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Title:
Barriers to Optimal End-of-Life Care for Adolescents and Young Adults with Cancer: Bereaved Caregiver Perspectives
Source:
Mack JW, Currie ER, Martello V, et al. Barriers to Optimal End-of-Life Care for Adolescents and Young Adults With Cancer: Bereaved Caregiver Perspectives. J Natl Compr Canc Netw. 2021;19(5):528-533. Published 2021 Feb 11. doi:10.6004/jnccn.2020.7645
Background:
In the United States of America, cancer is the leading disease-related cause of death in adolescents and young adults (AYAs), defined as persons aged 15-39 years. Despite the standard of care including promotion of attention to symptom management, communication regarding the future, and inclusion in decision making, these patients frequent recently receive aggressive treatments at the end of life. This includes hospitalizations, ICU stays, and chemotherapy. Death often occurs in the hospital and there is underutilization of hospice for those who do die at home, particularly for minorities and those of lower socioeconomic status. The intent of the study was to identify the barriers to optimal end-of-life care for adolescents and young adults.
Design and Participants:
This study was a qualitative interview study. There were three centers participating in this study- University of Alabama at Birmingham, University of Iowa and University of California San Diego. Efforts were made to include participants across socio-economic status categories by specifically seeking caregivers of AYAs who were uninsured, insured by Medicaid or living in a zip code with a median income that was less than or equal to 200% of the federal poverty level. There were 252 AYAs who died of cancer between 2013 and 2016. Bereaved family caregivers were identified in the medical records and mailed invitations to participate in a survey and phone interview. The semi structured interviews, occurred between June 2017 and July 2018. There were 260 caregivers of the 252 patients identified. However, they were unable to reach 80 caregivers due to incorrect or changed addresses. There were 66 caregivers who declined to participate and there was no response from 74 caregivers. Of the 40 caregivers who agreed to participate, they gathered 35 surveys and 28 interviews. Since they reached thematic saturation at 28 participants, they did not seek any further participation. Questions were focused on decisions regarding the use of hospice, palliative care and location of death. They explored barriers to best end-of-life care and ways that the care did or did not meet the needs of the patients.
Results:
Three quarters of the 28 participating caregivers were female. Half of the caregivers were parents and 40% were spouses or partners. Almost half of the caregivers, 46%, were college graduates. Regarding age distribution of the patients, 25% of them were aged 15-21 years at death, 32% were 22-29 years and 43% were 30-39 years. Almost half, 46%, had Medicaid or other public insurance and 54% of them lived in a low-income zip code.
Home hospice services were rendered to 17 patients, while 13 patients received palliative care consultations, though not all caregivers could remember if palliative or hospice services were utilized. Twelve patients died at home. Of these, 5 of them were 15-21 years and 7 of their participating caregivers were parents. The care sought was based on the goals of the AYA and support for the family, rather than based on a specific service or place of death. Particularly in situations where it was felt that comfort and emotional support were suboptimal, there were lingering questions or regrets. The 3 main barriers optimal end-of-life care were suboptimal communication, emotional challenges and limited or inflexible options for care.
Suboptimal communication included communication regarding prognosis occurring late in the course of illness. It was felt that opportunities were missed to make timely decisions about comfort-focused care and quality of life when communication regarding prognosis occurred late. Lack of discussion about prognosis was felt to remove the opportunity for conversations between the caregiver and patient. There was the barrier of patients and caregivers having difficulty accepting the poor prognosis. It was felt that the AYAs would have benefitted from emotional support regarding coming to terms with the illness and dying. The need for better emotional support for the caregivers was also described. Regarding options for care, it was not always possible to achieve what caregivers envisioned as best end-of life care, often because of dual goals of care focused on both comfort and life prolongation. An example of this was the inability to receive transfusions and other life prolonging treatments on hospice.
Commentary:
Lack of knowledge regarding a patient's prognosis is a barrier to making decisions to focus on comfort and quality at the end of life. In this study, it was felt that with many patients, an overly optimistic perspective was conveyed by clinicians or conversation regarding prognosis was avoided. Previous research indicates that clinicians have concerns regarding causing distress and taking away hope. This may be more so in the context of young patients. However, research has also shown that most AYAs do want to know about their prognosis and that discussions regarding the future can have positive outcomes including reduced stress and improved peace of mind. Communication regarding prognosis and what lies ahead is very important. There was significant emotional distress for the caregivers and the patients. For some caregivers, distress continued beyond the death of the patient. Support for AYAs, including help coming to terms with prognosis is also important. Lastly, a quarter of caregivers chose in-hospital death due to lack of availability of concurrent care. There needs to be recognition that there may be multiple goals that need to be facilitated. There may be a desire to be comfortable and yet have life prolonging care. However, this is only possible within the current healthcare framework up to the age of 21 years.
Limitations in this study included the small number of participants and lack of diversity among the sample. Despite almost half of the sample being insured by Medicaid and half living in low-income areas, most of the caregivers were white women and nearly half were college educated. Therefore, findings may not represent the perspectives of a less resourced population. Further research will be needed. A strength of the study was the participation of caregivers from 3 sites.
Bottom Line:
Aggressive care at the end of life and inpatient death among adolescents and young adults are not necessarily reflective of a desire for the pursuit of all treatment options by this population. Suboptimal communication, inadequate emotional support and lack of concurrent care models for those under 21 years, who may have dual goals of living as long and as comfortably as possible, have been identified as challenges that need to be addressed.
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