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.
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.