A Vision of Hope: Using Patient Voices to Train Interdisciplinary

Clinicians

Jackie Williams-Reade, PhD, LMFTAssistant Professor, Director of Medical Family Therapy

Loma Linda University

Collaborative Family Healthcare Association 14th Annual ConferenceOctober 4-6, 2012 Austin, Texas U.S.A.

Session #B5bOctober 6, 2012

Faculty Disclosure

I/We have not had any relevant financial relationships during the past 12 months.

The Vision of Hope Project is supported by a grant (1 RC1NR011710-01) from the NIH National Institute

of Nursing Research.

AcknowledgementsPrimary Investigators: Gail Geller, ScD, MHS and Cynda H. Rushton, PhD, RN

Co-Investigators: Mary Catherine Beach, MD, MPH and Carlton Haywood, Jr., PhD, MA

Objectives• Explore the lived experiences of adolescents with

Duchenne Muscular Dystrophy and their family members

• Describe the impact of caring for these patients on family members and interdisciplinary team members

• Review a research project that used patient voices in the training of interdisciplinary clinicians in pediatric palliative care

Goals for Today

• Background– Description of our research project

– Description of Duchenne Muscular Dystrophy (DMD) and Pediatric Palliative Care (PPC)

• Show 2 of our videos

• Engage in brief reflection/discussion

• Review evaluation data

Specific Aims of Grant

• To understand the lived experiences and unmet needs of adolescents and young adults with DMD and the impact of caring for this population on interdisciplinary teams of clinicians; and

• Enhance the integration of palliative care principles and practices through the training of interdisciplinary professionals, patients and families.

To accomplish these aims, we:

• Produced six documentary training videos that highlight the lived experience of patients, families, and the clinicians

who care for them and various aspects of palliative care.

• Adapted an existing training program (IPPC) for this population that draws on the videos to trigger conversation

and highlight relevant palliative care principles.

• Implemented and evaluated two different training programs designed to improve clinician attitudes and

patient experiences

• CLINICIAN OUTCOMES• Knowledge• Attitudes• Reported Skills/Behavior• Personal

Distress/Meaning

• PATIENT EXPERIENCE

• Pre-Intervention:• Hierarchical (Non-Relational)

Model of Treatment-Focused Care

• Post-Intervention:• Relational Model of

Palliative Care

• INTERVENTIONS• A: Video +

discussion • B: Modified IPPC

Curriculum w/ Video

Duchenne Muscular Dystrophy (DMD) • Definition/Incidence - One of nine types of muscular dystrophy. Most common pediatric

genetic disorder in the world, affecting 1 in every 3500 male births. Affects all races and ethnicities equally.

• Cause - An absence of dystrophin, a protein that helps keep muscle cells intact.

• Inheritance - X-linked recessive. DMD primarily affects boys, who inherit the disease through their mothers. Women can be carriers of DMD but usually exhibit no symptoms.

• Onset - Early childhood - about 2 to 6 years.

• Symptoms - Generalized weakness and muscle wasting first affecting the muscles of the hips, pelvic area, thighs and shoulders. Some boys have cognitive impairment.

• Progression - Progressive loss of neuromuscular function. DMD eventually affects all voluntary muscles, and the heart and breathing muscles.

• Death is inevitable due to respiratory or cardiac failure but time spans vary

• Use of mechanical ventilation can extend lifespan

• Survival is rare beyond the early 30s

MDA, 2008

Curative treatment

Palliativetreatment

D E A T H

Bereavement

Historical Model of Palliative Care

Diagnosis

Curative treatment

Palliativetreatment

D E A T H

Bereavement

Current Model of Palliative Care

Diagnosis

Palliative Care (PC)

“The art and science of patient and family-centered care aimed at attending to suffering, promoting healing and improving quality of life” ~Javier Kane, MD

“It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and

improving quality of life at any stage of disease.” (Klick & Hauer, 2010)

World Health Organization definition ofPediatric Palliative Care

• Palliative care begins when illness is diagnosed, and continues irrespective of whether or not a child

receives disease directed treatment • Palliative care for children is the active total care of

the child’s body, mind and spirit, and also involves giving support to the family

• Requires a broad multidisciplinary approach that includes the family and makes use of available

community resources

Components of Palliative Care

• Quality of life• Pain and Symptom Management• Communication• Ethical Decision making• Advance Care Planning• Grief & Bereavement

How Can Palliative Care Help?

• Relief of suffering and improved quality of life – addresses not only physical pain but emotional and spiritual distress as well.

• Acknowledges clinician suffering and its contribution to negative attitudes.

• Improved communication around goals of care – including advanced care planning and involvement of adolescents in decision-making.

• Enhanced coordination of care among patients, families and clinicians, and across systems of care.

About the Curriculum• A modification of the 25-hour instructional curriculum developed

by the Initiative for Pediatric Palliative Care (IPPC) to enhance the skills of pediatric healthcare professionals.

• Intended for interdisciplinary teams of clinicians, patients and family members to learn as equal co-participants

• Differs from other educational experiences:

• Fosters self-discovery in a safe environment away from distractions

• Allows more time for reflection and interaction• Involves patients and families• Offers participants opportunities for self-care

Patients and

Families

Settings of Care

Diverse Clinical

Disciplines

Relational Model of Learning

Comparison of Training FormatsContent In-Service Intensive Retreat

Length 1-1.5 hours 2.5 days

Intro 10 minutes 15-20 minutes

Brief presentations• Intro to Pediatric Palliative care• Ethical Landscape

30 minutes

Films 1-5 1 film = 9 minutes 1 film = 9 minutes

Film Discussion 15 minutes 15-45 min. per film

Experiential Exercise(s)• Listening• Quality of Life

30 minutes each

Closing Activity 30 minutes

Evaluation (pre and post) 5-10 min. 15-20 minutes

ParticipantsInstitution City

Modified IPPC/ 2.5 day retreatMUSC Charleston, SCColumbus Nationwide Children’s Hospital Columbus, OH

Children’s Hospital of Michigan Detroit, MIChildren’s Hospital of Pittsburgh of UPMC Pittsburgh, PA

Video +discussion/ 60-90 minDuke/Duke Children’s Hospital Durham, NCCincinnati Children’s Cincinnati, OHUniversity of Rochester Medical Center Rochester, NY

Four Films

• Many Faces of Hope• Listen to Me• Unexamined Distress• An Uncertain Future

Retreat In-service Total

Pre Post Pre Post Pre Post

I have confidence that I can address the barriers to integrating palliative care services with pediatric NMD care.

Disagree 12.0 7.7 26.2 12.9 22.1 11.4

Agree 88.0 92.3 73.8 87.1* 77.9 88.6Referring a child or adolescent to palliative care services too early will undermine the family’s hope

Disagree 76.9 92.0 78.1 90.3 77.8 90.8Agree 23.1 8.0 * 21.9 9.7 * 22.2 9.2

Palliative care is primarily about providing care at the end of lifeDisagree 80.8 100.0 88.9 98.4 86.5 98.9

Agree 19.2 0.0 * 11.1 1.6 * 13.5 1.1

Results

Conclusions• Clinician attitudes toward the incorporation of

palliative care into the care of patients with DMD and their family members can be positively influenced through a film-based intervention – both short and long versions.

• Further research should explore – Future research should examine the extent to which

the attitudinal changes observed here can be sustained and are linked to clinical outcomes.

Questions

Session Evaluation

Please complete and return theevaluation form to the classroom monitor

before leaving this session.

Thank you!