Bridges Pediatric Palliative Care Rotation
Pediatric Palliative Care is a uniquely interdisciplinary field that strives to provide an added layer of support to children with serious medical conditions (life-limiting or life-changing) and their families. This work happens across the life-spectrum, including - though by no means exclusively - at the end-of-life.
Rotation Director:
Sara Taub
Email: taub@ohsu.edu
Office: 503-494-6187
Pager: #15339
Bridges Contact Information
Bridges Phone: 503-494-6201 (if you leave a voicemail, a page will be sent to the Bridges pager)
Bridges Group:
Bob Macauley, Physician and Bridges Medical Director
Anat LeBlanc, Chaplain
Lindsay Wooster, Social Worker
Julia “Julie” Nelson, Administrative Coordinator
Monica Holland, Nurse Practitioner
Sara Taub, Physician
Tyler Tate, Physician
Expectations:
Broad Overview
Our expectation is that you will use your time with our group to deepen your understand of pediatric palliative care and begin building primary pediatric palliative care foundations (the knowledge and skills that any pediatrician should have). Please come with an open mind and ready to learn in an environment that may feel paced very differently than you regular day to day responsibilities.
Because we meet families at a sensitive time in their lives and because our work is pretty specialized, we will not expect most learners to take the lead in facilitating new consultations. You may find that as you become more familiar with the patients on our census, you are ready to facilitate follow up visits, which we can plan in advance. With that said, you need not be silent; we welcome your voice. In fact, we do expect you to participate actively when we debrief conversations – and will often turn to you first for your impressions and insights.
Some areas where you can help support the group:
- Once you are familiar with the team’s census, please read up on overnight events for our patient, which you can help contribute to handoff;
- Please read up on patients in advance of new consultations
- Please feel free to help with notes, particularly on days that are busy and if you think there is good learning to be had in the process.
- Use down time during the day to do rotation focused independent learning (more on resources below)
- If you have specific goals for this rotation, interests, or needs, please be proactive about letting us know.
Given the intimacy of the conversations families let us in on, we try to limit the number of group members who attend patient visits. We may ask you to sit out certain patient encounters, particularly if there are several learners on service at the same time. This is not meant to be a slight. Rather, it is an attempt to stage the environment so that families will be as comfortable as possible. We will make sure that we debrief these conversations afterwards to bring to light any important learning points.
Housekeeping
Prior to the rotation:
You will receive an email from Julie Nelson welcoming you to the rotation with
- Some general information about where/when to arrive on your first day
- contact information for your lead, the Bridges Group member who will shepherd you through the rotation,
- a pretest to help assess your knowledge level surrounding pain and symptom management. We ask that you take the pretest in advance of starting the rotation. How you perform on it will help us tailor our teaching, though have no bearing on your evaluation for this rotation.
During the rotation:
- You still should be able to attend your programmatic scheduled didactics most days, if not all. Help us help you get there on time.
- You will be assigned a rotation lead who will proactively guide you through portions of the rotation, as well as process some of your experiences with you, above and beyond what might occur at the group level.
- Expect to be involved in rotation activities from roughly 9am to 5pm on weekdays only.
- The majority of your time will be spent with the Bridges Group, participating in daily handoff, seeing patients for new consults and follow up visits with other members of Bridges, attending pertinent care conferences and work group meetings.
- If COVID-era restrictions can be lifted, you will have at least one off site experience (touring the Dougy Center – the National Center for Grieving Children and Families). Our hope is to introduce an experience traveling with a hospice nurse for a half day to patients’ homes. We occasionally have the privilege to visit our patients in their homes as well.
- You will be asked to complete some didactic sessions with members of the Bridges Group, as well as some self-directed learning, including required and optional readings (see didactics and reading sections below), as well as online modules.
- You may be asked to facilitate one morning report using a case from your time with the SCAN team or the Bridges Program.
- You will be invited to participate in a writing exercise around one of your patient experiences.
Following the rotation:
- We will invite your participation in an exit interview about your experience.
- We will expect your formal feedback on MedHub and in any other ways you would like to give us your input.
Absences: This is a short opportunity with an important and ambitious agenda; as such we really hope there will be no need for you to absent yourself over the course of it. Any planned absences will need to be approved in advance by the residency leadership. For unanticipated absences, we ask that you contact the rotation director to be excused and that you leave a voicemail on the Bridges number.
Goals and Objectives
Goals and objectives have been divided up into 5 main areas that flow out of our work in hospice and palliative care, including Communication with Families; Pain and Symptom Management; Hospice; Death and Dying; Resilience.
Hospice and Palliative Care
*Differentiate hospice and palliative care.
*Value the interdisciplinary team approach around which the field of hospice and palliative medicine is built.
*Support taking into consideration the values/preferences of patients and families as part of medical decision making.
*Practice introducing the Bridges Pediatric Palliative Care Program to patients’ families.
*Examine some of the ethical issues that are inherent to this field.
Communication with Families
*Develop necessary skills to facilitate conversations around:
- Goals of care
- Portable Orders for Life-Sustaining Treatment (POLST) forms
- Code status
*Become familiar with appropriate resources (like “My Wishes” or “Voicing My Choices”) to help teenage patients explore and share their wishes at the end of life.
*Learn effective strategies to deliver difficult news.
Pain and Symptom Management
*List commonly occurring symptoms at the end of life.
*Propose interventions for managing these symptoms relying on medications commonly available in the “hospice comfort kit” and integrative therapies.
*Assess a patient’s pain and propose a stepwise, multi-modal approach to its management
Hospice
*Describe the scope of services from which patients and their families can benefit under the auspices of hospice.
*Identify criteria that would make a child an appropriate candidate for hospice care.
*Recognize the implications for children and their families of concurrent care in terms of being able to enroll in hospice care while continuing to receive disease directed therapy.
Death and Dying
*Recognize a child’s anticipated understanding of death and response to grief based on their developmental stage.
*Identify the diversity of cultural traditions and rituals surrounding death and dying.
*Support children and their families in memory making/legacy work.
Resilience
*Formulate a plan for self-care as a component of finding meaning in emotionally demanding health care experiences and avoiding burnout.
*Assess sources of strength in the life of patients and their families, including spirituality and religion.
*Propose adaptive strategies to empower children with serious illnesses and their families in periods of crisis and loss.
Calendar
In addition to our handoff, which takes place every morning, there are some recurring meetings that you can plan to attend with us during your rotation insofar as they do not conflicts with your continuity clinic or other learning opportunities for the rotation.
Monday:
- NICU Discharge Planning Rounds from 11:30am to noon (currently on webex; previously NICU conference room behind the family waiting room)
- Bone Marrow Transplant Weekly Meeting from 1pm to ~2pm (currently on webex; previously in the PHO conference room, behind clinic)
Tuesday:
- Palliative Care Journal Club, the fourth Tuesday of the month from 12pm to 1pm, between September and June
Wednesday:
- Solid onc/Bridges work group from 10am to 11am, the first Wednesday of every month
- Fetal Therapy Conference from 12:30pm to ~2pm (currently on webex; previously Doernbecher 9th floor conference room - 09301)
Thursday:
- NICU Discharge Planning Rounds from 11:30am to noon (currently on webex; previously NICU conference room behind the family waiting room)
Friday:
- All City Palliative Care Meeting, the first Friday of every month from 8am to 9am, between September and June (rotating locations across the city) – has been on hold due to COVID-19.
EPIC
In advance of the rotation, you will be granted access to our shared Bridges patient lists (pediatric patients and fetal therapy patients) on EPIC.
Didactics
Please arrange a time with each of our team members to talk about at least one of the topics below. Topics that are considered core have been flagged with an asterisk; we ask that you complete at least 5 core didactic sessions on different topics (as you will notice some overlap).
· Lindsay
o Cultural considerations; rituals at time of death, mourning, and bereavement
o Supporting families in grief – assessing normal vs complicated grief
o Developmental considerations of death and of children’s Grief*
o Considerations for grieving siblings
o Identifying ‘red flags’ of when to involve social workers
o Counseling parents on discussing death with children*
o Legacy projects
o Pediatric Advance Directives (My Wishes, Voicing My Choices)*
· Monica:
o Concurrent care*
o Transitioning home
o Community hospice and palliative care (when, why and how for families)*
o Collaboration, education and support of community partners (how we do it)
o Nursing perspective
o Moral distress
o Working with families in the fetal therapy program/Prenatal and perinatal support
· Tyler
o Pain management:
§ Overview of opioids
§ PCAs
o Nausea management
o Pediatric Palliative care ethics
o Cognitive disability, ethics, and palliative care
o Suffering and Palliative care: what it is and why it matters
o Goals of care conversations 101
o Palliative care and narrative medicine
· Sara
o POLST form and code status discussions*
o Goals of care are dynamic: Regoaling and parallel planning
o Comfort kit - managing symptoms at the end of life*
o Disclosure and Truth telling
o Primary Palliative Care
o Shades of Hope
· Anat
o Grief and loss*
o Spiritual Care 101*
o Working with Hope
o Spiritual and cultural considerations for EOL
o Recognizing spiritual distress
o Exploring sources of strenght
· Bob
o Ethical issues*
o Pain and symptom management*
o Program development
o Career development
Readings
You will receive a BOX invitation that will give you access to most of the required and suggested readings for the rotation.
Required Readings include:
- Douglas Hill et al., “Regoaling: a conceptual model of how parents of children with serious illness change medical goals,” BMC Palliative Care 2014, 13: 9-16.
- American Academy of Pediatrics Section on Hospice and Palliative Medicine and Committee on Hospital Care, “Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations.” Pediatrics 2013; 132(5): 966-972.
- Julia Downing et al., “Pediatric pain management in palliative care,” Pain Management 2015; 5(1): 23-35.
- Elissa G Miller et al., “Concurrent care for the medically complex child: Lessons of implementation,” Journal of Palliative Medicine 2012; 15(11): 1281-1283.
One of the required readings is a short book that is a fast read. We will loan you a copy at the beginning of the rotation:
- Back, A; Arnold, R; Tulsky J (2010). Robert Arnold, James Tulsky. Mastering Communication with Seriously Ill Patients. New York, NY: Cambridge University Press.
Between all of us, we have a pretty robust library of pediatric palliative care books, so please let us know if we can assist you in identifying additional resources.
Online Modules, Curricula, and Lectures
The Children’s Hospital of Philadelphia Pediatric Advanced Care Team has developed a lecture series around pediatric palliative care that is available through CHOP Open-access Medical Education.
The Power of the Family Voice is a curriculum that relies on courageous parents to teach clinicians.
Explore the Center to Advance Palliative Care (CAPC) website, which has some great learning modules on it:
1. Go to capc.org and click Login to create your user account (using Oregon Health and Science University as your institution);
2. Then get started by taking a brief tour of CAPC Central
Some pertinent OHSU Grand Rounds:
“What We Talk About When We Talk About Code Status”, by Bob Macauley, MD, FAAHPM
“How to be a ‘Good Parent’ to My Seriously Ill Child,” by Pamela S Hinds, PhD, RN, FAAN
“Paging ALL Clinicians to Palliative Care: Partnering to Better Meet the Needs of our Pediatric Patients and their Families,” by Sara Taub, MD, MBe
Some Additional Resources
Courageous Parent Network: https://courageousparentsnetwork.org/
“A destination created by families, for families, to support, guide and strengthen them as they care for very sick children”
Palliative Care Fast Facts And Concepts: https://www.mypcnow.org/fast-facts
Pediatric Palliative Care Fast Facts And Concepts: https://www.mypcnow.org/pedfastfacts
“Fast Facts are designed to provide concise, practical, peer-reviewed, and evidence-based summaries on key palliative care topics”
Center to Advance Palliative Care: https://www.capc.org/
“The Center to Advance Palliative Care (CAPC) provides the essential tools, training, technical assistance, and metrics to build and sustain palliative care in all health care settings”
National Hospice and Palliative Care Organization: https://www.nhpco.org/
“The largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States.”
American Academy of Hospice and Palliative Medicine: http://aahpm.org/
“AAHPM is the professional organization for physicians specializing in hospice and palliative medicine, nurses, and other healthcare providers.”
Bridges Pediatric Palliative Care Rotation
Checklist of Expectations
___ Set up an initial meeting with your lead
___ Complete pain management pre-test
___ Debrief pain management pre-test
___ Obtain a copy of Mastering Communication with Seriously Ill Patients book
___ Visit Dougy Center (on hold during COVID-19)
___ Complete required readings:
- “Regoaling” article by Hill et al
- AAP statement ln “Pediatric Palliative Care and Hospice”
- “Pediatric Pain Management” article by Downing et al
- “Concurrent Care” article by Miller et al
- Mastering Communication with Seriously Ill Patients book by Back, Arnold and Tulsky
___ Complete at least two non-overlapping core didactics with each member of the Bridges Group:
Anat LeBlanc: _________________ __________________
Bob Macauley: _________________ __________________
Lindsay Wooster: _________________ __________________
Monica Holland: _________________ __________________
Sara Taub: _________________ __________________
Tyler Tate: _________________ __________________
___ Participate in facilitated writing exercise
___ Return copy of Mastering Communication with Seriously Ill Patients book
___ Set up a check out time with the rotation director
___ Complete required residency program evaluation