"It’s something that any physician can do," but some previous studies report that physicians are reluctant to start end-of-life discussions early because these are emotionally difficult conversations, they worry about taking away hope, and they are concerned about the psychological impact on patients – though there is no clear evidence that it does have psychological consequences for patients, Dr. Mack said.
"It’s a compassionate instinct," she said. "Being in the room with a family when I deliver this kind of news, that emotional impact is right in front of me. I believe there are bigger consequences" from not discussing end-of-life care, such as perpetuating false hopes and asking people to make decisions about what’s ahead without a clear picture of the situation, she added.
The conversation should take place more than once because patient preferences may change over time and patients need time to process the information and their thoughts about it, Dr. Mack said.
Ask Patients What They Hear
Further work is needed on why some documented end-of-life discussions were not reported by patients/surrogates. "Every physician can relate to this, that sometimes we have conversations but they’re not heard or understood by patients," she said. "It reminds me that I need to ask patients what they’re taking away from these conversations and use that to guide me going forward."
That finding echoes two recent large, population-based studies that found many patients with terminal cancer mistakenly think that palliative chemotherapy or radiation will cure their disease.
Some previous studies suggest that patients dying of cancer increasingly are receiving aggressive care at the end of life and that this trend may be modifiable. Cross-sectional studies that assessed one point in time between diagnosis and death have shown that many patients don’t have end-of-life discussions, but these studies probably missed discussions closer to death, Dr. Mack noted.
Other studies have reported an association between having end-of-life discussions and reduced intensity in care. The current study was longitudinal and is one of the first to look at the effects of the timing of these discussions and other factors.
Most patients who realize that they are dying do not want aggressive care, previous studies have shown. Other studies report that less-aggressive end-of-life care is easier on family members and less expensive.
Guidelines from the National Comprehensive Cancer Network, the National Consensus Project for Quality Palliative Care, the American Society of Clinical Oncology, and the American College of Physicians and American Society of Internal Medicine recommend beginning end-of-life discussions early for patients with incurable cancer.
When investigators conducted secondary analyses that excluded patients from Veterans Affairs sites or excluded interviews with patient surrogates, the findings were similar to results of the main analysis.
In the current analysis, 82% of patients had lung cancer, and the rest had colorectal cancer.
Future research on this topic could take many paths, Dr. Mack suggested, including implementing routine early discussions and seeing whether that alters the intensity of final care. Much more could be learned about the quality of discussions between physicians and patients. The current study had no data on discussions led by nurses or social workers or that took place among family members without a medical provider present.
"We’re also interested in looking at a longer trajectory of end-of-life decision making" for patients with incurable cancer – from diagnosis to death, she said.
Dr. Mack and her associates reported having no financial disclosures.