s Hospital Boston’s electronic medical record. Whenever a subsequent visit occurs, a note is generated and distributed in a similar fashion.
      • Inperson communication: Face-to-face meetings with the clinical team may or may not occur, depending on individual patient needs and logistical barriers. When PACT team members perceive that a family is facing communication challenges with the health care team or is receiving mixed messages from different clinical team members, PACT may recommend and coordinate a meeting with the clinical team.
      • Other PACT activities: PACT team members work with caregivers to facilitate health care team discussions regarding treatment options, assessment and management of symptoms, home care/hospice services, and transition to end-of-life care.
    • Flexible followup service delivery, in the hospital and at home: The frequency of PACT consults depends on patient and family needs. PACT team members visit with inpatients an average of three to four times weekly. Visits with outpatients occur at the hospital on days when patients have other scheduled care. PACT team members also make home visits for consultation, assessment, or bereavement followup; at least one initial home visit is scheduled to ensure continuity of care, but children who are very ill might receive more regular visits. Teleconferencing with the home health team or parents is also used when necessary. A PACT team member can be accessed by the hospital operator 24 hours a day.
  • Education and training: PACT team members provide ongoing education and training to practitioners in hospital and community settings on palliative care, symptom management, bereavement programs, and other related topics.
    • Inhospital education: PACT conducts monthly interdisciplinary educational rounds on various topics, including adolescents making end-of-life decisions; managing depression in terminally ill children; and care of the neonate. PACT also provides discipline-specific educational sessions for physicians, nurses, and social workers from oncology, neurology, pulmonary, and cardiology.
    • External education: PACT team members serve as faculty at local medical schools. In addition, a new continuing medical education pediatric track within a larger program at Harvard Medical School has been developed to teach physicians and nurses about pediatric palliative care. PACT team members also participate in activities such as the local hospice federation's annual conference.
    • Interdisciplinary Pediatric Palliative Care Fellowship: Information provided in October 2009 indicates that PACT is committed to training the field’s future leaders and has developed the only interdisciplinary fellowship program in the country. PACT was the first pediatric palliative care program to develop a physician fellowship in 2001 and has since trained eight physicians, a majority of whom currently hold leadership positions. A social work fellowship position was added in 2005, and in 2008, PACT completed the interdisciplinary training program with the inclusion of its first nurse practitioner fellow. With this program now in place, PACT is currently fulfilling its mission of providing comprehensive training across the three key disciplines essential to providing optimal palliative care. Upon completion of the year-long fellowship, the fellows are qualified to serve as clinicians, educators, and mentors in pediatric palliative care.
  • System-wide improvements: PACT team members lead institution-wide efforts to improve pediatric palliative care. Examples include the adoption of a direct admission policy, which allows dying children to be admitted directly to the oncology ward instead of having to go through the emergency department; development of template-based orders for addressing a patient’s escalating dyspnea, pain, and agitation at end of life; the creation of the “comfort corner,” a homelike suite located on the oncology ward (this concept has been increasingly accepted by staff throughout the hospital to create a similar environment no matter where the child is); and enhanced bereavement programs.
  • Monthly meetings: The PACT team meets monthly to review cases, collaborate on initiatives, meet with community representatives, and share knowledge regarding pediatric palliative care.

Context of the Innovation

Dana-Farber Cancer Institute and Children’s Hospital Boston, which are located across the street from one another, have developed a formal relationship in which pediatric oncology patients are treated in the outpatient setting at Dana-Farber Cancer Institute and as inpatients at Children’s Hospital Boston by the same team of physicians and psychosocial clinicians; nursing teams are specific to each institution. Approximately 300 to 400 new pediatric oncology patients are seen by both institutions annually, although some are one-time second opinion consults. An estimated 250 to 300 of these patients are treated longitudinally at both institutions, and roughly 50 children die each year. The idea for PACT stemmed from research conducted by a physician (currently the PACT physician team member) during her fellowship; this research, which assessed quality of care for pediatric oncology patients at the end of life, identified a tremendous need for improvement in managing symptoms and communicating with families.

Did It Work?

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Results

A retrospective cohort study comparing parent survey and chart review data from 119 children who died after program implementation (between 1997 and 2004) to the same data from 102 children who died before implementation (between 1990 and 1997) found that PACT improved communication and documentation related to end-of-life care, helped ease patient suffering at the end of life, and helped parents feel more prepared for their child’s end-of-life experience.
  • Better and earlier communication and documentation: The program resulted in more discussions about hospice care (which was discussed in 76 percent of cases after implementation, compared with 54 percent of cases before implementation), earlier discussions about hospice care (with discussions initiated a mean of 52 days before death in cases after implementation, compared with 28 days in cases before implementation), and earlier documentation of do-not-resuscitate orders (with documentation occurring a mean of 18 days before death in post-implementation cases, compared with 12 days in pre-implementation cases).
  • Fewer deaths in intensive settings: Only 22 percent of patients died in the intensive care unit or in other hospitals after program implementation, compared with 38 percent of patients in the pre-implementation group. Thus, significantly fewer children die in the intensive care unit, and as many as 78 percent die at home or in another comfortable setting.
  • Less patient suffering: After program implementation, fewer parents reported that their child suffered from significant pain (47 vs. 66 percent), dyspnea (37 vs. 58 percent), and anxiety (39 vs. 58 percent); differences in reported fatigue were not significant.
  • Better prepared parents: After implementation of the program, a higher percentage of parents reported feeling “very prepared” for the medical problems experienced by the child during the last month of life (56 vs. 27 percent) and for the circumstances at the time of death (49 vs. 25 percent).
  • High family and provider satisfaction: Information provided in October 2009 indicates high family and provider satisfaction with the PACT program. The percentage of families rating PACT as very good or excellent was 92 percent for pain management, 91 percent for dyspnea management, 96 percent for emotional support, 97 percent for meeting family needs, 94 percent for overall communication skills, and 96 percent for help in understanding the concept of "do not resuscitate." The percentage of providers rating PACT as very or extremely valuable was 100 percent for having PACT involved with children with life-threatening illness and 82 percent for comfort corners; 89 percent of respondents said they would recommend PACT to a colleague.
  • Rapid program growth: The success outlined above has led to significant program growth. The PACT caseload grew from fewer than 20 consults in fiscal year 2000 to 83 consults in fiscal year 2005, and reached 142 new patients in fiscal year 2009. Information provided in November 2010 indicates that the program has reached 155 new patients in fiscal year 2010.

Evidence Rating (What is this?)

Moderate: The evidence consists of before-and-after comparisons of key outcomes, including levels of communication and documentation, parental perceptions of their child's suffering, and parental preparation for their child's end-of-life experience.

How They Did It

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Planning and Development Process

Key steps in the planning and development process included the following:
  • PACT formation: The PACT team initially consisted of a physician, an outpatient advanced practice nurse, a psychologist, and an inpatient nurse, all of whom worked in the Dana-Farber Cancer Institute/Children’s Hospital Boston pediatric oncology program.
  • Participation in Institute for Healthcare Improvement (IHI) national collaborative: An IHI national collaborative on end-of-life care was instituted at the same time the PACT physician’s research on end-of-life care quality revealed a need for improvement at Dana-Farber Cancer Institute/Children’s Hospital Boston. Dana-Farber allowed the PACT team to attend this year-long collaborative; during weekend meetings held throughout the year, participants planned their projects and received education and mentoring. The program culminated with the team making a final presentation.
  • Development of program brochure: The PACT team developed a provider brochure to introduce the pediatric palliative care service. The brochure was later revised to soften the language and present PACT services in a more sensitive and diplomatic way.
  • Awarding of first grant: The Hasbro Children’s Foundation, which had previously funded research in pediatric oncology, was interested in funding a pediatric palliative care initiative. The foundation learned about PACT from its clinician leader and agreed to offer a 3-year grant to support the program.
  • PACT service initiation: The PACT team introduced the program through presentations to physicians, nurses, and psychosocial clinicians. The program was initially open only to children with cancer. During these presentations, the PACT team used preliminary data to highlight opportunities for improvement in palliative care and asked clinicians for the chance to work collaboratively in improving the day-to-day experience of children and families. In addition, the team began to make monthly educational rounds that were open to all Dana-Farber Cancer Institute/Children’s Hospital Boston staff.
  • Outcomes tracking: PACT began tracking the number of referrals and consults and gathered data that demonstrated improvements in palliative care. PACT team members presented the data to institutional leadership, who found the data sufficiently compelling to devote internal funds to the program.
  • Second grant awarded: The PACT team received a small, 2-year grant from the Initiative for Pediatric Palliative Care.
  • Expansion of services: Based on clinician requests, PACT expanded its services to children with nononcology diagnoses, such as those with advanced neurological conditions, or life-threatening pulmonary or cardiovascular disease.

Resources Used and Skills Needed

  • Staffing: Initially, clinician work was incorporated into regular daily duties; however, data illustrating positive outcomes led to institutional funding for the program. Information provided in October 2009 indicates that PACT is currently staffed by a core team of 1 clinical full-time equivalent physician (requires 1.8 physicians), 1 pediatric nurse practitioner, 1 social worker, and 1 administrative staff member; 1 pediatric palliative care physician fellow, 1 pediatric nurse practitioner fellow, and 1 social work fellow.
  • Costs: Information provided in October 2009 indicates that the current budget for PACT is roughly $900,000. Participating in the IHI collaborative cost $10,000.
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Funding Sources

Dana-Farber Cancer Institute; Children's Hospital Boston
Roughly 10 percent of staffing costs are recouped through reimbursement from insurers for covered services. Approximately one-half of program costs are funded internally by Dana-Farber Cancer Institute and Children’s Hospital Boston, with the remainder coming from philanthropic support.end fs

Adoption Considerations

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Getting Started with This Innovation

  • Engage institutional leadership: Help leaders understand that palliative care, although not fully reimbursable, enhances care quality as well as the reputation of the hospital. Even though leaders may not want to highlight palliative care (due to the discomfort associated with admitting that children die), patients and families coming to the institution appreciate knowing that they will be cared for throughout the course of the illness. This message can be very positive, emphasizing “caring” in addition to medical intervention.
  • Introduce palliative care in a positive way: The message about palliative care should emphasize the program's focus on communication, symptom management, quality of life, and social support.
  • Be sensitive and diplomatic: Build a collegial relationship so that, over time, clinicians can work more effectively with palliative care team members, without fearing that they are trying to assume responsibility for their patients. This approach will also build word-of-mouth referrals to the palliative care team.

Sustaining This Innovation

  • Track results on an ongoing basis and use them to build a case for continuing funding: Ongoing monitoring of results, including the number of consults and their impact on patients and family members, can lead to increased institutional commitment.
  • Provide ongoing education, which is especially important in an academic teaching environment where staff turnover is high: Reintroduce the concept of palliative care on a regular basis, and do not assume that medical and nursing staff understand what palliative care can offer. Continually look for opportunities to reeducate staff in a way that encourages conversation about these issues. For example, ongoing clinical rounds provide a forum for open communication and dialogue about the needs of children and families at the end of life—a topic that may be a new focus for the institution.
  • Provide support for palliative care staff: Because staff can become emotionally attached to patients, the risk of depression or “burnout” is high. Staff should be encouraged to strive for a healthy balance between their professional and work lives. For example, the Pediatric Advanced Care Team holds an offsite annual retreat for palliative care staff members. In addition, an annual bereavement event called the “Evening to Remember” allows staff to support each other by celebrating the lives of the children who have died during the year.

More Information

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Contact the Innovator

Joanne Wolfe, MD, MPH
Dana-Farber Cancer Institute
450 Brookline Avenue
Boston, MA 02215
(617) 632-5286
E-mail: Joanne_Wolfe@dfci.harvard.edu

Innovator Disclosures

Dr. Wolfe reported having no financial interests or business/professional affiliations relevant to the work described in this profile other than the funders listed in the Funding Sources section.

References/Related Articles

Wolfe J, Hammel JF, Edwards KE, et al. Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol. 2008;26(10):1717-23. [PubMed]

Duncan J, Spengler E, Wolfe J, et al. Providing pediatric palliative care: PACT in action. MCN Am J Matern Child Nurs. 2007;32(5):279-87. [PubMed]

Liben S, Papadatou D, Wolfe J. Paediatric palliative care: challenges and emerging ideas. Lancet. 2008;371(9615):852-64. [PubMed]

Footnotes

1 Children’s Hospital Boston. International experts cite shortcomings in pediatric pain and palliative care. August 15, 2007. Available at: http://www.childrenshospital.org/newsroom/Site1339/mainpageS1339P332.html.
2 Wolfe J, Grier HE, Klar N, et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med. 2000;342(5):326-33. [PubMed]
3 Wolfe J, Klar N, Grier HE, et al. Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care. JAMA. 2000;284(19):2469-75. [PubMed]
Comment on this Innovation

Disclaimer: The inclusion of an innovation in the Innovations Exchange does not constitute or imply an endorsement by the U.S. Department of Health and Human Services, the Agency for Healthcare Research and Quality, or Westat of the innovation or of the submitter or developer of the innovation. Read more.

Original publication: September 15, 2008.
Original publication indicates the date the profile was first posted to the Innovations Exchange.

Last updated: November 20, 2013.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.

Date verified by innovator: November 16, 2010.
Date verified by innovator indicates the most recent date the innovator provided feedback during the annual review process. The innovator is invited to review, update, and verify the profile annually.