Poetics of Dying and Care by Jenny Liu

Poetics of Dying and Care MEMORIAL SLOAN KETTERING + PARSONS SCHOOL OF DESIGN

Roles DESIGN RESEARCHER CONCEPT DEVELOPMENT INTERVIEW + WORKSHOP FACILITATOR VISUAL DESIGNER

Team AMANDA ASTORGA PINTO NAOKI HASHIMOTO

Context HEALTHCARE DESIGN STUDIO

Timeline SEPTEMBER 2017 - CURRENT

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(5+ MONTHS)

QUESTIONS

• How might we help physicians and medical staff activate a conversational space that moves from distractions of options and hope for cure to an acknowledgment and empathy for the patient’s life?

• How might we make the intangible difficulty in medical communication tangible?

Project Brief An educational toolkit to teach medical practitioners how to have honest and open conversations about end of life.

As we live in an age where medical advancements have increased average life expectancy, conversations surrounding end of life care have remained unaddressed by a large portion of the American medical community. Our project addresses the lack of communication around what it means to have a good “end of life” due to over-prioritization of medical intervention, uncertainty around modern definitions of death, and cultural discomfort with the topic of dying.

CONTEXT This issue presents an enormous amount of patient-family-doctor distress and major economic challenges for hospitals throughout the nation. A report by the The Joint Commission, Division of Health Care Improvement (2015), references case studies indicating: • 80% of patients expressed a desire to talk with a doctor about end-of-life issues but only 7% had experienced this convesation • Medicare spending per patient in the last year of life was shown to be six times that of their living peers—$38,975 vs. $5,993, with high costs suggesting a great deal of undesired interventional procedures at end of life.

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Process STUDIO WORKSHOPS Our healthcare design studio ran two varieties of workshops to collect insights from participants with experience in end of life care: 1) World Café Description: Several groups of 4-5 participants and designers unpack “How Might We” questions in 10-minute rotating sessions for a total of three sessions Research Tools: Systems mapping and Wheel of Reasoning (a design mapping tool developed by FreedomLab) Participants: Doctors, nurses, caregivers, patients, and design strategists from Memorial Sloan Kettering Hospital

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2) Video Ethnography Focus Groups

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Description: A viewing of clips from the “End of Life� video ethnography film is followed by a

WHEEL OF REASONING

deconstructed script exercise for participants to design an ideal medical conversation scenario

Through an iterative process of ideation and research, our team developed a wheel of reasoning

Research Tools: Storyboarding, Journey Mapping

diagram that highlights current issues within the patient-family-doctor relationship and proposes

Participants: Patients, nurses, and caregivers

several changes to reach an ideal future scenario.

DATA ANALYSIS We searched for patterns in language by highlighting reoccurring themes and words from the recorded transcripts of interviews and simulations. Our goal was to surface attitudes around the topic of dying in medical conversations through a rigorous analysis of trends in communication.

PARTICIPANT WORKSHOPS + INTERVIEWS We directed further research towards medical professionals and students. We designed and conducted recorded workshops involving doctor-patient role play simulations and vigil plan exercises with palliative care and oncology physicians, two teams of medical students, and an internal medicine resident. We also recorded semi-structured interviews with the physicians.

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where and when to use it?

Concept Medical school mapping journey

We packaged our research methods into a toolkit activity that could be embedded in clinical skills courses as a workshop or symposium in the early years of medical school.

Foundations of Medicine and Clinical Skills

Clinical skills

Core Clerkships

Clinical Medicine and SubInternships

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2

3

4

Period of intervention Workshop, symposium

WHY MEDICAL SCHOOL? We are addressing the impacts of language starting at an earlier educational setting, where we believe knowledge is initially fed, disseminated, and perpetuated amongst a community shaping the future culture of medicine and dying.

We believe these exercises will help students reconsider the idea of “best practices” as providing support at a patient’s end of life rather than defaulting to interventional medicine.

INSTRUCTIONS The activity is to be conducted in small groups of 2-3 participants.

1) Set up digital audio recording and transcription software.

2) Select a scenario card and role play the described medical situation.

PATTERNS IN LANGUAGE

mention of options

After listening to simulations and coding

information delivery and planning

transcripts of participant workshops and

reference of death and dying with other words

interviews, we identified key patterns in

generated keys from blank templates. Highlight words and themes corresponding to the keys.

decision making agency for patient and family

language that suggested student

5) Discuss findings from exercise with one another.

concern for medical reputation

discomfort with end of life.

6) Supplemental: The toolkit provides a reference guide containing several coded transcriptions.

fear of giving up

of recorded conversations about end of life with a palliative care doctor, The guide can be used

3) Read through the transcribed dialogue.

4) Search for language patterns using pre-designed keys or identify patterns using self-

as inspiration for identifying trends in clinical language.

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ADDITIONAL BENEFITS • An evidence-based approach could have a strong learning effect on a population of individuals that privilege direct observational facts • The tool demands a reflection upon qualitative information in a way that is masked by a quantitative process of coding and pattern finding

Next Steps • Prototyping workshops with students from Dartmouth Geisel School of Medicine • Prototyping workshops with a palliative care medical team at New York Presbyterian Hospital • Research on pattern recognition software for automatic language coding

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