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Helpful and Missing from Palliative Chaplain Progress Notes: Results – 7 Palliative Team Focus Groups

APC National Conference / TC Capstone Conference

Friday, June 21, 2019

Paul Galchutt

DisclosuresNo financial relationships to disclose.

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Acknowledgments

Research Partner: Judy Connolly, DMin, BCC

Co-Moderators

Research Partners/Participants6 Teams

Chaplain liaisons and palliative program/medical directors

Advisory CommitteeMegan Winkler, APRN, PhD

Lex Tartaglia, DMin, ACPE Educator

Reflexivity: Paul

• Transforming Chaplaincy Research Fellow

• 10 years - Inpatient palliative chaplain at the University of Minnesota Medical Center

• “Developed” a palliative spiritual assessment (2013, 2016)

• White, straight, married, two kids

• From upper Midwest and live there now

• Lutheran pastor (23 years; Evangelical Lutheran Church in America)

• 7 years congregation; 16 years chaplaincy (including residency)

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Where We Are Going?

Background/Introduction

Research Question(s)

Methods

Mini Focus Group Participation

Analysis

Results

Discussion

Background: Where’s the Gap?

• “Most chaplain progress notes are a version of ‘I was here.’” - Wendy Cadge (2012)

• “Code language” and don’t communicate “deeper spiritual connections.” - Lee et al (2016)

• “Higher rates of hospice use, fewer aggressive interventions, and fewer ICU deaths.” - Balboni et al (2013)

• Necessitates a “narrative approach.” - Coats et al (2017)

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Research Question

What content is most helpful and missing from a palliative chaplain spiritual assessment progress note?

Who Reads Palliative Chaplain Progress Notes?• Convenience Sample

• Doctors• Nurses• Social Workers• Other Interprofessionals• Each other

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Methods

Design: Non-chaplain palliative care team members. 7 groups over 3 months. Modification.

Sites and Participant Recruitment: 6 sites. 5 adult inpatient settings. 1 peds inpt.

Recruitment: Chaplain Liaisons & Palliative Directors

Methods: Focus Group Process

90 minutes duration

Consent/demographic forms/incentives

Discussion guide/advisory group

Digital audio recorders/transcriptionist

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Analysis: Constant

Comparative Method

Data Familiarization – Read, then re-read the transcripts

Level 1 Coding – Codes

• Cutting out quotes

Level 2 Coding - Categories

• Codebook taking shape• Cleaned the transcripts

Level 3 Coding – Themes

• Codebook development

Let’s Focus: What Is Most Helpful?

Write down what you think is most helpful.

1.

2.

3.

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Views and Perceptions: What Is Missing?

Write down what you think is missing.

1.

2.

3.

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Conversation: What Is Most Important?

What about the progress note is most important?1. 2.3.

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Results: Groups and Participant CharacteristicsTotal: 42 non-chaplain palliative care interprofessionalsTotal: 42 non-chaplain palliative care interprofessionals

Group Size: Ranged 4-8 participants (mean = 6)Group Size: Ranged 4-8 participants (mean = 6)

Participant Age: Ranged, 25-62 (mean age = 43)Participant Age: Ranged, 25-62 (mean age = 43)

Most participants were:Most participants were:• White (91%)• Female (69%)• Physicians (41%)• Christians (62%); no religious/spiritual affiliation (16%)

Results: 7 Themes –Descriptive Content

1. Decision Making• Religion/Spirituality• Hope

2. Suffering3. Coping4. Religion/Spirituality

• Spectrum• Description• Importance

5. Story• Understanding of illness• Spiritual story

6. Family• Support• Dynamics

7. Perception of Emotion

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Results: 5 Themes –Summary Content

1. Logistics2. Synthesis3. Scales

• Suffering/Distress• Decision Making

4. Recommendations to Staff• Language• Practices - religious/spiritual

5. Needs/Goals of Care/Action Plan

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Discussion

DECISION MAKING SUFFERING/COPING PERCEPTION OF EMOTION

SUMMARY CONTENT

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Bonus Round:Research Questions

1. What does the palliative chaplain spiritual assessment progress note do for you?

2. What recommendations would you provide as palliative chaplains approach progress note creation?

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Bonus Round Results: What a Note DoesCommunicates

Educates

“Scouts”/Clarifies

Provides Continuity

Reinforces Generalist/Specialist

Generates Conversation/Rounds

Humanizes

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Bonus Round Results: Do’s and Don’ts

Do:

• Use a template• Integrate impressions and

interpretations• Integrate interventions and

outcomes• Differentiate from social work

and child-family life

Don’t:

• Create two-liner notes, “I was there” (Cadge, 2012)

• Document “presence” or “(favorite word for) listening”

• Include content too sensitive and confidential

Limitations: No Research Is Perfect• Transferability• Sample Broadening

• Geography• Gender• Religion• Race/Ethnicity• Inpatient (not hospice; outpatient)

• Selection Bias: Voluntary nature• Social Desirability Bias: I knew some

folks in advance

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Implications for Future Studies

• Hospice or outpatient palliative care settings

• Pediatric focus• Inpatient nursing – highest

volume of referrals• Create templates and test out

Applications & Recommendations

• So, what does this mean for our practice and partnerships?

• Thoughts?• Last word from the

gathering

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References

Balboni, T. A., Balboni, M., Enzinger, A. C., Gallivan, K., Paulk, M. E., Wright, A., ... & Prigerson, H. G. (2013). Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life. JAMA internal medicine, 173(12), 1109-1117.Cadge, W. (2012). Paging God: Religion in the halls of medicine. University of Chicago Press.

Coats, H., Crist, J. D., Berger, A., Sternberg, E., & Rosenfeld, A. G. (2017). African American elders’ serious illness experiences: Narratives of “God did,”“God will,” and “life is better”. Qualitative health research, 27(5), 634-648.

Lee, B. M., Curlin, F. A., & Choi, P. J. (2016). Documenting presence: A descriptive study of chaplain notes in the intensive care unit. Palliative & supportive care, 15(2), 190-196.