Rachel O’Neill knew her mother had terminal cancer, but there was never a timeline put on it
by Rachel O’Neill
I’ve six months to live.”
Five words that turned my life upside down.
I always knew that terminal cancer was something I would have to deal with. But because there was never a timeline put on it, it was something I didn’t have to think about. Sure, Mum had incurable cancer, but it wasn’t something that was going to affect me right this second.
And then suddenly it was there, affecting every part of my life.
In the time it took to say those five little words, my entire status changed. I was no longer someone whose mother was sick, I was someone whose mother was dying. Life as I knew it was officially on pause.
Suddenly, the “how’s your Mum doing?” questions become a lot harder to answer. I’m a very open person which means everyone tends to know everything that goes on in my life. I’m also a terrible liar. If someone asks me how Mum is doing, I will answer it very honestly. So honestly, that it can make people uncomfortable. I’ve had people squirm after I’ve told them that Mum is dying. I’ve had people shuffle awkwardly from foot to foot, desperately thinking of something to say that won’t upset me or them.
Now I’ve adopted a very simple tactic to counteract the awkwardness. I minimise what’s going on by joking about it instead.
Minimise, minimise, minimise.
Never let people see how badly you are struggling with it. I must never drop the facade that I’m managing to hold it together when in reality this is the worst thing I’ve ever had to face.
To make people comfortable, I tell them that my mother is dying and follow it with a quick “it’s fine”. I’ve joked about how I might finally be able to get on the property ladder with the inheritance. I quickly change the subject when I can feel people getting nervous, even if I’m bursting to talk about what’s happening. I’ve done everything I can to make people feel more comfortable around me because if I can joke about it, it means they can relax a little.
Nobody is truly comfortable with death.
Despite the fact that we “do death well” in Ireland, it’s still a subject that many of us won’t talk about. Confronting the fact that someday, we will cease to be here is something we’ll spend a lifetime trying to come to terms with. Many of us never do.
Knowing that myself and Mum have so little time left together is hard. I am terrified of regret, of saying the wrong thing, of not asking the right questions, of not making enough of our time together. It now feels like every conversation feels like it has to be meaningful in some way. I feel like if a moment with her isn’t memorable, I’ve wasted it. It’s a suffocating pressure to be under.
What has stood out to me is the endless kindness I’ve experienced from every corner of my life
The pressure manifests itself in many ways. For example, I’ve been in a perpetual state of anticipatory grief for the last few months. I’m grieving the life we won’t have together. I’m grieving that she won’t see me get married or meet her grandchildren. I’m grieving the advice she won’t be able to give me, the questions I won’t be able to ask her and the adventures she will never get to have.
That is a very painful process which your body does everything to protect yourself from. I’m constantly tense because I’m bracing myself for an impact that I know is coming, despite not being sure when it’ll hit. I feel like if I can process this pain now, it won’t be as painful when the inevitable comes. It’s the only way I know how to prepare for what’s coming.
Some people struggle to understand my approach. Some have even said to me that I need to move past the grief. They’ve said that my mum needs me to be upbeat and strong for her. To me, that feels fake. Anxiety and depression are in my DNA so worrying about the future and being down about it are things I’m very used to doing. It’s a coping mechanism that some people just don’t understand. They feel that I’m doing Mum a disservice, that I should pretend to be okay when in reality I am struggling badly with everything that’s happening. What I say to those people is that there’s no “right” way to grieve. It’s a uniquely personal process, best left to those undergoing it.
What has stood out to me over the past few months is the endless kindness I’ve experienced from every corner of my life. People offering food, time, shoulders to cry on and a kind ear to listen. People encouraging me to open up when I can and who treat me like a normal human being when I can’t. The empathy and kindness have been utterly overwhelming but serves as a reminder that people really do care. It gives me hope that when I come out the other side of this, I’ll have people who will help me build myself back up again.
Having discussed with Mum what happens when this is all over, she told me something that I’ll hold dear to my heart forever.
“Just let yourself be loved. It’s no more than you deserve and always carry with you that you are my beloved child. Always and forever.”
No matter what happens, a mother’s love lasts forever.
Insights into the little-studied realm of last words.
By Michael Erard
Mort Felix liked to say that his name, when read as two Latin words, meant “happy death.” When he was sick with the flu, he used to jokingly remind his wife, Susan, that he wanted Beethoven’s “Ode to Joy” played at his deathbed. But when his life’s end arrived at the age of 77, he lay in his study in his Berkeley, California, home, his body besieged by cancer and his consciousness cradled in morphine, uninterested in music and refusing food as he dwindled away over three weeks in 2012. “Enough,” he told Susan. “Thank you, and I love you, and enough.” When she came downstairs the next morning, she found Felix dead.
During those three weeks, Felix had talked. He was a clinical psychologist who had also spent a lifetime writing poetry, and though his end-of-life speech often didn’t make sense, it seemed to draw from his attention to language. “There’s so much so in sorrow,” he said at one point. “Let me down from here,” he said at another. “I’ve lost my modality.” To the surprise of his family members, the lifelong atheist also began hallucinating angels and complaining about the crowded room—even though no one was there.
Felix’s 53-year-old daughter, Lisa Smartt, kept track of his utterances, writing them down as she sat at his bedside in those final days. Smartt majored in linguistics at UC Berkeley in the 1980s and built a career teaching adults to read and write. Transcribing Felix’s ramblings was a sort of coping mechanism for her, she says. Something of a poet herself (as a child, she sold poems, three for a penny, like other children sold lemonade), she appreciated his unmoored syntax and surreal imagery. Smartt also wondered whether her notes had any scientific value, and eventually she wrote a book, Words on the Threshold, published in early 2017, about the linguistic patterns in 2,000 utterances from 181 dying people, including her father.
Despite the limitations of this book, it’s unique—it’s the only published work I could find when I tried to satisfy my curiosity about how people really talk when they die. I knew about collections of “last words,” eloquent and enunciated, but these can’t literally show the linguistic abilities of the dying. It turns out that vanishingly few have ever examined these actual linguistic patterns, and to find any sort of rigor, one has to go back to 1921, to the work of the American anthropologist Arthur MacDonald.
To assess people’s “mental condition just before death,” MacDonald mined last-word anthologies, the only linguistic corpus then available, dividing people into 10 occupational categories (statesmen, philosophers, poets, etc.) and coding their last words as sarcastic, jocose, contented, and so forth. MacDonald found that military men had the “relatively highest number of requests, directions, or admonitions,” while philosophers (who included mathematicians and educators) had the most “questions, answers, and exclamations.” The religious and royalty used the most words to express contentment or discontentment, while the artists and scientists used the fewest.
MacDonald’s work “seems to be the only attempt to evaluate last words by quantifying them, and the results are curious,” wrote the German scholar Karl Guthke in his book Last Words, on Western culture’s long fascination with them. Mainly, MacDonald’s work shows that we need better data about verbal and nonverbal abilities at the end of life. One point that Guthke makes repeatedly is that last words, as anthologized in multiple languages since the 17th century, are artifacts of an era’s concerns and fascinations about death, not “historical facts of documentary status.” They can tell us little about a dying person’s actual ability to communicate.
Some contemporary approaches move beyond the oratorical monologues of yore and focus on emotions and relationships. Books such as Final Gifts, published in 1992 by the hospice nurses Maggie Callanan and Patricia Kelley, and Final Conversations, published in 2007 by Maureen Keeley, a Texas State University communications-studies scholar, and Julie Yingling, professor emerita at Humboldt State University, aim to sharpen the skills of the living for having important, meaningful conversations with the dying. Previous centuries’ focus on last words has ceded space to the contemporary focus on last conversations and even nonverbal interactions. “As the person gets weaker and sleepier, communication with others often becomes more subtle,” Callanan and Kelley write. “Even when people are too weak to speak, or have lost consciousness, they can hear; hearing is the last sense to fade.”
I spoke to Maureen Keeley shortly after the death of George H. W. Bush, whose last words (“I love you, too,” he reportedly told his son, George W. Bush) were widely reported in the media, but she said they should properly be seen in the context of a conversation (“I love you,” the son had said first) as well as all the prior conversations with family members leading up to that point.
At the end of life, Keeley says, the majority of interactions will be nonverbal as the body shuts down and the person lacks the physical strength, and often even the lung capacity, for long utterances. “People will whisper, and they’ll be brief, single words—that’s all they have energy for,” Keeley said. Medications limit communication. So does dry mouth and lack of dentures. She also noted that family members often take advantage of a patient’s comatose state to speak their piece, when the dying person cannot interrupt or object.
Many people die in such silence, particularly if they have advanced dementia or Alzheimer’s that robbed them of language years earlier. For those who do speak, it seems their vernacular is often banal. From a doctor I heard that people often say, “Oh fuck, oh fuck.” Often it’s the names of wives, husbands, children. “A nurse from the hospice told me that the last words of dying men often resembled each other,” wrote Hajo Schumacher in a September essay in Der Spiegel. “Almost everyone is calling for ‘Mommy’ or ‘Mama’ with the last breath.”
It’s still the interactions that fascinate me, partly because their subtle interpersonal textures are lost when they’re written down. A linguist friend of mine, sitting with his dying grandmother, spoke her name. Her eyes opened, she looked at him, and died. What that plain description omits is how he paused when he described the sequence to me, and how his eyes quivered.
But there are no descriptions of the basics of last words or last interactions in the scientific literature. The most linguistic detail exists about delirium, which involves a loss of consciousness, the inability to find words, restlessness, and a withdrawal from social interaction. Delirium strikes people of all ages after surgery and is also common at the end of life, a frequent sign of dehydration and over-sedation. Delirium is so frequent then, wrote the New Zealand psychiatrist Sandy McLeod, that “it may even be regarded as exceptional for patients to remain mentally clear throughout the final stages of malignant illness.” About half of people who recover from postoperative delirium recall the disorienting, fearful experience. In a Swedish study, one patient recalled that “I certainly was somewhat tired after the operation and everything … and I did not know where I was. I thought it became like misty, in some way … the outlines were sort of fuzzy.” How many people are in a similar state as they approach death? We can only guess.
We have a rich picture of the beginnings of language, thanks to decades of scientific research with children, infants, and even babies in the womb. But if you wanted to know how language ends in the dying, there’s next to nothing to look up, only firsthand knowledge gained painfully.
After her father died, Lisa Smartt was left with endless questions about what she had heard him say, and she approached graduate schools, proposing to study last words academically. After being rebuffed, she began interviewing family members and medical staff on her own. That led her to collaborate with Raymond Moody Jr., the Virginia-born psychiatrist best known for his work on “near-death experiences” in a 1975 best-selling book, Life After Life. He has long been interested in what he calls “peri-mortal nonsense” and helped Smartt with the work that became Words on the Threshold, based on her father’s utterances as well as ones she’d collected via a website she called the Final Words Project.
One common pattern she noted was that when her father, Felix, used pronouns such as it and this, they didn’t clearly refer to anything. One time he said, “I want to pull these down to earth somehow … I really don’t know … no more earth binding.” What did these refer to? His sense of his body in space seemed to be shifting. “I got to go down there. I have to go down,” he said, even though there was nothing below him.
He also repeated words and phrases, often ones that made no sense. “The green dimension! The green dimension!” (Repetition is common in the speech of people with dementia and also those who are delirious.) Smartt found that repetitions often expressed themes such as gratitude and resistance to death. But there were also unexpected motifs, such as circles, numbers, and motion. “I’ve got to get off, get off! Off of this life,” Felix had said.
Smartt says she’s been most surprised by narratives in people’s speech that seem to unfold, piecemeal, over days. Early on, one man talked about a train stuck at a station, then days later referred to the repaired train, and then weeks later to how the train was moving northward.
“If you just walk through the room and you heard your loved one talk about ‘Oh, there’s a boxing champion standing by my bed,’ that just sounds like some kind of hallucination,” Smartt says. “But if you see over time that that person has been talking about the boxing champion and having him wearing that, or doing this, you think, Wow, there’s this narrative going on.” She imagines that tracking these story lines could be clinically useful, particularly as the stories moved toward resolution, which might reflect a person’s sense of the impending end.
In Final Gifts, the hospice nurses Callanan and Kelley note that “the dying often use the metaphor of travel to alert those around them that it is time for them to die.” They quote a 17-year-old, dying of cancer, distraught because she can’t find the map. “If I could find the map, I could go home! Where’s the map? I want to go home!” Smartt noted such journey metaphors as well, though she writes that dying people seem to get more metaphorical in general. (However, people with dementia and Alzheimer’s have difficulty understanding figurative language, and anthropologists who study dying in other cultures told me that journey metaphors aren’t prevalent everywhere.)
Even basic descriptions of language at the end of life would not only advance linguistic understanding but also provide a host of benefits to those who work with the dying, and to the dying themselves. Experts told me that a more detailed road map of changes could help counter people’s fear of death and provide them with some sense of control. It could also offer insight into how to communicate better with the dying. Differences in cultural metaphors could be included in training for hospice nurses who may not share the same cultural frame as their patients.
But studying language and interaction at the end of life remains a challenge, because of cultural taboos about death and ethical concerns about having scientists at a dying person’s bedside. Experts also pointed out to me that each death is unique, which presents a variability that science has difficulty grappling with.
And in the health-care realm, the priorities are defined by doctors. “I think that work that is more squarely focused on describing communication patterns and behaviors is much harder to get funded because agencies like NCI prioritize research that directly reduces suffering from cancer, such as interventions to improve palliative-care communication,” says Wen-ying Sylvia Chou, a program director in the Behavioral Research Program at the National Cancer Institute of the National Institutes of Health, who oversees funding on patient-doctor communication at the end of life.
Despite the faults of Smartt’s book (it doesn’t control for things such as medication, for one thing, and it’s colored by an interest in the afterlife), it takes a big step toward building a corpus of data and looking for patterns. This is the same first step that child-language studies took in its early days. That field didn’t take off until natural historians of the 19th century, most notably Charles Darwin, began writing down things their children said and did. (In 1877, Darwin published a biographical sketch about his son, William, noting his first word: mum.) Such “diary studies,” as they were called, eventually led to a more systematic approach, and early child-language research has itself moved away from solely studying first words.
“Famous last words” are the cornerstone of a romantic vision of death—one that falsely promises a final burst of lucidity and meaning before a person passes. “The process of dying is still very profound, but it’s a very different kind of profoundness,” says Bob Parker, the chief compliance officer of the home health agency Intrepid USA. “Last words—it doesn’t happen like the movies. That’s not how patients die.” We are beginning to understand that final interactions, if they happen at all, will look and sound very different.
Cancer is nudging me to picture dying in a new way
By Adam Philip Stern
“It was the most peaceful sleep.” That’s how my paternal grandmother referred to the time she was technically dead for several minutes before doctors shocked her back to life. She lived another decade after that, but never once to my knowledge expressed a fear of dying.
As I trained to become a physician-scientist with a focus on neuropsychiatric disorders, I often thought of my grandmother’s description of temporary death. I learned that there were credible physiologic explanations for her to have experienced death as an immensely restful sleep.
It’s an idea that resonates even more strongly with me since I was diagnosed with metastatic kidney cancer. I fervently hope my superstar medical team will help me outrun this disease for many years to come, but I must also face the possibility that I could die young. That initially frightened me in the expected ways. What does it feel like to die? What if I experience a bad death with tubes going into or coming out of every orifice, or my ribs being cracked as doctors try to restart my heart?
A recent experience with an endoscopy to find the source of cramping and vomiting after I ate muted those fears. As I laid on the gurney, the nurse let me know I would soon be getting medicine through the intravenous line: a little something to help me relax, to prevent pain, and to have no memory of the procedure, during which I would be partly awake.
As the fentanyl and midazolam began flowing into my vein, the last memory I had is feeling totally at peace. It was the most content I can ever recall feeling. I am thankful to have never struggled with addiction, but that moment gave me a better understanding of why people seek such a feeling no matter the cost.
What has stuck with me since that procedure is the sense that leaving the world does not have to be gruesome, and might even be the best feeling ever, just like my grandmother described it.
There are, of course, physiologic explanations for why peace may accompany dying.
As the brain begins to adapt to oxygen deprivation, its noncritical regions begin to shut down, turning off for individuals who are actively dying the burdens of complex neurologic tasks like risk aversion, problem solving, and anticipatory worry that weigh on us during our waking lives. While these brain activities keep us alert and feeling attached to our bodies, tamping them down may account for the feeling of lightness, even floating above the body, which many near-death survivors describe.
The classic “death rattle” heard when the body can no longer clear fluids from the airway, often seen as a gruesome sign, is likely a signal of a transition to such a relaxed, unfettered state that the brain is no longer burdened with that task.
The emotional centers within the brain, however, are so deeply engrained in our functioning as humans that they remain on and engaged throughout much of the dying process. That aligns with descriptions of near-death experiences of vivid and realistic interactions with loved ones who have passed.
Even as death approaches and the body and brain are shutting down, there is good evidence to suggest that individuals are aware of their surroundings and can hear and feel the presence of their loved ones. These basic sensations persist in ways that can be a gift to dying individuals, ensuring they are not alone in their last moments — a most common fear.
Palliative care and hospice are stigmatized in our society because they are so closely associated with death, a topic that tends to make people uncomfortable. My attitude toward them has shifted dramatically since my diagnosis. With their focus entirely on providing comfort and maximizing quality of life — even in death — I think they play a most important role and intend to do everything in my power to engage in that process when I need it.
My maternal grandfather died two years ago at the age of 93, just before I learned I had cancer. He used to tell me he “wasn’t afraid of death, just all the things that [he] would miss.”
I think of him whenever something happens to me that would have sparked joy in him, and wish he was still alive. I’m not sure I believed him when he told me he wasn’t afraid of dying, but I do now. What frightens me today has little to do with my death and much more to do with the moments I’ll miss afterwards: anniversaries with my wife, birthdays and graduations with my son, watching my parents age and my brother and other loved ones continue to blossom in their lives.
I can’t say if this perspective will change again. I imagine it will. Death as an abstract concept is probably a lot less terrifying than staring it in the face. But I’ll remember what my grandparents said and try to move forward with the same kind of contented pragmatism they shared with me. In the interim, devoted oncology researchers, my particularly skilled doctors, and I are doing our absolute best to keep these musings firmly in the academic realm.
When Phil Robinson, 91, was told cancer had spread through his lungs and he had mere weeks left to live, he said his goodbyes, got his affairs in order and was prepared to die — until doctors told him he was, in fact, cancer-free and could return home.
“I don’t know where I’m going from here. I really don’t know how to handle this at all,” said Robinson.
“I don’t think most people get this chance at all. Never.”
Robinson went to Winnipeg’s St. Boniface Hospital on March 20 because he was having trouble breathing. After several tests, he was diagnosed with pneumonia and admitted to a ward, where he started treatment.
A doctor visited him the next morning with grave news: results of a scan appeared to show the spread of cancer throughout his chest. Cancer in his neck that he’d had radiation treatment for nine years earlier, it seemed, had spread.
“He said, ‘Phil, you’ve got two to three weeks to live.'”
My doctor came round and he said, ‘Oh, Phil. I have one small problem. We made a mistake.’
– Phil Robinson
Robinson, a widower of about 10 years, had his son, 60, with him at the time. Robinson didn’t want to alarm him.
“I said, ‘Well, we’ve got to do something about it.'”
Over the following two weeks, all of Robinson’s friends and family came to his bedside to pay their respects and say goodbye. The hospital chaplain visited him. It took some time for him to get there, but Robinson eventually asked to speak to the medical assistance in dying, or MAID, team.
“I had a wish, because pushing sort of 92 years old, you don’t really mind. You’re due to go if you’re ready to go,” he said. “I wanted to finish it right now and get it out of the way.”
‘We made a mistake’
But a definitive diagnosis of cancer was required before he could be offered medically assisted death, so he went for another CT scan. A different doctor delivered the results.
“He said, ‘Oh, Phil. I have one small problem. We made a mistake. You do not have cancer through your body,'” Robinson said.
“‘You don’t have this anymore, and you never had.'”
“Oh!” he laughed nervously, recalling the moment.
“So all of a sudden I find that my cancer is still exactly where it was around my neck, it’s never moved to anywhere else, and it did leave you in a complete sort of — you don’t know where the hell you go.”
According to the hospital discharge summary, the second CT scan showed his lungs and lymphatic areas had cleared. The signs of the infection — which was originally believed to be cancer — had cleared on the second scan.
His son took him back home on April 8.
“[Robinson had] been seen by the palliative team but now discharged as it appears he has no cancer,” reads his discharge summary.
CBC contacted the Winnipeg Regional Health Authority to ask why additional tests after the first CT scan appear not to have been done before Robinson was told he had only weeks left to live.
A spokesperson for the WRHA said it cannot comment on Robinson’s situation for privacy reasons, and that no critical incident report has been filed.
Robinson has been in touch with CancerCare’s patient relations department to get answers. He hopes someone can offer him some guidance.
‘They’re thrilled that I’m back’
“I am not dying. Nope. I’m here for the long run. I don’t know how long that’s going to be, but I’m here,” Robinson said with a chuckle, then gestured out his window. He’s discovered a newfound easy connection with the backyard wildlife.
“Look at my squirrel — he’s sitting out there on the little thing. You can’t see him, but he’s sitting there, watching us.”
Once home, Phil began sharing the news that he was in fact still around with his friends and family, as well as home-care workers and even the two ladies who clip his nails every two weeks, who visited him in hospital to say goodbye.
“I had hugs like you wouldn’t believe,” he said with a laugh. “They all have the same response. They’re thrilled that I’m back.”
But for Robinson, it’s a bit more complicated, especially when he’s alone with his thoughts. He already faced the difficult task of saying goodbye to everyone he loves: 24 family members and 12 of his ‘secondary family’ of supportive friends, until he couldn’t bear the sadness of repeat visits.
He reflects on his own vitality. At 16, Robinson was a member of the U.K.’s Royal Navy during the Second World War, bringing supplies and refreshments to troops. He travelled from his home in Norwich, England after the war to join the Canadian Army, serving in the Korean War, before joining British Airways as a traffic assistant, and later a pilot for the military.
In his lifetime, he’s lost two wives, two siblings and two of three children to cancer.
“I accept the fact that I’m not dead. But now I’m just scared that I’m going to get sick or something, and everybody will say, ‘He’s dead again. And we’ve already done this.’ It’s confusing as hell.”
Robinson sits on his back patio every afternoon where things are certain: the chirp of birds at the feeder, the sociable squirrels, a rabbit who drops by each day.
“How many people do you know who died and came back? And particularly it was Easter,” he laughed, with a tear in his eye.
Preparing for the death of a loved one is difficult no matter the circumstances.
But Annalisia Wilharm said she never expected a doctor would deliver the bad news about her grandfather via a video screen on a robot.
Wilharm was sitting by her grandfather’s bedside in the ICU of the Kaiser Permanente Medical Center in Fremont, California, last Monday night when the machine rolled into their room and a doctor, appearing via live video link, offered his grim prognosis. Her grandfather Ernest Quintana, 78, died the next day.
“I think they should have had more dignity and treated him better than they did,” Wilharm told CNN. “No granddaughter, no family member should have to go through what I just did with him.”
Wilharm told CNN her family knew that her grandfather would die soon. But they’re angered by the way the situation was handled and how the news was delivered. She said she and her family hope no one else receives the same treatment.
“I was so scared for him and disappointed with the delivery,” Wilharm said, choking up. “And I could tell by the look on his face what that did to him.”
A spokeswoman for the hospital offered “sincere condolences to the family” in a statement sent to CNN.
“We take this very seriously and have reached out to the family to discuss their concerns,” said Michelle Gaskill-Hames, a senior vice president and area manager of Kaiser Permanente Greater Southern Alameda County.
“Our physicians and nurses were in regular, in-person communication with the patient and family about his condition from the moment he entered our hospital,” she added. “The evening video tele-visit was a follow-up to earlier physician visits — it did not replace previous conversations with patient and family members and was not used in the delivery of the initial diagnosis.”
For years, Quintana had lived with chronic obstructive pulmonary disease, a progressive lung disease that make makes it hard to breathe. It includes emphysema and chronic bronchitis.
Last Monday, doctors at the hospital conducted tests to assess the state of Quintana’s lungs. That evening, Wilharm told her mother and grandmother — Quintana’s wife of 58 years — that the pair should go home and get some rest.
Soon after a robot with a video screen came into the room, accompanied by a nurse who remained silent. A doctor on the screen began speaking to them.
Wilharm said she had no idea who the doctor was or where he was located.
She filmed the interaction on her phone as the doctor relayed the results of her grandfather’s tests.
In the footage viewed by CNN, the doctor on the screen tells Quintana, “Unfortunately there’s nothing we can treat very effectively.”
The doctor explains they can give Quintana morphine to make him more comfortable, but that would make breathing more difficult.
Wilharm then tells her grandfather the doctor is recommending hospice care at home.
“You know, I don’t know if he’s going to get home,” the doctor says, adding that the best treatment plan at that point was to begin focusing on Quintana’s comfort.
Wilharm told CNN that at that point she had to call her mother and grandmother so they could get back to the hospital.
“It didn’t matter (to the hospital) that his wife of 58 years wasn’t there for that,” she said.
Wilharm told CNN that her family was under no illusions about her grandfather’s condition.
“We knew that we were going to lose him,” Wilharm told CNN in a phone interview Saturday. “Our point is the delivery (of the news). There was no compassion.”
When her grandmother returned to the hospital, she asked the nurses about the robot. According to Wilharm, they explained the hospital was small and the robot was used to make rounds at night.
Gaskill-Hames, the hospital spokeswoman, said the health care provider is “continuously learning how best to integrate technology into patient interactions.”
“In every aspect of our care, and especially when communicating difficult information, we do so with compassion in a personal manner,” she said, adding that the term “robot” is “inaccurate and inappropriate.”
“This secure video technology is a live conversation with a physician using tele-video technology, and always with a nurse or other physician in the room to explain the purpose and function of the technology,” Gaskill-Hames added. It “allows a small hospital to have additional specialists such as a board-certified critical care physician available 24/7, enhancing the care provided and bringing additional consultative expertise to the bedside.”
Wilharm told CNN that a doctor had visited Quintana in person earlier in the day.
Wilharm said the in-person doctor was “very sweet” and held her grandfather’s hand as she spoke with him about hospice care and his options.
Gaskill-Hames said the hospital does not encourage the use of technology to replace personal interactions between patients and health care workers.
“We understand how important this is for all concerned, and regret that we fell short of the family’s expectations,” she said.
“That was one of the worst days of my life,” she said.
Last summer, six months before my mother died, I walked into her bedroom, and she greeted me with tinny hello and a big smile. She then resumed a conversation with her mother – who had died in 1973.
“Where are you?” Mom asked, as though Grandma, a onetime Fifth Avenue milliner, was on one of her many European hat-buying junkets. As I stood there dumbstruck, Mom continued chatting – in a young girl’s voice, no less – for several more minutes. Was this a reaction to medication, a sign of advancing dementia? Or was she preparing to “transition” to wherever she was going next?
Regardless, Mom was freaking me out – as well as my brother, sister and father.
As it turned out, my mother’s chat with a ghost was a signal that the end was inching closer. Those who work with terminally ill people, such as social workers and hospice caregivers, call these episodes or visions a manifestation of what is called Nearing Death Awareness.
“They are very common among dying patients in hospice situations,” Rebecca Valla, a psychiatrist in Winston-Salem, N.C., who specializes in treating terminally ill patients, wrote in an email. “Those who are dying and seem to be in and out of this world and the ‘next’ one often find their deceased loved ones present, and they communicate with them. In many cases, the predeceased loved ones seem (to the dying person) to be aiding them in their ‘transition’ to the next world.”
While family members are often clueless about this phenomenon, at least at the outset, a small 2014 study of hospice patients concluded that “most participants” reported such visions and that as these people “approached death, comforting dreams/visions of the deceased became more prevalent.”
Jim May, a licensed clinical social worker in Durham, North Carolina, said that family members – and patients themselves – are frequently surprised by these deathbed visitors, often asking him to help them understand what is happening. “I really try to encourage people, whether it’s a near-death experience or a hallucination, to just go with the flow,” May explained after I told him about my mom’s visitations. “Whatever they are experiencing is real to them.”
Valla agreed, telling me what not to do: “Minimize, dismiss or, worse, pathologize these accounts, which is harmful and can be traumatic” to the dying person. In fact, May said, “most patients find the conversations to be comforting.”
That certainly appeared to be the case with my mother, who had happy exchanges with several good friends, who, like my grandmother, were no longer living.
In a moving 2015 TED talk, Christopher Kerr, the chief medical officer at the Center for Hospice and Palliative Care in Buffalo, showed a clip of one his terminally ill patients discussing her deathbed visions, which included her saying, “My mom and dad, my uncle, everybody I knew that was dead was there (by my side). I remember seeing every piece of their face.” She was lucid and present.
Since Mom had already been diagnosed with advanced dementia, I originally thought her talks were a sign of worsening illness. In fact, current research posits that a combination of physiological, pharmacological and psychological explanations may be at play. That’s exactly what May’s hands-on experience of more than 14 years revealed to him, too.
May acknowledged that it’s understandably “hard to have empirical evidence” for such episodes in patients, but that it’s important for family members and health professionals to figure out how to respond
Last fall, another visit to Mom raised the stakes. As before, she greeted me by name and spoke coherently for several minutes before she turned to the bookcase near her bed and began cooing to an imagined baby. I watched in astonishment as Mom gitchi-gitchi-goo-ed to an apparition she referred to as “her” baby.
“My baby is very sick,” she repeated, clearly deeply concerned about this apparition. “She’s very thirsty. She’s hungry. She’s crying. Can’t you do anything for her?”
I didn’t know what to do. Neither did my siblings or Dad. I had long stopped “correcting” Mom. A year earlier, Mom had regaled me with the story that my niece Anna had made a delicious dinner the night before and was at that very moment out doing errands. In fact, Anna was away at college; also, I’ve never seen her cook, and she doesn’t even have a driver’s license. But why contradict Mom’s vision of a perfect granddaughter?
Social worker May, when asked about these sorts of imaginings, put it this way: “Don’t argue, because an argument is not what they need.” I decided to go along with the “baby” story and told Mom I was going to take the baby to the kitchen to bottle-feed her, which alleviated the crisis.
As the fall days grew shorter, Mom’s “baby” was a continuing presence at my visits, with my mother becoming increasingly distressed. I would settle things down by giving the imagined infant an imaginary bottle, or cradle her in my arms and leave the room for a while, saying I was taking her to the doctor. At one point I asked gently, “Mom, do you think the baby is you?” She didn’t miss a beat. “Yes,” she replied. “The baby is hurting.”
In fact, the largest study to date on deathbed visions reported on numerous cases when the “arrival of … a visitor appeared to arouse anxiety and intensify death fear.”
But what to do? I hated that Mom’s level of distress was skyrocketing in what turned out to be her final weeks. I simply held Mom’s hands a bit tighter and tried to distract her as best I could with family and political news. Oh, and I cooked, which she loved my doing.
One evening I made a simple dinner: spaghetti with a store-bought marinara sauce and a bright green leafy salad. Mom had pretty much stopped eating by this point, which is common as the end draws near, but she made a show of trying her best with this repast for the two of us, plus my father. It was heartbreaking to watch her try to spear the pasta, but she managed several hearty mouthfuls, saving room for a scoop of Sealtest vanilla ice cream.
After dinner, I helped her back to bed, where she exclaimed: “How did you know?” “How did I know what?” I asked. “That was exactly how I wanted my funeral to be. You invited all my favorite people, and the food was just what I would have ordered.”
She was beaming. Six weeks later, she passed – and pasta and salad were on the menu at her service.
If someone you love has died in a hospital, you may have seen modern death at its worst: overly medicalized, impersonal, and filled with unnecessary suffering. The experience can be a bitter lesson in Buddha’s most basic teaching: the more we try to avoid suffering (including death), the worse we often make it.
Even though roughly half of Americans die in hospitals and other institutions, most of us yearn to die at home, and perhaps to experience our leavetaking as a sacred rite of passage rather than a technological flail. You don’t have to be a saint, or be wealthy, or have a Rolodex of influential names to die well. But you do need to prepare. It helps to be a member of at least one “tribe,” to have someone who cares deeply about you, and to have doctors who tell you necessary truths so that you can decide when to stop aggressive treatment and opt for hospice care. Then those who care for you can arrange the basics: privacy, cleanliness, and quiet, the removal of beeping technologies, and adequate pain control. They can listen and express their love, and provide the hands-on bedside care hospice doesn’t cover.
From then on, a more realistic hope for our caregivers, and for ourselves when we are dying, may not be an idealized “good death” by a well-behaved patient, but a “good enough death,” where we keep the dying as comfortable and pain-free as possible, and leave room for the beautiful and the transcendent—which may or may not occur.
Hospice professionals often warn against high expectations. Things will probably not go as planned, and there comes a point when radical acceptance is far more important than goal-oriented activity. They don’t like the idea, inherent in some notions of the “good death,” of expecting the dying to put on a final ritual performance for the living, one marked by beautiful last words, final reconciliations, philosophical acceptance of the coming of death, lack of fear, and a peaceful letting go.
“I don’t tell families at the outset that their experience can be life-affirming, and leave them with positive feelings and memories,” said hospice nurse Jerry Soucy. “I say instead that we’re going to do all we can to make the best of a difficult situation, because that’s what we confront. The positive feelings sometimes happen in the moment, but are more likely to be of comfort in the days and months after a death.” This is what it took, and how it looked, for the family of John Masterson.
John was an artist and sign painter, the ninth of ten children born to a devout Catholic couple in Davenport, Iowa. His mother died when he was 8, and he and two of his sisters spent nearly a year in an orphanage. He moved to Seattle in his twenties, earned a black belt in karate, started a sign-painting business, and converted to Nichiren Shoshu, the branch of Buddhism whose primary practice is chanting. He never left his house without intoning three times in Japanese Nam Myoho Renge Kyo (“I Honor the Impeccable Teachings of the Lotus Sutra”).
He was 57 and living alone, without health insurance, when he developed multiple myeloma, an incurable blood cancer. He didn’t have much money: he was the kind of person who would spend hours teaching a fellow artist how to apply gold leaf, while falling behind on his paid work. But thanks to his large extended family, his karate practice, and his fierce dedication to his religion, he was part of several tribes. He was devoted to his three children—each the result of a serious relationship with a different woman—and they loved him equally fiercely. His youngest sister, Anne, a nurse who had followed him to Seattle, said he had “an uncanny ability to piss people off but make them love him loyally forever.”
When he first started feeling exhausted and looking gaunt, John tried to cure himself with herbs and chanting. By the time Anne got him to a doctor, he had a tumor the size of a half grapefruit protruding from his breastbone. Myeloma is sometimes called a “smoldering” cancer, because it can lie dormant for years. By the time John’s was diagnosed, his was in flames.
Huge plasma cells were piling up in his bone marrow, while other rogue blood cells dissolved bone and dumped calcium into his bloodstream, damaging his kidneys and brain function. He grew too weak and confused to work or drive. Bills piled up and his house fell into foreclosure. Anne, who worked the evening shift at a local hospital, moved him into her house and drove him to various government offices to apply for food stamps, Social Security Disability, and Medicaid. She would frequently get up early to stand in line outside social services offices with his paperwork in a portable plastic file box.
Medicaid paid for the drug thalidomide, which cleared the calcium from John’s bloodstream and helped his brain and kidneys recover. A blood cancer specialist at the University of Washington Medical Center told him that a bone marrow transplant might buy him time, perhaps even years. But myeloma eventually returns; the transplant doesn’t cure it. The treatment would temporarily destroy his immune system, could kill him, and would require weeks of recovery in sterile isolation. John decided against it, and was equally adamant that he’d never go on dialysis.
After six months on thalidomide, John recovered enough to move into a government-subsidized studio apartment near Pike Place Market. He loved being on his own again and wandered the market making videos of street musicians, which he’d post on Facebook. But Anne now had to drive across town to shop, cook, and clean for him.
The health plateau lasted more than a year. But by the fall of 2010, John could no longer bear one of thalidomide’s most difficult side effects, agonizing neuropathic foot pain. When he stopped taking the drug, he knew that calcium would once again build up in his bloodstream, and that he was turning toward his death.
An older sister and brother flew out from Iowa to help Anne care for him. One sibling would spend the night, and another, or John’s oldest daughter, Keely, a law student, would spend the day.
Christmas came and went. His sister Irene returned to Iowa and was replaced by another Iowa sister, Dottie, a devout Catholic. In early January, John developed a urinary tract infection and became severely constipated and unable to pee. Anne took him to the University of Washington Medical Center for what turned out to be the last time. His kidneys were failing and his bones so eaten away by disease that when he sneezed, he broke several ribs. Before he left the hospital, John met with a hematologist, a blood specialist, who asked Anne to step briefly out of the room.
Anne does not know exactly what was said. But most UW doctors are well trained in difficult conversations, thanks to a morally responsible institutional culture on end-of-life issues. Doctors at UW do not simply present patients with retail options, like items on a menu, and expect them to blindly pick. Its doctors believe they have an obligation to use their clinical experience to act in their patients’ best interests, and they are not afraid of making frank recommendations against futile and painful end-of-life treatments. When the meeting was over, the doctor told Anne that her brother “wanted to let nature take its course.” He would enroll in hospice. Anne drove him home.
John knew he was dying. He told Anne that he wanted to “feel everything” about the process, even the pain. He took what she called “this Buddhist perspective that if he suffered he would wipe out his bad karma. I said, ‘Nah, that’s just bullshit. You’ve done nothing wrong. The idea that we’re sinners or have to suffer is ludicrous.’” She looked her brother in the eye. She knew she was going to be dispensing his medications when he no longer could, and she wasn’t going to let him suffer. She told him, ‘You’re not going to have a choice.’”
Anne said she “set an intention”: not to resist her brother’s dying, but to give him the most gentle death possible and to just let things unfold. On January 15, her birthday, she and John and a gaggle of other family members walked down to Pike Place Market to get a coffee and celebrate. John was barely able to walk: Anne kept close to him so that she could grab him if he fell. It was the last time he left the house.
The next morning, a Sunday, while Anne was sitting with John at his worktable, he looked out the window and asked her, “Do you think I’ll die today?” Anne said, “Well, Sundays are good days to die, but no, I don’t think it’s today.” It was the last fully coherent conversation she had with him.
He spent most of his last nine days in bed, as his kidneys failed and he grew increasingly confused. He didn’t seem afraid, but he was sometimes grumpy. He had increasing difficulty finding words and craved celery, which he called “the green thing.” He would ask Anne to take him to the bathroom, and then forget what he was supposed to do there. His daughter Keely took a leave of absence from law school, and Anne did the same from her job at the hospital. Fellow artists, fellow chanters, former students to whom he’d taught karate, nephews, nieces, and sign-painting clients visited, and Anne would prop him up on pillows to greet them.
Anne managed things, but with a light hand. She didn’t vet visitors, and they came at all hours. If she needed to change his sheets or turn him, she would ask whoever was there to help her, and show them how. That way, she knew that other people were capable of caring for him when she wasn’t there. “The ones that have the hardest time [with death] wring their hands and think they don’t know what to do,” she said. “But we do know what to do. Just think: If it were my body, what would I want? One of the worst things, when we’re grieving, is the sense that I didn’t do enough,” she said. “But if you get in and help, you won’t have that sense of helplessness.”
Each day John ate and spoke less and slept more, until he lost consciousness and stopped speaking entirely. To keep him from developing bedsores, Anne would turn him from one side to the other every two hours, change his diaper if necessary, and clean him, with the help of whoever was in the room. He’d groan when she moved him, so about a half an hour beforehand, she’d crush morphine and Ativan pills, mix them with water as the hospice nurse had showed her, and drip them into John’s mouth.
One morning her distraught brother Steve accused her of “killing” John by giving him too much morphine—a common fear among relatives, who sometimes can’t bear to up the dose as pain gets worse. At that moment, the hospice nurse arrived by chance, and calmly and gently explained to Steve, “Your brother is dying, and this is what dying looks like.”
The death was communal. People flowed in and out, night and day, talking of what they loved about John and things that annoyed them, bringing food, flowers, candles, and photographs until John’s worktable looked like a crowded altar. Buddhists lit incense and chanted. Someone set up a phone tree, someone else made arrangements with a funeral home, and one of the Buddhists planned the memorial service.
Most of the organizing, however, fell to Anne. It may take a village to die well, but it also takes one strong person willing to take ownership—the human equivalent of the central pole holding up a circus tent. In the final two weeks, she was in almost superhuman motion. She leaned in, she said, “into an element of the universe that knows more than I know. I was making it up as I went along. People contributed and it became very rich.
“That’s not to say there weren’t times when it was phenomenally stressful. I was dealing with all the logistics, and with my own mixed emotions about my brother. I was flooded with memories of our very complicated relationship, and at the same time I knew my intention was that he be laid to rest in the most gentle way possible.”
Hospice was a quiet support in the background. Over the two years of his illness, John’s care had perfectly integrated the medical and the practical, shifting seamlessly from prolonging his life and improving his functioning— as thalidomide and the doctors at UW had done—to relieving his suffering and attending his dying, as the hospice nurses and those who loved him had done.
There were no demons under the bed or angels above the headboard. Nor were there beeping monitors and high-tech machines. His dying was labor-intensive, as are most home deaths, and it was not without conflict.
A few days before he died, two siblings beseeched Anne to call a priest to give John last rites in the Catholic church. “It was a point of love for my siblings. They were concerned that John was going to burn in hell,” Anne said. “But John hated priests.” In tears, Anne called the Seattle church that handled such requests, and the priest, after a brief conversation, asked her to put her sister Dottie on the phone. Yes, Dottie acknowledged, John was a Buddhist. No, he hadn’t requested the sacraments. Yes, his children were adamantly opposed. No, the priest told her, under the circumstances he couldn’t come. It wasn’t John’s wish.
Ten days after the family’s last walk through Pike Place Market, the hospice nurse examined John early one morning and said, “He won’t be here tomorrow.” She was seeing incontrovertible physical signs: John’s lips and fingertips were blue and mottled. He hadn’t opened his eyes in days. His breathing was labored and irregular, but still oddly rhythmic, and he looked peaceful. The hospice nurse left. Anne, helped by John’s daughter Keely and his sister Dottie, washed and turned John and gave him his meds. Then they sat by his side. Anne had her hand on his lap.
“It was January in Seattle,” Anne said. “The sun was coming through the window and we could hear the market below beginning to wake up. We were just the three of us, talking and sharing our stories about him and the things we loved and didn’t love, the things that had pissed us off but now we laughed about. I can’t ever, in words, express the sweetness of that moment.
“He just had this one-room apartment with a little half-wall before the kitchen. I walked over to put water on to make coffee, and Keely said, ‘His breathing’s changed.’”Anne stopped, ran over, sat on the bed, and lifted her brother to a sitting position. He was light. She held him close, and during his last three breaths she chanted Nam Myoho Renge Kyo, as her brother had always done, three times, whenever he left his house. “I was really almost mouth-to-mouth chanting, and he died in my arms,” she said. “We just held him, and then my sister Dottie said her prayers over him.”
Anne sat next to her brother and said, “John, I did well.”
“I know he would not have been able to orchestrate it any better than how it unfolded,” she said.
“It was a profound experience for me. I realized what a good death could be.”