TOPLINE:

In a retrospective cohort study of 34 adolescent and young adult patients with cancer who received medical assistance in dying (MAID) in Alberta, Canada, symptom burden increased sharply about 5 months before death, yet only half received specialist palliative care within 3 months of death. Patients experienced high symptom complexity, particularly tiredness, poor well-being, and pain, and 80% cited the loss of ability to engage in meaningful activities as the primary source of suffering.

METHODOLOGY:

• The use of MAID has grown in Canada ever since its legalization in 2016. In 2024, MAID accounted for 5.1% of deaths, with cancer accounting for 61% of MAID cases. Adolescents and young adults with cancer face unique life-stage challenges and often receive less end-of-life care. However, little is known about the use of MAID among this patient population.
• Researchers conducted a retrospective cohort study of all patients in Alberta, Canada, who were diagnosed with a first primary cancer between ages 15 and 39 years and received MAID for cancer before the age of 45 years from 2016 to 2022. A total of 34 adolescent and young adult patients with cancer (median age at diagnosis, 33.44 years; 52.9% women) who received MAID were included. Carcinomas accounted for 61.8% of diagnoses, with gastrointestinal tract and breast cancers being most common.
• Researchers linked cancer registry data with the provincial MAID database and reviewed medical records to abstract data on demographics, supportive care use, and Edmonton Symptom Assessment System-revised (ESAS-r) patient-reported outcomes.
• A qualitative thematic analysis of clinicians’ longhand medical charting was conducted to identify factors influencing MAID decisions, and the resulting themes were integrated with quantitative findings using a joint display.
• Researchers determined the trajectories of symptom burden over the year before death, timing of specialist palliative care referrals, and patient-reported sources of suffering at the time of MAID provision.

TAKEAWAY:

• Symptom burden increased significantly across all ESAS-r domains over the year before death (P < .001 for all; standardized effect sizes ranging from 0.91 for anxiety to 2.71 for pain), with three trajectory phases observed: a relatively stable period from about months 11 to 5 before death, a sharp rise between about months 5 and 3, and relative stabilization from about month 3 until death.
• The median time from diagnosis of advanced disease to recommendation or involvement of specialist palliative care was 11.4 months; the median interval from diagnosis to provision of MAID was 1.1 years, and 52.9% received specialist palliative care within 3 months of death.
• Symptom complexity rose sharply in the year before death: Most patients reported low complexity during months 5-11, 7 of 10 patients (70%) reported high complexity 3 months prior to death, and final-month scores were highest for tiredness, poor well-being, pain, and drowsiness. Compared with the general cancer population, adolescents and young adults had a higher rate of high symptom complexity (71.4% vs 60.6%) in the final month and waited about 1-2 months longer from peak symptom severity to access MAID, the authors wrote.
• At assessment and provision of MAID, 24 of 30 (80%) patients had lost the ability to engage in meaningful activities, 21 (70%) were concerned about control of other symptoms or had inadequate control over them, 19 (63.3%) reported inadequate pain control or worry about pain, and 18 (60%) reported loss of dignity.
• A qualitative analysis of clinician notes identified recurrent themes of social isolation, negative experiences of cancer deaths among close contacts, desire for control over timing and circumstances of death, and acceptance of death.

IN PRACTICE:

“This cohort study suggests that healthcare professionals may use advanced disease diagnosis or patient-reported symptom scores to trigger timely [specialist palliative care] referrals for adolescent and young adult patients with cancer, which may improve experiences at end of life and avert hastened death,” the authors concluded.

“All cancer centers and major hospitals need to demonstrate structures capable of delivering timely, specialist driven, interdisciplinary palliative care, such as outpatient supportive and palliative care centers, and inpatient [palliative care units],” remarked Eduardo Bruera, MD, Department of Palliative, Rehabilitation, & Integrative Medicine, UT MD Anderson Cancer Center, Houston, in an accompanying editorial, pointing out that “this important article should be a call for action.”

SOURCE:

This study, led by Emilie Muth, MN, University of Calgary, Calgary, Alberta, Canada, was published online in JAMA Oncology.

LIMITATIONS:

Patient-reported outcome data were incomplete because ESAS-r completion was voluntary, leading to missingness and potential bias. Medical chart review was limited to oncology and inpatient records and did not include palliative-home-care program records. Additionally, the sample size was small, which limited statistical power and generalizability.

DISCLOSURES:

The authors did not disclose any funding information. Three authors reported receiving grants or honorarium or personal fees from various sources including Alberta Cancer Foundation, Alberta Health, the Canadian Institutes of Health Research, University of Calgary and others. One author declared being employed with New South Wales Health outside the submitted work. Full disclosures are noted in the original article.

This article was created using several editorial tools, including AI, as part of the process. Human editors reviewed this content before publication.