End-of-life discussions are happening too late in the treatment of high-risk acute myeloid leukemia, according to a study of 200 patients at Massachusetts General Hospital and the Dana Farber Cancer Institute, Boston.
The prognosis is not good for high-risk AML, which the study defined as either a relapsing / relapsing disease or a diagnosis beyond the age of 59. Almost 60% of patients (114) died during the 7-year study that began in 2014.
Therefore, it is important to make end-of-life decisions, when patients are still able to discuss them, so families don’t have to worry about how aggressively their loved ones wanted to have their final care, said senior investigator Hannah Abrams, MD , an intern in internal medicine at the Massachusetts General. She presented these results at the annual meeting of the American Society of Hematology.
However, discussions about the end of life often come too late. The study team found that nearly 40% (45/114) of the patients who died during the study were not involved in their final code decisions, most of which were just comfort care. Many patients were too sick to attend; the median time between the last code change and death was only 2 days.
Abrams said she saw families torment themselves when patients didn’t bring up the problem beforehand. “Having that stuff made me believe that it was really important to watch this. It’s really important to have these conversations in advance, ”she said in an interview.
When asked for comment, hematologist and oncologist Toby Campbell, MD, director of palliative care at the University of Wisconsin, Madison, agreed.
He called this problem a “missed opportunity for patient autonomy and self-determination. Patients with high-risk AML often experience rapid changes in their clinical condition that are surprising to everyone. Healthcare providers should do more to prepare patients and families than let surprise, “Campbell said.
Part of the problem, Abrams said, is that end-of-life discussions can fall through the cracks amid urgent discussions about chemotherapy options and other matters.
“One of the most important things to do to make this more doable is to plan and reimburse the time in the clinic for it,” she said, noting that “15 minutes for patients and clinicians to talk about” worked out and need to be protected.
Another aspect is that patients are often too optimistic about their prognoses, so that discussions at the end of life do not seem so urgent. Educational materials about the importance of various code options and their appropriateness could help, Abrams said.
On the psychological impact of making early end-of-life decisions, Mikkael Sekeres, MD, director of the Department of Hematology at the University of Miami, emphasized the importance of telling patients, “We are having this conversation because you are you’re fine, not because you’re bad, and this is the time to have it. “
“Sometimes it takes a Guardian event like an ICU stay before some people want to join the conversation, and unfortunately that is often too late,” said Sekeres, who moderated Abrams’ presentation at the meeting.
Among other things, Abrams and her team reported that 86.0% of patients were fully coded at diagnosis and 8.5% had limitations on life-sustaining therapies. Overall, 57% (114/200) of the patients experienced a code-status transition, with a median of two transitions during their illness.
In the deceased patients, advancing age and receiving non-intensive chemotherapy were associated with previous discussions about code status.
The next step in the project is to determine whether palliative care consultations lead to earlier discussions and greater patient involvement.
There was no commercial funding for the study, and Abrams and Campbell had no relevant information. Sekeres is a consultant to Novartis, Takeda and BMS.
This article originally appeared on MDedge.com, part of the Medscape Professional Network.