Cancer specialists and primary care physicians are not communicating very well about the end-of-life concerns of the patients they share - and according to one new study, they often rely on those patients to convey information back and forth.
Researchers in the Netherlands found that end-of-life discussions are rarely a subject of direct, interprofessional communication.
Although the study, published in the journal Family Practice, reflects European realities, its findings likely resonate across the siloed American health system, too.
"Most patients in the U.S. have many doctors, and if each is doing their own little thing, no wonder patients are confused," said University of Washington professor and oncologist Dr. Tony Back, who was not involved with the study. "The primary care doctor says, 'I think I should talk about end-of-life care with this patient,' and the oncologist says, 'We have another treatment to try.' The patient is saddled with sorting that out, and it's not fair."
The research team, led by Dr. John J Oosterink at VU University Medical Center in Amsterdam, interviewed 16 general practitioners and 14 cancer specialists about the last discussion they had with a patient about end-of-life issues. Oncologists were asked whether they knew what their patients' general practitioner discussed, and general practitioners were asked the same about oncologists' involvement.
The study investigators did not respond to a request for comment.
While general practitioners and oncologists all recognized the importance of timely end-of-life discussions, most believed general practitioners - due to longstanding patient relationships - were in the most appropriate role to facilitate them.
General practitioners who spoke about end-of-life issues emphasized patients' wishes and concerns. Oncologists focused on incurability and non-treatment orders.
Some American oncologists don't expect primary care physicians to be involved in end-of-life planning at all.
"That relationship gets lost in a cancer diagnosis, and most of my patients stop seeing the internist," said Virginia Kaklamani, a professor of medicine and leader of the breast oncology program at the University of Texas Health Science Center in San Antonio who wasn't involved in the study. "The person closest to the patient should initiate an end of life discussion, and that person ends up being the oncologist."
Kaklamani told Reuters Health that after an initial phone call following a new patient appointment, talks with primary care physicians are rare. "If everything was done right, it would be extremely helpful for communication to be better. But for impact, the internist would need to have a relationship with the patient and continue to follow the patient. That's not happening."
According to internist Dr. Cheryl Wilkes, a clinical practice director at Northwestern University's Feinberg School of Medicine in Chicago, the primary care doctor's communication with oncologists is often limited to what is written in the electronic medical record.
"I get a copy of their note, and it's on me to look at it," Wilkes told Reuters Health. "I'll have a feel for how the cancer is progressing, but as an internist, I don't know the exact implications of what that means for their time frame."
Wilkes does initiate these essential talks herself. Medicare's new coverage of advance care planning as part of the "Welcome to Medicare" visit and annual wellness visits that follow encourages her to start this conversation more frequently. "I love it that once a year, I am enabled to do it," said Wilkes, who also was not involved in the study.
Back says that efforts like Wilkes' are essential to prepare patients for the end of life and ensure they receive the same message from each physician they see. Challenges arise when internists initiate end of life dialogue, but oncologists tell patients that such discussions are premature. Back is one of the co-founders of the non-profit Vital Talk, which develops communication courses to foster better connections between patients and clinicians - particularly surrounding end-of-life care.
"What is happening in our system is the internist, who maybe knows the patient well and is better at drawing out that patient's values, doesn't have a very clear place at the table," Back said. "They can bring something very important to this situation."