BestEndings.com: 'Dragon's Den' results of patient evaluation

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
kathyk@bestendings.com

Dragon’s Den Objectives
BestEndings Champion, Dr Betty Chen
Evaluate 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 understand very 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 ACP
somewhat 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 months
somewhat 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

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