My wife and I have been together for 30 years. Five years ago, she started dialysis, and that same year her mother’s divorce from my wife’s stepfather was finalized. Like many divorces, it pretty much split up the family.
My wife’s health is declining rapidly now, and she was also denied placement on the transplant list due to other health issues. We have been discussing her death, and my wife has expressed that she does not want her ex-stepfather or two of her siblings to attend her funeral.
When my wife made her wishes known to her mother, her mother said that my wife’s ex-stepfather has every right to attend the funeral because he raised her since she was about 8 years old, and that the two siblings also have every right to be at her funeral because they’re her brother and sister.
My wife explained that she did not want them at her funeral, because of how her ex-stepfather treated her when she was growing up and because the two siblings sided with him during the divorce. But her mother reiterated that she wouldn’t do anything to stop these people from attending the funeral.
I told my wife that the only way to make sure her wishes are met is to not tell her family about her passing until after she has been laid to rest. My wife agreed that this may be the only solution. Is this the right course to take?
Louis
San Antonio, Texas
Dear Louis,
I’m so sorry that your wife is ill, and I can only imagine that the prospect of her wishes not being met adds substantially to the stress you’re experiencing. But what seems to be getting lost in the understandable turmoil is that your wife is still here, which means she has agency over how she interacts with these people before the funeral happens.
Let’s back up for a minute. What’s complicated about funerals is that not everyone agrees on whom they’re for. Are funerals for the dying, comforted by the knowledge that they’ll be surrounded by friends and family when laid to rest? Or are funerals for the living, a chance to grieve in the company of others and get one final goodbye? Whose comfort and peace of mind are funerals for?
It sounds like you and your wife believe that funerals are for the person who died, and therefore this person should determine before her death who will be there. And it sounds like your mother-in-law believes that funerals are for the living, and therefore that your wife’s ex-stepfather and siblings will want to be there. You probably won’t resolve this philosophical difference—though understanding it may help you to be more compassionate toward your mother-in-law’s view—but you do agree on one thing: These family members mean to attend the funeral.
The question is, why? You don’t say what these relationships are like now—whether your wife is on speaking terms with these relatives; whether they know about her prognosis; whether they’ve shown any concern for her; whether, perhaps, you’ve kept your wife’s condition from them so they haven’t had an opportunity to share their concern. Nor do you say how your wife was mistreated growing up, or whether her mom has acknowledged the extent of the mistreatment. Maybe your wife spoke with her mom about her wishes because she’s no longer in contact with these relatives, but by not communicating with them directly, she puts herself in a position of powerlessness, which may be how she felt growing up and again during the divorce.
Banning people from a funeral is both a personal request and a strong public statement. At least in part, it’s a declaration to all who attend that these people hurt your wife deeply, and in this way, her pain would finally be acknowledged. This is what her wish is fundamentally about: a way for her to deal with the pain of the past.
Quite clearly, though, there’s a catch. If banning them from the funeral represents a final, public acknowledgment of her pain, the one person who needs that acknowledgment most won’t be alive to see it. So maybe it’s worth considering what might bring your wife even more peace than their absence at her funeral: the opportunity to be heard by them now. In my therapy practice, I’ve seen people with terminal illnesses spend the time they have left in different ways. Some people don’t change much—they hold on to their anger and resentments and die with them firmly in place. Others step far outside their comfort zone and grow tremendously in ways that feel immensely gratifying.
I don’t know which route your wife will choose, but here’s an option for her to consider. Instead of saying to her family members, essentially, “I’m angry with you and I get the last word!” (because by the time they learn about the funeral they missed, she’ll already be gone), she might say, “I’m angry with you, and I’d like to understand more about what happened between us before I die.”
She may learn that these relatives don’t realize how much they hurt her; or that they feel bad for having hurt her; or that they feel hurt by her, and there’s another side of the story she hadn’t been willing to consider before—her own role in the family drama. If that’s the case, there might be room for compassion on all sides, and while compassion won’t erase what happened in the past, it might pave the way for a greater understanding that allows a connection to find its way into their lives. And that small change can be potentially transformative, especially at this time in her life.
Of course, just because your wife does something differently doesn’t mean other people will. If they’re not willing to consider your wife’s point of view (remember, they don’t have to agree with it), if they place all the blame on her or are rude or insulting in these conversations, your wife can take a different tack. She can say she believes that the time to show respect is while a person is still alive, and if they can’t show her respect in life, it would be disingenuous of them to pretend to “pay respects” when she’s dead. For this reason, it would upset her to have them at her funeral, and if they genuinely want to pay respects, they can do so by respecting her preference for that day to go as she wishes.
They may say fine. Or they may still insist on coming, in which case she can ask them point-blank, “Why are you insisting on coming to a funeral for someone whose feelings you don’t care about and who doesn’t want you there?” Just hearing the stark truth in this way may encourage them to reconsider.
But here’s the thing: No matter what happens, your wife will have gotten to say her piece while she still can. Whether you have a private service or they attend her funeral, it won’t matter as much as the fact that she was proactive and forthright, spoke her truth directly to the people involved, and took control of what she had control over—how she wanted to live in a way that expressed her self-worth. Some people go their entire lives and never give themselves this opportunity. She doesn’t have to be one of them.
Unlike most people, Anne-Marie Keppel isn’t afraid to talk about death. From her home office on Craftsbury Common, she works as a death doula and life cycle funeral celebrant through her businesses Stardust Meadow and Village Deathcare. When jewelry maker and Hardwick resident Cecilia Leibovitz lost Michael Secore — her partner of nearly 18 years — to cancer last September, Anne-Marie was there to help ease the transition and provide support to the family during their time of grief.
Now Cecilia makes memorial jewelry to commemorate loved ones, using pieces of clothing and personal artifacts. We sat down around Anne-Marie’s table with glasses of mint tea to talk about our experiences with death and why we are so afraid to discuss it openly.
This small book, The Green Burial Guidebook by Elizabeth Fournier, is packed with helpful information and resources for anyone interested in learning more about “green burials”, and what that really means. The author speaks from experience, and lays out the information in an easy to understand and well organized way. For a subject that can seem overwhelming, this book does an excellent job of simplifying the subject.
For those ready to fully commit to this end of life scenario, there is practical advice on what to do, where to go for help as well as providing historical context and tips on the subject throughout the book. For those who are just curious, may have reservations, or have not yet thought about what their end of life may “look like”, there are explanations and options presented.
Fournier mentions “….the cultural alienation….from dying….” and all things associated with that stage of life. Western society, by in large, has turned over the handling of death to others rather than embracing it. The author invites the reader to take ownership of the choices and the outcome in advance. We could look to the practices of some other cultures to remind ourselves how to cope with this inevitable life event in a thoughtful, considerate, and personal manner.
What the author does in this book more than anything is to prompt us to think about our death and how we want it handled. To make choices, and plans ahead of time so that not only are our wishes honored, but also so that family and friends are not left with hard decisions at a time when they may be least prepared for it. Green burials provide an alternative that can be comforting and healing for friends and family, and also provide a much less invasive choice for the environment and the earth itself.
A great read for those wishing to become more informed on the subject at whatever level.
* Special correspondent, Jean Campbell has no qualifications to justify or explain why she should be reviewing books other than we all have opinions, and this is hers.
Tony and his daughter, Katie, who was 23 at the time of Jonny’s death, share their journey through the liminal space in this book, told from the two very different perspectives of Tony and Katie.
Tony Rose, the co-author of Beautiful Grief, shares a lesson he learned upon the death of his 28-year-old son.
Jonny was a month and a day shy of his twenty-ninth birthday when my wife, Chris, found him dead in our pool house. This was four years ago, and it began my experience with vast differentness.
“Jonny is dead,” she told me over the phone. I was in Oregon golfing with my friend when she called.
Chris’s phone call—and Jonny’s death—began a journey through what I came to know as the “liminal space.” The word liminal comes from the Latin word limen, meaning “a threshold.” The liminal space is the place wherein you have left one phase—one set of rituals or traditions—but have not yet established new rituals. You no longer hold your pre-ritual status, but you have not yet begun to transition to a new status of rites and rituals.
During the liminal space, you are standing on the threshold between your previous way and what will become your new way.
When someone you love dies, it is as if a tsunami has hit. The world as you know ceases to exist, so the word “different” feels like an understatement. When you enter the liminal space because of grief, you begin the process of being something new. The liminal space can seem permanent, and certainly so when grief accompanies it. This loss of a person or a relationship or an extreme shift in conditions—this differentness—changes the dynamic and balance of your life in such a profound way that the circumstances of joy that persisted before the liminal space cannot be recaptured.
This loss can seem enduring. After all, how can you be okay when the joy you once had can never again be realized?
Jonny’s death created a different world for me. My life is not the same as it was before he died. He does not sit in his seat at the table during holidays. I will not attend his wedding. Never will his laugh fill my ears again.
When he died, this difference felt, at first, staggering. It was as though my boat had crashed, and the ocean was tossing me around.
But as the months and years passed, I began to realize that the differences in my life were not differences of a lesser quality. They were differences of a different quality. I have more sadness than I had before Jonny died, but my joy is deeper. I notice moments that I would not have noticed before Jonny died, and I notice that my feelings are becoming purer and more accessible.
Here is just one example: I was recently honored to be a guest at the wedding of an employee, Carmen. To be honest, before Carmen’s wedding, her fiancé, Fernando, was an acquaintance. He and I had met a handful of times prior to the wedding. We had exchanged small talk and pleasantries. I liked Fernando, but had Jonny not died, I am certain that his wedding with Carmen would never have been as extraordinary as it ended up being. Absent the differences in me that occurred due to Jonny’s death, Fernando would still be a person I think of as an acquaintance.
Yet, I can say without a doubt that I will never forget watching Fernando dance with his mother on his wedding day. I found myself crying, watching a mother so tenderly celebrate the love and happiness she felt for her adult son, mixed with the bittersweet emotion of seeing her baby turn into a man.
I watched them dancing, aware that I will never have a memory of Jonny dancing with his own mother but sure that had Jonny not died, I would never have recognized the beauty and the quiet confluence of melancholy and joy that existed in that moment.
It was—even as I think about it now—a moment that will always move me.
There’s no question in my mind that it was almost as consequential as Jonny’s birth itself. I will remember Fernando dancing with his mother until my dying day.
I can, at this very instant, see a picture of them dancing in my mind.
As I watched them, it occurred to me that those empty places that I thought would never be filled can be filled if I let them. They will be filled with something different, but not something less.
Watching Fernando dance with his own mother did not have to be a reminder of what I did not have: It was better as a great substitute, a beautiful replacement, a differentness, for a hole that would otherwise be vacant—a small, surprising moment I could treasure in my mind as its own memory.
This is the closest I have come to being grateful for the context given to me by Jonny’s death. It was the first time I really articulated that there would be many glorious moments to come. They will be different than I would have imagined four years ago, but they need not be less.
Tony and his daughter, Katie.
I began to realize that the moments did not have to come from my wife, Chris, or from my daughter, Katie, or from me, or even from someone in my immediate circle—they could come from an acquaintance. I could share in a moment with my employee’s fiancé and his mother—a moment that he will never forget, but equally, a moment that I will never forget.
I could have thought, Jonny will never dance with his mom, and I would have missed the moment between Fernando and his mother. I would have equated different with less.
Instead, I was able to share in a beautiful moment between Fernando, Carmen, and their families. Absent the context of Jonny’s death, I would have been an attendee at Fernando and Carmen’s wedding. Given the context of Jonny’s death, I was a participant.
The world, and all of the moments that unfolded at that wedding, seemed so much richer, with more depth of color, than I could have otherwise seen them.
Would I trade this to spend time in the company of my son? Of course I would. But I do also hold that my memories of Jonny, and the new memories I have made since his death, are not of a lesser quality.
I think this is important to remember because differences happen. We change jobs or move to new cities. We become parents, and then we become empty nesters. We divorce. People we love die.
What I observe of people who are grieving is that they sometimes choose to dwell on the fact that their life is different, and they stop there. Instead of saying, “Oh, this is different. I am going to experience life in a different way,” they say, “Oh, this is less. My life is less. I will never be okay because my life is so different than it was before.”
My experience is that when you decide that different and less are synonymous, you fail to see the moments. You cannot see joy and beauty when you have already decided that your life is less-than.
For me, the ocean has settled. As I look around, the view is new. It is also beautiful, rich with colors I have never before seen.
Though your body might be ready to return to sex after a miscarriage, are you?
By Jessica Zucker
How soon can you have sex after experiencing a pregnancy loss? It’s a common question among women of childbearing age, considering that up to 20 percent of pregnancies result in miscarriage and approximately 1 in 100 in stillbirth. There’s not a standard — or straightforward — answer. Generally, physicians counsel patients to wait until they feel ready. But readiness for a woman and her partner can depend on a number of physical, and emotional, factors.
“From a medical and practical perspective, the primary thing is to ensure that the pregnancy has passed completely, the cervix has closed, and that there isn’t an increased risk of causing infection in the uterus,” explained Zev Williams, M.D., Ph.D., chief of the division of reproductive endocrinology and infertility and an associate professor of obstetrics and gynecology at Columbia University Irving Medical Center. “The timing for this depends on how far along the pregnancy was at the time of the loss and how quickly the woman’s body recovers.”
A couple’s romantic readiness is another question altogether.
Emotional roadblocks are a big factor: Women may feel reluctant to engage in sexual intimacy while still grieving their loss. Miscarriage can also change a woman’s relationship with her body, and what sex represents to a couple might shift. If this seems hard to understand, it is: I am a psychologist specializing in women’s reproductive and maternal mental health, and I didn’t fully comprehend how complex returning to sex could be until I experienced a second trimester miscarriage firsthand. Then I understood all too well: There’s no one-size-fits-all answer.
“There are no guidelines with regard to telling patients what to expect about returning to sex after miscarriage. Routinely, we don’t discuss sex after loss unless patients bring it up,” said Jessica Schneider, M.D., an ob-gyn at Cedars Sinai Medical Center in Los Angeles. “There’s research about how safe it is to get pregnant again after a loss, but not about sexual function or satisfaction.” And the fact is, sexual function and satisfaction can, and do, change.
I talked to several women about their experiences around sex after pregnancy loss to find out how they approached returning to intimacy. (The women preferred their last names not be used due to privacy concerns.)
Some women, like Ash, 36, felt ready to have sex right away. After experiencing a stillbirth, she turned to sex for healing. “It was a way to feel powerful in my body,” she said. “I felt like my body had failed me, and sex was a way to get that back.” There was one caveat though: She didn’t want to risk another pregnancy. “It felt better to engage in sexual acts that couldn’t result in one.”
Trying to get pregnant again is a sensitive topic medically and emotionally. The World Health Organization’s official stance is to wait six months before attempting another pregnancy. Recent research, however, suggests that having sex sooner doesn’t have a negative effect on future pregnancies and could actually help success rates.
“The doctor told us to wait until we were comfortable,” said Maria, 26, who has had four miscarriages. “It was nerve-wracking to return to sex. I think because I was terrified of getting pregnant again and losing it or not getting pregnant again. It was challenging mentally.”
Shame and self-blame can enter the bedroom after pregnancy loss and create trouble where there previously was none. Hanan, 27, thought she was ready to have sex again immediately after a stillbirth, though her doctor told her to wait six weeks. She said she felt arousal and the desire to have sex, and engaged with her husband in everything other than penetrative sex, while waiting for medical clearance. But the first time they had intercourse, she wasn’t prepared for her emotional reaction. “I cried so much after the first time. I felt very guilty,” she said. “My body wanted to, but my brain didn’t. It felt selfish and immoral — like I should have been celibate while grieving.”
These thoughts are especially challenging for women who are actively trying to conceive again. “I did not want to initiate sex after my loss, but at the same time, I did want to get pregnant again,” said Maggie, 32. “My vagina became a constant reminder of the loss.”
Some women said they resented their bodies for a perceived failure. “After my miscarriage, I couldn’t be with anyone for over a year,” Zachi, 27, told me. “The fact that my body failed impacted the way I felt sexually afterward. I carried the baby emotionally, long after physically.”
While a 2015 survey found that 47 percent of respondents who had experienced a miscarriage reported feeling guilty about it — and nearly three-quarters thought their actions may have caused it — the reality is that chromosomal abnormalities are the explanation in about 60 percent of miscarriages. Pregnancy loss cannot be prevented.
If you’ve been trying to conceive for a long time, sex following a pregnancy loss can become especially fraught — even unappealing.
“After my first miscarriage, we only had sex to conceive. It started to feel like a task,” said Gina, 30, who has experienced infant loss and two miscarriages. “That mentality compounded after my second miscarriage and killed all sexual desire for me.”
Sonali, 33, who has lost four pregnancies, had difficulty returning to the very place she got pregnant. “Sex with your other half in the bed where you conceived the babies you lost is so triggering,” she said.
“Sometimes, I’m thinking about where I’d be in my pregnancy now; how I wouldn’t be able to have sex in this position,” Maria said. “It makes me feel guilty to feel great, when I should be seven months pregnant and uncomfortable.”
Pregnancy loss can have unintended positive impacts on a woman’s sexuality, too. Zachi said that she is more assertive in her sex life because of her miscarriage. “I have to listen to my body now,” she said. “It becomes painful not to. I am a lot more sure in what I want.” A miscarriage ultimately brought Maggie and her husband closer together, she said. “During the loss, I felt like I was on an island,” she remembered. “The first time my husband and I had penetrative sex, I cried from relief, because I felt so re-connected to him.”
Having and enjoying sex again is really about one thing — personal readiness — which is what I tell my patients. It’s O.K. to feel grief and sexual desire simultaneously. “Moving on” is not a prerequisite for pleasure.
It’s not quite the peaceful drifting off I’d imagined for my dad.
By Harriet Brown
At age 86, my father had survived both colon cancer and a stroke that left him with aphasia. His mind was sharp, though, and he wasn’t depressed. A crack bridge player with a passion for Italian restaurants, he was popular at his assisted living facility even though he couldn’t speak much. He told me he’d lived a good life and wasn’t afraid of dying, and he didn’t want to go through any more medical trauma. No chemo, no radiation, no surgeries, no treatment.
His advance directive read DNR and DNI — do not resuscitate, do not intubate. No one would break his ribs doing CPR or make bruises bloom along his arms trying to find a vein. As his health-care proxy, I was completely on board. I’d read Sherwin Nuland’s “How We Die,” Atul Gawande’s “Being Mortal,” Elisabeth Kubler-Ross’s “On Death and Dying.” Comfort would be the priority and any pain would be “managed,” which I assumed meant erased.
Up to 80 percent of Americans die in hospitals or nursing homes, and a third spend at least 10 days in an intensive care unit before they die, many of them comatose or on a ventilator. A week after his sudden diagnosis of widespread metastatic disease, my father was lucky enough to get a bed in our town’s only hospice, a homey facility staffed with attentive and experienced caregivers. The alternative would have been a hospital bed in my living room, so it was a relief to know that my father was in the hands of professionals. They would know what to do.
And they did. The nurses and caregivers were gentle as they repositioned my father in bed, explaining each move even when it seemed he couldn’t hear or follow. When he could no longer swallow they squirted morphine into his cheek and rubbed it so the medicine would be absorbed. “This will make you feel better,” they would say, and my father would turn his head and open his chapped lips like a baby bird.
But his death was not the peaceful drifting away I’d always imagined, where you floated into a calm, morphine-induced sleep, your breath came slower and slower and then simply stopped. He vomited blood over and over. A lifelong stoic who never complained of pain — even when he’d broken a hip the year before — he twitched restlessly in bed, eyes closed, his brow furrowed and his skin clammy.
The magical “managing” of pain and nausea I’d anticipated turned out to be more aspirational than real. The hospice nurse prescribed one anti-nausea medication, then another, without success. Eventually, Ativan and Haldol settled the nausea, and morphine helped the pain. My father was lucky it helped; about 25 percent of people die in pain. One caregiver confided to me, “There are people whose pain we never get under control.”
For days we watched my father’s cheeks hollow, watched him pluck at the thin blanket that was all he could bear on his body. His kind brown eyes glazed over, and some trick of the light made them look blue under his half-closed lids. Sometimes he sat up suddenly, reaching forward, and then fell back on the pillows. I knew there was a name for this behavior, terminal restlessness, that it’s common during the dying process. I knew the gurgling sounds he made as he breathed came from his body’s inability to clear secretions, and that — according to hospice — it probably wasn’t uncomfortable for him.
Leaving the hospice facility one night, I told my 81-year-old aunt that I wished I had the nerve to put a pillow over his face. “I’ll stand guard at the door while you do,” she replied. Dying is hard work. And it’s hard to watch.
On the last night, I sat with my father until the summer sky began to darken. Then I gathered my belongings and leaned over the bed where he lay unresponsive, his eyes closed, his mouth half-open. I kissed his stubbled cheek. “Dad, I’m going now,” I told him. “It’s time for you to go too.” He died a few hours later. He was alone, as most people are when they die, so I don’t know if it was peaceful, if he made a sound or opened his eyes or just stopped breathing.
After he died, I was haunted by scenes of his suffering. I remembered looking out a hospital window nearly 30 years earlier with my newborn daughter in my arms, realizing that every one of the people I saw on the street had been born. For every person walking down Seventh Avenue, a woman had borne pain that tore her body open. It was a horrifying thought.
Drugs help with the pain of childbirth, but they can’t take it away completely. It’s the same with dying.
“Suffering is an ineradicable part of life, [like] fate and death,” wrote psychologist Viktor E. Frankl in his bestseller “Man’s Search for Meaning.” He was something of an expert, having survived nearly three years in a variety of Nazi camps.
Of course, my father’s suffering was nothing like the kind Frankl witnessed. But still, death, like birth, is a creaturely process, a force that wrenches us onward without consulting our preferences or respecting our sensibilities.
In the weeks after my father’s death, I began to understand in a deeper way the meaning of a good death. No drugs took away all my father’s physical pain and nausea. But in the care he was given, the morphine, the quiet words, the repositioning and cool cloths on his forehead, his suffering was addressed even if it couldn’t be “managed.”
And that, I think, is what we all want. Not just freedom from beeping machines and needles and the cold lighting of an ICU, though that matters, too. Not just the absence of pain, which isn’t possible for everyone. But the solace of being seen and heard and acknowledged brings comfort even in the face of deep suffering.
I hope it’s something we can remember as we move toward a society where more of us can have a truly good death.
Two brothers are combining palliative care expertise, linguistics and AI to encourage more effective conversations between doctors and people receiving end-of-life care.
Hospitals track infection rates, bed occupancy and many other measures. Why not good conversations, too?
One afternoon in the summer of 2018, Bob Gramling dropped by the small suite that serves as his lab in the basement of the University of Vermont’s medical school. There, in a grey lounge chair, an undergrad research assistant named Brigitte Durieux was doing her summer job, earphones plugged into a laptop. Everything normal, thought Bob.
Then he saw her tears.
Bob doesn’t baulk at tears. As a palliative care doctor, he has been at thousands of bedsides and had thousands of conversations, often wrenchingly difficult ones, about dying. But in 2007, when his father was dying of Alzheimer’s, Bob was struck by his own sensitivity to every word choice of the doctors and nurses, even though he was medically trained.
“If we [doctors] are feeling that vulnerable, and we theoretically have access to all the information we would want, it was a reminder to me of how vulnerable people without those types of resources are,” he says.
He began to do research into how dying patients, family members and doctors talk in these moments about the end of treatment, pain management and imminent death. Six years later, he received over $1 million from the American Cancer Society to undertake what became the most extensive study of palliative care conversations in the US.
The resulting database contains over 12,000 minutes and 1.2 million words of conversation involving 231 patients. This is the basis of the Vermont Conversation Lab, which Bob created to analyse this data and find features of those conversations that make patients and family members feel heard and understood.
Brigitte’s job in the lab that summer was simple: listen to moments of silence and categorise them. The idea was that they could indicate emotionally charged connections between doctor and patient. Once the silences were coded, they would be used to train a machine-learning algorithm to detect them automatically – and, with them, moments of emotional connection.
You might ask what place algorithms could possibly have in this sensitive realm. The reality is that healthcare communication needs help, especially in palliative care, where practitioners seek to bring patients to their deaths as meaningfully and painlessly as possible.
In 2014, the US Institute of Medicine made improving doctor-patient communication a priority in its landmark study, ‘Dying in America’. An analogous publication in the UK, Ambitions for Palliative and End of Life Care, emphasised the need for patients, family and caregivers to have “the opportunity for honest, sensitive and well-informed conversations about dying, death and bereavement”. It reiterated that doctors need to make those conversations possible.
Most of the resulting communications training seems to offer scripts and templates to help doctors deliver bad news and make decisions with patients. But this is not enough. In this context, doctors really need to understand conversations more broadly. They need to appreciate everyone’s role in a conversation. They need to learn the ability to listen and be silent. They need to confidently recover from conversational missteps.
“Oncologists are in general very uncomfortable with this kind of thing. They want to focus on treatment, and they talk eloquently about different protocols and clinical trials,” says Wen-Ying Sylvia Chou, a programme director in the Behavioral Research Program at the US National Cancer Institute. She oversees funding on patient-doctor communication at the end of life. “But sitting in the place of being a listener is not something that clinicians are trained for or necessarily comfortable doing.”
End-of-life medical conversations also often involve language in extremis.
Enter Bob Gramling. Hospitals track infection rates, bed occupancy and many other measures. Why not good conversations, too?
Amiable and serene, wearing a bracelet of Buddhist meditation beads, Bob sees a big role for artificial intelligence (AI) that can detect and measure the features of clinical interactions that matter to patients, then report those measurements to numbers-oriented healthcare systems.
Once such technology is widely available, he says, “we can incentivise our hospitals to build systems to improve those interactions and reward doctors for doing it”.
§
“How are you?” asks the nurse practitioner, who’s just come into the patient’s room.
“Fine,” the patient says. She’s a 55-year-old white woman with stage 4 breast cancer. Neither she nor the nurse practitioner know that she’ll be dead in five days.
“No, you’re not,” the nurse practitioner retorts.
“Oh, a loaded question,” the patient laughs.
“It’s been a long – well? No,” says her spouse.
“No,” says the patient. “It’s a polite question, it’s a polite answer.”
This is a snippet of a conversation in Bob’s database that he played to his brother David, a linguistics professor at the University of Arizona. David recognised the dynamics of this specific moment. The people in that room hadn’t been talking about care or disease, but they had been doing something important in the conversation that would affect the quality of the care.
When the Gramlings’ father died, David flew home from a literature studies fellowship in Berlin. But years earlier, he’d been intimately involved as a caregiver, witnessing a “smörgåsbord of insane, irrational communication failures” with lawyers, nurses, nutritionists and priests.
For a year after their father’s death, the brothers were swallowed by family matters. As they emerged, they began talking about palliative care communication and linguistic research in healthcare settings, and began to collaborate professionally.
The most recent result is a book, Palliative Care Conversations, published in early 2019. It aims to show physicians how conversations work, such as how clinicians and patients often understand words and phrases differently. David looked at the conversations at a granular level, using the tools of a linguistic subfield called conversation analysis. He spent years listening to audio recordings of the conversations, noting moments worth closer analysis.
Meanwhile, Bob provided clinical details about medical culture. In the last few years, he has also hung out with jazz musicians, who are master communicators when they’re improvising, and visited the Stanford Literary Lab to see how digital tools can be applied to massive literary corpuses to understand patterns too diffuse for human readers to catch.
Research on end-of-life communicating and decision-making typically looks at what doctors or nurses say. It rarely takes into account the deeper linguistic and cognitive factors that influence patients’ abilities to communicate in the first place.
As the Gramlings note in the book, the above back-and-forth between patient, spouse and nurse practitioner is remarkable for a first exchange between strangers. They explain that’s because “the clinician is willing to risk conventional rapport-building pathways by contradicting the family member’s self-reported state of mind”. In other words, the physician has opened the door to a looser mode of relating – and it works.
Another conversation doesn’t go as well. It’s a “pragmatic failure”, as David would say.
“When I came in,” says the nurse practitioner, “I saw you were watching Scrubs.”
“Scrubs?” the patient says. He’s a 63-year-old black man with stage 4 kidney cancer, who will live for 135 more days.
“Have you ever seen Scrubs?” asks the nurse practitioner, who is white.
“Yeah,” the patient says. “No, I wasn’t watching Scrubs.”
As the exchange unfurls, it’s clear the patient and clinician won’t connect. The clinician then seems to want to force their way to the task at hand, and forget the small talk where rapport could be built.
“When you study communication in healthcare, you’ll see a lot of monologues from doctors,” Bob says. “I don’t mean that in an insulting way – it could be really good information.” In palliative care, he explains, conversations are different: “It might be just because it’s the nature of palliative care. It’s what we do and what our value is… there is a lot of turn-taking.” That’s another term he learned from his brother. It refers to the back-and-forth of conversation.
“This is not a clean, rational, logical experience that fits on an 8-and-a-half-by-11 piece of paper, it’s a human-engaged relational endeavour,” he adds. “If we’re going to develop metrics for that, we’d better be looking at both the beauty and the science from many angles.”
Research on end-of-life communicating and decision-making typically looks at what doctors or nurses say. It rarely takes into account the deeper linguistic and cognitive factors that influence patients’ abilities to communicate in the first place.
One study, by speech-language pathologists in the late 1990s, showed just how large these language challenges can be. They gave a battery of language comprehension and memory tests to 12 hospice patients: 11 of them couldn’t recall words, had difficulty understanding things and pronouncing words, and had difficulty remembering what was said to them. These symptoms get in the way of normal activities, like having conversations.
Even something as crucial as how well older patients can hear gets overlooked. In a 2016 survey of 510 hospice and palliative care providers across the US, 87% of them said they did not screen for hearing loss, even though 91% of them agreed that patients’ hearing loss impedes conversation and negatively affects the quality of the care they receive. Only 61% said they felt confident nonetheless that they could deal with patients with hearing problems.
The Gramlings pay a remarkable amount of attention to another factor: the pain, shortness of breath, fatigue and medications that can keep patients from communicating normally.
In his research, David has addressed what he calls “language in extremis”: what happens when people’s ideas about language and communication buckle under the strain of circumstances, as in multilingual experiences in Nazi concentration camps, or interpreting in border patrol detention facilities.
End-of-life medical conversations also often involve language in extremis. As cancer brings a person’s life near to its end, they may have lost some of their lifelong communicative powers to the disease or its treatments. They may have less ability to speak subtly and indirectly, which is important for politeness. Shallow breathing shortens utterances, and drugs may block word-finding. All of this reinforces an asymmetry in communication that doctors don’t always grasp.
At the end of a patient’s life, there may not be effective medical treatments, just things to discuss and plans to make.
A physician might encourage a patient to speak openly, and indicate their willingness to listen, but in practical terms, “That gesture doesn’t quite work,” David says, and doctors need to understand why.
At the same time, people still hew to lifelong social conventions about being a user of their language. They might be dying, but “They don’t back away from their interactional responsibilities,” David says. They honour turn-taking; they don’t interrupt. They tell jokes, they use family language, and they create mini-rituals of inclusion and exclusion, often to deal with the communication asymmetries.
“If I were picturing the developmental arc,” says David, “it wouldn’t be coasting down into death. It would be all the way and sometimes heightened. The kind of complex literacy you need to use in a hospital setting in a serious illness, and managing all your oncological terms – it’s almost like the competencies themselves get expanded in this end of life.”
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In his lab, Bob is examining even more fleeting aspects of conversations, such as pauses. It’s an interesting choice, because pauses might be considered as a sign that a speaker has lost their way or that an interaction is breaking down. On the other hand, pauses are easy to locate in the acoustic signals of recorded conversations. And they might indicate where someone is listening or about to say something important, so they might be a good thing.
Bob’s team used machine learning to identify pauses of 2 seconds or longer in spoken conversations, then human coders like Brigitte Durieux tried to categorise them, looking for ones that were more than just silence.
Because they didn’t have access to what the doctors or patients were actually thinking, they looked for the presence of emotional words and other sounds like sighs or crying on either side of the pause. Did a question about the quality of life, treatment hopes, prognosis or dying precede the pause? If so, the pause may have been because the doctor invited the patient to consider something.
The team found that during some of these pauses, some connection, shift or transformation was occurring. These “connectional silences” were rare. Out of a set of 1,000 clips with pauses, a mere 32 were connectional in nature. They were brief, as well, most lasting less than four seconds. But there’s still power in them.
The dynamics of a conversation change dramatically after such a connectional silence. Suddenly, a patient will be talking more than they did earlier. They’ll be directing the conversation, not the doctor. It’s as if the mutual agreement to pause for two seconds spilled into an agreement to shift roles.
“No, for some reason I guess I just in my head was gonna be on [chemotherapy] for the rest of my life and everything was gonna be hunky dory and…” a patient begins.
A 2.9-second connectional silence follows. The doctor inhales audibly, to signal they will respond, which makes the patient pick back up.
“You know. I knew early on, I mean you told me early on it’s not like and then this will be the rest of my life. Something, you know, might go down.”
The doctor responds. “Something. That can be a very hard thing to think about. That here we found something that’s helping but you can’t stay on it for the rest of your life.”
In other moments, the silence comes after a doctor has said something empathetic.
“It’s rare of me to tell somebody point-blank you’ve got to stop. However, I will say you have my permission to set limits,” the doctor says.
“Okay,” says the patient, then falls silent for nearly seven seconds.
His wife chuckles. “He can’t stand the thought of it. I can tell by his laugh,” then she laughs.
“I know he can’t stand the thought of it,” the doctor says.
“No, that’s okay,” the patient says. “I’ll get used to it.”
Or in another instance, the doctor tells a patient’s spouse, “what you feel is really hard. It’s really hard.” There’s a 2.8-second silence.
“I just wish he had a better quality of life.”
“I know, I know,” says the doctor.
Even though these connectional silences don’t happen often, Bob thinks they’re good linguistic markers of connection exactly because doctors don’t commonly use them. When someone good at monologuing and interrupting falls silent, it may mean they’re allowing something else to happen.
Bob surmises, “More often than not, the conversations that have a lot of space in them are probably going to lead to people feeling more heard and understood.”
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Judy had a question. Having come to the hospital at the University of Vermont to recover from the flu, this elegant, 83-year-old woman was lying in her bed. Two doctors had come to her room bearing news. It was cancer, not the flu, and it had spread from her liver. She could undertake a course of chemo, or she could have her pain managed as she died.
She turned to her daughter, Kate, sitting beside her. “What should I do?” she asked.
When the doctors had requested this meeting, Kate had dropped everything to be there. It seemed unusually serious. Now she knew why. She wondered why she hadn’t seen the signs of her mother’s cancer. Judy’s skin had started to look yellow, she recalled. But instead of recommending a check-up, she bought her mother some pinker make-up.
In this pivotal conversation, the doctors presented the options but also wanted to know what was important to Judy. They knitted the science together with thoughtfulness and compassion. Kate was struck by their slow, almost languid approach to delivering the news.
Slowly it dawned on her that this was a conversation about her mother’s death. Neither of them had prepared for this. Not now, not so soon.
“It had the nature of a conversation with a clergyperson rather than a doctor,” she remembers. Pastoral kept coming to mind.
At the end of the conversation, one of the doctors gave her his card. It was Bob Gramling. Kate has since seen the bright blue spectrographs showing gaps in conversation – where the pauses occur. She thinks these are important moments as well.
“Where there’s silence, where there are gaps, that’s where the caring shows up,” she says. “I think it’s incredible work to point out to doctors there’s a lot going on in the silences.”
Bob and David have only scratched the surface of how these conversations work. So far they have only studied English speakers, for example; pauses work differently in other cultures, so they need data on those moments, too. And because their data comes from people with cancer, there’s a concern that the analysis may be skewed.
With cancer, says Wen-Ying Sylvia Chou of the National Cancer Institute, most patients have time: “They continue to be themselves and continue to be part of the conversation and any ongoing discussion.” With other diseases, though, there could be more risk that the person would “lose cognitive function or physical function”. In those cases, she says, conversations “would look very different”.
Healthcare’s use of natural language processing – technologies that treat language as data – is expanding, and the chances are good that research like that of the Gramlings will expand to cover conversations with people who have other serious illnesses.
What is a conversation?
Bob isn’t the only researcher exploring the use of artificial intelligence in palliative care. In 2017, James Tulsky, a palliative care physician at Dana-Farber Cancer Institute in Boston and a Harvard professor who studies health communication, stressed that “mass-scale, high-quality automated coding will be required” to give feedback that helps clinicians improve their expressions of empathy.
Tulsky turned to Panayiotis Georgiou, a computer engineer at the University of Southern California, to develop automated detection of emotional connections between doctors and patients. In 2017, a team headed by Georgiou showed that certain acoustic features of the speech of couples in counselling could be used to predict marital outcomes. What if algorithms could do the same for palliative care conversations?
“The technology in theory exists out there to do all this,” Tulsky says. “It’s just a matter of doing enough research, running enough iterative trials, training up the machines to actually get these algorithms trained well enough so you could apply them to more random talk.”
I ask Judy’s daughter Kate what she thinks of using artificial intelligence to enrich human connections. “I wouldn’t worry about the technology,” she says. “The more technology, the more sacred the conversation becomes.”
What does she mean? Anything that enables humans to use their voices more effectively with each other is a good thing, she explains: “It’s because of the increasing technology that the interaction becomes more wonderful.”
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What is a conversation? It’s a setting where humans interact, often for a purpose but sometimes for none at all. People have to learn how to have conversations but when they become expert in their culture’s conventions, conversing becomes so automatic it feels natural.
Modern healthcare has hijacked conversation and made it a tool by which physicians can achieve their ends.
According to David, “The contemporary hospital still understands ‘conversation’ as ‘making a pre-determined X happen through conversation’.” This is a barrier in serious illness and end-of-life care, where the conversations need to be venues for figuring out what the X might be.
At the end of a patient’s life, there may not be effective medical treatments, just things to discuss and plans to make. This may need a more natural conversation than a medical one, a conversation in which none of the participants may know what the outcome will be.
After all, these conversations aren’t just for doctors; they’re for patients, too. And family members, nursing aides, housekeeping staff. “There are a lot of human beings who have a vested interest in this other human,” Bob says.
There are critics who don’t think artificial intelligence and machine learning have a role to play in palliative care. Bob’s view is that shying away from analysing this kind of conversation in this way means that essential opportunities for improving it will be missed.
“It is helpful, as a discipline that has historically thought of communication as just the art of medicine, to actually think that, no, this is a science,” he says. And understanding that science could help us re-engineer the healthcare system to support more meaningful conversations.
He’s aware of the delicacy in institutionalising and commodifying a human interaction, though. “As a physician,” he says, “I was afraid of being a researcher that was going to oversimplify this kind of sacred experience into something that’s measurable and convenient and essentially meaningless.”
That’s where Brigitte Durieux struggled with her feelings as she listened to thousands of audio clips of pauses. In some conversations, people were laughing, but she was struck by the loneliness in others. She had begun to recognise patients’ voices and wondered what had happened to them.
“Nobody is perfect, but there are times when one realises there’s something that could be said to make this feel less like a loss,” she says. Sometimes she whispered under her breath something the doctors could have offered instead.
After Bob found Brigitte crying, he wrote an ethics proposal to the hospital so that he could introduce a new procedure into his lab. He borrowed an idea from the hospital’s palliative care unit, where staff gather every week to say the names of people who have died, then ring a singing bowl.
Now, at the start of every Vermont Conversation Lab meeting, a researcher reads the name of one of the patients from the database and rings the bowl. So far, they have gone through the list of names twice.
The ceremony helps, says Brigitte, because it reduces the guilt of turning a sensitive moment in someone’s life into a piece of data.
“What it does ultimately,” she says, “is recognise the humanity of things.”
