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Meaningful conversation when your loved one is on hospice—here’s help
How to have meaningful conversation with your loved one on hospice, including the best life review questions & 4 things we all should say when someone is dying.
“My mom just entered hospice. I would like to create a book—do you have questions I could use? I would like to do this as I am sitting with her.”
This request came to me from someone who filled out a basic form on my website. My heart cracked open as I wondered what I could offer her.
At once I could see myself sitting by my own grandmother’s hospice bedside; I could feel that sense of helplessness and urgency to do something. I could imagine this individual typing that inquiry to me, a stranger, with a blind faith that it would be answered.
Well, I did answer her. It took me a while (and some research) to craft a response that I thought would truly be helpful at this time, as none of the resources I had thus offered online met the need. And then I realized—if she was looking for questions to ask a hospice patient, others were too.
If your family member is on hospice or has been diagnosed with a terminal illness, consider some of the questions and insights below to help you have meaningful end-of-life conversations with them.
Honor the urgency—and sacred nature—of talking with your loved one on hospice
It’s no surprise that when we are hit with the notion that our loved one is going to die, we feel an urgency—an urgency to connect, to hear their stories, to help them find meaning in their life and peace with their imminent passing.
Most of us take for granted that our family members will be around tomorrow. Tomorrow we can ask questions. Tomorrow we can hear their stories.
But when tomorrow is taken away, then what? Is it irrational to try to squeeze a lifetime’s worth of questions into what could be a finite few days or hours?
I have long offered a list of “essential” questions to use in interviews with parents or grandparents—but this is a long list, designed for those who have the luxury of time to conduct interviews.
When a loved one is on hospice, time is of the essence. So I recommend you get to the heart of the matter quickly, and focus on questions that lead them on a journey of meaningful reflection. (Remember, this is more about them than it is about you.)
Help the dying find a “sense of completion”
Research shows that people who are dying feel an urgency to “find a sense of completion” and to feel that they have contributed to others during their lifetime.
Palliative care expert Ira Byock has long written about how we can understand dying as a time of learning, repair, and completion of our lives—and how everyone deserves to “die well.”
One of his fundamental recommendations is that family members help their dying loved ones find that sense of completion by saying four things:
“Please forgive me. I forgive you. Thank you. I love you.”
It’s not a matter of simply reciting the words, of course. Each person must find personal meanings within the words, and find a way to express that meaning to their loved one.
“Thank you for being a mother who always listened to me, Mom.”
“Please forgive me, Daddy, for not helping you to cope better during your divorce”
“Mama, I forgive you for the things you did that caused me pain.”
Conversation may or may not ensue, but the offering of the words, the emotions, the gratitude, is a true gift. It helps both the dying person and their family member feel like important things have not been left unsaid.
Ask questions that help create “a biography of joy”
Like the woman who wrote to me wanting to use the time at her mother’s bedside to ask biographical questions, many people desire to learn more about their loved one as they near death. Perhaps there are things they always wanted to know, but time never seemed of the essence—until now.
There are myriad lists of family history questions out there, but these are designed for interviews where there is less sense of urgency.
When interviewing a hospice patient about their life, a more condensed life review is in order. Ask questions that speak about life transitions (graduation, career change, marriage, becoming a parent, moving homes, etc.) and that lead the subject down a path of happy reminiscence.
Questions that probe big changes in one's life usually prove to have very poignant answers.
Things such as:
Tell me about all you have loved.
What is the best decision you ever made?
What have you loved most in this life?
What has surprised you about people? About yourself?
How would you like to be remembered?
What hopes do you have for your family?
And then, there are times when someone on hospice may not want (or be able) to delve so deeply.
Consider bringing them a smile through lighthearted questions.
Questions such as:
Sing me your favorite song.
Do you remember your first kiss?
What was your favorite toy as a young child?
Did you ever play a prank on someone?
And remember: While you certainly have a deep interest in learning the answers to these life review questions,
“Stories also can be a gift that the ill person gives to others. People living with debilitating effects of illness may struggle with feelings of unworthiness and a sense of being a burden to others. The recording of family stories involving the marriage of matriarch and patriarch, seminal events, and the history of the family during war or natural disasters is a tangible way that people can contribute to their children, grandchildren, and the generations to come.” **
This life review is foremost an opportunity for the dying person to reflect and find meaning in their life. What a gift that is.
Navigate end-of-life conversations with grace
It is a most generous gift for you to go beyond providing comfort and personal care to inviting your family member to reflect on their life. By asking them questions and giving them space to share, you are creating an opportunity for integration—for a sense of self-actualization to happen at the end of their life.
“At the end of the day, or at the end of a life, we want to know that our lives counted for something, that we mattered, that our lives have had meaning,” palliative care nurse Charlene Thurston says. “What matters most to people is not what they’ve accumulated, but whom they’ve touched; whom they’ve loved and been loved by.”
By asking your loved one certain biographical questions, you are helping them take stock of their life—to articulate how it has had meaning, and to name their most special relationships.
Listen generously. Make eye contact. Use old photos or mementos as memory prompts.
And I urge you to hit "record" on your phone's recording app or on a mini digital recorder. We feel so confident we will remember the things our loved ones say, but I speak from experience when I say this is not always the case, especially when we are in a caregiving role and emotions are so close to the surface.
I hope these things are helpful to you in your effort to capture your loved one’s stories. Cherish the time you have together. Being a caregiver may not be easy, but it is indeed a gift.
** This quote and the idea of creating a “biography of joy” derive from a paper entitled “Caring When Cure Is No Longer Possible” by Ira R. Byock, M.D. and Yvonne J. Corbeil.
Narrative medicine: Stories nourish empathy
An introduction to narrative medicine through a recent NYC talk from physician and writer Haider Warraich, MD: “The Search for Beauty at the End of Life.”
I am devoted to the power of story. It compels me personally; it fuels my brand. I am also invested in helping caregivers, and promoting candid conversation about how we die. So it is no wonder that I found my way to exploring the field of narrative medicine.
“Narrative medicine is clinical practice fortified by the knowledge of what to do with stories,” said Rita Charon at TEDxAtlanta. Dr. Charon is a general internist and literary scholar at Columbia University who originated the field of narrative medicine,.
“Stories can offer the kind of contextual richness that promotes and nourishes empathy, prompting a provider to switch from asking ‘How can I treat this disease?‘ to ‘How can I help my patient?‘” —Kim Krisberg, AAMC News
Narrative medicine gives voice to the suffering, and takes into account a patient’s whole story—as Dr. Charon says, including “even the unsaid hints and guesses about what might be left unsaid.” There is story to be received in a person's words as well as their silences.
The more open we are—not just doctors, but all of us—to receiving those stories, the closer we become to making meaningful connections.
Every Word Counts
“Awakening and nourishing my own sense of story has transformed my teaching and my practice,” Dr. Charon said. “I was able to learn how to listen closely, where every word counts.”
When she first meets a patient, she says, she no longer goes down a medical history questionnaire recording answers, but rather asks for a patient’s story—“what do you think I need to know?”—and she listens. No writing, no typing, no computing; just listening…absorbing.
“Persons were deeply thirsty to give profound, detailed, eloquent accounts of themselves. They didn’t always know how, or how to start,” Dr. Charon notes.
She tells the story of a patient who, once prompted for his story, began to talk of his father who died, his sibling who died, and of his teenage son with whom he was having difficulty. He began to cry. Dr. Charon asked, “Why do you weep?” His response: “No one ever let me do this before.”
The Search for Beauty at the End of Life
I attended this month’s “Narrative Medicine Rounds” hosted by the Division of Narrative Medicine in the Department of Medical Humanities and Ethics at Columbia University Medical Center. The September guest speaker, Haider Warraich, M.D., author of Modern Death: How Medicine Changed the End of Life, talked about the search for beauty at the end of life.
“You’re down to the floor of who you are in the presence of illness,” Dr. Charon said in her TEDxAtlanta talk. And indeed, Dr. Warraich’s stories attest that, in dying, we are most fully human.
His most important lessons as a doctor did not come from senior physicians, he says, but from elsewhere: namely, from the interactions with patients nearing death and their families, and from the questions that arose within him as a result.
The stories he recounts are powerful and poignant and, while part of many physicians' daily experience, simply not spoken of much in today's death-averse society.
“We’re always searching for meaning....both within our personal lives and within our professions,” Dr. Warraich said. “Even as we search for meaning in the world around us, the search for meaning is an inward search. I don't think that meaning is a quality that exists in the world around us, but is a narrative that we find within ourselves and then paint the world with it.”
Doctors surrounded by suffering are pursuing "the search for beauty in the arms of death." And the search for beauty, Dr. Warraich says, is essential.
“What is perhaps the most magical thing about beauty is that it can't be defined, and especially in our modern world where it seems like the only things that count are the ones that can be counted, I feel like beauty is such a compelling concept because it eludes any degree of quantification,” he said.
“The search for beauty is not just a trivial pursuit, it is essential for our very survival.”
Guided by Stories
“For once in the hospital there were tears with no pain.” These words punctuated Dr. Warraich's story of a patient who witnesses her daughter's wedding in the I.C.U. after a a medical team helps orchestrate the last-minute nuptials before the patient died.
“It was the most full-of-life room I had been to in a long time.” Here, Dr. Warraich describes his response to a family's beautiful acceptance of their loved one's death.
While "any story that goes long enough will end with death,” as Dr. Warraich said on Wednesday, paying attention to the stories of individuals promotes empathy. And the many, many stories of the people Dr. Warraich encounters on his medical journey will continue to inform us all about the universality of life and death.
Further Reading
A case for taking care of the elderly
“As with raising a baby, the answer might come from the heart. What is really needed is for us to love the old as we do the new and celebrate the end as we do the beginning.” —from “Seeing the Cycle of Life in My Baby Daughter’s Eyes,” by Dr. Warraich, NYT
saying goodbye, celebrating life
“It was the most full-of-life room I had been to in a long time.” —from “The Rituals of Modern Death,” by Dr. Warraich, NYT
the gift of remembrance
"Our loved ones’ stories are often buried treasures." —from Notes from a Funeral
remembering my parents
“Bringing his candor, wit and intelligence to his most intimate and mysterious of landscapes—our parents' lives—memoirist Richard Ford delivers an exploration of memory, intimacy, and love.” —listen to Ford's Narrative Medicine Rounds lecture from April 2018
Learn about our Write Your Life course, providing memory prompts, writing guidance and a dose of inspiration to anyone who wants to preserve their stories now.