Kimberly Allison, MD, was 33 when her diagnosis came. She was a couple weeks into a job directing the breast cancer pathology lab at the University of Washington Medical Center and happily settling into a new routine with her husband, a preschool daughter and an infant son.
The discovery that she had the disease she devotes her career to studying was “like Alice in Wonderland, falling down the rabbit hole.”
She couldn’t protect herself from what the scientist in her knew: Young women tend to get more deadly forms of cancer. And her cancer was ugly and big, likely having spread, undetected, during her pregnancy and breastfeeding.
Allison, now a professor of pathology at Stanford’s School of Medicine, recalls her deep depression after the diagnosis 10 years ago, when her mind went to the “darkest places” as she scoured the internet for answers.
“Every study I looked up had a horrible outcome. I thought this was going to be a death sentence for me,” she says. “What if you only have two years left? You go there right away.” What should she do with that time? Sadness about her children overwhelmed her. Should she quit work and spend her time with them and her husband? Should she do something soul-fulfilling like writing or painting? Or keep working in a career she loves?
She wouldn’t be able to settle those thoughts until she saw her oncology team.
At the first meeting with her surgeon and two oncologists, Allison willed emotion away. She didn’t want to “be a total mess” in front of the physicians gathered around the conference room table with her and her husband. She wanted her colleagues to see her as professional and still capable of doing her job.
They discussed the characteristics of her cancer and her treatment options in a matter-of-fact way and created a plan: six months of chemotherapy, followed by surgery, then radiation. They could start right away.
But Allison was uneasy. “OK, but I’ve seen the pathology,” she told the team. “This looks really bad to me.” That’s when her surgeon, Kristine Calhoun, MD, saw through Allison’s tough facade to the fear she was struggling to keep at bay. Calhoun told her: “I know you’ve looked up your prognosis. But there are new, targeted therapies that are changing that outcome. That data is so new it’s not in the older papers about pregnancy-associated cancers.
“This is a new ballgame,” Calhoun said. “We’re talking about seeing the grandkids.”
Allison finally had hope: “That basically reset me like, ‘OK, I’m not dying. I’m not dying right now.’”
Calhoun, who is still at the University of Washington School of Medicine, says there’s a delicate balance in giving patients hope without giving them false hope, but it was important that Allison see a positive path forward.
“People who lose hope kind of will themselves into a certain pathway,” she says. Though it was sometimes difficult to treat a friend, Calhoun says she learned a lot from how Allison handled the experience.
“It taught me to have even more empathy,” she says. “It helped me learn to not just look at patients as patients but as people, and to see that it really does change their story.”
The connection between Allison and Calhoun, which grew stronger as Allison’s treatment progressed, is what Stanford physician and author Abraham Verghese, MD, calls the “most poignant of human experiences” — one of suffering and the care of people who are suffering.
“The relationship between a care provider and a patient is vitally important in determining the health and well‑being of the patient and the outcome of treatments,” says School of Medicine Dean Lloyd Minor, MD.
He notes that, historically, the most a physician could do for suffering patients was to offer comfort by being an empathetic and understanding listener. A relatively recent explosion in biomedical knowledge and therapeutic options changed that and vastly improved care. But he says it also created a “separation between the science of medicine and the humanism and compassion of medicine” that must be addressed to nurture the ability of physicians to better understand and treat their patients.
“Each patient comes with a different history, with a different social, cultural and behavioral background,” says Minor. “Those factors are going to play heavily in determining the effectiveness of whatever scientifically based therapeutics you seek to offer.”
Listening is crucial to good health care
Clinicians across the board say the current climate of medicine cuts into the time they can spend really listening to patients, which makes it difficult to form meaningful connections, says Donna Zulman, MD, assistant professor of medicine and co-director of Stanford Presence 5, an initiative to change clinical encounters to improve overall health care. The initiative was launched by the Stanford Presence Center — founded in 2015 by Verghese to develop methods of tearing down communication barriers created by technology.
Not listening can have negative consequences downstream, such as misdiagnosis, unnecessary or unwanted treatment, patients not following through, fragmented patient care and physician burnout, Zulman says.
She is one of many people — at Stanford and elsewhere — who are working to enhance the doctor-patient relationship by creating communication skills training for clinicians; addressing physician burnout; and developing ideas for better ways to manage care, design exam rooms and improve health record interfaces.
Zulman points to two main time-robbing culprits: reimbursement models that have resulted in appointment times across the nation being set at about 15 minutes; and electronic health records that have clinicians spending more time outside of the appointments entering, reviewing and sharing patient information.
Such demands on physicians take them far from the reasons they got into medicine.
Kelley Skeff, MD, PhD, professor of medicine, who co-directs the Stanford Faculty Development Center for Medical Teachers, says doctors came to the field “to learn and apply science for the benefit of patients.”
“But their connections to science and to the patient are commonly impeded by the requirements of the system,” he says. “And those who are the most empathetic may, in fact, burn out faster as their self-care is neglected.
“We’re asking them to do the relatively superhuman tasks of keeping humanness and empathy together for others. They’re drawn to respond to the needs of both the health care system and the patient, but their own refueling process isn’t always happening.”
Physician burnout is at an all-time high; 54 percent of physicians across the nation reported having at least one symptom of burnout, according to national research overseen in 2014 by Tait Shanafelt, MD, the chief wellness officer and director of the Stanford Medicine WellMD Center. That was up from 46 percent in 2011. A physician wellness survey the center conducted at Stanford in 2016 showed that 34 percent of physicians surveyed that year reported having at least one burnout symptom. That was up from 25 percent in 2013.
Caring for the caregiver has been neglected for years, says Minor, but change is coming. “We have to get real about this,” he says. “I think we’re starting to recognize that our physical and mental well‑being are just as important as our knowledge base and technical skills when it comes to being effective physicians.”
One key challenge, says Minor, is to better integrate technology with medicine. For example, it’s important that electronic health records be better designed and easier to use so health care professionals and patients can access and share the information — and communicate about it — in real time.
“The care-delivery experience should not be driven and determined by the technology, it should be enabled by the technology. Listening to patients and being empathetic with patients should be the priority,” he says.
Improving how we talk to each other
Good communication, Zulman says, starts with clinicians really absorbing what patients say — about themselves, their pain, values, challenges and care goals — and being empathetic.
“Now, because of pervasive technology and other distractions in the clinical setting, we’re having to be more explicit about taking time and taking actions that will help us have meaningful interactions with patients,” she says.
Still, superb communication skills don’t come naturally to everyone, even the most experienced clinicians, says Stephanie Harman, MD, clinical associate professor of medicine. Like other aspects of medicine, being a good communicator takes practice.
“Learning how to build strong patient relationships is equally as important in medicine as learning technical or procedural skills,” says Harman, a master facilitator for Advancing Communication Excellence at Stanford, a workshop designed to help clinicians enhance communication skills that are “really at the heart of how we care for patients and their families.”
Workshop participants role-play patient interactions so patient priorities are at the center of every discussion. A total of 310 clinicians have participated in the program as of April 1 and 310 more are registered to participate between now and August. Harman says they’re encouraged to suspend the impulse to rush through patient conversations and instead listen, so that amid the “all-consuming fracas” of information and tasks they manage, clinicians can “answer the most important question in the world: What does the patient need?”
To gain a better understanding of effective doctor-patient dynamics, Presence 5 researchers are sitting in on patient interactions with primary care providers at Stanford and in primary care clinics in the Alameda Health System, Ravenswood Family Health Center in East Palo Alto and the Veterans Affairs Palo Alto Health Care System.
If patients agree, researchers use video or audio devices to record the encounters. The data also will include survey feedback from the patients and physicians involved in the approximately 40 visits that are being observed. Researchers will eventually synthesize the information to help establish best practices for interacting with patients.
They’re watching, Zulman says, for moments when patients reveal valuable information about themselves, their symptoms or their social histories that can inform clinical decisions. “What happens in the minutes preceding that? What did the doctor do or say, how were they positioned, that helped the patient open up in that way?”
Learning what patients need most
John Kugler, MD, a clinical associate professor of medicine who launched Stanford Medicine 25 with Verghese nine years ago to promote bedside exam skills, emphasizes the importance of those personal interactions for both diagnostics and for building trust between the physician and patient.
When a trainee seeks Kugler’s advice about a patient, “My first answer is, ‘We can’t make that decision now. We need to see the patient first.’
“You learn so much stuff that’s between the lines. How much distress are they really in? Can they really not breathe? Can they talk to me in full sentences? How weak are they? I’m really trying to get a sense of the person,” he says. “That’s when the decision-making just gels a lot better. To me, so much of it is that initial laying eyes on someone.”
Verghese, the Linda R. Meier and John F. Lane Provostial Professor and a leading advocate for returning to the “timeless human-to-human ritual” of bedside exams, says he takes note of what’s in a hospital room before even approaching a patient.
“They’re totally out of their context,” he says. “So anything that they’ve brought from the outside world is enormously helpful.” One person might be in shackles, another might be reading a book or Bible. Or a hospital room might be filled with greeting cards and family photos. Such observations can reveal a lot about people, he says, including values, cultural backgrounds, cognitive abilities and support networks.
“So often we walk into a room and, because of what the chart says or what we notice, within moments we know what’s going on,” he says. “But the patient doesn’t know what we know. If you jump in and say, ‘Well, I know what’s going on,’ it just seems so rude. And they wonder, ‘What do you already know? I haven’t really finished telling you.’”
Letting them tell their stories in a way that shows respect for them as individuals also invites patients to be partners in their care.
When Allison was fighting stage-3 HER2-positive breast cancer, she wanted to keep working and keep normal routines for her kids. During the first six months, she had chemotherapy once a week. In between, she diagnosed patients and presented pathology to physician groups working on other cases. The schedule, she says, helped her “feel balanced and like I was still engaged in my life. And I found it actually quite nice to go to work and not be focusing on illness all day at home.”
But she also needed emotional support. That, she says, especially came from the wider team of oncology nurses and staff. Memories of their kindness still evoke tears of gratitude. “You’re sitting there for hours, sometimes for a whole day, and those are the people who come and sit next to you, hold your hand, bring you a warm blanket or food, and really get to know you as a person,” she says.
Comfort also came from conversations with a hospital chaplain who visited the infusion ward. “Just having somebody to talk to who could bring up some big questions for you to ask yourself, about values and to reflect, was a growing experience without even going through cancer treatment,” Allison says. “It was like therapy.”
Now she meets with patients who want their pathology lab results explained, which is unusual for a pathologist, and speaks with patient groups, encouraging patients to do what they can, such as get a second opinion or learn more about treatments, so they trust and are comfortable with their care team and treatment plans.
She also speaks to physicians, challenging them to see patients quickly after a diagnosis — because “the worst time is that fearful time” of waiting — and to treat them as individuals.
“The hope you gave or the care you gave where you made it personal makes a huge difference,” she tells them. “I knew that I was getting the best treatments. But it was the personal interaction and support that I got as a patient that made a difference for me every day.”
Finding a model that works
Minor, who taught an undergraduate seminar this winter on literature, medicine and empathy, says the sense that the whole team is on your side is crucial for a patient’s motivation and healing and contributes greatly to the wellness of care providers. “Being a physician is a calling,” he says, “partly because of the enormous privilege of interacting with people in a way that establishes deep personal relationships that are unique to health care.”
Alan Glaseroff, MD, adjunct professor of medicine, is working with Arnold Milstein, MD, professor of medicine and director of Stanford’s Clinical Excellence Research Center, to develop new models of care that build on that kind of trust.
Glaseroff and his wife, Ann Lindsay, MD, left Humboldt County in 2011 to create the Stanford Coordinated Care program, basing it on their longtime family practice in Arcata, California, and on ideas gleaned from their more than 15 years of working with the Institute of Healthcare Improvement and other pioneers in the national movement to redesign primary care.
The coordinated care program is designed to cut costs for Stanford’s self-funded insurance plan by treating the 5 percent of employees and their dependents whose care represents 50 percent of the plan’s cost. The approach is meant to keep chronically ill patients from having repeated setbacks and hospital visits by making them partners in their own wellness. Every team member knows the patients well and focuses on goals the patients identify.
The core principle is to engage people, to just sit and talk with them, and show them respect, Glaseroff says. “And the way to engage with them is listening, and it’s focusing on what they care about, even if it seemed trivial compared with what we care about,” he says. “But I don’t think it is trivial. It turns out to be of critical importance.”
Glaseroff believes the practice can apply in all areas of medicine where there’s continuity. “It isn’t just come in, get something done and never see you again,” he says.
“What we figured out is that, if everybody was trained in this approach and we were really consistent with it, we got incredible efforts out of the patients.”
Zulman says she’s intrigued by the potential to address the challenges that get in the way of such successes by taking something that seems “vast and fairly abstract” and designing and implementing concrete interventions that make a difference for clinicians.
That could result in rituals that foster human connection during patient history-taking and exams or could lead to new care models where physicians spend less time interacting with electronic health records and have more autonomy to determine how much time they spend with individual patients.
“It’s actually a really challenging problem,” Zulman says. “If there were a simple solution, and all you have to do is make eye contact and we’re done, we would have figured that out already.”