Advocating for Hospice Online

A Advocating H ospice Online
H for
National Hospice and Palliative Care Organization’s 27th Management and Leadership Conference
Saturday March 31, 2012 11:45am - 12:45pm (Session 12D)

Renee Berry Vanessa Callison-Burch
CEO, BeMoRe Executive Director, What Matters Now
renee@gobemore.org vanessa@whatmattersnow.org
@rfberry @vcb

Do hospice organizations
need to be participating
on online platforms?

W
Which online platforms
will advance
organizational goals?

Simply, these ones. This is what we will
review today.

(just kidding!)

But how do you make it
all ﬁt together?

the good news is...

Y C
But howC an make it
You do you
all ﬁt together?
se
t he
ll of
u ta
it ho
w

before we get into the details

h
... hello

LLet’s take a
second to
introduce
ourselves.

Renée Berry
• Co-Founder of the #hpm TweetChat, an
online interdisciplinary forum on
Twitter about hospice and palliative
care

• Chief Executive Ofﬁcer of BeMoRe, a
Silicon Valley startup with a mission to
foster passion empowerment

• 4th year attending NHPCO’s MLC, 1st
year presenting... honored to be here!

• Passion for making a difference in the
@rfberry
ﬁeld; started as a hospice volunteer

• Disclosure: Provides public engagement
consulting services for online presence
development

Vanessa Callison-Burch
• Became a hospice volunteer in high school

• Loved hospice so much that I thought I
might become a hospice social worker

• Ended up in a career in technology
instead; currently work in Silicon
Valley in software engineering

• United my love for hospice with my
experience in web development by co-
founding a nonproﬁt to provide free
personal websites for hospice and
@vcb palliative care patients and their
families

• Passionate about helping transform our
culture’s relationship to life-changing
illness and death & dying

(back to this question)

W Which online platforms
will advance

(back to this question)

W Which online platforms
will advance
... in hospice.

Today, we’ll discuss:

Online Tools Supporting
Patients and Families
Hospice Collaboration
Engaging a National
Participatory Audience
Around Hospice
Online Tools for Hospice
Community Engagement

Today, we’ll discuss:
Starting with

Engaging a National
Around Hospice

Online Tools for

Supporting Patients and Families
Online journals: Free, personal and private
websites that connect people experiencing a health
challenge with family and friends:
www.caringbridge.org

Shared care calendars: Free community
websites to help manage the daily tasks that
become a challenge during times of need:
www.lotsahelpinghands.com

Digitized memories: A free way to organize,
share and discover old photos and memories of
family and friends: www.1000memories.com

Space for reﬂection: Free, personal, private
websites which celebrate and honor people going
through life-changing illness:
www.whatmattersnow.org


Case study: What Matters Now
Provides free personal websites which support
patients & families to:
- Come together to love, honor and remember
- Share what’s happening
- Coordinate support
- Nourish their spirits, reﬂect, and cultivate peace

Life-changing illness
calls us to focus on

what matters now


Benefits
How do What Matters Now websites benefit
hospice and palliative care programs?

serving the emotional & spiritual needs of patients & families

raising donations for palliative care & hospice programs

a natural form of community outreach
community outreach

igniting conversations about end of life care choices


Features
What’s in a What Matters Now website?
Updates: Saving caregivers the challenge of repeating news over and over again on the
phone. Keeping everyone informed.
Guest Book: Messages of love and support from family and friends that can be savored
again and again.
Photos: An online album of favorite photos added by the patient and by family and friends.

Reﬂections: Questions that spark important conversations about a patient’s life story,
favorite things, and insights into life’s big questions.
Lend a Hand: Questions that guide caregivers and patients to express what support they
need from family and friends.
Resources: Books and websites that help people learn about living with serious illness,
caregiving, planning ahead, and expressing what matters most.
Donations: An easy way for friends and family to give ﬁnancial support to the program
caring for their loved one.


Dave’s Story
How does What Matters Now benefit patients?

Throughout the spring and summer of 2011,
Dave shared his experience of dying and his
memories of the most important moments of
his life on his website. He no longer had energy
for phone calls and visits, yet friends from
throughout his entire life came together on the
website and poured out hundreds of messages
expressing what Dave had meant to them.


Dave’s Story

“ Thank you for creating this website. What gets
me out of bed in the morning is the desire to
check for updates. It’s a wonderful gift you have
provided me.

Dave W.
in an email to Vanessa & team, April 2011


Dave’s Story

“ My hope is that my experience will help some of
you deal with the inevitable. Somehow, during the
last three months, I have found a lot of joy and a
sense of adventure in this process.

It’s a beautiful world.

Dave W.’s final message
posted to his website by his wife on the day following his death


Dave’s Story

“ Thank you so much for providing Dave with the
opportunity to share his end of life journey with
his loved ones. I believe the correspondence
extended and enriched his life and will be with us
always. It was truly extraordinary.

Rebecca W., Dave’s wife
in an email to Vanessa & team, December 2011


Benefits
How do What Matters Now websites benefit
families and friends?

Manageable Communication

Meaningful Connection

Comfort


Manageable Communication

“ I have an Aunt who is cared for by her daughter-in-law in
Mississippi and it warms my heart to know that all I have to
do is open my email and ﬁnd an update on my Aunt, sent
by her website. It makes it so much easier on my family
here in Indiana to know how she is doing every day without
the long distance phone calls which as you know can rack
up one’s phone bill. I wish this site would have been
around in 2008-2009 when my father was in hospice care. It
would have made it so much easier to update all family
members at one time.

Cyna R.


Meaningful Connection

“ My mother died in February at only 63, of cancer.
At a time when we were dealing with the eventual
loss of our loved one, our website brought our
family closer and made it easy to keep everyone
updated. It was comforting to see loved ones'
posts, memories and pictures.

Stacy W.


Comfort

“ I came upon this website while trying to distract myself from the
heartbreaking task of caring for my Mom who was dying from lung cancer.

The website was perfect because I found it when Mom no longer wanted
to speak to or see anyone other than my sisters and myself. It helped keep
everyone informed on Mom's condition without me having to repeat it over
and over. At the end of each day, I would read the comments written in
Mom's guest book. I felt comforted reading the lovely words about Mom,
and Mom enjoyed when I would read them to her.

Mom passed in the early morning of October 1. And as much as I miss her
and hate that she had to experience the agony of cancer - I'm grateful for
the Hospice team and our website. It made a terrible time just a bit more
bearable.

Jenny M.


Getting Started
Tips for implementation at your organization
- Check out various online tools and choose your favorite(s)
- Share information with your volunteers, social workers, spiritual care and
other staff
- Provide talking points to your staff so that they can introduce the
websites to families
- Include a ﬂyer in admissions packets
- Train volunteers to help patients set up their websites if needed
- During IDT meetings, ask which families would beneﬁt from a website
and identify who will let them know about it

Next, we’ll discuss:

Online Tools for Enhancing
Hospice Patient-Family
Communication Hospice Collaboration
Engaging a National
Around Hospice

Tools for

Enhancing Hospice Community Engagement

Print Website Blog Social Media

Traditional New

Most hospices understand Some hospices understand
these tools as a necessity. these tools as a necessity.

Many are recognizing the importance of social media but
are unsure about where to start and how to
effectively manage time for an engaging online presence.

Tools for



Traditional New

Most hospices understand Some hospices understand
these tools as a necessity. these tools as a necessity.

The bottom line is, they are all important.

Tools for



Traditional New

If you’re here And interested in also being... Here

So where do you begin to move forward?

Tools for



One-Way Messaging Conversational

Pushing messages at people on conversational platforms is not effective.

Begin by understanding the major difference among
these tools.

OnlineTools for


Facebook

Website Blog Social Platforms

Utilizing a blog as an engagement platform will enhance your organization’s
ability to provide content for other social platforms.

Hospice Community Engagement Platform Spotlight

Blogs
Websites tend to have stagnant information and at a certain point organizations
run out of opportunities to be content providers without a blog.

Blogs are a huge opportunity for hospice organizations to feature their stories. Blogs are less
formal than websites but an extension to what can be amplified with social media.

Do Don’t
• Feature stories of hospice having an • Duplicate a tone from traditional press
impact on a patient and family experience releases or marketing brochures

• Provide answers to common questions • Try to have one person do all the writing
from patients and families

• Feature patient or family stories without
• Respond to interesting and articles from written consent
the traditional media

• Forget to measure progress over time
• Highlight topics and articles published in through increased publication frequency
scientiﬁc journals and blog analytics

OnlineTools for


How important is Facebook to hospice?
Facebook provides an unprecedented opportunity to build and
Facebook accumulate an audience.


Google and other online advertisements have provided an opportunity for
increased online traffic to hospice websites. Now, Facebook Ads and
Facebook engagement provides an opportunity to maintain individual’s
attention towards a topic or issue in a different way than ever before.


Facebook
The real value in utilizing the Facebook platform is through Facebook pages.

Do Don’t
• Sign up for a “group” or a personal page
• Utilize the Facebook Page feature
for your organization

• Plan ahead with an editorial calendar
• Post less than once per week

• Engage with organizations and news
• Assign page management on top of
outlets in your local community
someone’s position without properly
allocating time for quality implementation
• Track progress and analyze success and
opportunities for improvement
• Forget to invite and moderate
commentary

OnlineTools for


What is Twitter?
You’ve probably heard of the micro-blogging site with limited
characters in messaging. What do you say in 140 characters?


Headlines. (and) Professional public conversations.

There is incredible opportunity for engaging public understanding of
hospice and palliative medicine through these open conversations.


Twitter
Twitter provides an unprecedented opportunity to connect with a new
audience.

Do Don’t
• Understand Twitter is the best opportunity to • Have Facebook auto-posts to Twitter
engage new individuals in your work

• Forget to Re-Tweet other individuals and
• Remember Twitter values the people behind organizations, comment and say thank
the brand & an authentic voice
you for message ampliﬁcation

• Remember listening ﬁrst and engaging in Re-
• Think effective engagement can be done
Tweets is an effective way to get started
without understanding platform culture

• Utilize platform tools such as Hootsuite once
you’ve established a base understanding of • Have multiple branded accounts without
Twitter appropriage resources (true for fb too)

OnlineTools for


What is LinkedIn?
An online platform for maintaining professional connections.


LinkedIn is a great alternative to connecting with colleagues and
professional contacts on Facebook. Often people invite Facebook
connections without realizing the culture of personal connection on the
platform. It is more professionally acceptable to maintain professional
connections on LinkedIn (ESPECIALLY with manager’s direct reports).


LinkedIn
LinkedIn is a great opportunity to maintain professional contacts. It ensures
you can stay connected with professionally relevant people without manual
maintenance of your contact database (like Outlook contacts).

Do Don’t
• Think LinkedIn is just for people looking
• Connect with friends and professional
for a job
contacts. Invite people you meet at
conferences.
• Think being on MyNHPCO is a reason to
not engage on LinkedIn
• Remember your network can be beyond
hospice and palliative care professionals
• Request to connect with people you don’t
know
• Occasionally share professional resources

• Underestimate the importance of
• Maintain appropriate proﬁle information as
providing your picture and appropriate
you progress through your career
work history information

OnlineTools for


Video Platforms
YouTube is one platform to utilize for video engagement. An
alternative effective platform is Vimeo.


Video is an underutilized opportunity for engaging the public in the
utmost importance of the role of hospice in quality healthcare
implementation. One strategy for video engagement is to utilize video clips
for a quick soundbite to help peek interest in a topic, following up with
a blog post or web page with further resources for understanding.


YouTube/Video Platforms

Do Don’t
• Forget videos can be used across
• Embed videos within platforms (rather
platforms: website, blog, and Facebook,
than linking externally to videos)
ampliﬁed with Twitter & LinkedIn

• Utilize (and embed) relevant videos even if
• Produce video clips longer than two
your organization didn’t produce them
minutes. Ideal length 30seconds to 1:15

• Utilize video to answer questions that may
• Focus on driving trafﬁc to the video
seem basic to you or your organization
platform

• Interview people in a variety of disciplines
• Worry about audience accumulation on
and positions within your organization
the video platform

Finally, we’ll discuss:

Engaging a National
Around Hospice

Hospice Engaging a National Participatory Audience

Responding to the New York Times

“
She preached the gentle gospel
of her profession, persuading
patients to confront their
illnesses and get their affairs in
order and, above all, ensuring
that their last weeks were not
spent in unbearable pain.

The doctors began to understand the
extent of her underlying cancer, “they
asked me if I wanted palliative care to
come and see me.”

She angrily refused. She had been telling
other people to let go. But faced with
that thought herself, at the age of 40, she
wanted to fight on.

Link to article here.

The New York Times clearly missed many important aspects in this article about the
end of life of a palliative care physician, Desiree Pardi.



An incredible professional discussion began in the
comments section of Lyle Fettig’s post on PALLIMED.

“
posted here on PALLIMED

Unfortunately, the article's overall theme undercuts
the idea that patient autonomy and goals of care are
central to palliative care in spite of giving a ﬁne
example in Dr. Lim's efforts. Rather, palliative care is
painted as existing mainly for the purpose of cajoling
patients to accept the unacceptable and to "be ok"
with the idea of receiving only therapies oriented
towards comfort. Lyle Fettig M..D.


Robert Pardi, Desiree Pardi’s husband, adds to the
discussion in the comments section of Lyle Fettig’s

“
post on PALLIMED. Robert Pardi’s full comment here.

I am Desiree's husband and while I appreciate the numerous comments posted
and the fact that this "story" has generated so much discussion, I need to convey
that the article was very misleading and that many of the take away messages are
wrongly presented.

My wife, knowing her life was going to be shorter than most spent her remaining
years preaching the value of Palliative Care; something she herself accepted in her
life.

The problem is most people lump Palliative Care and end-of-life care as one ﬁeld
of medicine. They are two separate disciplines. Second Palliative Care is about
providing symptom support throughout all stages of a chronic disease, it is about
providing patients with a full understanding of their condition and treatments so
they can live a life they want.
Robert Pardi



Robert Pardi’s full comment here.

Can you imagine responding on a blog to an emotional
“journalistic story” about your spouse, written just following
their death? ... a blog?!

Seeing the (live) thoughts from leaders in the ﬁeld AND
Robert Pardi’s insightful and appropriate commentary
featured on a blog was a deﬁning moment for me in
understanding the value of blogs as professional platforms.
-renee berry


FDA Limits Liquid Morphine
1. 2.

Full presentation here.

3. 4.


Modern Healthcare Big Impact Tournament

“
Modern Healthcare asked its readers to vote online on its website,
ModernHealthcare.com, for the person, event, organization or innovation

”
that they thought had the biggest impact on healthcare over the past 3
decades. Every two weeks, the ﬁeld narrowed by half until the
championship round, which ran from June 13-24, 2011.

via Modern Healthcare Big Impact Tournament

How To Play

The hospice
community online
came together each
voting round to vote
for hospice.



Hospice Wins!

http://www.modernhealthcare.com/article/20110725/SUPPLEMENT/110729979/-1



“ By a nearly 3-to-1 margin, Hospice Care defeated the
Institute for Healthcare Improvement as the one person,
event, organization or innovation that had the biggest
impact on the healthcare delivery system over the past
35 years. The ﬁnal score was 1,968 to 682.

Hospice Care, a No. 12 seed in the
Innovations region, is a widely embraced
model for compassionate care for people
facing a terminal illness.
via Modern Healthcare Big Impact Tournament


#hpm TweetChat Visual Example:
A weekly interdiciplinary forum discussing
hospice and palliative care topics.

Founded in July, 2010 #hpm was the ﬁrst medical TweetChat

spericalty TweetChatThe ﬁrst medical specialty
TweetChat.
Over 40 million impressions generated from the
#hpm hashtag from over 50,000 thousand tweets
and more than 3,000 contributors since February
2011. What is it?

The #hpm community has people from all over the
country and even some international participants. The
backgrounds and interests are very diverse, including,
nurses, sociologists, physicians, hospice or palliative
care patient's family members, health policy
professors, entrepreneurs, social workers, healthcare
executives, human rights advocacy organizations,
hospital departments, healthcare organizations,
chaplains and online community advocates.


#hpm TweetChat (via PALLIMED)


#hpm TweetChat

“ So excited to connect to other professionals who
are also passionate about end of life issues.

I am hoping to enter a PhD program with a focus
on end of life communication and the discussions
on #hpm give me an idea of the current issues in
the ﬁeld.

Lizzy Miles @_Lizzy_


#hpm TweetChat

“ I'm not entirely sure what compelled me to join the
inaugural #hpm chat, but it has literally changed the
course of my career.
literally changed the
course of my career. I was curious how one could build
community about dying. How little I understood then and
how far I've come in my understanding is due to a large
part because of the continuing education #hpm provided
and led to my being engaged as the community
manager at www.VirtualHospice.ca.

Colleen Young, @Colleen_Young


#hpm TweetChat

“ #hpm is the most welcoming group on Twitter. I
particularly appreciate the efforts made to include all
disciplines of health care, palliative care and people
who know nothing about #hpm.

Colleen Young, @Colleen_Young


#hpm TweetChat

“
I'm supportive the of the #hpm tweetchat, but ﬁnd
myself lurking more often than actively participating. I
live on the east coast and ﬁnd that by 9-10PM my brain
is tired. I spend all day thinking about these issues and
by 9-10PM I'm either reading for pleasure, watching a
Red Sox game or getting ready for sleep (I'm at work at
6:30-ish in the morning).
I do enjoy the diversity of participants and topics and I
do share comments and ideas with my Palliative Team.

Beth Arnold, MSW @emarnold14


#hpm TweetChat

“ I want to thank all of you for your dedication and
passion for this topic. Both of my parents died of
cancer and both my husband and myself are cancer
survivors. I fully intent to utilize early palliative care if/
fully intent to utilize early palliative care
if/when the time comes. None of us ever know when
when the time
that will be. It's essential that this topic become part
of everyone's health vocabulary in a positive way.

Jody Schoger, @jodyMS


#hpm TweetChat

“
I am interested in educating cancer survivors about
the beneﬁts and beauty of early palliative care and
end of life issues.
have been impressed from the beginning with the
I have been impressed from the beginning with the
passion the majority of participants hold for the their
passion
chosen ﬁeld. At the same time, I've been equally
impressed and (occasionally alarmed) by a number of
clinicians (often social workers) who really have no
sense of what serious/terminal illness is like for patients
and their families.
Jody Schoger, @jodyMS


#hpm TweetChat

“
#hpm tweetchat is so important! It stimulates much
needed discussion about issues related to serious illness
& end of life care among a diverse group of clinicians &
non-clinicians. I enjoy the opportunity to network with
others, learn, and hopefully teach others.
Being a part of a community of people who believe in
what hospice & palliative care can do for patients,
their families and the healthcare system is refreshing
and exciting.

Alicia Bloom, MSW @aliciabloom


2010 National Hospice Month Video

An example of national project made possible by connections
and online collaboration to raise awareness during National
Hospice Month in 2010.


AAHPM & HPNA Annual Assembly 2011


Other Hospice Tweets on Social Media

A Advocating H ospice Online
H for
National Hospice and Palliative Care Organization’s 27th Management and Leadership Conference
Saturday March 31, 2012 11:45am - 12:45pm (Session 12D)

Questions?
Renee Berry Vanessa Callison-Burch
CEO, BeMoRe Executive Director, What Matters Now
renee@gobemore.org vanessa@whatmattersnow.org
@rfberry @vcb

Advocating for Hospice Online

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