Patient Care

Calling all cuddlers! As previously written about here and in the most recent  Stanford Medicine Newsletter, volunteers Pat Rice and Claire Fitzgerald have been holding and soothing infants at Lucile Packard Children’s Hospital Stanford for 16 years, providing comfort both to the tiny patients and their parents. Rice and Fitzgerald, Ronald Cohen, MD, and sweet babies were featured on ABC’s World News with Diane Sawyer in the segment above.

Previously: Paying kindness forward through infant-cuddling, “I opened the doors:” A look back at two special babies and Neonatologist celebrates 50 years of preemie care

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from cancer survivor Danielle Ripley-Burgess.

I consider myself one of the lucky ones.

A diagnosis of stage III colon cancer at age 17 probably sounds like a pretty tough blow and not lucky at all. Not to mention a second diagnosis of stage I colon cancer at age 25 and subsequent surgeries and hospital stays to combat my genetic disease, Lynch Syndrome.

Yet despite the extensive medical record over the past decade, I still consider myself extremely lucky when compared to other survivors.

You see, I’m not alone in my fight. Although colon and rectal cancer most often appear in those over age 50, it can happen in young people. In fact, it is happening – and those of us diagnosed under age 50 make up the fastest growing demographic to be diagnosed.

Screening recommendations for colon cancer don’t typically apply for those of us still washing our faces with acne cream, going prom-dress shopping or planning our weddings. But when we walk into a doctor’s office with symptoms like severe abdominal pain, cramping, bloating and rectal bleeding, we need to be taken seriously.

A fellow survivor named Meaghan, stage I colon cancer at age 26, initially assumed her bleeding and pain came from past pregnancies. The emergency room staff concurred and offered her pain pills and suggested a high-fiber diet. Not until she returned to urgent care in extreme pain did a CT scan discover her tumor. Another friend, Melissa, knew that “college stress” couldn’t be the only cause of her pain and blood in the stool. Melissa fought tooth-and-nail for a referral, yet doctors wouldn’t send her to a specialist. Luckily, her mom called a gastroenterologist who had a last-minute cancellation. That appointment discovered her stage III rectal cancer at age 20 and saved her life.

I consider myself lucky because unlike many survivors also diagnosed “too young,” I never got the runaround from physicians. I was never told I had irritable bowel syndrome, prescribed antidepressants, instructed to simply change my diet or denied medical exams.

My gastroenterologist took aggressive steps and sent my 17-year-old behind straight into a colonoscopy the day he learned of my bleeding. I spent only minutes in his office but as soon as the stool test detected blood, he didn’t cut corners. My dad’s insistence on him treating me as if I were his teenage daughter led to the discovery of my tumor just days after the appointment. I was treated based on my symptoms – and not my age.

The hands-on approach from every member of my medical team not only saved my life from colon cancer twice, but it set me up for survivorship. Now, I have a long life ahead of me.

No, colon cancer doesn’t often occur in teenagers. But it can. And thankfully, my symptoms influenced my doctors’ recommendations and treatment – not my age.

Danielle Ripley-Burgess, a two-time colon cancer survivor, is director of communication for advocacy organization Fight Colorectal Cancer. She was Miss October in the 2009 Colondar, an educational calendar of young colon cancer survivors that raises awareness of colorectal cancer. She writes about the topic of cancer as a blogger for Huffington Post and on her blog, Semicolon Stories. Last Friday, she was among a group of colon cancer survivors that NBC’s TODAY show interviewed for a segment about Colorectal Cancer Awareness Month.

With a change of job or marital status, or by provisions of the Affordable Care Act, you switch health-insurance carriers. You move. Your doctor goes out of network, is booked right now, goes on vacation, or retires altogether. You find a new primary care provider. Again.

So how much patient history, and patient-doctor relationship history, gets lost in transition? Scientists from the University of Bristol in the U.K. aimed to answer that question and found that patients are more likely to bring up a health concern with a doctor they’ve built a relationship with over time than with a new doctor.

The researchers’ findings were presented last week at the South West Society for Academic Primary Care (SW SAPC) meeting. From a release:

…researchers collected data from 22 practices in the Bristol area, recording consultations between 190 patients and 30 GPs.

Researchers then looked at whether consultation length and the number of problems and issues raised were affected by patient-doctor continuity.

Analysis showed that almost a third of patients had a ‘deep’ relationship with their GP, which in turn encouraged them to raise 0.5 more problems (a topic requiring a GP to make a decision or diagnosis) and 0.9 more issues (the number of topics raised within each problem, such as symptoms) during each consultation.

This may mean many more problems and issues are addressed over the course of several visits.

Study author Matthew Ridd, PhD, said, “This research study is the first of its kind to show how seeing the same doctor can positively affect consultations.”

Previously: Managing primary care patients’ risky drinking, Future doctors have a lot at stake, even if they don’t know it: A student’s take on the Affordable Care Act, Matching into family medicine and My parents don’t think I’m smart enough for family medicine: One medical student’s story
Photo by Stanford EdTech

“The secret ingredient is salt,” said a plastic-figurine Marge Simpson at the push of a button in my mom’s Simpsons living-room diorama. (Marge was holding a tray of cookies she presumably had just made.) But for some congestive heart failure patients, the secret to recovery is not-salt.

I thought of Marge when reading a heartening piece in the recent issue of Inside Stanford Medicine. It tells the story of how patient Bruce Simon, after recovering from a heart attack and cardiothoracic surgery, adopted a low-sodium diet according to his doctors’ recommendations and was able to avoid needing a heart transplant. By modifying his lifestyle as part of his health-improvement regimen he went from sleeping upright and wearing an oxygen mask to being able to walk two miles on a treadmill without becoming short of breath.

From the piece:

“A lot of people with heart failure come to a cardiologist’s office and expect to get medications,” said Simon’s doctor, Dipanjan Banerjee, MD, clinical assistant professor of cardiovascular medicine and medical director of Stanford Hospital’s Mechanical Circulatory Support Program. “Probably the most important thing we do in our clinic is focus on lifestyle and dietary changes. The cornerstone of our therapy for our congestive heart failure patients is sodium restriction.”
…
Simon, who came to Stanford Hospital & Clinics to be evaluated for a heart transplant on the recommendation of his Montana doctors, performed just a little too well on the heart transplant evaluation tests, so Banerjee sat him down to talk about diet. Even though Simon did not have high blood pressure or high cholesterol — two key precursors of coronary artery disease — his heart was stressed by the effort needed to pump accumulated excess fluid. Sodium in excess puts more stress on the heart, Banerjee said, because it causes water retention, making the heart work harder to pump that extra fluid around the body. “For people who don’t have congestive heart failure, reducing sodium is not as important,” Banerjee said. “For a patient with congestive heart failure, low-sodium intake is crucial.”

Rather than prescribe higher doses of diuretics to help rid Simon’s body of excess fluid, Banerjee wanted him to try living by a simple rule that he often prescribes for his patients with heart failure: “Nothing out of a can, nothing out of a bag, nothing out of a box and no processed foods” is how Simon remembers it.

Simon said, “People tell me I don’t even look like the same guy,” he said. “I feel great, and I can do just about anything I want. Eating carrots and celery is a whole lot better than having a heart transplant.”

Previously: Survey shows Americans need a refresher course on heart health, “Sodium Girl” on living with a salt-free diet and Tips for avoiding hidden sodium at the supermarket
Photo by Nathan Borror

Family members may share a set of values, a sense of humor, or various personality traits. And sometimes members of a family have a health condition in common. The recent Stanford Medicine Newsletter features a San Jose, Calif. family with five children – two of whom have type 1 diabetes and a third who has been identified as likely to develop it in the next two years. The Bergh family receives care for their children at Lucile Packard Children’s Hospital Stanford.

From the piece:

Roughly 5 percent of families who have one child with diabetes will have a second child with the disease, but it’s unusual to have three, according to Bruce Buckingham, MD, professor of pediatric endocrinology at Lucile Packard Children’s Hospital Stanford and the School of Medicine.

Buckingham, who treats the Bergh children, assessed everyone in the family for the disease by testing for antibodies that can generally predict when a child is going to develop diabetes. Four months after Maleki got his diagnosis, Marae tested positive for the antibodies. She did not get the disease for five more years, but by then Tierra Bergh [the mom] knew what to do. After noticing that Marae was drinking and urinating excessively one weekend, she used her son’s glucose meter to test Marae’s glucose levels and immediately called Buckingham.

“I was devastated,” she recalled, “but Dr. Buckingham was very calm. He said, ‘You already know how to take care of a child with diabetes.’”

Previously: A tale of two Shelbys: The true story of two diabetes patients at Lucile Packard Children’s Hospital and Tips for parents on recognizing and responding to type 1 diabetes
Photo courtesy of Bergh family

Pilots, astronauts and workers in other high-risk industries follow rigorous safety checklists to help them avoid hazards. Checklists have shown potential to reduce risk in health care, too, but the challenge is figuring out how to incorporate them into physicians’ and nurses’ work flow.

A Stanford team has built a solution: an automated checklist that pulls data directly from patients’ electronic medical records and pushes alerts to caregivers. The checklist, and a dashboard-style interface they used to interact with it, caused a three-fold drop in the rates of a serious type of hospital-acquired infection, the team found. The work has just been published in Pediatrics.

From our press release about the study:

“Electronic medical records are data-rich and information-poor,” said Natalie Pageler, MD, the study’s lead author. Often, the data in electronic medical records is cumbersome for caregivers to use in real time, but the study showed a way to change that, said Pageler, who is a critical care medicine specialist at the hospital and a clinical associate professor of pediatrics. “Our new tool lets physicians focus on taking care of the patient while automating some of the background safety checks.”

Working in the pediatric intensive care unit at Lucile Packard Children’s Hospital Stanford, the researchers focused on bloodstream infections that occur via central lines, which are catheters inserted in major veins. The automated alerts were designed to help physicians and nurses follow an established set of best practices for caring for central lines. For example, alerts were generated when the dressing on a patient’s central line was due to be changed.

The drop in the rate of central line infections – from 2.6 to 0.7 infections per 1,000 days of central line use – not only protected patients from harm; it also saved money. The team estimated that the savings in the pediatric intensive care unit were about $260,000 per year.

Next, the researchers hope to adapt the automated checklists to other uses, such as helping to guide the recovery of patients who have received organ transplants.

Previously: More than a manual: Stanford’s crisis checklist helps those working in the OR, What health-care providers can learn from the nuclear industry and Sully Sullenberger talks about patient safety
Photo by Jocelyn Augustino/FEMA Photo Library

My runner-up dream job is to snuggle infants at a hospital. (Second only to attending yoga teacher trainings full-time.) So I might have squealed a little when coming across a sweet story about a couple of volunteer cuddlers at Lucile Packard Children’s Hospital Stanford. For the last 16 years, husband-and-wife team Pat Rice and Claire Fitzgerald, both psychologists, have been assuring babies and relieving their parents by providing non-clinical, fully human support.

From Stanford Medicine Newsletter:

“The baby cuddler program has tremendous value,” said neonatologist David Stevenson, MD, director of the hospital’s Johnson Center for Pregnancy and Newborn Services. Parents with hospitalized infants must sometimes be away from the bedside, and physicians and nurses are focused on their patients’ essential medical needs, which sometimes limits their time to attend to more personal needs, said Stevenson, who also is the Harold K. Faber Professor of Pediatrics at the School of Medicine.

“The cuddlers are volunteers who address the personal needs of another small human being, holding and talking to them when their parents can’t be present,” he said. “The cuddlers become a part of the health-care team.”

Rice and Fitzgerald are returning the tender loving care once provided to them and their son, who was treated at what was then called Stanford Children’s Hospital. He has since grown up and fathered three children of his own.

Previously: “I opened the doors:” A look back at two special babies and Neonatologist celebrates 50 years of preemie care
Photo of Pat Rice and Claire Fitzgerald by Norbert von der Groben

The traditional narrative in American medicine follows a “diagnosis and cure” storyline, with the narrative breaking down or becoming extraordinarily difficult when a cure is no longer possible. Literature can help bridge the gap between medical expertise and patient experience, particularly when preparing for death. This idea was explored in a recent seminar, “Literature and Medicine at Life’s End,” sponsored by the School of Medicine’s Arts, Medicine and Humanities Program.

It’s not only the patients and their family who suffer, but physicians are suffering too.

The discussion was led by Alvan Ikoku, MD, PhD, and Sunita Puri, MD. Puri, a Stanford clinical fellow in palliative medicine, read an account of her personal struggle with one particular end-of-life decision for a patient she called “Mr. Smith.” Mr. Smith’s body was so rattled with cancer that it was “hard to tell where the cancer ended and his body began.” He had been admitted to the ER, unconscious, with a dangerous pulse oxygen rate and a blood clot in his lung. There was no family to consult regarding treatment. Puri wrote about the battle between her “text book voice,” which said to treat the blood clot no matter what, and a “deeper voice,” which asked the question, “To what end?”

As Puri and Ikoku discussed, navigating the myriad end-of-life decisions made possible by today’s advanced medical technology is not something that is taught in all medical schools. Ikoku, a Mellon Fellow at the Stanford Humanities Center who has a PhD in English and Comparative Literature, explained that literature can serve to fill that missing component. Using two short stories by physician writer Richard Selzer, MD, “Mercy” and “A Question of Mercy,” Ikoku illustrated how end-of-life situations can be written and read about by physicians, and physicians in training. But there must be space and time for that type of reflection, and today’s hectic healthcare system is not conducive to such reflection.

“It is not only the patients and their family who suffer, but physicians are suffering too,” said Puri, who shared the story of treating another terminal patient at the request of his family, even though he was near death. After the patient coded and had to be intubated, Puri worried that the additional procedures would cause the patient undue pain and distress.

The audience of more than fifty medical students, clinical residents, physicians, teachers, ethicists, and community members, had read both Selzer short stories before the session, and participated in a thoughtful discussion about the lack of end-of-life conversations in American society. One attendee, a clinical resident from Ireland, noted that American culture doesn’t talk about death in any meaningful way, often until it’s too late. In an interesting comparison of health-care systems, Puri and Ikoku noted that the ICUs in both England and Ireland are much smaller than in the U.S., and decisions are made about the use of health care resources for “the best possible good,” instead of profit. One Palo Alto resident noted that it wasn’t just the physicians who needed training in end of life discussions. “That is a big burden we put on our physicians, to have to make those decisions if we have not made it clear beforehand, or shared it with a family member. As patients we need to take responsibility for our own end-of-life treatment.”

The evening ended on a lighter note when a visitor from England said he didn’t understand why in America people were always surprised when an elderly person died. “What do you THINK is going to happen?” he asked gently.

“Literature and Medicine at Life’s End” was part of a seminar series that explores the intersection between arts, medicine, science, humanities and technology. It’s sponsored by the Stanford Center for Biomedical Ethics, the Stanford Humanities Center, and the Stanford Arts Institute, and is supported by generous benefactors.

Jacqueline Genovese is assistant director of the Arts, Humanities and Medicine Program within the Stanford Center for Biomedical Ethics.

Previously: Thoughts on the arts and humanities in shaping a medical career, Communicating with terminally ill patients: A physician’s perspective, Asking the hardest questions: Talking with doctors while terminally ill and A conversation guide for doctors to help facilitate discussions about end-of-life care

In the U.S., more than one in five drug prescriptions are for off-label indications. Better tracking of these unapproved uses could help medical researchers identify potentially dangerous uses and prioritize promising ones for further study and eventual approval.

Prescription records don’t usually indicate the condition a drug is intended to treat, but physicians’ clinical notes are likely to include this information. Researchers at Stanford developed a new method to extract off-label uses from 9.5 million de-identified clinical records collected at Stanford since 1994. Their study was published online today in PLOS ONE.

In a news release, Nigam Shah, MBBS, PhD, assistant professor of medicine and senior author of the study, describes his team’s approach to sorting the 400 off-label uses they discovered:

To prioritize these uses for further study, the researchers took into account the cost of each drug and its risk of causing adverse reactions. They used these two parameters to rank each drug use. “Then we placed them into good and bad buckets,” Shah said. The “bad bucket” of high-cost, high-risk uses should raise red flags that prompt re-evaluation by physicians and regulators.

Lead author Kenneth Jung, a graduate student in biomedical informatics, was surprised by how many of the novel uses were predictable based on prior knowledge.

“A lot of it actually made sense,” he said. “We should have known about some of these uses already. This gives us confidence that the method we developed works.”

Among the low-risk prescriptions, folic acid was used to treat a wide range of conditions, while several immunosuppressants and anti-tumor agents were classified as especially high-risk. To test the robustness of their findings, the researchers plan to apply the same method to electronic medical records from other hospitals and compare their results.

Previously: Clinical informatics gains recognition as new medical sub-specialty, Stanford researchers use data mining to show safety of peripheral artery disease treatment and Studies document risky use of powerful clotting drug
Photo by Erin DeMay

For some patients, the need to begin a weight-loss program to lower health risks connected with obesity is urgent. But losing weight and keeping it off for the long term can be a challenging journey for a person – and patient-doctor conversations about weight loss can be complex.

A study (purchase required) recently published online in Preventive Medicine looked at the way patients perceive their physicians’ attitudes about obesity, and the patients’ change in weight following the delivery of weight-loss advice. For their work, the researchers conducted Internet-based surveys in 500 adults with a body-mass index of 25 or more.

As explained in a Johns Hopkins release:

The participants were asked, “In the last 12 months, did you ever feel that this doctor judged you because of your weight?” Twenty one percent of participants said they believed they had been.

Further, 96 percent of those who felt judged did report attempting to lose weight in the previous year, compared to 84 percent who did not. But only 14 percent of those who felt judged and who also discussed weight loss with their doctor lost 10 percent or more of their body weight, while 20 percent who did not feel judged and also discussed shedding pounds lost a similar amount.

“Negative encounters can prompt a weight loss attempt, but our study shows they do not translate into success,” study leader Kimberly Gudzune, MD, MPH, an assistant professor in the Division of General Internal Medicine at the Johns Hopkins University School of Medicine, said in the release. “If we are their advocates in this process — and not their critics — we can really help patients to be healthier through weight loss.”

Previously: Study: When discussing childhood obesity, words carry weight and A medical student calls for increased nutrition education for doctor
Photo by Stanford EdTech