NEW YORK — A person’s breath is usually invisible. It’s quiet and automatic, unseen and unheard. It can be so silent that anxious parents hold mirrors next to their newborns’ faces, trying to catch a glimpse of it.
But in the days before death, the nature of breath changes.
Instead of passing through the body unnoticed, it calls for attention. It becomes noisy, hollowed, labored. Clinicians even have a name for it: the death rattle. It’s not something most people have heard, unless they’ve sat at a dying person’s side. Doctors in training, who go through years of coursework learning to keep people alive, might never experience it. And when they do, it can be overwhelming.
A new class at Columbia University envisions something different. The class, called Life at the End of Life, places students with medical aspirations — before they even apply to medical school — with patients at the Terence Cardinal Cooke Health Care Center (TCC), a nursing home in Harlem. The students enter the doors of the clinic knowing that their patients will not get better, and likely never leave.
In an increasingly tech-enabled medical profession, where death is postponed as long as possible, the class challenges pre-med students to confront that ultimate reality, and to learn how to guide patients and their families through it. And along the way it’s challenging their field’s hidebound distinction between medicine and palliative care — between doing everything to keep someone alive, and helping them die with dignity.
In a wood-paneled classroom at Columbia’s Morningside campus, a group of undergraduates fill the air with chatter. They’re young: fresh-faced 20- and 22-year-olds gossiping in groups of twos and threes.
Once the class begins, the room matures. Suddenly, they are potential doctors, not college students, and they’re grappling with the heaviest questions medicine can ask.
Today, their guest is Craig Blinderman, the director of the Adult Palliative Medicine Service at Columbia University Medical Center. Rather than lecture, Blinderman opens the room to discussion. The conversation veers from the medical to the philosophical.
“How do I understand the suffering of my patients with dementia?” Sophie McAllister, a 21-year-old pre-med student, asks. “Is the loss of self a kind of pain?”
Another student asks how doctors can fairly divide their time with busy schedules. “If there’s very little time and two patients, one is nonverbal, one is communicative, won’t doctors always choose the one who is verbal?” she worries. “Are we prioritizing the pain of verbal patients?”
“My patient likes to share food with me, but I’m not comfortable with that,” one student says. Another asks, “Do you need to channel your own suffering to be a good caregiver, or does doing that inhibit your abilities?”
Blinderman goes to the chalkboard, drawing a symbol of a doctor with a patient’s needs floating around it, like planets orbiting the sun. If the doctor becomes depleted, smaller, the patient’s needs don’t get smaller too, he says. It’s important for doctors to take care of themselves, or patients will feel the effects. He recommends meditation and mindfulness, and the ability to be present in each moment and then walk away; leave it behind.
It was Halloween day, and McAllister arrived for her weekly four-hour block with patients at TCC. She entered the room of Kathleen Kelly and Donna Martin, roommates in the dialysis wing who’ve lived together for about six years.
Martin was propped up in her bed, with a headscarf and blankets pulled up to her waist; she is bedbound and blind from diabetes. Kelly was perched on the foot of an adjacent, neatly made bed. They immediately jumped into conversation. Did they dress up? Did they go to a costume party? How are they feeling today?
McAllister sat down on a chair between the two of them, where a curtain can be closed for privacy, but usually remains open. Kelly showed McAllister all the beaded necklaces Martin had made her: long strings of neon plastic beads.
McAllister reached into her backpack and pulled out a gift for Martin: a large Ziploc bag of beads in a splash of different colors. Taking the ball of string from Martin’s bedside, she began cutting a handful of necklace-length strands for the next jewelry-making session. “Can you bring bells next time?” Martin asked. Yes, McAllister says, she will find her bells. Martin likes to be able to hear people coming and going.
As McAllister measured out the string, the talk ebbed and flowed, from shallow topics like what had changed in the vending machine, to suddenly plunging into the deep end. Martin told McAllister about her sons who died young of Duchenne muscular dystrophy around this time of year.
“I stood by the bed and he died in my arms,” Martin said. “I got him on the floor, and I started CPR, and I brought him back. That was on my birthday, the 27th of October. Then on Dec. 13, 2007, he passed away. My other son, Vinnie, died on Feb. 7, 2008. My mother died April 10, 2010. They went: boom, boom, boom.”
McAllister didn’t shy away from Martin talking about her sons or their deaths. She asked about their childhoods. Did they like Halloween? Did they believe in Santa?
Over the summer, McAllister and Martin had recreated another of the woman’s memories: sitting in Central Park with her brother, listening to music and eating pretzels. It was the first time Martin had been outside in a long while.
“It was burning,” McAllister said. “We came back and we were drenched in sweat. I was scared you didn’t like it.”
“No, I loved it!” Martin said, smiling. “I’m from St. Thomas, Virgin Islands. It’s hot there, you never get any cold breezes.”
They remembered how good the pretzels were, dipped in salt, and McAllister promised they would go again once it was warmer.
“I loved that mustard,” Martin said.
The Columbia class is the brainchild of Robert Pollack, a biology professor, and Dr. Anthony Lechich, the medical director at TCC. In 2005, they started to place one or two students per summer in an internship at the facility. Six years in, one of their interns was pre-med student Ashley Shaw, who saw in her own experience something that flagged up a shortcoming in medical education more widely.
“Medical students and trainees enter medicine thinking that medicine is an exact science,” Shaw said. “There are the signs and symptoms of a condition, and this is the treatment, and this is what the evidence is, and all you have to do is learn that. [But] a large percentage of this endeavor is dealing with uncertainty. You’re in deep trouble if you’re unprepared to handle that.”
In 2012 Shaw worked with Pollack and Lechich to expand the internship to a volunteer program that ran year-round, and last year, another volunteer and pre-med student, Tess Cersonsky, advocated to turn the program into a credit-earning course. After pitching the class to various programs at Columbia, she and Pollack found a home for it in the American studies department. At the moment, it does not count as pre-med credit; the students have to take it as a non-technical elective. Eventually, Cersonsky and others would like to see it part of the pre-med curriculum.
The initiative is in keeping with a cultural shift that has begun to open up more space to talk about dying. But medical training, as well as the practice of medicine, has been slower to adapt.
Atul Gawande, in his book “Being Mortal,” reveals how dramatically death has changed in the midst of technical advancements that keep people alive. Most of us now die hooked up to machines, he says, and doctors resort to more aggressive treatment options instead of facing reality.
But sometimes there is no cure. At a certain point in everyone’s life, medicine will reach its limit. How are we preparing our doctors to care for us in those moments?
“I don’t think we teach them in med school ‘do not feel, do not have emotions,’” said Dr. Danielle Ofri, a physician at Bellevue Hospital and associate professor of medicine at New York University. “We just don’t talk about it. And it gets pushed to the side.”
She worries that alongside heavy workloads, such emotional strain is contributing to the high depression and suicide rates among medical students.
Some hospitals are doing more to encourage emotional reflection. Harborview Medical Center in Seattle began a program called Death Rounds in 2000. The medical staff gathers each week to discuss patient deaths. Doctors are encouraged to share their remembrances of patients who’ve died, and how they felt about their deaths. The ICU was the first department to do so, and since then the neurology and surgical units have begun Death Rounds as well.
“We’re talking about death,” said Dr. Sandeep Khot, a neurologist at Harborview. “If you’re involved in this field, if you’re involved in medicine, this is going to happen — and this is part of caring for patients who are going to die.”
When McAllister walks into Angela Declemente’s room, she finds her surrounded by family photos.
McAllister discovered the photos several months ago, shoved away in a drawer, and they now go through them often. McAllister points out Jamie, Declemente’s favorite niece. Declemente, a small, frail woman with white hair, yells Jamie’s name in delight each time McAllister points her out.
When McAllister first met Declemente, she wasn’t sure how much of “her” was still there. Declemente suffers from dementia. McAllister would talk to her, and she often didn’t respond, or she repeated phrases that didn’t make much sense.
Then, McAllister realized that the woman wasn’t ignoring her, and she wasn’t incapable of understanding — she simply couldn’t hear. McAllister began to write notes to her on paper; later, after finding a whiteboard and dry-erase marker, their relationship blossomed.
Now, McAllister knows what Declemente’s odd statements mean. When she says she made “God in the corner,” she means an altar, like the one her mother made at her home in Rhode Island. When Declemente says she “went to heaven,” that means she went to church. The only way to decipher these phrases was to spend time with her, McAllister said. Now that she knows them, conversation flows easily. Sometimes they sit and color, or go through family photos. And sometimes, they can go to heaven together.
“Your smile is beautiful,” McAllister writes on the whiteboard.
“Isn’t that nice,” Declemente says, and shows McAllister a picture of a baby. “She’s cute!”
McAllister writes on the board: “You look like a movie star” — one of Declemente’s favorite messages to get.
“Isn’t that nice!” Declemente lights up. “That’s great.”
On an unusually warm Thursday in late October, the class came back from their break to two yellow Post-its on each of their desks.
Cersonsky, now a senior and the TA of the class, opened the lecture: “I want you to share on these Post-its two thoughts that you have had while volunteering that you wouldn’t feel comfortable saying directly.”
When they finished writing, Cersonsky stuck them on the walls of the room, from corner to corner. Then, she told the students to spend some time reading them. It was completely silent as the students walked along the wall of notes.
“I can’t understand my long term companion and I’m worried I’m missing important things she’s trying to tell me,” one said.
“Should I feel bad about spending most of my shifts with residents that are pleasant to interact with?” another asked.
“It makes me sad to think about one day losing the right to make my own decisions.”
There wasn’t a single question about the technical side of medicine. And yet, Cersonsky said, it got to the root of medical care. “It feels like this is something that all pre-meds should be doing,” she said. “It’s the only way that we’ve been able to process what it’s like to be around illness in a really intense way.”
In July, McAllister sat at the bedside of a dying elderly woman — her first deathbed visit. The woman’s family wouldn’t be arriving until later, and the TCC staff didn’t want her to be alone.
“For awhile, it was just me and her,” McAllister said. “It was kind of terrifying. It was unsettling to see someone like that. It seemed like all her energy was going toward breathing.”
McAllister searched her mind for ways to offer comfort in those final moments. She rubbed the pillow around the woman’s head, smoothing out the wrinkles. She touched her hand softly, and remained physically close. She knew that the woman was Catholic, so she Googled “soothing Catholic music” on her iPhone, settling on “Ave Maria” to play.
“You don’t really know what’s going on inside her head,” McAllister said. “So I did what I could. And I just sat with her.”
I was a hospice social worker for 5 years. I am so glad to see that some people with decision-making power are beginning to consider the importance of treating the dying. Doctors seek to treat people with every kind of disorder… except the natural progression into death. Time and again, I heard patients say, in one way or another “I know I am dying. Will you talk with me about it?” And if the doc-in-training says “We just don’t talk about it (“it” is dying) then the most important thing, “it” IS being pushed away. Away from the patient. Away from the patient’s family. Away, even, from the hospice people responsible for dying people’s care. I recommend at least one class of every med student be focused on this subject, and that the social worker involved in the patient’s care be called into meetings with him/her and enabled to help them die in comfort, with dignity. See the work of Jessice Nutik Zitter, M.D. who has made a documentary about her work, entitled ‘Extreme Measures: Finding a better path to the end of life.’ It will be available in Feb. For more information see Dr. Zitter’s Facebook page:JESSICENUTIKZITTERMD.
I’m a nurse with 50 years of experience…Never stop seeing something new. One of the things that has upset me for most of those years is death-the end of life on this earth. We are taught to “save/preserve life,”Not that death is part of that life. I’ve seen people kept alive,but not living. Have been berated by Dr’s because I provided patients with All the information, including not treating the problem facing them and what the out-come would be. I have seen family members living with the results of placing feeding tube in loved ones at the end of their lives-the battle to gasp for air because the natural process of death was disrupted. It’s our responsibility to help people to live as fully as they can for whatever time God has for them on this earth and to keep them comfortable during that time. It is our resonsibility to provide patients/family members with the medical information of all options of care along with probable outcome of each, thus an informed choice can be made by the patient/family. Thank you for starting to teach this to Dr’s!! Many Dr’s have been well into their 60’s,70’s before they just start to learn.
Wonderful program, great article but I feel I have to make one correction. “And along the way it’s challenging their field’s hidebound distinction between medicine and palliative care — between doing everything to keep someone alive, and helping them die with dignity.” Here you describe Hospice Care, not Palliative Care. Palliative Care is care for seriously ill (not just terminally ill) patients and can provide relief from stress and suffering (and treatment side effects) even as early as diagnosis, and can be given concurrently through disease process even sometimes to cure. Palliative Medicine is a boarded subspecialty of Medicine, which I’m sure was meant “curative medicine” in the quote. It may sound like I’m being a stickler here, but differentiating Palliative as separate from Medicine prevents more people from accessing high quality, truly patient-centered care at the time they most need it for fear they won’t be able to get curative intent treatments they desire. Thank you again for the beautiful article, and I hope this inspires more programs to have similar experiences for trainees!
This seems like such an innate part of healthcare. Compassionate people (most doctors in training!) just doing what comes naturally to be comforting.
Having just lost my mother and experiencing her end of life journey with her, as a daughter, RN, CCM, I would like to say that Tidewell Hospice in Manatee County, FL supported my mom in the manner she wished. Her death was peaceful, comfortable and filled with kindness. Her primary care MD supported her wishes that no unnecessary interventions or treatments. It was suggested in the ED that surgery would be required. Dr. Canada agreed with my mom and I that no surgery would be performed. I have been in healthcare for more than 40 years. I have seen many deaths that were not curable and yet aggressive treatment was ordered for a host of reasons, family wishes and physician practice. I know for some it is hard to know when to draw the line. I can only suggest that we all think about the person who is in the midst of their final journey and make it as peaceful, quiet and supportive as possible.
Having just experienced a heart attack, followed by insertion of a total of 3 stents, and having been with my husband who, too, just had 4 stents inserted, I am keenly aware of how close death looms when one ages. I’m 79; he’s nearly 92. We’re content. We’re anticipating requiring new atrial valves in the very near future. All our medical providers have been extraordinarily kind and loving, diligent and deft, and we are more than merely grateful for their help. Each provider consistently smiled and introduced him/her self upon entering our hospital rooms. They made us feel important, nurtured, individual and, yes, even loved.
If each of you who are preparing to be doctors or other health providers will look at “us” as persons, with hearts, souls, brains, histories, families, hopes and dreams, you will be able to care for your patients as they would deeply wish and guide them through their final passages as they would want you to do. Wishing you health and wisdom and kindness. Thank you for being the miracle workers among us.
And very heartfelt and loving good wishes for success in all endeavors to my very beloved cousin, Robert Pollack, whom you are lucky enough to know and learn from, as I have during the past 7+ decades!
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