Under the Hood

Examining End-Of-Life Care For Patients Under 40: ER, ICU Services Accessed More Often By Young Patients

Teen Cancer Patient
More than two-thirds of adolescents and young adults dying of cancer accessed one or more aggressive interventions during their last month of life: study. Reuters

When facing their final days, the young may be apt to respond differently than the old, a new study indicates. More than two-thirds of adolescents and young adults dying of cancer accessed one or more aggressive medical intervention during their last month of life. 

Based on these results, the researchers suggest practitioners speak with younger patients in order to help them understand a difficult prognosis, to identify their preferences, and to work with them on delivering the care they desire.

"Right now we don’t really know what kind of care young people want. They may very well want aggressive measures at the end-of-life,” Dr. Jennifer Mack, a pediatric oncologist at Dana-Farber/Boston Children's Cancer and Blood Disorders Center, told Medical Daily. The feelings of older patients facing end-of-life care are understood by health care practitioners, but for younger patients, she said, "It’s an unknown."

Exploring the Unknown

Generally speaking, end-of-life care in adolescents and young adults has never been examined, even if a single study investigated the treatment of 45 patients at an advanced stage of illness. So a team composed of researchers from Kaiser Permanente Southern California (KPSC) and Dana-Farber/Boston Children's made use of the managed care organization’s database in order to learn more about this sensitive time period in a young life. Specifically, the team, led by Mack, dipped into KPSC’s cancer registry and electronic health records in order to identify 663 patients, who either had a recurring cancer or a diagnosis of stage 4 disease. All of these patients had died between the ages of 15 and 39 somewhere within the span of years of 2001 through 2010.

Reviewing the data, the researchers focused on chemotherapy use in last two weeks of life; intensive care unit or emergency room services in the last month of life; and hospitalization in final 30 days of life. Next, the team located records on terminally ill Medicare patients, age 65 or older, and compared the two groups.

Analysis indicated both sets of patients, young and old, made use of chemotherapy — which may be used for palliative purposes — and hospitalization during their final days. About 11 percent of the younger patients received chemotherapy in their last 14 days, while in their last 60 days, 62 percent were hospitalized. The data for the Medicare patients was similar.

"I think that there are many reasons in all ages why patients receive intensive measures at end of life," noted Mack.

However, striking differences between the two groups appeared in one general area of care. 

The young patients were more than twice as likely as Medicare patients to access intensive care and/or emergency room services in their final month: 22 percent of the adolescents and young adults used these interventions, while less than 10 percent of the older patients did so. Looking at all the interventions together, the study results indicate 68 percent of the younger patients received at least one form of intensive care, suggesting this is the end-of-life norm for this population.

“Although adult patients who know they are dying usually do not want to receive aggressive care, which is associated with poorer quality of life near death, we do not know whether adolescent and young adult patients feel the same way,” wrote the authors in their study.

That said, Mack noted young patients may be willing to do anything in order to live longer, so the real question is how decision-making unfolds for each patient during their crucial final days. She suggests young patients simply may end up on the intensive care track for reasons other than a heartfelt desire to undergo such treatments.

"Rather than being about patients' preferences, [end-of-life care] is more often about the way communication unfolds and patients' awareness of their core prognosis," Mack told Medical Daily. These vulnerable patients simply may not understand they have choices.

Interestingly, the Centers for Medicare and Medicaid Services (CMS) proposed on Wednesday a new rule that would include reimbursement to practitioners for “advance care planning,” voluntary discussions that give seniors who receive Medicare “control over the type of care they receive and when they receive it.” Such conversations would allow patients to decide which treatments they want — and possibly which they do not want — in the event a future illness impacts their ability to make decisions.

Source: Mack JW, Chen LH, Cannavale K, et al. End-of-Life Care Intensity among Adolescent and Young Adult Patients with Cancer in Kaiser Permanente Southern California.  JAMA Oncology. 2015.

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