Bringing palliative care to pediatric patients suffering from chronic illness
Vision of Hope
Introduction to the Curriculum
The Vision of Hope curriculum was motivated by a commitment to integrate the principles of pediatric palliative care (PPC) into the care of individuals living with Sickle Cell Disease (SCD) or Duchenne Muscular Dystrophy (DMD). PPC can be described as a holistic, interdisciplinary model of care that incorporates emotional, spiritual, developmental, and physical dimensions. The Vision of Hope Project builds on the curriculum developed by the Initiative for Pediatric Palliative Care (IPPC) to help facilitate the learning of practices in providing comprehensive and integrated care for adolescents and their families.
The purpose of the curriculum is to provide institutions with evidence-based curricular materials based upon the IPPC model in order to integrate PPC concepts that will improve the quality of care for patients with SCD or DMD throughout their care continuum. The curriculum is designed to provide a training sequence of several PPC principles relevant to interdisciplinary team members. Curriculum objectives include exploring knowledge, skills, and attitudes related to patient and family care for a variety of disciplines and any level of PPC knowledge and experience.
Development of Curricula
The Vision of Hope curriculum was developed by a team of experts in pediatric SCD, DMD, palliative care, and medical education, with input from an external Advisory Board. It was originally piloted in a 2.5 day retreat-style and subsequent 60-90-minute in-service trainings at selected children’s hospitals throughout the eastern US. Throughout this process, the curriculum has been modified based on feedback from these trainings. The development of the curriculum took place from January 2010 – January 2011 and included the following steps:
- Establishment of an Advisory Board to guide the development of the curriculum plan.
- Participants included professionals from medical institutions and advocacy groups in SCD and DMD, IPPC Curriculum development experts, and adults living with SCD and DMD.
- Definition of goals and scope for the curriculum
- Development of an instructional design for the curriculum that included general and interdisciplinary-specific breadth of components
- Development of general and specific learning objectives based on IPPC, PPC standards and the identified sequence/depth of instruction intended to achieve the learning objectives
- Assembly of the Curriculum
- Review of the draft curriculum with staff and Advisory Board
- Pilot parts of curriculum with interdisciplinary trainings at home institution
- Revise curriculum for both 2.5 day retreat and 60-90 minute in-service
It is the intention of the Vision of Hope faculty and staff and Advisory Board to structure the curriculum so that it is flexible and includes a broad coverage of various interdisciplinary aspects of SCD or DMD and PPC. This approach should provide institutions the opportunity to make the most appropriate use of all of the instructional resources that are available to them. These materials can be used individually or in training sessions for interdisciplinary health care professionals across multiple units who care for children, adolescents, and young adults with SCD or DMD.
The curriculum is presented as separate modules that consist of learning objectives, sample agendas, PowerPoint presentations, film segments, discussion questions, interactive activities, resource lists, and evaluation tools. The materials can be adapted to the needs of individuals and training session participants, to your time frame, and to your training format. The materials can be used in their entirety or individual elements can be selected, modified, and used as needed. You may wish to review resource materials listed for each topic for additional background to help you prepare for delivering training sessions or designing individual sessions. In general, an interactive small group format is most effective for learning about these topics. However, these materials may also be used in a didactic, large group setting.
Three Different Formats
We propose 3 different formats for training—in-service, workshop or 2 ½-day retreat – that can be adapted to the goals and schedules of the participating institutions. For example, the in-service format is meant to align with grand rounds, noon seminars or other standard formats for training, and delivered in 60-90 minute formats. Similarly, the workshop can be delivered in either a 4-hour or 8-hour format. An institution may want to bring together members of the inpatient services with clinic and allied health professionals or they may choose to bring together clinicians from other institutions in regional format particularly for the longer workshop or 2 ½ day retreat model.
Overview of Modules
The Vision of Hope curricula are each divided into modules which each include learning objectives, a short, documentary film or a PowerPoint presentation, suggested handouts, and related resources for additional information. The films provided are intended to be used as “triggers” to elicit reflection and discussion during the training session. The films can be used as a stand-alone training tool by providing introductory comments and guiding discussion at the end, or you may also include PowerPoint presentations, lecture, and interactive activities depending upon your preference and time allowed. The concepts portrayed in the films are intended to elicit new thinking and responses from the audience in order to better understand patients and families and to consider personal knowledge, skills, and abilities and those of the team as a whole in response to the issues raised. The concepts are not meant to establish a standard of care or to suggest that the experiences of the patients and families in the films reflect the desired model for care.
The structure of a given module might look similar to the following:
Show Film 1: Many Faces of Hope
Application to Self and Home Institution
Time estimates are provided at the beginning of each module in the Facilitator’s Guides.
Below are the modules for the DMD and SCD curricula.
1 – Introduction to Pediatric Palliative Care – This section is intended as an overall introduction to the training and can be used in conjunction with any of the modules. It provides a brief overview of pediatric palliative care and how it relates to DMD.
2 – Overview of Duchenne Muscular Dystrophy – Use this module to gain a broad understanding of DMD before beginning the Vision of Hope: Duchenne Muscular Dystrophy curriculum.
3 – Many Faces of Hope – This module explores the different types of hope experienced by patients, physicians, and family members. Participants will brainstorm creative methods of encouraging hope in their practice.
4 – Paradox of Promise – Use this short appendix module to supplement the “Many Faces of Hope” module. Paradox of Promise explores the effects of the promise of a cure alongside various types of hope experienced by all those affected by DMD.
5 – Listen to Me – “Listen to Me” examines the important complexities of communication among patients, doctors, and family members affected by DMD, including the role of adolescent decision-making, the limitations of informed consent, and the boundaries of parental and clinician authority.
6 – Unexamined Distress – Use this module to investigate the forms of distress encountered in patients with DMD – both those that are frequently addressed and those that are often ignored.
7 – Ethical Challenges in Duchenne Muscular Dystrophy – This module explores the ethical dilemmas faced by professionals from different disciplines who care for children and adolescents with DMD.
8 – Transitions – “Transitions” provides a glimpse into the difficulties presented by the complex transition between childhood and adulthood for adolescents with DMD.
9 – An Uncertain Future – This module raises the challenges associated with acknowledging and discussing death with children and their families, one of the toughest responsibilities of clinicians caring for adolescents with DMD.
10 – Ethical Landscape/Decision-Making Tool – This module surfaces the complexity of sharing the moral burden of decision making with patients and parents in the palliative care setting, and offers a tool for assisting in this process.
11 – On the Edge – This module explores the lived experience of a life-threatening event for an adolescent, his family and his clinicians. The challenges of uncertainty, disease progression and perspective-taking during and after a 7-week stay in the pediatric intensive care unit are highlighted.
12 – Moral Angst: The Heartache of Healers – This module is designed to explore the internal responses (moral, emotional and spiritual) of clinicians who care for children with DMD as they confront intense suffering and moral angst. Often unrecognized, these responses have a profound impact on the clinicians themselves, their interactions with patients, families and their colleagues.
1 – Introduction to Pediatric Palliative Care – This section is intended as an overall introduction to the training and can be used in conjunction with any of the modules. It provides a brief overview of pediatric palliative care and how it relates to Sickle Cell Disease (SCD).
2 – Overview of Sickle Cell Disease – Use this module to gain a broad understanding of SCD before beginning the Vision of Hope: Sickle Cell Disease curriculum.
3 – One Day at a Time – This module encourages participants to think about the variations of hope that may be experienced by patients, doctors, and families living with SCD. It also focuses on quality of life and the uncertainty of living with day-to-day living with the disease.
4 – Respect and Patient Centeredness – “Respect and Patient-Centeredness” is a short module that focuses on integrating respect and patient-centeredness as core elements of the doctor-patient relationship.
5 – They Don’t Believe Me – This module highlights the importance of utilizing effective listening and communication with patients with SCD.
6 – Trust – “Trust” focuses on the trust between patients, doctors, and family members. Participants will identify various challenges to maintain trust and explore how to use palliative care to encourage building trust.
7 – Ethical Landscape/Decision-Making Tool – This module surfaces the complexity of sharing the moral burden of decision making with patients and parents in the palliative care setting.
8 – Integration of Palliative Care – This module explores ways to apply and integrate palliative care into the care of adolescents with SCD.
9 – Navigating the Hard Times – “Navigating the Hard Times” focuses on identification of sources of pain, suffering, and resilience in patients, caregivers, and family members affected by SCD.
10 – Transitions – This module discusses the difficulties presented by the complex transition between pediatric and adult care for adolescents with SCD.
11 – Moral Angst: The Heartache of Healers – This module is designed to explore the internal responses (moral, emotional and spiritual) of clinicians who care for children with SCD as they confront intense suffering and moral angst. Often unrecognized, these responses have a profound impact on the clinicians themselves, their interactions with patients, families and their colleagues.
IPPC is a project of the Education Development Center, Inc. (EDC), a global nonprofit organization that designs, delivers and evaluates pioneering programs aimed at addressing many of the world’s most urgent challenges in education, health, and economic opportunity.