Sending the Card

Today is Valentine’s Day. 

As a child, I rather dreaded this day as would have to laboriously write 30 names of my fellow students on their cards.  I did however cherish the cards I received in return and still have some from 1983 in my memory box.   Cards can make you feel so very wanted and loved.

As I worked this year with my son Isaac on his Valentine’s cards for his third grade classmates, we discussed the many ways he could show his friends that he cared for them.  We also began a rather deep conversation about subtext.  We talked about the facing message that is obvious in a card but there is often a deeper subtle message underneath.

In February of 2013, I began a campaign on Change.org and on Twitter to encourage Hallmark to have a line of hospice cards.  The idea came out of a tweet chat that TedMed hosted that year.   Major media sites reported the campaign that spring.  Hallmark did consider my proposal and made their search engine a bit more user friendly for families looking for cards appropriate for hospice, but they did not create a hospice card.  A competitor, Greeting Card Universe, ended up making 24 different types of hospice cards in the spring of 2013.

When I attended HIMSS in Louisiana in March 2013, I brought materials to begin creating a large hospice card prototype for Hallmark.  So many people who attended the Patient Engagement Track signed the inset that would accompany the card. 

When The Walking Gallery gathered on June 2, 2013 in Washington, DC attendees from all over the nation signed the card insert we planed to give to Hallmark.

When I spoke at KUMC in Kansas City, Kansas in September 2013, I brought the card elements with me.  With help from the amazing folks at KUMC we assembled the card right there in Kansas only miles away from Hallmark Headquarters. 

My dear friend Jari Holland Buck, Walking Gallery Member and patient advocate took the over-sized card to the Hallmark Headquarters in September 2014.  We had tried to arrange an official hand-off in 2013 but were unsuccessful.

 At approximately 11:30 am Central time, September 5, 2014, Jari delivered the hospice card we assembled at KU Medical Center. Jari did try to find the “right” person to accept delivery of the card to no avail.  She hoped a spontaneous visit would net results.

Prior to arriving, Jari verified that they still lacked an identified presence in the hospice cards. Their website stated the following, "These cards are available within several different lines in any store that carries Hallmark products.  But because they haven't typically been displayed together, and because not every store offering Hallmark products carries every card we produce, these cards can be difficult to find. Late last year we began offering new displays to group these cards in a "tough times" zone with signs to help shoppers find them.  These new sections will be appearing in many Hallmark Gold Crown stores throughout 2013."

The front desk security guard asked Jari to leave the card as she was making an “unscheduled delivery.” Jari refused, saying that there was too much pain and too many people behind this gesture to simply pass this work to Hallmark anonymously.

 Jari suggested several possible recipients to the security guard. The security guard responded that she didn’t have the names or roles of department employees. Jari suggested that Media Relations might be a good direction.

Linda Odell, (whom responded to my initial request via several reporters in 2013) Manager of Media Relations, personally accepted delivery of the card.

This is what Jari told Ms. Odell:

“My name is Jari Holland Buck. I am a Patient Advocate and member of Regina Holliday’s Walking Gallery. I am here today on behalf of all hospice patients, past, present and future, as well as the family members who care about and the caregivers who care for them. Facing death is one of the most difficult challenges any of us will face, whether it is ours or that of someone else.

Hallmark has helped us with our inability to express the right message and continues to do so by offering cards that are “appropriate” for those in hospice. When I walk into a Hallmark store to purchase a hospice card, this is not a fun trip. I do not wish to search through the racks or be escorted by an employee who may or may not know where to source the appropriate card on the racks. This is hard enough for me to acknowledge and I just want to get in and get out.  Hallmark has neither clustered these cards in a meaningful way in the stores nor offered a line specifically dedicated to this painful experience.

On behalf of Regina Holliday, members of the Patient Advocacy Walking Gallery, our local community and caregivers throughout the US, please accept “our” card asking you to dedicate your time and attention to this issue.”

Ms. Odell responded that she was working on correspondence with www.caringbridge.org/ for a co-branded line of cards.  She was working on this at the very moment she was contacted by the security guard and thought the timing was fortuitous. Jari asked if Ms. Odell if she was aware of my petition and she said, “Yes. Regina was the one who initiated the change.org petition for hospice cards.”

Ms. Odell stated that hospice cards were still not grouped within Hallmark stores and was aware that there had been “issues” with shelf talkers / inserts that identified their presence within the racks.

Jari told Ms. Odell that she was serving as an advocate for a hospice patient. Jari knew, from personal experience, what it was like to visit a Hallmark store seeking these cards. Jari explained how awkward many of her client’s friends and family members felt expressing themselves to the dying patient.

Ms. Odell acknowledged that the point “This is not a happy trip to the card store and I am not here to shop or laugh,” was a valid one and one not previously considered to her knowledge.

She also said she knew 15 people who needed to see the card. They were spread widely throughout the organization. Ms. Odell then asked for a copy of Jari’s explanation of the card, which Jari willingly provided.

Today is Valentine’s Day and Jari sent me a card.  I don’t get many cards on Valentines day and I thank Jari for being such a great friend.  Her card encouraged me to write this post today and report on the Hospice Card saga of the past 2 years.

Which encouraged me to think about subtext.

I realized that I began demanding cards for our loved ones who are dying in February the month of Valentine’s Day.

I am a Widow. This is a hard month for me.  My thoughts turn to love and loss.  My request to Hallmark is that same as it was two years ago.  Help make a time that is so very sad be filled with love.  I don’t want a memory box just filled with Valentines.  I want to see some hospice cards.

So I write this post today and will tag it with #HealthPolicyValentines.  

Be the change you wish to see.  Never forget you can change health policy with a simple greeting card. 

Hospice cards: Greeting Card Universe Steps Up

I wanted to post an update in the continuing saga of my request for Hallmark to create hospice cards.   At this point the petition has over 4,000 signatureson Change.org.  While Hallmark has yet to create a card to fill this gap, Greeting Card Universe has created 24 hospice cards for friends and family of the hospice patient to use.  I was overjoyed to hear this!  This is another step closer to getting such cards in stores.  You order Greeting Card Universe Cards online, but you can pick them up in your local Target store.  Isn’t that wonderful?  Mindy Rosso-Gaemi, community manager at Greeting Card Universe heard our original plea and decided to do something about it.  She created the hospice category and several fields of card types.  She then asked her artists to use their talent and life experience to create some cards.  These lovely cards are the result.

I loved the heart-felt truth and honesty of this card:

http://www.greetingcarduniverse.com/occasions/goodbyefarewell/hospiceendoflifefinalgoodbye/religious/christian-saying-goodbye-end-of-1072816

And though it may have not been the intent of the author, this one with “You Are Not Alone” made me chuckle and would warm the heart of any Doctor Who fan.  So my friends Michael, Rebecca and Will if you ever enter hospice I am totally sending you this card!

Thank you Mindy and all the artists at Greeting Card Universe for making the end of life a little brighter.

Full press release below:

Greeting Card Universe Offers Greeting Cards for Final “Good-Bye” to Hospice Patients & “Thanks” to Hospice Nurses

San Francisco, CA – (May  1, 2013) – In celebration and support of National Nurses Day on May 6th, Greeting Card Universe, the world’s largest greeting card store, announces its new collection of hard to find and uncommon cards for patients in Hospice Care – affording loved ones the words and sentiments to say a final “good-bye”.

“Together with regular nursing duties, hospice nurses provide palliative care to terminally ill patients,” says Mindy Rosso-Gaemi, Community Manager at Greeting Card Universe. “A hospice nurse not only helps a dying patient going through a distressing  and often times frightening period, but shows the same level of caring and compassion in comforting the patient’s family and giving emotional and spiritual support when it’s needed most.  A special ‘thank you’ card for a nurse or caregiver is a wonderful way to express gratitude to these special individuals”.  Greeting Card Universe has a popular collection of over 1,000 Nurses Day cards. 

Hospice care was first established in the 1970s. At the time, cancer patients made up the greatest number of recipients. Today, thanks to advances in medicine, less than 50 percent of hospice admissions are due to cancer. An estimated 1.65 million patients receive hospice care in the United States each year.

 “Hospice patients need to hear from family and friends,” says Rosso-Gaemi. “They need to know they’re loved and won’t be forgotten, and that it’s okay to let go.  For most people coping with a dying loved one is too difficult. They fear of saying the wrong thing and are at a loss for words so say nothing at all at a time when any words would mean so much.  Not taking the opportunity to connect is a regret they’ll likely carry for the rest of their lives.”

Greeting Card Universe offers sympathetically designed Hospice Good-bye / End of Life cards created especially to give to hospice patients, providing a starting place for a loving, therapeutic conversation or a final good-bye.  The new collection of cards was inspired by the plea of Regina Holliday, artist, widow and healthcare advocate, who publically petitioned Hallmark to create a collection of Hospice End of Life greeting cards. 

 “Where Hallmark stumbled, Greeting Card Universe has risen to the occasion offering a new collection of cards to serve this niche market,“ shares Rosso-Gaemi.   “It’s not always about what’s politically correct or the size of the market, but instead if there’s a real need for expression.  Once shoppers discover the variety of cards we offer, they’ll never shop anywhere else. ”

Greeting Card Universe put the request for hospice cards out to their community of 5,900 artists.  Within two weeks the new collection emerged with over two dozen cards and more to come.  Many of these artists drew upon emotions and experiences of hospice care and their own lost loved ones.  The creations carry their tender words of thanks, good-bye and prayer for others to express when the words don’t come easily.

Ordering online from Greeting Card Universe’s collection is easy and convenient.  An added convenience for last minute shoppers, cards can be ordered online and picked up— usually within one hour—from most Target stores across the country. 

Greeting Card Universe’s traditional and niche offerings of over 589,000 cards gives nod to the importance of choice and personalization in today’s marketplace and stays true to its tagline “any card imaginable.” 

Explore more uncommon holidays and occasions on the Greeting Card Universe blog.   Mindy Rosso-Gaemi is available for guest blogs, radio and TV interviews on this topic and other uncommon occasions and holidays.

About Greeting Card Universe
Greeting Card Universe (www.greetingcarduniverse.com) is a division of BigDates Solutions, a private company that provides consumers with unique, personalized services for any holiday or occasion. Greeting Card Universe is the world's largest paper greeting card store, offering an unlimited selection of custom greeting cards, birthday greeting cards, photo cards, invitations, and note cards. BigDates Solutions is the leading provider of Online Reminder Service Solutions, powering gift-reminder services, including 1800Flowers.com and FTD.com. The company is also the owner of Birthday Calendar, a Facebook application with over 42 million installs.

Contact:  Mindy Rosso-Gaemi Mindy.Rosso@bigdates.com                                                                                                            

A Hospice Card at HIMSS13

I talk about HIT (Health Information Technology) often.  I am very excited about the potential for HIT to allow patients better access to information so they can make decisions about their health.  I attend a lot of policy meetings on the subject of HIT and the subject of patient safety.  Those conversations are wide-reaching, but one topic that is rarely touched upon is end of life.

Like many people in our culture, policy folks often side step this conversation in favor of a safer topic like “disparity.”  We can have in depth discussions about the need for a reduction in hospital readmission, but not address the panic readmit of a hospice patient when the family is ill prepared for the final days.  I can watch a room full of people hash through clause after clause on Meaningful Use regulations and see them barely touch upon transmission of advance directives.

So, I am bringing a large hospice card to HIMSS13.

HIMSS 2013 Annual Conference andExhibition is March 3-7, 2013 at Ernest N. Morial Convention Center, New Orleans. The HIMSS (Healthcare Information and Management System Society) conference focuses on Health information Technology and Informatics.  The conference is the largest in the field of HIT and 40,000 attendees are expected. 

I will be attending and painting on site on March 5th. I will be in a special session:

 

“PatientExperience through HIT Forum” location: Room 252

Is e-engaging with your patients worth the effort? This one-day forum features three sessions dedicated to the value of enhancing the patient experience.

Making Patients Your Partners in Satisfying Meaningful Use Stage 2 Objectives: Case Studies in Patient Engagement

March 5, 2013 
9:45 AM - 10:45 AM

Description:

Speaker(s):

§  Eric Manley

§  Simeon Schwartz, MD

§  David Rowe

The Business Case for Implementing a Patient-Centered Communication Strategies
1:00 PM - 2:00 PM

Description:

Speaker(s):

§  Jonathan S Wald, MD, MPH

§  Dave Chase

 

Building Patient 2.0: Engaging People in Health through Consumer-Facing Devices and Tools
2:15 PM - 3:15 PM

§  Sandra Elliott

§  Christine Robins

§  Jane S. Sarasohn-Kahn

I am really excited to paint these sessions as I know several of these speakers and they have amazing things to say about the intersection of patients and health information technology.  I am happy that Meaningful Use does require that 50% of the time hospitals/doctors find out whether a patient has an advance directive, but I wish it were for 18 and older not just 65 and older.

Many folks at this event will be talking about the power of patient reported data and its importance in a vibrant electronic health record.  But I bet most of those folks will be thinking about data submissions as information from scales and blood pressure cuffs with wifi rather than wondering if their local HIE (health information exchange) can connect with a personal account on MyDirectives.

If you come to the session please sign the hospice card.  I plan to send it to Hallmark via a few of my Kansas City friends as an example of our support of an End-depth discussion on policies that affect us all.  

If you do not make to the Patient Experience through HIT Forum, there will be a post session tweet-up on Patient Engagement at 3:30 at the HIMSS Social Media Center.  I hope to see you there.

Hallmark is listening

Today has been an amazing day. The petition for Hallmark to create hospice cards has now grown past 1,500 signatures.

Hallmark has responded in two ways.  The Hallmark search engine now recognizes the word  “hospice” and the phrase “end of life.”  It will now send you to a card match that is as close as they could find to address the need.

They have also released a statement entitled:  “Viewpoints: Greeting Cards for People in Hospice Care.“ Screen shot below:

I wish to applaud these two steps in the right direction, but I want you to look closely at the first card they selected to address this issue;

“Cancer is tough, but you are tougher.”

This is the last thing a hospice patient with cancer wants to hear.  To often they have been told that this is a fight, cancer is a battle.  What is hospice? Losing? 

There are other lovely cards depicted in the statement, the “caring thoughts” are nice but I don’t think the last image of  “I hope you are taking care of yourself” is the best choice.   That makes it sound as though the patient could do something to rectify his/her situation if they just took better care.

We need Hallmark to take this issue of communication at end of life and hospice head on as they have for numerous topics like miscarriage as seen in this below screenshot.  This kind of clear messaging gives us permission to talk about life and death.

Hallmark also says they are rolling out a “tough times” selection of cards, but we need a clearer choice that that.  We need to see a “hospice” header right beside the “get well” and “thinking of you.”

We need HOSPICE cards.

Please sign the petition: Hallmark: Create Hospice Cards 

*********************************************************************************

Update:  One comment suggested we should offer some wording for Hallmark.  I welcome your suggestions in the comments here or on the petition itself.

What would I suggest?  First more than text some folks look at the picture.  I would love to see more faces and people on cards.  Pictures often say things we cannot says with words alone.



But what words for this?  No one said that would be easy...

There has never been a moment I loved you more,
than this moment,
in this time,
I wish we could finish this race together.
I wish I could take the baton from you,
I wish I could finish the relay in your place,

You have always been the light within my life,
and now that night is coming

Know that I will always love you.

2-24-13
Here are some ideas from @BeHereThen http://beherethen.wordpress.com/2013/02/24/end-of-life-issues-and-hospice-cards/ she gives them to folks who want to ideas of what they can say.