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Women’s College Hospital Institute for Health System Solutions and Virtual
Care (WIHV) and BestEndings.com
Evaluation of the first patient-created website for end of life education
Kathy Kastner: creator of BestEndings• Hospice and Palliative Care of Ontario: Leadership Track Presenter
• Institute for Healthcare Advancement; Breakout Session:• Health Literacy and End of Life Planning
• Journal of Palliative Medicine: Social Media Panelist
• Author: Death Kills.. and other things I learned on the internet
• TEDtalk on discovering palliative care
• Stanford California: MedicineX ePatient Scholar; Patients 2.0 Presenter
• Published:• Canadian Medical Association Journal• Journal of Participatory Medicine
• Society of Teachers of Family Medicine (STFM) board member• Managing Pain Video: Workshopped at STFM Conference• Medication Safety Video: STFM Award Winner
Dragon’s Den Objectives
BestEndings Champion, Dr Betty ChenEvaluate three domains:– Usability– Impact– Relevance
• Patient/caregiver input to inform next iteration
• Patient/caregiver input to inform a pivot
The Objectives: were they met?
• Evaluation of three domains– Usability = confirmed– Impact= confirmed– Relevance = confirmed
• Patient/caregiver input to inform next iteration:RESULT: MINOR MODIFICATIONS• Patient/caregiver input to inform a pivot:RESULT: No pivots identified by input
End of Life (EOL) an important topic? yes 100%
Is BE content important very 25% extremely 75% Is BE easy to understandvery 9% extremely 91%
Is BE content helpful very 33% extremely 67%
Is BE easy to use very 33%extremely 67%
Do you feel more knowledgeable about ACPsomewhat 17 % no 8%
yes 75%Do you feel more comfortable talking to your doctor about ACP
somewhat 8% no 8% yes 84%
Have you thought about EOL in the past 6 monthssomewhat 17% no 8%
yes: 75%
Final Results
Participation and Pivot
• Met anticipated progress with patients/caregivers
• 13 electronic surveys • 1 hard copy received• None from physicians• Improvement feedback to be incorporated• Pivot point: Objective pivoted from:
Evaluation to Proof-of-Concept
Demographics• Caregivers: 60%• Patients: 40%• Females: 57%• Males: 29%• Age 34-44: 50%• Age 55-64: 50%
Q4 (cont’d)Which BestEndings topics were helpful for understanding end of life issues
• Crying & grief before I'm gone. Living Will• All of them! These are all VERY important topics that deserve more
attention• Shorter text provides valuable information without reading 10 pages.• Advance Care planning and Advance Directives. This is a simple guide
for decisions that are important and helped me to realize about options and choices I may have in a situation where my family members are to make decisions for me.
• Consent, Conflict and Decision-Makers - the tough decisions are crucial to making sure a person's wishes are adhered to.
• It was comprehensive. • Talking with family members to express our wishes.
Q4 Which BestEndings topics were helpful for understanding end of life issues
• 1) Advanced care planning good information and directions on how to go forward
• 2) Love the reframing-focus on accomplishments to celebrate and hoping for nice quality of death etc. Things you can control
• 3) Medical decisions, end of life blog, simply because I never knew how much choice I have
• 4) The site as a whole was extremely thought provoking and provided useful information I didn't even realize I was in search of!
• 5) The topics and advice suggested are not typical conversation pieces, but are undeniably important to discuss
• 5) The range of choices that are available and the topic concerning advance planning. Also, the discussion about the types of questions and issues that emerge towards end of life was valuable to see laid out
Q5 Do you feel content on BestEndings is important to learn
• 1) End of life planning for family as patient is important
to understand and plan early• 2) Personal decisions, "I am the boss" never thought of
that before• 3) Any topics that initially make people uncomfortable
are often the ones that need the most attention. • 4) The content of best endings offers useful
suggestions and tips on how to address such personal and emotional issues
Q6 Which content important and why
• Eventually everyone will deal with it either for themselves or someone they care for.
• Research topics and articles provided helpful learning material and guidance.
• Better understanding of what palliative care is and is not
• EOL decision making because it saves families. • All are relevant
Q11 Why would you recommend this website
• It is easy to navigate, interesting to explore, and
the information is so very necessary to learn• It is written very plainly and identifies key
issues well• For someone who is completely not exposed to
end of life topics, this is an easy website and info here is easy to digest.
Q12 Which topics most useful for your interests
• Real stories about real people• Caring for aging parents, Overcoming Depression • The big picture recognition that its what matters to the
individual, that there's lot of emotional baggage to have to contend with
• It’s complex working things out with everyone (family, friends) who cares ABOUT you and making sure that those who care FOR you perform as a team.
• Planning medical decisions. All of them are important for informed decision making
Project Specific Impact Measures
Patient empowerment or knowledge Understanding wishes, will or arrangements • We believe the BestEndings.com website has
the potential to reduce each of these adverse outcomes. In so doing, the health and societal impact could be profound.
Conclusion• BestEndings.com gives patients and families a better
understanding of end of life issues• Patients and caregivers feel content on
BestEndings.com is important to learn• BestEndings.com increases patients and caregivers
knowledge about Advance Care Planning• BestEndings.com helps patients and caregivers feel
more confident in speaking to their doctor about ACP• Patients and caregivers feel end of life is an important
topic
