Events: Summer - Fall 2023
Annual Meeting
2023 June
Member + Session Leader
Participating in the first in-person Annual meeting. Leading the members through an activity I created to support meaningful interpersonal connections between members during and after this gathering.
Treuman Katz Center for Bioethics and Palliative Care, Research Seminar
2023 August
Guest Presenter
Speaking from the family perspective and leading an open dialogue with an interdisciplinary gathering of pediatric providers working in the areas of bioethics, research, clinical practice, communication, and palliative care. Invited to be the first guest presenter for this ongoing Research Seminar based out of Seattle Children's.
End of Life Simulation & Skills Training Workshop
2023 Fall Workshops
Parent Faculty & Co-Investigator
Partnering with Neonatologists Johannah Scheurer MD and Heidi Kamrath DO, and the University of Minnesota Sims Center for a simulation and skills training workshop for NICU, PICU, and Oncology Fellows at the UMN. Workshop focused on the high stakes skills needed for end of life conversation and medical skills.
2023 Fall
Bereaved Parent Training Program
Co-developing the expansion of the Bereaved Parent role through recruiting, training, and onboarding additional parents into this role. Partnering with the UMN SIMS center to develop trauma informed safe practices for bereaved parents working as educators of medical providers.
To learn more about possible events for your organization with MamaShu email Dannell@MamaShu.org
Parent Advocate
Pediatric Palliative Care National Task Force Established 2020 by National Coalition for Hospice and Palliative Care. Parent Advocate member. Work Group: Payment & Financing
Minnesota Palliative Care Advisory Council Established 2017 by MN Legislature. Caregiver member since 2017, appointed by the Commissioner, MN Department of Health.
Work Groups: Policy, Research / Data / Metrics, Council Membership
PPCCMN: Pediatric Palliative Care Coalition of MN
Parent Advocate member since 2014
Previous Roles
PACCT: Fairview Home Care and Hospice Pediatric Advanced and Complex Care Team A Program Advisory Committee at the University of Minnesota. Parent Advocate member 2014-2019.
Mobilizing Palliative Care Awareness
Participated in this event hosted by the MN Network of Hospice and Palliative Care. A forum to identify ways and words for consistent communication messaging about palliative care to the public. October 2014
Keynote Speaker & Storyteller
Minnesota Network of Hospice and Palliative Care
Annual Fundraiser
2017 & 2014
Faith's Lodge: Hope Rocks Gala
10th Annual Fundraiser
2018
Crescent Cove
Ribbon Cutting Ceremony
November 2017
Building Dedication
May 2017
Home Plate Gala
January 2015
National Academies of Science Engineering and Medicine
Panelist: Understanding the Needs of Family Caregivers
Closing Keynote Speaker
The National Academies Roundtable on Quality Care for People with Serious Illness, National Cancer Policy Forum, and Forum on Aging, Disability and Independence hosted a workshop that examined opportunities to better support family caregiving for people with cancer or other serious illnesses. This workshop built upon previous work, including the 2016 consensus report Families Caring for an Aging America. This Proceedings of a Workshop summarizes the discussions held during the workshop, which focused on: strategies to better capture, understand, and act on family caregiver input and experience; research gaps and opportunities to guide caregiving for patients with serious illnesses; potential policy and practice opportunities to advance family-centered care for serious illness; and opportunities to embed a health equity focus across family caregiving research, policy, and practice. May 2022
Susan Marschalk
Former Executive Director
Minnesota Network of Hospice and Palliative Care
“I am speechless when I think of your story Dannell. You represent the spirit – the core values – the compassion that is really at the heart of what palliative care is. And your immense love for Levi and your family shines through in each word.
You tell the story of the importance of pediatric palliative care in a way that anyone would resonate with and then connect to the relevance of palliative care in everyone’s life. So grateful I met you. You continue to inspire me.”
Health Care Educator
Pediatric Residents & Fellows
Special Topics Class
Invited by Naomi Goloff MD, FRCPC FAAHPM, Pediatric Palliative Care physician to join her for a special-topics class with 25+ pediatric residents and fellows at the University of Minnesota(UMN). Topic: the importance of having a values based care plan ahead of major health decisions for children and families. March 2018
End of Life Simulation & Skills Training Workshop
Parent Faculty & Co-Investigator
Invited by project founder Naomi Goloff MD, FRCPC FAAHPM, Pediatric Palliative Care physician in partnership with the UMN Sims Center, to be a Parent Faculty and Co-Investigator. Project is currently co-lead by Neonatologists Johannah Scheurer MD and Heidi Kamrath DO. Pediatric end-of-life (EOL) care is a high-stakes situation requiring careful planning and practice; there is only one chance to get it right. While several pediatric sub-specialties commonly treat patients with life-threatening illnesses, fellowship training often lacks formal EOL training and skills practice. This workshop offers half-day simulation-based training to pediatric sub-specialty fellows to grow their confidence and competence in EOL skills. 2020 Workshops included a mix of live and virtual elements. 2021 events returned to in-person workshops. (2017-current)
EOL SIMS Project Awards
2018 Young Investigator Award to Dr. Naomi Goloff MD, FAAP
Awarded at St Jude's Pediatric Palliative Care Oncology Symposium
Project: Using the Low-Stakes Model of Standardized Patient Simulation to Improve Primary Palliative Care Skills of Pediatric Oncology Fellows During High-Stakes End-of-Life Situations
EOL SIMS Project Booster Sessions
Parent Faculty
Special topics booster sessions provided as follow-up education for participants in the End of Life Simulation & Skills Training Workshop. Individual sessions for PICU, NICU, Heme-Onc Fellows. Spring 2019
Parent Faculty Education
Pediatric Palliative Oncology Symposium @ St Jude
Participating, on behalf of the University of Minnesota Health Masonic Children's Hospital, in a training for integrating bereaved parents into Education and Parent-to-Parent Support. 2018
St Jude's Parent Mentoring Training
Participating in this training with fellow bereaved parents at St Jude, Memphis. 2019
Poster Presentation
American Academy of Pediatrics National Conference,
Section on Hospice and Palliative Care
The Power of Bereaved Parent Faculty to Inform Pediatric End-of-Life Education with Standardized Patients Co-Presenting on my roles as Parent Faculty and Bereaved Parent in the pilot project using low-stakes simulation training to teach high-stakes EOL skills for pediatric fellows at the University of Minnesota. New Orleans 2019
Courageous Parents Network
Panel Co-Presenter, "In the Room" Events
Attended by providers and parents of children with medical needs, these Zoom gatherings offer first-person insights and interactive dialogue with a panel of parents and medical experts.
~ I Need a Break, Caregiver Burnout January 2023
~ Dispelling the Myths and Presenting the Truths of Palliative Care, Concurrent Care and Hospice Care August 2021
Annual Conference
Breakout Session Presenter
Largest conference on this topic in the Midwest (1,000) Breakout session topics:
Improvisation and Navigation in Pediatric Palliative Care Co-presentation with Ted
Bowman. This session was selected to be a part of the 2020 Conference, which
was later cancelled due to COVID-19.
Bridging the Death Experience: Supporting Families Transition from Hospice Home Care to After-Death Home Care Co-presented with Anne Murphy of A Thousand Hands. April 2018
Palliative Care Advisory Council Update Co-presented with Joy Liu (Council Co-chair) and Elizabeth Mahan. April 2018
Pediatric Palliative Care Symposium
Special Topics Co-Presenter (2019, 2018), Parent Panel (2015)
Training for Health Care Professionals, Parents, and community Members. 2019 session focused on Improvisation and Navigation in Pediatric Palliative Care. Session was also a pre-conference event for the 2019 American Academy of Music Therapists Annual Conference. 2018 session focused on importance of addressing palliative care and hospice care early and often when working with children facing a life-limiting condition. 2015 panel focused on the family experience within pediatric palliative care when care is provided from the beginning of life / time of diagnosis.
Pediatric Nurse Education
Care at the Time of Death
Session co-presenter in collaboration with pediatric palliative physician Naomi Goloff, MD, FRCPC FAAHPM, and pediatric palliative nurse Jody Chrastek RN DPN CHPN FPCN Oct 2018
Parent Panel
Training for Nurses and Health Care Professionals. Hosted by Children's Hospital and Clinics of Minnesota in collaboration with University of Minnesota Masonic Children's Hospital. June 2017
Symptom Management Co-Presenter with Krista Westendorp, RN
Communication Q&A, things you always wanted to say as a parent
Training for Nurses and Health Care Professionals. Hosted by University of Minnesota Masonic Children's Hospital. April 2014
Education for Pediatric Palliative Providers
Co-Educator and Presenter
"When you are More Than a Family: Challenges When your Child is the Patient" Co-presented with Deb Laxton for the Pediatric Palliative Care Coalition of MN. Insight into roles, responsibilities, communication channels, and the challenges of difficult decisions for family caregivers. Presentation included adult patient and nonverbal medically complex child patient contexts while highlighting the additional unique difficulties parents face when their child has a life limiting condition. July 2020
Grief Education for Community Interveners
Lead Educator and Presenter
An interactive half-day workshop for Community Interveners (specialists working with children with deafblindness). A sacred space for learning about multiple types of loss, time for processing grief, and 15 tools for navigating current and future losses. Sponsored by DeafBlind Services MN and hosted at Brighter Days Grief Center. August 2018
Grief Education for Social Workers
Guest Presenter
Joining Ted Bowman for a special topics session within his grief counseling course, as a part of the Masters of Social Work program at St. Thomas University. Focusing on pre-bereavement care, palliative care, and insights for working with families facing medical complexities. July 2018
CEU Audio Course for Physicians
Parent Expert
Participated in the creation of an audio course for physicians who don't usually encounter patients/children with a life limiting condition. Course introduced doctors to pediatric palliative care. Four experts were invited to be a part of this course: doctor, nurse, social worker, parent. January 2015
Hospice Staff Education
Parent Expert
Training session for staff as they began to make the shift to welcoming children and their families for end of life care. This was the first adult hospice home in MN to begin welcoming children. A large range of staff attended including: nurses, social workers, chaplains, cooks, and administrative. Training session was co-lead by Jody Charstek RN, DNP, CHPN of Fairview's Pediatric Palliative Care Program. November 2015
CAPC Clinical Training Recommendations
Family Advocate Advisor
Participated in the development of CAPC's first pediatric clinical training recommendations (2022) applicable to all clinicians caring for pediatric patients (ie: neonates, perinates, infants, children, adolescents and young adults ) and their families. These recommendations are important steps toward improving clinician capacity to effectively care for these patients. Recommendations cover four aspects of care:
-
assessing the needs and concerns of pediatric patients
-
strengthening the care team, patient, and family relationship, and understanding care goals
-
pain and symptom management
-
preventing crisis and planning ahead
Recommendations were developed for the following disciplines with learning pathways for general and specialist palliative care skills.
-
Pediatric Physicians (Pediatricians)
-
Pediatric Physician Assistants
-
Pediatric Advanced Practice Registered Nurses
-
Pediatric Registered Nurses
-
Pediatric Social Workers
-
Pediatric Chaplains
-
Pediatric Psychologists
"Dannell's contributions were foundational to the edits made across this document. We cross-referenced her input with each discipline to ensure they were aligned. We appreciate having her grounding to help ensure we were keeping the families and caregivers as the north star for why these recommendations exist."
~ Stacie Sinclair, CAPC
CAPC Podcast
Featured Family Story
Podcast interview used to create awareness in the general public about Palliative Care. Jody Charastek RN, DNP, CHPN was also interviewed and gave the clinician's perspective about Levi. Podcast released October 2015 on GetPalliativeCare.org
The Minnesota Conference on Architecture
Panel Co-Presenter, Trauma Informed Design
2,000+ Minnesota architects and building industry professionals attend the annual Conference to learn about trends and new technologies in building products and earn continuing education credits by attending seminars. Co-presenting in a round table discussion on the concept and process of trauma informed design. Co-Presenting with Teri Kwant, Director RSP DreamBox, Katie Lingenfelser Founder, Crescent Cove and more. November 2019
Jody Chrastek
RN, DNP, CHPN
Pediatric Palliative Care Expert
ELNEC Trainer
Internationally recognized
Parent was Amazing
“One of the most popular speakers was a parent of a child with a life limiting illness. She spoke about the families struggles and also was able to answer questions from the parents perspective. Both of the groups of attendees commented on how meaningful it was to have her be part of the workshop.”
ELNEC Participant Comments
-
“It was very helpful to have a parent who had been though palliative care speak to the experience.”
-
“The parent speaker was amazing her courage to speak and be open with a roomful of strangers was beautiful.”
Photo Credits: Summer Street Photography (Past Events, Parent Advocate). MNHPC (Keynote/MNPHC, Quote/Susan Marshcalk 2 images), Crescent Cove (Keynote/Crescent Cove)