Helping Patients Talk With Their Care Team
The benefits of good communication between patients and clinicians – and the difficulties that arise when it is lacking – can be far-reaching. As a postdoctoral fellow, Rachel Pozzar, PhD, RN,
surveyed 176 patients with ovarian cancer about the quality of their interactions with their clinical care team and its broader effect on their well-being.
"Participants who rated their communication highly or viewed it as more patient-centered had better quality of life and lower symptom burden than those who rated it lower," says Dr. Pozzar, now an oncology nurse scientist in Dana-Farber's Phyllis F. Cantor Center for Research in Nursing and Patient Care Services.
"In follow-up interviews, those who felt their clinical caregivers communicated well made comments such as, ‘I trust that my doctor has my best interests in mind and is looking out for me.' Those who didn't feel listened to, however, felt that more
of the burden of care was placed on their own shoulders and that they had to advocate more for themselves. It placed an additional strain on being a patient with cancer."
The findings led her to ask whether communication could be improved by offering guidance to patients as well as clinicians regarding these conversations.
"We don't want to overburden clinicians, but we thought it could be helpful to provide brief reminders of how to respond empathetically to difficult questions or disclose information that might be hard to hear in a supportive way," Dr. Pozzar remarks.
"Patients, for their part, may feel uncomfortable asking questions or not know what to ask. We're developing lists of questions that they can review before their visit, so they come in prepared."
Giving patients the opportunity to tell clinicians their concerns prior to an appointment can provide a head start on addressing those concerns. "In interviewing patients across the country, I heard comments like ‘I wish I had a therapist' or ‘I'm having
relationship or intimacy problems,' or even practical matters like ‘I'm struggling with transportation' or ‘I'm worried about finances,'" Dr. Pozzar relates. "These are issues that can really impact a patient's quality of life, but a physician or
nurse practitioner may not be the best person to address them."
To elicit patients' concerns and direct them to the proper specialist in advance of an appointment, Dr. Pozzar is developing an online tool. Sent to patients three days before a visit, it will enable them to identify concerns they want to address while
they're at the Institute. These will be forwarded to the appropriate clinicians, while patients receive tips on discussing their concerns. Usability testing of the tool starts in 2023.
Helping Doctors Better Know Their Patients
For Dr. Wright, a quality-of-life study begins with the awareness of a gap in clinicians' knowledge of significant aspects of patients' experience. "My interest in this field arose from taking care of patients and noticing where we're missing information,"
she says. "We had treatments, we had procedures, but I didn't feel we were seeing the complete person."
One recent project grew out of her sense that clinicians didn't have a full picture of the difficulties patients face after undergoing certain procedures. "Patients and their family members often have to manage complex tasks at home. They may have a new
ostomy bag [which collects waste from a surgical opening in the abdomen] or require TPN [intravenous nutrition that bypasses the gastrointestinal tract]," she relates. "They may have new tubes, lines, or drains, extending from their bodies that require
a lot of care. My colleagues and I felt we didn't have a good understanding of how people adapted to these challenges."
The investigators surveyed patients about the changes they'd made in their lives. They used the responses to develop a program called BOLSTER (Building Out Lifelines for Safety, Trust, Empowerment, and Renewal) to help other patients who have undergone these procedures.
"We created a video series in which patients describe how they manage daily aspects of living," Dr. Wright says. "In one, for example, a woman with a colostomy explains how she changes the bag and how she goes through the security pat-down at the airport
when she travels."
Along with the videos, investigators produced detailed educational materials for patients. During their first month after leaving the hospital, participants met weekly by videoconference with a nurse who guided and coached them through any difficulties
they were facing.
The program was well received, Dr. Wright notes, by patients and family members, who were invited to watch the videos, read the educational materials, and attend the videoconferences. Investigators are currently adapting the program for Spanish-speaking
Overcoming Unique Challenges to Pain Management
In its interest in patients as whole people, quality-of-life research embraces the whole of life, including its end. A particular focus of Wright's work has been pain management for patients with terminal cancer.
In a 2021 study, Wright and Dana-Farber colleague Andrea Enzinger, MD, published a study showing that as the country strove to stem an epidemic of opioid abuse, access to the medications had dropped sharply
among patients dying of cancer. The study found evidence that tighter controls on opioids were increasingly driving terminally ill cancer patients to hospital emergency rooms for pain treatment.
"While the new restrictions are having the desired effect of reducing overall rates of opioid prescribing, our findings suggested that the changes were inadvertently depriving patients with advanced cancer of medicines they need to control their pain
at the end of life," Dr. Wright relates.
Drs. Wright and Enzinger followed that study with one that explored whether the decline in opioid access was consistent across patients from different racial, ethnic, and socioeconomic groups. The results, published this year, made national headlines.
"We found that older Black and Hispanic patients with advanced cancer were less likely than white patients to receive opioid medications in the last weeks of life,"
Dr. Wright remarks. "The inequities were particularly stark for Black men, who were far less likely to be prescribed reasonable doses than white men were." The investigators also found that Black and Hispanic patients were more likely than white patients
to undergo urine screening tests for drugs.
"We are planning follow-up studies to understand inequities in opioid access in different patient populations and at different phases of care, such as after surgery or during active cancer treatment," Dr. Enzinger says. "We are also planning some innovative
analyses that look at patient-level, provider-level, and practice-level data to understand the key drivers of care inequities. These studies are critical so that we can intervene strategically and make the largest possible impact."