It seems like there’s a greeting card for everything these days: for going back to school, for anniversaries, and yes, even for losing your job. But what about a card for being in hospice or at the end stages of life? That’s the idea of a high-profile patient advocate who recently turned her attention to Kansas City. But as KCUR’s Elana Gordon reports, such a concept is not so easy to materialize.
This story was originally published online last month. Below is the audio and transcript for the radio version that aired on KC Currents March 24.
GORDON: Regina Holliday is a patient activist in Washington D.C. She mostly focuses on access to health data, and her work has caught the attention of national leaders like the health IT coordinator for the U.S. Department of Health and Human Services. But Holliday wasn’t always involved in D.C. She has fond memories of living in Kansas about fifteen years ago.
HOLLIDAY: I once ran the Jayhawk Bookstore in Lawrence Kansas.
Her husband, Fred, was earning a PHD in film studies at KU.
HOLLIDAY: “His dissertation was on buffy the vampire slayer.”
GORDON: He then taught film at American University in Washington. But in 2009 he fell ill, quickly. When he was hospitalized, they learned he was at the end stages of kidney cancer.
HOLLIDAY And so, we had this roller coaster of care for 2 months. And then it led to hospice.
GORDON: Holiday says it was such hard time. And not just because her husband was dying, but because of how isolated they felt, even from those who cared about them.
HOLLIDAY: We noticed people stopped calling, there wasn’t as much communication, it seemed like people didn’t know what to say. And you’d occasionally get a thinking of you, or a blank card, or sadly, we even got a couple sympathies. And, that was the final month of his life.
GORDON: Holliday’s husband died that spring. But over time, she realized their experience underscored a much larger problem in society.
HOLLIDAY: People don’t talk about death very much. People don’t want to say the word, the big d-word. Or talk about what’s going to happen next. and because of that we actually often leave our dying friends and family alone. And a lot of people wait until it’s far too late to have a call or a card or a visit.
GORDON: That was really troubling to her. Holliday was then reminded of her Jayhawk bookstore days, and similar to other gift shops and drug stores, one of the items that took up a big portion of the store.
HOLLIDAY: There was a whole bunch of cards, we had a huge footprint of cards.
She got to thinking, what if there were another section next to the birthday and graduation cards:
HOLLIDAY: But they also had headers that said Hospice? I think that starts the conversation. And I thought it could be extremely powerful.
GORDON: Soooo…she turned to an obvious source.
[Hallmark commercial audio]
GORDON: And petitioned the largest greeting card company in the U.S, headquartered here in Kansas City.
ODELL: I think at any given time we probably have 20,000 different cards out there.
GORDON: Linda Odell is a spokesperson for Hallmark.
ODELL: There are lots of cards that are about offering care and concern, and hoping for a good day, and praying for you.
GORDON: Odell says about 15 years ago, Hallmark came out with a line of cards for ‘difficult situations.’ There have been several variations since then. Odell is familiar with Regina Holliday’s recent efforts, and the company has issued a response. On the one hand, it made them realize how hard it was to find their cards that might be appropriate for hospice situations. In fact, if you typed in ‘end of life’ into Hallmark’s online search engine, cards from the Tree of Life line would come up.
ODELL: So, cards that were appropriate for a Bat mitzvah. Heh.
ODELL: We’ve fixed those things.
GORDON: But Odell says creating an overt hospice card line is more complicated. Odell admires Holliday’s efforts and recognizes that each person’s experience is different. But here’s the thing. They’Ve already looked into hospice cards.
ODELL: Hallmark exists exists to help people make positive emotional connections with one another. As such we obviously are always paying attention to what’s going on in society and what people are saying ot each other. But we are a reflection of that conversation. We’re not pushing the conversation forward.
GORDON: Odell says they’re always listening, but they’re listening to a lot of people.
ODELL: This is a very sensitive topic and we have to be equally alert to those who would feel like it was really inappropriate to have cards that overtly speak to hospice and end of life.
GORDON: Have you heard that perspective as well?
CHRISTOPHER: “I think they were a little afraid of it, from a business perspective. And I get that.
GORDON: Myra Christopher is founding director of the Center for Practical Bioethics in Kansas City She’s deeply involved in national policy discussions around end of life care. Back in the 90’s, Christopher met with members of Hallmark’s creative team to discuss the very same thing that Holliday is now pushing for: designing end-of-life and hospice-themed cards.
CHRISTOPHER: It was really fascinating. I mean, these are really smart people. And the team we met with were mostly young people, and we sat around a big conference table and mostly just brainstormed. And we talked about images, we talked about messages, how short but clear messages could make an enormous difference.
GORDON: Christopher doesn’t recall specifics of what happened next, except the concept just wasn’t in line with Hallmark’s plans at that point. To be clear, Christopher loves hallmark and their cards. her center has led trainings for Hallmark employees, and hallmark has funded projects at the center. Christopher is familiar with Holliday, too. She wasn’t aware of her greeting card efforts until we spoke but totally understands where Holliday is coming from.
CHRISTOPHER: There’s a real, really urgent need for honest, candid discussion at every level in our society about these issues. I just had a conversation with a quite elderly friend where I said to her, ‘I hope that your death is not prolonged and that your passing is peaceful.’ And she said, ‘I wish people would say that to me instead of saying, oh we hope you get better.’
GORDON: So I asked Christopher what she and other researchers have found are ways to help with this, on a personal level. I also asked Regina Holliday what she thinks, what kinds of messages she would want to see in cards. And the answers I got from both of them, even though the conversations were different, had a lot of similarities.
HOLLIDAY: One of the hardest things is the wish that you could take this, that you could take this from them. So, a card that will address that.
CHRISTOPHER: I want you to know how much I have loved you and valued you and what you’ve meant to me in my life.
HOLLIDAY: And just, come right out and say it.
CHRISTOPHER: In that, I’m going to miss you.
HOLLIDAY: I’ll miss you.
CHRISTOPHER: And that I’m grateful for you.
HOLLIDAY: Those kinds of statements.
CHRISTOPHER: We need to remember that this is such a precious time in someone’s life and there can be great joy, great meaning, great creativity.
HOLLIDAY: You know, the kind of things that you want to hear, that open up the bridges, that open up the conversation that’s just missing right now.
GORDON: Holliday says a funny approach could be powerful, too, if that person has a sense of humor. Christopher admits that in all her years doing this work, reaching out to someone can still be hard, even if there is a card. She says in the end, it’s not about what’s written or what’s said, but about being there. Even a note that really doesn’t say anything at all except, thinking of you, with your name on it, would be a blessing and a gift. Reporting for KC Currents, I’m Elana Gordon.