Key Research Trends: Telehealth Impacts, Global Gaps in Hospice, Goal-Concordant Care

Research trends can help hospice providers improve their understanding around the impacts of their services and where quality gaps may exist.

This article details recent key research findings on hospice care, including the effects of telehealth utilization among terminally ill pediatric patients, along with barriers to improved goal-concordant end-of-life care in Asia, Canada and Europe.

Research on global and national levels can play an important role in the ability to understand issues around hospice utilization and disparities.


Telehealth interventions ease pediatric hospice transitions

Data on telehealth impacts are key to shaping future policies as regulatory flexibilities evolve.

Researchers recently piloted a study that examined telehealth-based interventions among hospitalized pediatric cancer patients. Their research found that coordinated telehealth visits with hospice interdisciplinary staff helped ease care transitions among young adults and children.

The study spanned the telehealth experiences of terminally ill cancer patients 29 years old and under who were eligible to receive hospice care between 2021 and 2023. More than half (60%) of the 40 eligible pediatric patients enrolled in hospice after receiving three telehealth visits from interdisciplinary staff, the study — which was published in the Journal of Pain and Symptom Management — found.


The study points to the potential for telehealth utilization to improve care coordination and quality for dying pediatric populations, researchers stated. Researchers included those from Children’s Healthcare of Atlanta, Harvard Medical School and pediatric departments at Brigham and Women’s Hospital, Emory University School of Medicine and Massachusetts General Hospital.

“Participants found coordinated telehealth visits to be feasible, acceptable, and satisfactory,” the researchers wrote in the study. “Telehealth may be utilized as an acceptable alternative to clinic visits and fosters hospital-hospice collaboration.”

The research also dug into the quality impacts of these services among patients and providers alike, examining Consumer Assessment of Healthcare Providers and Systems (CAHPS) quality scores and surveying staff with a technology acceptance model.

Patients, caregivers and family members surveyed rated the telehealth hospice services as “highly satisfactory,” including those from bereavement staff members along with clinicians.

Health care professionals surveyed included hospice nurses and administrators, as well as oncology and palliative care clinicians. Nearly all, or 96%, of hospice teams reported “excellent” collaboration with other health care professionals throughout the telehealth utilization period, which compared to a rate of 86% reported among hospital clinicians.

The data comes at a time of regulatory flux around telehealth rules. During the COVID-19 public health emergency, the U.S. Centers for Medicare & Medicaid Services (CMS) allowed hospices to perform routine home care visits virtually, as well as face-to-face recertification visits. Congress extended the flexibility through Dec. 31, 2024.

A bill recently introduced to Congress proposed to extend these telehealth flexibilities until 2026. If enacted, the Preserving Telehealth, Hospital, and Ambulance Access Act, would — as of 2025 — extend the flexibilities by two years.

Global gaps in access, goal-concordant care

Global data trends can reveal common threads of challenges and unmet needs among serious and terminally ill patients and their families.

Many pediatric patients in Canada facing life-limiting illnesses do not receive palliative or end-of-life care, according to Cardus research. The research analyzed various studies spanning the last decade that examined pediatric end-of-life care delivery in Canada.

Of the estimated 2,400 children and young adults who die from serious illness annually in Canada, a large majority lack access to interdisciplinary end-of-life professionals, the research found. Barriers are similar to those in the United States and other countries, including workforce and education challenges amid rising demand.

“Large gaps remain and require attention and redress” when it comes to Canada’s supply of pediatric end-of-life care professionals, the researchers stated. Not enough health care professionals are trained to deliver end-of-life care to pediatric populations who often have more complicated health trajectories compared to adults.

Medical professionals often lack exposure to end-of-life pediatric training in supporting psychosocial, spiritual and emotional needs as well as managing physical symptoms among these patients, the analysis found.

The insufficient staffing resources has not only impeded access, but also impacted quality and financial outcomes. Lagging access to pediatric end-of-life care has been associated with higher hospitalizations and more intensive treatments among youth populations in Canada.

One study in the analysis found that more than two-thirds of children based in Ontario died in intensive care units or emergency departments. This compared to a separate 2023 Canadian study that found 16.1% of pediatric patients die in the home.

“The vast majority of children die in hospitals instead, and often in acute-care settings, such as emergency departments and pediatric intensive-care units,” researchers said. “This may result in the receipt of high-intensity interventions in these settings at the end of life, which may not adequately support a focus on comfort care or quality of life.”

The ability to tie hospice utilization to cost-savings metrics across the care continuum has become an important lever in providers’ value propositions.

Key data around advance care planning impacts have also come into play in the hospice landscape. Research in the United States on advance care planning utilization has shown promise when it comes to higher hospice enrollment and lower incidences of intensive therapies among patients nearing the end of life. These services have also been associated with cost reductions of hospitalizations, readmissions and emergency department visits.

Similar data trends are taking shape in Asia and Europe.

Terminally ill patients who hold goals-of-care conversations with their clinicians will often opt against more intensive and expensive health care services at the end of life, JAMA Network research recently found. The study examined goals-of-care conversations among patients and their families across two major cancer centers in Singapore.

Nearly a quarter (24%) of 210 advanced-stage cancer patients in Singapore prioritized symptom management above life-extending health care measures, with 28% also opting for cost-containment services versus expensive treatments, the study found. This compared to 35% of caregivers who prioritized life extension.

The findings suggest gaps in goal concordant care delivery that can result in higher care costs at the end of life, the researchers indicated.

“Findings suggested the importance of interventions aimed at reducing discordance in goals of care between patients and caregivers and helping them develop realistic expectations to avoid costly, futile treatments,” the researchers wrote.

Meanwhile, a research project launched in the United Kingdom is also digging into the impacts of advance care planning among terminally ill patients.

Researchers from the International Observatory on End-of-Life Care at Lancaster University and the Lancashire Teaching Hospitals NHS Trust’s Rosemere Cancer Centre have moved forward on research that will explore cancer patients’ views of these services.

Anticipated to unfold results by the end of 2024, the research will examine how advance care planning affects timely access to end-of-life care that is in line with patients’ expressed wishes.

Main factors fueling the research include a growing need to better understand patient goals as well as improved communication approaches among professionals.

“This research project will help improve advance care planning conversations with patients,” Professor Ruth Board, a medical oncologist at the Rosemere Cancer Centre, told local news. “The study may provide the foundation for further research into how best to help healthcare professionals have ACP conversations with patients and carers in a way that is timely, sensitive and in accordance with patients’ wishes.”

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