How to Find the Right Words for Someone in Hospice
Appropriate cards are tough to find, so here's advice from end-of-life experts
After spending 15 years researching the best ways to support people whose lives end in hospice, professor Elizabeth Bergman has advice for friends, neighbors, family members and co-workers who want to send them a final, poignant message: Mail cards, but choose them carefully.
"Please don't send a 'get well' card," pleads Bergman, chair of Ithaca College's Gerontology Institute.
By its very definition, hospice is for patients who will not get well. Patients enter hospice when they and their medical team agree that curative measures have been exhausted. The focus shifts to comfort care, emphasizing the patient's emotional and spiritual needs.
"The transition to hospice can be very challenging, very difficult. It means confronting that this is the end of a person's life," Bergman explains. "That can create conflict in families, where one faction supports hospice and the other wants medical intervention to continue. A 'get well' card can unintentionally exacerbate an already tense situation."
The hospice option has grown since it became a Medicare-covered benefit in 1983. According to the National Hospice and Palliative Care Organization, 1.43 million Medicare beneficiaries received hospice care in 2016, in homes, hospitals, nursing facilities and hospice inpatient settings.
Some Offer Helpful Prompts for Hospice
While more Americans are likely to have a relationship with someone who chooses hospice, Bergman expresses frustration that commercial greeting card companies have not created thoughtful and sensitive cards specifically for these patients.
"Friends worry that they will say the wrong thing or that what they say will not be received in the way it was intended, so they don't send a card or write a note at all," she says. "It's too bad. There's no second chances for these connections."
A few niche greeting card companies market cards specifically for hospice patients online; many carry a religious theme.
But while the two largest card companies, Hallmark and American Greetings, maintain portfolios featuring thousands of cards, neither produces even one specifically for a hospice patient.
As an alternative, a Hallmark spokeswoman points to the company's "Just Because" line launched last year.
Messages in this line include: "Hope today is one of the good days," "There is a circle of caring all around" and "Be gentle with yourself." One even reads, "There's so much I want to say, but I don't know how," which seems to admit that even a professional greeting card wordsmith has trouble summoning the proper sentiments.
Suggestions for Handwritten Messages
A spokeswoman for American Greetings recommends one of their blank cards in the "Thinking of You" line and coaches consumers with specific "what to write" prompts for cards intended for recipients with cancer or other serious diagnoses.
Suggestions for handwritten messages include: "Your beautiful smile always brings so much joy," "Just wanted to write and say ''hi, and that I'm thinking about you and how much I admire you'" and "Everyone is thinking of you."
When Kevin Ellsworth was at the end of his life, he received a flurry of those blank cards with personal messages. His wife displayed them near his bed where he could gaze at them.
"He got such heartfelt messages. He was blown away that people took the time to reach out," recalls his widow, Patty. "It was the last chance to send a fond thought, to say, 'I'm thinking of you, may you find comfort and peace.'"
Ellsworth was 56 when his doctors told him that they were out of medical options to treat his kidney cancer. He chose hospice and was cared for at home as the malignancy spread, his energy flagged and his health declined.
"The only upside to his illness was that there was time to say goodbye. We knew he'd reached the end of the line. We didn't sugarcoat it," Patty says, adding that her husband ultimately achieved the death that he'd planned, taking his last breath in his bed and in her presence.
The longtime chief financial officer of a suburban county in Minnesota, Ellsworth had professional relationships as well as a circle of friends and family.
"A few of their cards were religious. Most people knew that Kevin and I are not spiritual, so we didn't get a lot of that, but we knew they meant well. It's tricky; people can't send a humorous card like it's a knee replacement," Patty says.
Sending a Message is Appreciated
Patty says she and Kevin were particularly touched by messages that came from people she called "on the fringes of our life."
"One of the most meaningful notes was from someone who'd been his intern years earlier. He wrote about how he'd been influenced by their relationship and appreciated Kev's advice and mentorship," she adds. "He found the words to tell Kevin that he had mattered."
Whether he sought advice on what to say or just followed his instinct, that former intern articulated the sort of message that end-of-life advocates consider the most profound, serving a therapeutic purpose for the recipient.
"When a dying person is aware and conscious, they are often inclined to go over their lives," Bergman says. "Receiving kind words can support that process and help them realize the ripple they've made in the world. It can help them be at peace."
Through four decades of working with the terminally ill, Shary Farr can attest to the impact of such cards, notes and letters.
"We assume people know what they mean to us, but they don't," says the advance planning advocate who teaches classes about end-of-life preparation in Monterey, Calif. She also is the founder of Partners for Transitions, a business in Carmel, Calif., that provides clients with personal and practical planning for aging, illness and end-of-life arrangements.
"This is the time to acknowledge the beauty or gentleness or humor or significance that they brought to us. It's a real gift to them," Farr says.
Don't Let Fear of Dying Stop You
She believes that some people shy away from acknowledging hospice patients because of their fear or denial of their own death. Farr sees composing an authentic message to a dying acquaintance as an opportunity to confront those feelings.
"Every time we practice this we can become a little more comfortable. And if we diminish fear, we have more room for love," Farr says. "We can take risks, make choices, have difficult conversations. If we stay scared and turn our backs, we create more fear."
Farr recommends crafting a personal, handwritten message that can be no more than a few lines at the bottom of a "Thank you" or "Thinking of you" greeting card or on a sheet of stationery.
"Remind the person what they've meant to you, what you have learned from them, the role they've played in your life, even if it's small," says Farr.
She offers a few sentence starters for friends who are grasping for the right words:
- Without you I never would have known…
- You showed me the importance of…
- You taught me to appreciate…
After the person in hospice dies, some families want to keep and cherish the final cards, Farr has found. She has identified another meaningful option for the written messages.
"I have sent these notes along with the body when it goes to be cremated," she says. "It's a spiritual act, sending that love along with them."