Elizabeth Toll, MD, Gold grantee and Brown University professor, on the joys and challenges of patient care today

The Arnold P. Gold Foundation hosted a gathering on July 29, 2017, to share our mission with healthcare leaders and others interested in ensuring the vital human connection is not lost in modern medicine.

Elizabeth Toll, MD, a Gold grantee and Brown University professor, shared particulars the joy and challenges of patient care today, the crisis facing physicians, and her many experiences with the Gold Foundation.

Here are excerpts:

While I don’t know you, I imagine every one of you has interacted with the medical system during the past year. I’d even venture to say something in that interaction felt a little off. Maybe, as you checked in, you were asked your date of birth before your name. Or your visit felt rushed. Or your doctor spent a lot of time complaining about how hard it is to practice medicine these days instead of addressing your concerns.  Maybe you even felt a little ignored as your nurse or doctor typed information into a computer rather than making eye contact with you. Regardless of the details, if you felt annoyed or put off, you already understand firsthand the work of The Arnold P. Gold Foundation.  Medicine is changing fast. Sadly, in too many cases, patients and their practitioners – doctors, nurses, mental health professionals – are being left behind.  The Gold Foundation’s mission is to protect and advance what is best in medicine – and increasingly endangered as medicine undergoes seismic change.

I am combined internist-pediatrician, better known as “Med-Peds.”  I work in an academic clinic associated with Brown University, where I have a practice and teach medical students and residents. Our patients are young and old and in between, and we care for families with as many as four generations. Our patients come from diverse socioeconomic and cultural backgrounds and hail from every corner of the earth. We care for many immigrants, including refugees. I think I became a physician to answer the question, “What does it mean to be a human being?” Our patients are extraordinary teachers of this subject. I have learned about love from a 3-day-old and her adoring father, hatred from a sobbing mother who lost her only son to gang violence, peace from an elderly Bhutanese refugee who always greets me with “Namaste,” and war from a Syrian family from Aleppo. I love my work and often feel I won a precious ticket for a front-row seat at the show of the human condition.

On attention

It is actually quite difficult to give full attention to a patient. You must leave distractions and judgment at the door and enter with curiosity about the person before you. You must listen to the patient’s story, including what is not said but may be hinted at through body language or silence, consider the patient’s emotions and psychological make up, and daily life, past medical history, similar patients, bring in book learning, add a tincture of common sense, and refine all this with carefully chosen questions. Then you must repackage all this for your patient at the right education level with clarity, empathy, and hope. Done well, this kind of interaction is extremely rewarding. You feel a kind of calm and focus followed by an exchange of energy as you connect with another person in an effort to help him or her feel better.

If this sounds a little “woo woo” think back to a tough time – a health scare, the loss of a job or relationship, the death of a loved one.  Was there a single individual – someone who listened, imagined your despair, connected with you and let you know they would hang in there with you – who helped you pass through a dark tunnel and back into a more hopeful time?  This person may have been a doctor, but it could also have been a friend, family member, hairdresser, clergy person, or mental health professional. One person can make an enormous difference, no? When someone takes the time to imagine your struggle and conveys this to you, you feel better. Human connection is a fundamental part of healing. It always has been and always will be.

On the electronic health record

The most difficult challenge for many physicians, including me, has been the arrival of the computer in the exam room. Overnight, this changed our jobs from ones that were about people to ones that are about entering and managing data in a computer.

It’s not the computer per se.  We all understand there is so much information about patients coming from so many sources that we need to bring it to a centralized system that can be accessed remotely and shared promptly with a patient’s practitioners.

Unfortunately, the current design of electronic health records in the United States, at least those being used by large academic systems, is very complicated – busy screens, small print, endless windows, and many mouse clicks. The average emergency room physician clicks a mouse 4,000 times in the course of an 8-hour shift! Designers imagined we could listen to patients while typing their histories into the computer, recording the physical exam, and completing prescription refills, test orders, and specialist referrals in a 10-to-15-minute visit. It’s just not possible! It’s like texting and driving. Perhaps a more appropriate analogy is that of a lawyer in the courtroom — arguing the facts of the case, keeping the client in mind, as well as the opponent, convincing judge and jury, and oh, by the way, now having the job of court stenographer as well. It’s preposterous.

These machines require full attention, or you will make a mistake. You will pick the wrong medicine, the wrong dose, the wrong lab, the wrong specialist. If you don’t pay attention, you can inadvertently hurt a patient. As a result, you start to give full attention to the computer and the patient slips into second place. It’s an awful feeling, but that is the reality of entering data into a computer in the exam room.

On finding solutions

This past spring, Brown hosted the first international conference on how the electronic health record has influenced the relationship between patients and practitioners. When we came up with the idea, we approached Allan Tunkel, MD/PhD, Associate Dean for Medical Education, who kindly offered seed money to start the conference. As we started to seek other funders, one of our first stops was the Gold Foundation. We were delighted to receive your generous funds, as well as help publicizing the conference. We recognize the gravitas the Foundation enjoys in the medical funding world. When the Gold Foundation believes a project is worthwhile, other funders take note.

This past March, 150 people from around the United States and six other countries assembled during a  weekend for “The Patient, the Practitioner, and the Computer: Holding on to the Core of Our Healing Professions in a Time of Technological Change.”

Solutions emerged from the conference. First and foremost, we need to simplify the American electronic health record and align it with clinical care. We need to develop team-based care, with team documentation of visits, so all the recording of visits does not roll down to physicians. And we need to use the tremendous power of technology to engage patients more directly in their care.

Participants were very interested to learn from our international speakers, many of whom have been on the electronic health record for 10-20 years longer than we have in the United States. They reported their transitions had been painful as people overcame resistance to change and infrastructure hurdles. However, the chief difference between electronic health records in the United States and other industrialized nations is that their products were designed by physicians for patient care and not for billing and regulation, so their notes are much briefer. American notes are 4.5 times longer than those in places like Canada, the United Kingdom, Denmark, Portugal, Israel, and Australia!

Feedback from the conference has been very positive, with a strong sentiment to have a second patient, practitioner, computer conference focused on teambuilding, problem-solving, and practical solutions. As we start planning, we shall be in touch with the Gold Foundation.