Terminally ill patients often lack a firm understanding and awareness about their end-of-life care options, a trend researchers across the world are examining more closely.

Underserved neurological patients

Patients with neurodegenerative diseases are less likely to receive hospice care compared to others, according to a recent study published in the Neurology journal.

The study spanned more than 1.12 million Medicare decedents who died in 2018 and examined the differences in hospice utilization during the last year and a half of life. Researchers compared the experiences of individuals with various conditions such as Alzheimer’s and dementia, Parkinson disease and amyotrophic lateral sclerosis (ALS) against patients with non-neurological conditions including brain tumors and pancreatic cancer.

Decedents with neurodegenerative diseases had lower odds of hospice enrollment during the last six months of life compared to others, the study found. These patients also faced a higher likelihood of entering emergency department (ED) settings during that time frame.

The trends in low hospice utilization indicate a greater need to improve referral relationships and examine the leading barriers that may exist across the nation’s health care continuum, according to researchers.

“Persons with neurodegenerative diseases in the United States are more likely to visit the ED and less likely to use inpatient and hospice services at [the end-of-life (EOL)] than persons with brain or pancreatic cancer,” researchers stated in the study. “These group differences may stem from prognostic uncertainty and reflect inadequate EOL care practices, requiring further investigation to ensure more timely palliative care and hospice referrals.”

The high costs of low hospice utilization

Ovarian cancer patients in Canada who receive palliative care services have lower rates of aggressive end-of-life treatment utilization compared with others, according to a data analysis study published in JAMA Network Open.

Researchers at McMaster University examined patient data trends in palliative care provision across various health care settings in Ontario, Canada, from 2006 to 2018.

One-third of 8,297 ovarian cancer patients received late referrals for palliative care services, the analysis found. Patients who received these services in the last three months of life were less likely to receive aggressive end-of-life care or be admitted to intensive care or hospital settings compared to others.

The findings indicate that a stronger palliative care presence across the care continuum could help improve quality at the end of life, according to the researchers.

“Implementation strategies for early palliative care initiation are needed to optimize care quality and health resource utilization at the end of life,” the researchers stated in the analysis.

Blood cancer patient battle barriers

Blood cancer patients are another group lagging in hospice utilization, according to research published in the Journal of Pain and Symptom Management.

More than half (54.9%) out of 113 hospice providers polled across the United States in 2022 reported never offering transfusions to blood cancer patients, while 40.7% indicated that they offered these treatments “sometimes.”

A large portion, 76.6%, of the hospices indicated that a lack of transfusion access served as a leading barrier to their services among blood cancer patients. About 72.1% of the respondents stated that additional reimbursement for transfusions would be “very helpful” as a top intervention to increasing hospice enrollment.

“These data suggest that hospice providers are supportive of increasing transfusion access and highlight the critical need for innovative hospice payment models to improve end-of-life care for patients with blood cancers,” researchers said.

Stakeholder support is mounting for stronger blood transfusion reimbursement in hospice. Having greater payment options for blood transfusions could vastly improve quality outcomes and access, experts previously told Hospice News. Greater transfusion support could translate into smoother care transitions in the home among hospice patients, they indicated.

Advance care planning lags in younger patients

Younger terminally ill cancer patient populations often do not document their goals of care until the final month of life, a Medscape study found.

The study examined 1,929 adolescent and young adult cancer patients who died between January 2003 and December 2019 across three health care organizations in the United States.

More than half (57.7%) of the youth cancer patients had documented goals of care conversations within the last 30 days of life, while only 7.2% held these discussions within 61–90 days of their death, the research found.

Racial disparities in advance care planning were also “evident,” the researchers stated. Black and Hispanic or Latino patients had “significantly higher rates” of undocumented goals of care discussions (19.1% and 22.6%, respectively) compared to white and non-Hispanic patients (14.1% and 12.2%, respectively), the study found.

More research is needed to better understand the issues preventing wider advance care planning utilization among younger cancer patients and improve goal concordant care delivery, the study authors indicated.

“Most patients had no documented goals-of-care discussion until they were close to death,” they wrote. “Goals of care discussions are vital for patients with cancer, particularly young adults. However, for adolescents and young adults with advanced cancer, the evolution of care goals and how often these discussions happen remain unclear.”