Anne Polta reports on health care for the West Central Tribune in Willmar, Minnesota. Her personal experiences as a patient include treatment for non-Hodgkin’s lymphoma at age 38 and an adverse medical event resulting in injury. She has covered health care – specifically patient engagement and patient safety – for more than 20 years. This post originally appeared on her HealthBeat blog on March 30, 2012 and you can follow her on Twitter via @a_polta_wctrib.
Family togetherness is usually a good thing but sometimes it’s a source of conflict, and new research suggests doctors can be slow to recognize when families disagree about the best course of care.
A small-scale study involving patients with advanced lung cancer, their oncologists and caregivers found that the doctors didn’t always notice differences of opinion between patients and families.
In interviews conducted separately with the participants, the researchers found that most of the time, patients and families did agree on important care decisions such as extra tests or options for hospice care. And most of the time, the doctors correctly perceived there were no conflicts between the patient and caregiver.
But in seven cases in which a patient reported conflict with a family caregiver, the doctor picked up on only two of them. Of the 17 cases in which a caregiver reported conflict, five of them were recognized by the doctor. And in the 15 instances in which both the patient and caregiver separately reported some kind of conflict, only two of them were recognized by the doctor.
This was a very small study but the implications are intriguing.
Do the findings mean doctors are often obtuse about what’s going on between patients and caregivers? Sometimes they are, perhaps. “This is not something that oncologists regularly explore with patients,” Laura Siminoff, of the Virginia Commonwealth University School of Medicine and one of the researchers, told Reuters News.
But it’s equally likely that patients and families often hide their disagreements when they’re in the presence of the doctor. Maybe patients are uncomfortable bringing it up, especially if a family member is in the exam room with them, or maybe they don’t want to bother the doctor with something they perceive as trivial, Siminoff suggested.
There’s a bigger question here, though: Does family involvement help or hinder patient care?
Experts in patient advocacy are unanimous in believing patients fare better when they have a family member or caregiver who’s committed to helping them manage their health and who can advocate for care that’s in their best interests. There’s been considerably less focus on how to deal with families who disagree or don’t function well together.
American Medical News recently explored this topic and what it means for the clinician who’s sometimes caught in the middle:
Even as the push toward the patient-centered medical home stresses the invaluable role that families can play in improving compliance and health outcomes, the presence of a relative raises a host of complicated issues for physicians to navigate.
“Now you’ve got potentially two patients in the room,” says Jason Karlawish, MD, professor of medicine and medical ethics at the University of Pennsylvania School of Medicine. “You even have a kind of third patient, which is the relationship between the family member and the patient. If you ignore that, you ignore it at your own peril.”
Some examples of how the dynamics can get complicated: The patient might not want the family member in the room but is too polite or too intimidated to say so. Family members might have an agenda that conflicts with that of the patient. Relatives who are distrustful might second-guess or undermine the doctor’s assessment and recommendations.
The visit doesn’t have to get adversarial to be difficult, noted the physicians interviewed by American Medical News. Sometimes well-meaning family members simply take over the discussion, talking on behalf of a patient who’s perfectly competent to speak for himself or herself. Or they might appeal to the doctor to take sides in a family dispute over health behaviors, such as a spouse who doesn’t want to stop smoking or an aging parent who doesn’t want to take a medication.
The biggest mistake that can be made, according to Dr. Yul Ejnes, an internist in Cranston, R.I., is “to forget that the patient is the boss.”
Conflict can be magnified a thousandfold in high-stakes situations, such as when end-of-life decisions need to be made. The study involving the lung cancer patients and their caregivers and oncologists didn’t look at whether disagreements – and the doctor’s lack of awareness of them – had an impact on care, but Reuters Health spoke to experts who said the discord often raises the family’s stress level and can complicate the process of making treatment decisions.
Dr. Anthony Back, an oncologist at the Seattle Cancer Care Alliance, said it’s important for oncologists to notice the cues and to call in a social worker or therapist to help resolve family differences. “Sometimes those things are beyond the purview of the oncologist,” he said. “But when (patients and caregivers) have some major issues, they need to figure it out and we have other resources for them.”
Related Links:
Anne Polta reports on health care for the West Central Tribune in Willmar, Minnesota. Her personal experiences as a patient include treatment for non-Hodgkin’s lymphoma at age 38 and an adverse medical event resulting in injury. She has covered health care – specifically patient engagement and patient safety – for more than 20 years. This post originally appeared on her 
Starting in 2015, students who aspire to become doctors will be tested on more than just their knowledge of the sciences. They’ll also need to have a good understanding of psychology, sociology and biology and how these forces help shape individual health and behavior.
Aftershock:
The Center for Advancing Health is funded by