San Diego Coalition for Compassionate Care (SDCCC) &
CSU Shiley Haynes Institute for Palliative Care at CSUSM Present
Minding the Gaps: Serving the Whole Person Through Palliative Care
Friday, October 11, 2024, at California State University San Marcos
8:30 a.m. – 3:00 p.m.
7:45-8:30
Registration, Breakfast Service (USU Level Two: Ballroom B/D)
8:30-8:50
General Session: Welcome and Opening Remarks (USU Ballroom B/D)
Michael McDuffie PhD, Faculty Director, CSU SHIPC at CSUSM;
Ellen Neufeldt PhD; President, CSUSM
Sandhya Bhalla MD, Chair, SDCCC
8:50-9:45
Opening Keynote:
“Minding the Gaps: Serving the Whole Person Through Palliative Care”
Charles F. von Gunten MD, PhD, FACP, FAAHPM
Chief Medical Officer
The Elizabeth Hospice
In this presentation, Dr. von Gunten introduces the overall theme of the conference: the commitment to whole-person care that animates palliative care and hospice care. Sharing recent case histories, used with patient permission, Dr. von Gunten describes lessons learned from patients, illustrating what the patient voice can teach us about gaps in our current practices. Patient voices can teach us what we need to know, regarding the quality of the care that we provide. The challenge is to ensure open spaces where the patient’s voice can be effectively heard.
9:45-10:00
Morning Break; Room Change
10:00-10:50
Breakout Session 1
Breakout 1A (USU Ballroom A)
Panel Discussion: “Palliative Care in Dementia: Unmet Needs”
Karl Steinberg MD, CMD, HMDC, HEC-C, moderator; Taib Rawi DO, MBA, HMDC; John Tastad MA; Carol Bos RN, BSN, MA; Sue Lasbury (family caregiver)
Panelists will address these topics in palliative care for patients with dementia and cognitive impairment:
Hearing the patient/caregiver voice
Creating realistic expectations (feeding tubes, hydration)
Implementing dementia directives that request cessation of oral feeding
Understanding hospice criteria, prognostic uncertainty, and the problem of pre-hospice-eligibility access to PC services
Improving medication management (and assessing possible overutilization)
Breakout 1B (USU Ballroom B)
“The Death Doula’s Role In Bridging The Palliative Care Gap”
Melissa McClave
Join Death Doula Melissa McClave to explore her unconventional approach to enhancing the end-of-life experience for both the dying and their loved ones, particularly among underserved populations such as “elderly orphans” and those battling addiction. Melissa's practice at Last Acts of Love, established in 2018, emphasizes what truly matters at the end of life: shared experiences of love. This interactive conference session will focus on the role of a death doula and their contribution to effective end-of-life discussions. Key components of successful outreach—such as inclusivity across ages, genders, ethnicities, lifestyles, and cultural backgrounds—will be explored. The session will also cover the importance of setting, refreshments, marketing, timing, and consistency in creating engaging outreach events. Ample time will be allocated for Q&A to address all participant queries.
Breakout 1C (USU 2310A)
“Palliative Care, Advance Care Planning, and Health Literacy”
Mitsuo Tomita MD, Jessica Empeño MSW
Health literacy, or how well individuals are able to understand and use health information to make health-related decisions, is essential in advance care planning and for the completion of advance directives and POLST. End-of-life care planning can be especially challenging since the stakes are high and complicated – life, death, compromised quality of life, impact on family – and are based on written and verbal communication. Complex illnesses and medical/technical interventions can be difficult to understand. How can we improve health literacy as it pertains to advance care planning and POLST? How can we improve health literacy for Spanish-speaking and perhaps other groups? Awareness of end-of-life options is limited. Many people perceive CPR from the movies. What do people need to know to improve their “death literacy?” This workshop will provide information and discussion, and attendees will be able to share experiences, share resources, and identify needs in order to address health literacy in advance care planning and POLST.
Breakout 1D (USU 2310B)
Part one:
“Introducing Palliative Care to Faith Communities”
Barbara Bailey MS
The focus of this workshop will be to present the concept of Whole Person Care initiated by the California Catholic Conference and the Alliance of Catholic Health Care. Training of volunteers and implementation of measures to provide support to those with serious illness and those who are dying will be presented.
Part two:
“Palliative Care is Spiritual Care”
William Harman, John Tastad MA
Following Ms. Bailey’s presentation, these speakers will moderate an interactive discussion of the importance of spiritual care in any approach to whole-person palliative care; the need for ongoing assessment of spiritual and existential distress in patients receiving palliative care and hospice care; and the need for interprofessional support in managing challenging cases of spiritual distress and existential suffering.
10:50-11:00
Room Change
11:00-11:50
Breakout Session 2
Breakout 2A (USU Ballroom A)
“Through Their Eyes: A Window into Living with Dementia: A Glimpse into the Unique World of Individuals Living with Alzheimer’s and Dementia.”
Lisa Skinner
Currently, there are millions of people living with Alzheimer’s disease and dementia throughout the world, yet it remains one of the most misunderstood disorders of today. Lisa uncovers why it’s not uncommon for people to believe that dementia exclusively causes memory loss and confusion; however, the overall impact that brain diseases have on a person’s cognitive abilities is so much more involved and complicated than people realize.In this poignant and eye-opening speech, Lisa unveils an astonishing perspective of how individuals living with Alzheimer’s disease and dementia realistically perceive their worlds to help them gain a deeper understanding of the challenges, emotions, and experiences faced by those navigating these cognitive conditions. Through personal accounts and real-life illustrations, Lisa enables her audiences to imagine what it would be like to walk in their shoes day by day, as well as why dementia causes the symptoms and behaviors we commonly see.
Breakout 2B (USU Ballroom B)
“Geode Cracking Project, (GCP). An enhancement communication tool using a 16- deck of cards to discover and understand patients core values.”
Dawn Gross MD, PhD; Karen Rivo RN, MSN, DNP; Jolene Scarella MS, RN, CHPN
The Geode Cracking Card Project (GCP) is an innovative communication enhancement tool created by Dr. Dawn Gross, MD. Dawn has trained a core group of multidisciplinary team members at UCSF Hematology/Blood and Marrow Transplant and Cellular Therapy Center on how to incorporate this tool into patient encounters. It consists of a deck of 16 cards that inspire the participant to discuss why they chose a particular card. The process of “geode excavating” quickly illuminates what the participant cares most about, during a facilitated exploration between patient and Geode facilitator. Sharing the GCP experience in advance care planning notes can in turn make these values known to the team, thereby informing treatment choices and goals-of-care conversations, (GOC) by allowing the team to be aware of pertinent values that patients may not ordinarily express during a clinic appointment. The beauty of the cards lies in in the ways participants resonate with them.
Creating a deeper connection between the facilitator/health care provider and the patient as well as community and resilience between team members was an unexpected finding. We look forward to what we can discover once more people experience the cards and how they can enhance communication with patients, families and caregivers. In presenting this tool in a workshop format we hope to let participants see for themselves how using them brings core values to light.
Breakout 2C (USU 2310A)
“GIP Hospice Care can help a hospital, not just a patient and family”
Charles F. von Gunten MD, PhD, FACP, FAAHPM
Vignette: An 86 yo woman with metastatic pancreas cancer was admitted to the hospital for chest pain and dyspnea. A pulmonary embolism was diagnosed. Despite maximal medical intervention, her clinical condition worsened. In a goals of care conversation with the son, the DPOA, a shift to comfort care only was made. A referral to admit the patient to hospice General Inpatient status was made. The patient received increased attention to symptom control, and the patient’s family received emotional and spiritual support exceeding what could ordinarily be provided in the hospital, including bereavement support after the expected death.
Summary: Subspecialist palliative care teams now routinely staff contemporary hospitals. Such teams are most cost-effectively deployed for the most difficult cases, not routine end-of-life care in hospitals. As health care has evolved in the US, there is pressure to decrease in-hospital mortality rates; the hospital as a place of rescue and comfort when death is expected is yielding to a quality-driven enterprise where uniform outcomes of health and recovery are rewarded with high scores and notoriety in venues such as hospital rankings in US News & World Report and better reimbursement from commercial payers. Incorporation of Hospice care in the acute care hospital results in added support for patients and families as well as the medical staff caring for them. It also improves mortality measures. In this presentation, the approach to developing, implementing, and measuring the impact of a GIP Hospice program are described.
Breakout 2D (USU 2310B)
“Healing Circles – A practice of authentic human connection embracing mortality and wholeness: a path for patients and professionals”
Pat McClendon DNP, RN, EOL Doula; Lorrie Shepard E-RYT 500, YACEP
Those in healthcare work in a world where the decline of the body drives the focus. In healthcare saving lives and quality of life hang in the balance much of the time. Quality of life is seen differently by each person. Yet one thing that is universal is quality of death. A good death is desired by all. Denial of death is the source of much human suffering. Death is the existential paradox of humankind. Humans are split in two: we have the awareness of our separation from nature, yet the decline of the body is of nature. Acceptance of this reality is a struggle. And too often, denial of death drives how we die.
Healing circles is a universally established practice of authentic human connection. Humanity’s ancestors sat in circle to share, learn, nurture human connections and build community in times of discovery, conflict and healing. We heal best in community. Healing Circles Global is a non-profit organization that offers virtual circles to individuals in nine categories, reaching 3600 global participants annually at no cost. Circle topics include death and dying, caregiving for loved ones, living with cancer, grief and loss, supporting healthcare professionals and more. Come join us in a Healing Circle workshop, where you will learn the history, scope and outcomes of circle, and personally experience the benefits, values and mechanics of the healing circle practice.
11:50-12:50
Lunch Service and Exhibitors’ Tables
(USU Ballroom B/D)
12:50-1:00
Room Change
1:00-1:50
Breakout Session 3
Breakout 3A (USU Ballroom A)
“Mindfulness Workshop for Caregivers”
Ranjeeta Basu, PhD, Karen Schaffman PhD
This interdisciplinary team presents an overview of a self-care and resiliency-building curriculum that they developed last year in a partnership between the CSUSM Center for Contemplative Practices and the CSU Shiley Haynes Institute for Palliative Care at CSUSM. This workshop will share and practice mindfulness and movement techniques geared to reducing stress and gaining equilibrium, in view of difficult professional demands and stressors.
Breakout 3B (USU Ballroom B)
“Engaging in Shared Decision Making for Patients and Families Who Are Not Ready for Full Comfort Measures”
Gregory Thomas, DO; James Palmer, BBA, MSW
In this case presentation, we will attempt to demonstrate how the palliative care team in our community hospital attempted to serve the whole needs of a terminally-ill patient, with a focus on the many levels of communication and planning that took place between our team, the family, and other providers/hospital teams (i.e., nursing and the respiratory therapy department) when the patient was transitioned to a comfort-oriented plan of care.
We present the case of a 42-year-old Chaldean female who lived with metastatic breast cancer diagnosed a few years prior to our palliative care intervention. We engaged with the family using the Shared Decision-Making Model to create a plan of care that prioritized the patient's comfort while also considering the familial, cultural, psychosocial, and religious needs of the patient and her family. Specifically, the family insisted that the patient remain on non-invasive positive pressure ventilation (NIPPV) due to their concerns of hastening the patient's death and to preserve their hope for a miracle to occur during this hospitalization. Our interdisciplinary team collaborated with the hospital chaplains to provide support for the patient's spouse as he struggled with disclosing the patient's terminal condition to the patient's three young children (ages 12, 15, 17) and her mother who was Arabic-speaking only. We collaborated across the multiple inpatient medical teams to continue providing life-sustaining and disease-modifying interventions including NIPPV, intravenous antibiotics, and artificial nutrition while delivering skillful communication to the family when such interventions could no longer be offered during the hospitalization. This presentation will be a case discussion in which a palliative care physician and palliative care social worker will reflect on and discuss interactions that were successfully as well as opportunities for improvement in future patient encounters.
Breakout 3C (USU 2310A)
“Planificación De Necesidades de Attención Médicos Futuras” (en Español)
Eva Navarrete
This presentation, conducted in Spanish, previews a new project providing information, in Spanish, on palliative care, hospice care, advance care planning, and related topics. The SDCCC has developed this curriculum in partnership with the CSU Shiley Haynes Institute for Palliative Care, in order to address gaps in the availability of basic ACP information for Spanish-speaking audiences. In this presentation we describe our aspirations for this project and share the actual content of this new, community education initiative.
Breakout 3D (USU 2310B)
“From Grief to Growth: Coping, Connection, and Resilience in Pediatric Healthcare”
Maria Huang MD, Ami Doshi MD
Background: Pediatric health care professionals (HCPs) are at the forefront of caring for sick children and helping families cope in the moments following patient death. Yet, HCPs are often overlooked as those who experience grief and may need support during the coping process. This study identifies the variety of ways HCPs cope and the resources they utilize after a patient death. One-on-one semi-structured interviews were conducted to explore HCPs’ experiences after pediatric death. Interviews were transcribed verbatim and analyzed in an iterative process by two researchers using grounded theory.
Results: 22 HCPs completed interviews. HCPs included physicians, nurse practitioners, nurses, respiratory therapists, occupational therapist, pharmacist, interpreter, chaplain, social workers, and child life specialists. Health care experience ranged from1 year to 30 years. HCPs universally described the professional community as a necessary source of support. They describe a sense of purpose in focusing on fulfilling their duty toward patient families and professional colleagues with occasional burden of setting aside their own grief to address others’. Debriefs are valued by many but not all HCPs find them personally beneficial; debriefs should be offered, inclusive, and optional. Quality of communication between colleagues and with patient families can impact coping after patient death. HCPs describe that having a framework for thinking about death and grief can be helpful; this is often gained through experience although many desire more structured education. Study findings can help institutional leaders and palliative care clinicians improve and target supports for HCPs after pediatric death.
1:50-2:00
Room Change
2:00-2:55
Closing Keynote (USU Ballroom B/D)
“Humility and Healing: How Psychedelic Assisted Therapy May (or May Not) Help Address Demoralization in Palliative and End of Life Care”
Michael Fratkin MD, FAAHPM
Center for New Growth, Palliative Care Specialist; Institute for Rural Psychedelic Care, Board President
Everyday, no matter what our discipline or professional status in this field, we face the total pain, existential suffering, and demoralization that so often accompanies serious illness and the pathway leading to death. Our human centered interprofessional approach coupled with real learned communication skills, and the creativity that comes from well-functioning teams, is sometimes enough. Except when it's not, and it's not, quite a lot. Psychedelic assisted therapy is currently demonstrating great promise and significant challenges as our healthcare system and society begins to understand how to make a place for this unprecedented tool for healing while ensuring safety, efficacy, and the highest standard of ethics in action.
2:55-3:00
Closing Announcements, Evaluations, CEU Notifications, etc.