Click on the links below to jump to the recent articles reprinted with permission from Issue 16, Winter 2006 and Issue 15, Summer 2005 (pdf links) of the UCSF Breast Care Center Newsletter:
Videos Offer New Patient Education Tool
Consultation Planners in Action
VIDEOS OFFER NEW PATIENT EDUCATION TOOL
Reprinted with permission from Issue 16, Winter 2006 (pdf link) of the UCSF Breast Care Center Newsletter
By Jeff Belkora, Director, Decision Services
An important goal of the Breast Care Center (BCC) is to help patients become as informed as possible about their disease. Informed patients can then participate with members of their health care team in deciding what course of treatment is best for them. I am happy to announce that the Decision Services team within the Breast Care Center was recently awarded a three-year grant that allows us to distribute award-winning educational videos to newly diagnosed breast cancer patients. Topics covered include ductal carcinoma in situ; surgery, reconstruction, chemotherapy and hormone therapy for early stage breast cancer; and living with metastatic breast cancer. The grant comes from the Boston-based Foundation for Informed Medical Decision Making, which produced the videos and is field testing them at a number of sites, including UCSF. (The urology team at the Cancer Center is testing similar videos on prostate cancer as part of this grant.) Each 60-minute video features peer-reviewed information presented in an engaging manner by doctors and their patients. UCSF Breast Care Center Director Laura Esserman, MD, MBA, is an editor of the series and is featured in several of the videos.
The Decision Services team has been working with patients, providers, clinic staff and other stakeholders to develop a plan for integrating the videos into the routine practices of our center. We have hosted several “movie sessions” where providers and staff watched and critiqued the videos. Together, our team has decided that the best way to use the videos is to mail them to patients as soon as they are diagnosed. This will allow them to watch the programs in the comfort of their homes and use them to generate a list of questions for their upcoming appointments at the BCC. Patients will be asked to return the videos to the BCC after they have viewed them, along with surveys evaluating their usefulness. Our providers will be giving editorial feedback to the Foundation so that the videos are updated and consistent with best practices at UCSF.
By the time this article appears, we will have begun a pilot program to make sure that the right patient gets the right program at the right time. The videos will also be available for viewing and checkout at the Ida and Joseph Friend Cancer Resource Center, where we are hiring a part-time coordinator to oversee the smooth conduct of this program, and at the Fishbon Library on the ground floor of the UCSF Cancer Center. If you have questions, please contact the Cancer Resource Center at (415) 885-7604.
CONSULTATION PLANNERS IN ACTION
Reprinted with permission from Issue 15, Summer 2005 (pdf link) of the UCSF Breast Care Center Newsletter
By David Gellis
I’ve never been great at introductions, tending to swallow key syllables of my name or break eye contact at the crucial moment. It was no surprise then that it took some practice to get my standard patient-greeting down: “Hi, I’m Dave Gellis. I’m going to be your consultation planner.”
I knew my patients had requested my services, yet I still half-expected to be met with a puzzled stare. What exactly was a “consultation planner,” my patient’s eyes would inquire, and how could I help treat breast cancer?
I’m neither an MD nor an NP; not a psychologist, social worker, nutritionist – or even a particularly good cook. Eight months ago, I was sleeping through my final college English lecture and thought that if there was something wrong with a “duct” you fixed it with shiny silver tape. Even today I need to tell patients starved for information or assurance that I can’t answer their questions or provide medical advice.
My job, instead, is to listen, to ask questions, and to record answers. Together with four other recent college graduates serving as interns at the Breast Care Center, I staff the clinic’s Consultation Planning and Recording program.
Consultation Planning and Recording is a free decision- support service, designed to help patients prepare for and get the most out of their visit with a BCC physician. Despite the complicated name, the idea is a simple one, central to the BCC’s philosophy. Excellent care is about more than the skill of a surgeon’s hands or an oncologist’s knowledge of the chemotherapeutic arsenal. It is also about understanding the lives affected by a diagnosis of breast cancer. Our aim is to empower the patient to work with her providers and make decisions that are right for her. Communication is crucially important in this process, and non-medical professionals can, with training, play a meaningful role in facilitating it. Here’s how it works:
A patient who has requested our service arrives at the clinic an hour prior to her appointment with an oncologist or surgeon. I come in to the exam room, bumble through my introduction, and set-up a laptop to take notes. Working off a general template, the patient and I talk through what questions and concerns she has going into the appointment: about her situation, the choices she believes she is facing, the things that are important to her, how she will work with her doctor, and what she needs to get out of her visit.
From this conversation emerges a “Consultation Plan,” a document that is both a structured list of questions for the doctor and a window into the patient’s life. The patient keeps one copy of the plan, the other I present to the physician as he or she is preparing for the consultation.
Consultation Recording refers to the second part of the service, in which I sit in on the visit and take notes on the conversation, mapping the doctor’s comments to the issues identified in the Consultation Plan. I’m also there as a facilitator, to help make sure the patient feels all of her important questions are being addressed. We have tape recorders and tapes available for all patients at the BCC, and we record visits as a matter of routine. The patient is provided the tape of the appointment for immediate review.
A day or so later, I mail, e-mail or fax the patient a document with both their Consultation Plan and opposite it, the summary of the doctor’s comments or “Consultation Record.”
Our patients span the full spectrum of breast cancer care, and the issues they face are wide-ranging. But again and again, they have told us how much they appreciate the service, and we see what difference it makes for them.
My fellow planner Dan Chen remembers one patient who arrived disillusioned with other providers she had seen and feeling boxed into a corner regarding her options for treatment. As a result, she questioned everything, down to the details of the standard radiotherapy dosing. After Consultation Planning and a productive conversation with a BCC physician, she left the clinic, in Dan’s words, “psychically 100 pounds lighter, feeling free as a bird.” Our process communicated to her that she had choices and that her input mattered. “Consultation Planning gave her the trust and faith in her caregivers she had previously lacked.”
Some patients come in toting reams of internet research and a list of incredibly detailed questions. Consultation Planning helps them to filter out the concerns that matter to them most. For other patients, it might prompt them to face issues they had previously blocked out. I remember a patient who, at the outset, sought nothing more than a date for her surgery. “No questions, no concerns, just a mastectomy please!” But in the course of our conversation, we discovered that she faced complex family issues that had the potential to impact her care. The bond we formed during our session allowed me to act as her advocate and to talk to the physicians about the barriers that might get in the way of her treatment.
Another of my colleagues, Laura Petrillo, highlights a different benefit of Consultation Planning: It gives the patient a clear agenda going into the appointment and allows the physician to learn about it up-front. Laura remembers a patient for whom sexual health and vitality were an over-riding concern. She was dead-set against stopping hormone replacement therapy. That information gave the clinician the opportunity to have an understanding and open conversation with the patient about risk. Ultimately, doctor and patient developed a plan with which both were satisfied.
Laura Johnson, another member of our team, points out that the part of our service that patients most frequently praise is Consultation Recording. “The audiotape and written record allow the patient to step back from the emotional turmoil of her decision, to review the details of her consultation, and to process the information at her own time.” she says.
When we tell patients that they will have a written record of their appointment, their anxiously grasped pen and legal pad come to rest and their attention turns fully to the physician. When we ask a doctor who is rattling rapid-fire through the details of a clinical trial to clarify a specific point, patients often shoot us a look of conspiratorial thanks. And when we e-mail the finalized plan and record to the patient, we have the satisfaction of knowing that they often read it with the greatest care, using it as an anchor for theirdecision-making.
A patient e-mailed me recently, calling me her “knight in shining armor.” Perhaps her post-mastectomy pain meds hadn’t worn off yet, but the remark nonetheless brought a smile to my face. I was reminded not only of what a lovely person she was, but also how much I have gained through my involvement in Consultation Planning and Recording.
As young people considering or preparing to begin careers in medicine, my fellow interns and I all appreciate this opportunity to meet patients, hear their stories, see brilliant physicians at work, and do our own part to help. The experience has provided us with insight into people, illness, and the health care system. In the process, all of us have become evangelists of one sort or another, thinking about how to integrate the practice of shared decision-making into the care we will some day provide or even into the medical education that we will receive in the more immediate future.
Most of all, I think we’ve all grown to appreciate how patient-centered care can make a place like the BCC special. “The atmosphere becomes very familial,” says Christina Minami, the fifth member of our crew. “It is the kind of place where I would want my mother or grandmother to go.”
Consultation Planning and Recording is available free to any patient scheduled to see a surgeon, oncologist or other clinician at the BCC. For more information on the service and to see a sample consultation plan and record, visit our web page at www.ucsfbreastcarecenter.org/decisionmak.html To schedule an appointment, please call (415) 353-7037.