Clinicians cite palliative care benefits, barriers to integration
Study finds wide support, but limited access for ALS patients
Clinicians view early access to palliative care as beneficial for people with amyotrophic lateral sclerosis (ALS), yet its integration into routine care remains inconsistent, a U.S. study found.
About two-thirds of ALS clinicians said they had a palliative care specialist on their team, and just over half of ALS patients were referred to outpatient specialty palliative care, often later in the disease course. Many palliative care clinicians, meanwhile, expressed low confidence in managing ALS-specific needs.
Barriers to palliative care referral included limited access to specialty palliative care services, knowledge gaps among ALS and palliative care clinicians, and a lack of clear referral pathways.
“Increasing the number of [palliative care] clinicians who work closely with ALS teams could achieve multiple goals simultaneously,” the researchers wrote. Benefits, they said, include raising clinicians’ awareness of palliative care, lowering barriers to referral, providing palliative care clinicians with “on-the-job education about ALS,” and “achieving more highly coordinated care.”
The study, “Strengths and Opportunities: Clinicians’ Perspectives on Palliative Care for Amyotrophic Lateral Sclerosis (ALS) in the United States,” was published in Muscle & Nerve.
Palliative care benefits include symptom control, well-being
Palliative care is a medical approach focused on improving the quality of life for people with serious illnesses by addressing not only physical symptoms but also patients’ emotional, social, and spiritual needs and providing support to their families and caregivers.
Studies have shown that early integration into routine ALS management can enhance ALS symptom control, improve patients’ well-being, and support patients and families, the researchers wrote. Despite these benefits, palliative care for ALS remains inconsistently implemented.
“Little is known about how well ALS and [palliative care] teams across the U.S. are currently meeting the [palliative care] needs of [people with ALS] and where gaps in quality of care, service availability, and clinician knowledge and confidence exist,” the researchers wrote.
To better understand the landscape, the team conducted two national surveys collecting responses from 141 ALS clinicians from 72 institutions and 203 palliative care clinicians from 89 institutions, spanning 30 U.S. states.
Most ALS clinicians surveyed worked in multidisciplinary clinics, specialized care centers where multiple healthcare professionals work together. Palliative care clinicians were less likely to be embedded in an ALS team, and most reported seeing two to five ALS patients a year.
While 55% of ALS clinicians felt very confident in managing patients’ pain and 52% said they were able to manage patients’ mood symptoms “very well,” fewer felt the same about their ability to support caregivers (43%) or address spiritual distress (29%).
Key challenges to teams’ ability to address palliative care needs included inadequate staffing and insufficient caregiver support systems (both reported by 32% of respondents), limited time during clinic visits (29%), and difficulties or hesitations around prescribing opioids (23%).
“There’s already so much to cover in an ALS clinic session and patients/families get tired and overwhelmed,” one of the respondents said.
However, only a small minority viewed palliative care as a low priority for patients (12%) or their teams (7%).
On average, ALS clinicians referred 58% of patients to outpatient specialty palliative care, 35% to inpatient palliative care, and 69% to hospice. About 25% of patients requested referrals themselves.
Early screening, training advised
Barriers to specialty palliative care referrals included lack of embedded palliative care providers, with 51% citing limited access within their institution and 43% outside. Concerns about quality (7%) or added complexity (4%) of palliative care were rare, the researchers said.
Most ALS clinicians were satisfied or highly satisfied with the support provided by specialty palliative care. The exception was in managing dyspnea, or trouble breathing, where satisfaction dropped to 62%.
Among palliative care clinicians, 51% felt confident managing motor symptoms or advising caregivers, and 25% felt prepared to assist with equipment needs.
“Most [palliative care] expertise and evidence is focused on people with cancer,” the researchers noted.
There was “broad agreement” that specialty palliative care should be offered to all ALS patients as part of comprehensive care, they wrote.
When asked how to improve care, survey respondents cited the need for education, “more proactive” advice to patients about what to expect from their illness, having “psychosocial clinicians” like social workers as part of the care team, and introducing the option of palliative care earlier in the disease course.
“Bolstering education for all ALS clinicians about core [palliative care] topics … is warranted and could help ALS clinicians provide elements of primary [palliative care] better,” the researchers wrote. At the same time, they said, “more education about ALS should be integrated into [palliative care] training programs and continuing education.”
Respondents also called for improved access to specialty palliative care, stronger collaboration between ALS and palliative care teams, and greater clarity around the distinction between palliative care and hospice.
Some 26% of ALS and palliative care clinicians reported referring patients to hospice later than they would otherwise, or not at all, because of concerns about inadequate hospice services.
The researchers said the study results show clinicians’ “strong endorsement” of palliative care for ALS patients, while “highlighting the need to bolster bi-directional clinician education, specialty [palliative care] services, collaboration between [palliative care] and ALS clinicians, and research.”
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