This document summarizes key points from a presentation on filling gaps in end of life education from the patient's perspective. It discusses how all health care professionals are viewed as playing important roles in addressing goals of care. It also notes that patients may feel reluctant to assert their interests in front of clinicians seen as experts. The document outlines barriers to end of life discussions, the need to improve communication quality, and that strategies are needed to improve advance care planning. It stresses that health literacy can present barriers and impact care choices. The importance of word choice in discussions is highlighted. The document then summarizes a proposed solution to evaluate an end of life planning resource from a lay perspective to increase knowledge and comfort with topics. It provides learnings from

1. Filling gaps in end of life education:
The patients point of view
Kathy Kastner @kathykastner
Women’s College Hospital
Institute for Health System Solutions
and Virtual Care (WIHV)
Palliative Care IS Public Health: Principles to Practice
September 17th-20th, 2017

2. kathyk@bestendings.com

3. Conversations
“All health care professionals viewed as playing
important roles in addressing goals of care”
You JJ, Downar J, Fowler RA, Lamontagne F, Ma IWY, Jayaraman D, Kryworuchko J, Strachan PH, Ilan R, Nijjar AP, Neary J, Shik J, Brazil K, Patel A, Wiebe K, Albert M, Palepu A,
Nouvet E, des Ordons AR, Sharma N, Abdul-Razzak A, Jiang X, Day A, Heyland DK, for the Canadian Researchers at the End of Life Network (CARENET)
. Barriers to Goals of Care Discussions With Seriously Ill Hospitalized Patients and Their FamiliesA Multicenter Survey of Clinicians.
JAMA Intern Med. 2015;175(4):549–556. doi:10.1001/jamainternmed.2014.7732

4. Patients as Hostages
• Patients are often reluctant to assert their interests
in the presence of clinicians, whom they see as
experts.
• The higher the stakes of a health decision, the
more entrenched the socially sanctioned roles of
patient and clinician can become.
When Patients and Their Families Feel Like Hostages to Health Care
• Berry, Leonard L. et al. 2017
Mayo Clinic Proceedings , Volume 92 , Issue 9 , 1373 - 1381

5. Physician Adaptability
• Not all patients need the same
physician interaction style
• Behavioral adaptability:
the change in verbal or nonverbal behavior
to accommodate patients’ communication needs
Patient-Centeredness as Physician Behavioral Adaptability to Patient Preferences
Valérie Carrard, Marianne Schmid Mast, Nicole Jaunin-Stalder, Noëlle Junod Perron & Johanna Sommer
Health Communication Vol. 0 , Iss. 0,0

6. Multifactoral issues

7. Communication
“Our findings highlight the urgent need
to improve quality of communication
between health care professionals
and patients living with serious illness.”
Tulsky JA, Beach MC, Butow PN, Hickman SE, Mack JW, Morrison RS, Street RL, Sudore RL, White DB, Pollak KI. A Research
Agenda for Communication Between Health Care Professionals and Patients Living With Serious Illness. JAMA Intern Med.
2017;177(9):1361–1366. doi:10.1001/jamainternmed.2017.2005

8. A Work in Progress
“Strategies are needed
to improve the quality
of advance Care Planning”
Abdul-Razzak A, Heyland DK, Simon J, et al
Patient-family agreement on values and preferences for life-sustaining treatment: results of a multicentre observational study
BMJ Supportive & Palliative Care Published Online First: 22 July 2017. doi: 10.1136/bmjspcare-2016-001284

9. Health Literacy
• Limited health literacy presents barrier to
communication
• Could lead to older adults committing to
intensive care without adequate information.
• Keren Ladin, PhD, MSc, Katie Buttafarro, OTS, Emily Hahn, BA, Susan Koch-Weser, ScD, Daniel E. Weiner, MD, MS; “End-of-Life Care? I’m not Going to Worry About That Yet.” Health
Literacy Gaps and End-of-Life Planning Among Elderly Dialysis Patients, The Gerontologist, , gnw267, https://doi.org/10.1093/geront/gnw267

10. Words Matter:
People were 20 % more likely to choose DNR
if it was phrased as "allowing natural death”
Study: Doctors' Word Choice Affects End-of-Life Decisions: Volandes
https://www.theatlantic.com/health/archive/2013/05/study-doctors-word-choice-affects-end-of-life-
decisions/275733/

11. Public Health and Palliative Care
“People have to know what palliative care is,
in order to ask for it.”
Prof Jane Seymour
“Health literacy isn’t a patient’s problem, it’s a healthcare professionals’ problem” Dr Diane Meier
“Science tells us nothing
about the individual” Dr Susan Pinker

12. Women’s College Hospital Institute for Health
System Solutions and Virtual Care (WIHV)
hosted a Dragon’s Den-style pitch competition to
identify startups that could address needs of
patients and providers in Family Practice at
Women’s College Hospital
Dr Onil Bhattacharyya Senior Scientist,
Women’s College Research Institute
Dragon’s Den ‘host
Leadership

13. Dragon’s Den ‘Win’
“The family health team is interested in enhancing
the patient/user experience of BestEndings”
Patients asked to evaluate:
• Usability
• Relevance
• Helpful
Betty Chen, Family Doctor
BestEndings Dragon’s Den Champion

14. Proposed Solution
• Evaluate an end-of-life planning resource developed from
the layperson/patient’s point of view
• Written in plain language, with links to evidence-based
research and multi-media resources
• Blog posts about palliative care, palliative care health
professionals, and patient experiences
• Shared Decision-Making tools

15. Domains measured
• Usability
• Impact
• Relevance

16. Open Ended Questions
• Which topics were helpful for understanding
end of life issues
• Which content was important and why
• Which topics most useful for your interests
• Why would you recommend this website

17. Process
• Ethics Review
• Eval: hard copies and eSurvey
• WCH-specific URL with link to
eSurvey
• Criteria all patient(s) interested in
providing feedback
• Dr Chen follow-up reminder call
• Additional supports identified

20. Blogs

21. Demographics
• Caregivers: 60%
• Patients: 40%
• Females: 57%
• Males: 29%
• Age 34-44: 50%
• Age 55-64: 50%

22. Was language easy to understand?

23. Was site easy to use?

24. Were topics helpful for understanding
end of life issues?

25. Do you feel more knowledgeable about
Advance Care Planning (ACP) 75% yes
yes

26. Do you feel more comfortable talking to
your doctor about ACP 84% yes

27. Do you feel content is important
to learn 100% yes

28. Have you thot about ACP in the last
6 months? 75% yes

29. Learnings
• More caregivers than patients
participated 60% vs 40%
• 29% of participants were men
• Age: divided equally 34-44 and 55-
64
• E-surveys more acceptable than
paper
• Hard to implement in Primary Care
Setting

30. Findings
Challenge of recruitment:
• Clinicians busy
• Patients have their own
health priorities: limited time
• Requires resources toward raising
awareness
• Requires support from all stakeholders

31. “People were willingly going to your website, and are
motivated to learn more. The comments reveal things
that are often hard to tease out: it indicates that a
patient-developed tool may be a safer, less intimidating
‘space and place’ for this topic than one developed by a
government, institution, organization or healthcare
professional. .”
Dr Betty Chen

32. Next Steps:
Increase awareness and utilization
• Partnership with
MedChart: Personal Health Records
Presented:
Hospice Palliative Care Ontario
Conference
• Presented:
Institute for
Healthcare Advancement (IHA)
Health Literacy Conference
Patient panelist: Toronto International Summit on
Leadership Education for Physicians.

33. Purpose and meaning
Kim ES, Kawachi I, Chen Y, Kubzansky LD. Association Between Purpose in Life and Objective Measures of Physical Function in Older Adults.
JAMA Psychiatry. Published online August 16, 2017. doi:10.1001/jamapsychiatry.2017.2145
“A sense of purpose in life, a modifiable factor, may play an important
role in maintaining physical function among older adults.”

34. What’s important enough that you you
want to do it until you die?
Living your best to the end. Inspiration• Information •Plan •About • Contact

35. kathyk@bestendings.com

36. Kathy Kastner
• Patient Advisor: Toronto International Summit on Leadership Education for
Physicians (TISLEP)
• Published:
• Canadian Medical Association Journal: Salon
• Journal of Participatory Medicine: Patient Communication Guidelines
• Journal of Palliative Medicine: Social Media Panelist
• Society of Teachers of Family Medicine (STFM) board member
• Managing Pain Video: Workshopped at STFM Conference
• Medication Safety Video: STFM Award Winner
• Author: Death Kills.. and other things I learned on the internet
• TEDtalk: Exit Laughing: on discovering palliative care
• Stanford California:
• MedicineX ePatient Scholar; Patients 2.0 Presenter