Do we need help talking about death? Two stories from the last few weeks have convinced me yet again that the answer is yes and those stories put together Hugo Chavez and Hallmark cards. A natural marriage, I know.
I’ll start with Chavez whose journey with cancer I’ve loosely followed paying close attention to what he says versus what he does. Almost every article I’ve read acknowledges that the course of treatment he followed and so forth said clearly, I am dying of cancer, but his words never did. He told a much different story about living with cancer, reasons for which would entail a level of political and personal analysis that is beyond me, but I continuously found the falsely optimistic story he told sad and empty. As a public person of great influence, he could have modeled death so differently, but perhaps he just didn’t know how. And that brings me to Hallmark.
Hallmark greetings for the Final Good-bye.
When I read this headline I assumed that Hallmark was announcing a new line of cards to serve those facing end of life, however, I quickly learned that is not the case. The article traces the on-going campaign of Regina Holliday to urge Hallmark to create a line of “hospice” cards. Her role as a caregiver for her husband during his journey in hospice care inspired and fuels her campaign. She noticed that while her husband remained in treatment for cancer they received countless cards of encouragement, blessing and prayer, but when he entered hospice the cards stopped–right when they could have used words of comfort and encouragement the most.
Her experience echoes the isolation that I heard many patients and their family members express in hospice care. Sometimes the physical isolation was necessary because of exposure to infection or because towards the end of life a person may choose to withdraw, but cards persisted as a welcome sign of love and support. When I trained hospice volunteers (a core element of the hospice team of physicians, nurses, home health aides, social workers and chaplains includes community volunteers who receive at least 16 hours of training in order to provide short periods of respite, companionship, and support to dying patients and their loved ones), I often encouraged them to send cards to the patient and family to whom they were assigned. Sending cards allowed a volunteer to introduce her or himself to a new family initially as well as maintain contact with a more private family. Our role as volunteers entailed being the face of our community to this individual and his or her loved ones; to remind them that our community as a whole values the sacred time they are facing and that illness does not diminish their inherent dignity. A thoughtful card can be a powerful emblem of that sentiment.
Beyond the comfort and dignity provided to the patient, the needs of a family caregiver at the end of life demand our attention as well. Caregiving at life’s end often concludes many years of quiet, seemingly endless, day-to-day care. The prevalence of informal, family caregiving can often astound those not currently caring for an elder. The National Caregiving Association and AARP report that 44.4 million adults aged 18 above currently care for an elder. Already in 1998, Health and Human Services reported that one in three Americans serve as an informal caregiver, a number that will only rise as the Baby Boom generation become our next elders as the CDC reports that by 2030 adults aged 65 and older will double to about 71 million. Granted, not all of those cared for meet the criteria for hospice care (a prognosis of six months or less) but many will become hospice eligible in time. In 2011, NHPCO estimates that 1.65 million patients received hospice care, which includes at least 1.65 million additional people since admission to hospice requires a primary caregiver, often a family member. From both a compassionate and a business perspective, a market for end life cards exists.
Now, I will admit, I am not actually a huge greeting card fan. I like writing my own notes rather than relying on a produced poem. So, when I read Linda Odell’s comments from Hallmark concerning why they have not developed a line of hospice cards, I initially resonated with her sentiments:
“…the company was not ruling out developing a line of greetings to address end of life but pointed out that many of the company’s current offerings, including blank and customizable greetings, could be used as a jumping-off point for starting tough conversations about virtually any situation or relationship in life. In reality, this is a really sensitive subject and a delicate line to balance. Some feel the need for a card to express these difficult thoughts, while some feel it’s inappropriate to have such cards.”
If I am honest, I tend to gravitate to the blank cards if I purchase a card at all, but I am also a writer and someone who, after more than a decade in hospice care, is comfortable with death and dying. Thus I fit the group that Odell describes, but I am an outlier. When I have conducted talks about hospice in the community, like during United Way campaigns, the overriding response tends to be deep emotion, anxiety, and a fear of saying or doing something offensive. How to best acknowledge the litany of vulnerable responsibilities in the caring relationship, such as bathing, managing medicines, assistance with walking, cooking, and dressing? How best to talk about death and dying? Blank stares. And thus, most of us may be so afraid of saying the wrong thing, we say nothing. What better time for hospice professionals, poets, and theologians to offer the general public compassionate and caring words to offer those dying individuals and caregivers we worry about?
A card can seem trivial but can be a lifeline. For example, in our hospice’s bereavement program (hospice cares for a patient’s loved ones for thirteen months after the death), volunteers send handwritten cards and make phone calls every few months. I smiled every time we received a survey back or heard from a family at a memorial service that they had read a card or listened to a voicemail right when they needed it most; seeing and hearing that someone remembered that they were grieving, that they were not alone, and that help was available 24/7 should they need it, was like a lifeline that kept them going one more day.
And so back to Chavez. I hesitate to ask what kinds of cards we could have sent Chavez since I imagine that question taking us into non-dying-related fields, but I close with thinking about how the quality of our personal and professional lives often reflects the people with whom we surround ourselves. Part of why I love the hospice model of care is because it acknowledges that we need a diversity of specialties to equip us to live life to the fullest and help us tell the story of our life and death where we are the best possible version of ourselves. I imagine that there are countless reasons why Chavez was surrounded by who he was in life and in death, but maybe a thoughtful card from the outside could have helped. Wow, I do have great optimism in the power of words.
Categories: Aging, Disability, Death, Dying, General
Uh, you seem to be missing something here.
Chavez wasn’t an ordinary person, he was a public figure, with duties to his party and his people. His obligation wasn’t to model ‘death with dignity’ or whatever, it was to keep his political movement unified, inspired and vigorous. He succeeded in that excellently, and his party is probably going to stay in power for the near future.
I dunno….it seems to me that people who act as if they don’t have cancer live longer than those who don’t. That….a certain amount of denial appears to prolong life. Is this measurably true, or is this a misperception of mine?
Amy,
I think it is hard to hold up Chavez as a model one way or the other because of the political dynamic involved with his declining health. This was a man who keenly understood the power of media and messaging (his weekly talk show ‘Alo Presidente’ is the stuff of propoganda legend). His entire political career was aimed at gaining and preserving his own political power. He cast himself as the savior and benevolent father of the people (especially the poor and the outsiders), and in many ways embodied the state. His image is everywhere in Caracas. Any threat to his personal cult status was a threat against his power – and so cancer became an insidious enemy that could never be acknowledged. Once it became impossible to hide, a narrative of defiance and resilience was employed to maintain hope and ensure that when death came, that his legacy was secured in the continuance of his party in power. Not knowing the exact nature of his illness, it is hard to know if his will to survive and fight played a role in prolonging his life.
I think the Hallmark executive is being wise in her response, that sometimes the message one wants to communicate to a friend or loved one is too personal and sensitive to not be written out in person.
It’s interesting that Oliver Stone, Sean Penn and many other celebrities were friends with Chavez.
“Already in 1998, Health and Human Services reported that one in three Americans serve as an informal caregiver, a number that will only rise as the Baby Boom generation become our next elders as the CDC reports that by 2030 adults aged 65 and older will double to about 71 million.”
Yep, all the more reason to promote procreation because children are the state’s future workforce who’ll one day defend the nation, build infrastructure, run the economy, etc. Marriage is the framework in raising them. Immigration is a sub-optimal solution since it has its problems like language barriers, cultural problems, education issues, smugglers, terrorists, etc.
@zztstenglish: “Yep, all the more reason to promote procreation because children are the state’s future workforce who’ll one day defend the nation, build infrastructure, run the economy, etc. Marriage is the framework in raising them. Immigration is a sub-optimal solution since it has its problems like language barriers, cultural problems, education issues, smugglers, terrorists, etc.”
Well, I just heard on the radio today that first generation immigrants make a neighborhood safer. I think they are also more likely to stay married and have children within marriage.
However, if you want to encourage women to have more children, here are some policies that I think would help:
universal health insurance;
low-cost college education;
paid maternity leave of three years/child, although nine months would help;
part-time jobs that are challenging and respected and have benefits;
and getting rid of debt.
Re: It’s interesting that Oliver Stone, Sean Penn and many other celebrities were friends with Chavez.
Why is that interesting?
He was one of the best (as well as popular) leaders of the last couple decades, so the more interesting question to me is why so many of the American establishment figures disliked him. Oh right, I forgot, because he was anti-capitalist. Silly me.
@Diane – Didn’t say immigration was bad. I welcome immigrants because my parents were immigrants. I’m just saying it has some issues from an economic / state perspective.
Quick reaction to the cards – I’ve joked in the past that you can never find a card to send that says the things you really need like “Sorry you’re going to jail,” but I think I prefer the blank cards. I would like some guidance on what to say, but so often it depends on the person you are talking to.
“@Amy Zietlow: I think there is more than one way to die well.
“Almost every article I’ve read acknowledges that the course of treatment he followed and so forth said clearly, I am dying of cancer, but his words never did. He told a much different story about living with cancer, reasons for which would entail a level of political and personal analysis that is beyond me, but I continuously found the falsely optimistic story he told sad and empty. As a public person of great influence, he could have modeled death so differently, but perhaps he just didn’t know how.”
I am coming at this from recent (painful) experience. What I have learned is that some people don’t want the hospice model. They want to go down fighting, even if the odds are against them. That’s the right thing for them to do.
I share LaLubu’s sense that crazy optimism sometimes pays off. I’ve seen people live longer than doctors think is possible.
The optimism can be hard on the people around you. They have to be upbeat and then go cry by themselves. On the other hand, they are not the person who is ill.
I also have come to see something that is probably obvious to hospice workers, but not always the rest of us. A person is still alive for a long time, even if they are very ill. They need to feel they aren’t dying all the time.
I ended up liking the Lance Armstrong Foundation’s slogan – Live Strong.
They had a brochure that I through put things really well, but I don’t know where to find it right now.