Palliative care is often the best option for patients with progressive neurodegenerative diseases, yet neurologists generally receive little training in palliative care. A systematic approach to communication that can be applied early in the development of progressive neurodegenerative diseases when developing palliative care programs is crucial, according to results of a qualitative study published in Neurology: Clinical Practice.
Study researchers sought to understand the communication challenges neurology clinicians face while addressing the needs of patients and caregivers.
They conducted 3 focus group semistructured interviews with 22 clinicians: the first focus group included 9 memory disorders clinic providers, the second involved 7 amyotrophic lateral sclerosis (ALS) clinic providers, and the third comprised 6 nurses from both clinics. The participants had a median of 7 years in practice, and 18% of them had some previous palliative care training.
Using a thematic analysis approach and analyzing data with the constant comparison method, the team coded transcriptions of the interviews line by line to identify organizing themes and selected reflective quotes.
They identified 5 themes: conversations are triggered by acute events and practical needs; many conversations happen but are rarely documented; cognitive impairment prompts increased decision-making of the primary caregiver and conflict can lead to ethical dilemmas; there are multiple communication challenges; and it can be difficult to distinguish the role of specialty palliative care.
In-person, interdisciplinary team communication is more common than written documentation, and because conversations typically include caregivers, identifying the primary caregiver early on is a clinical priority, they found.
Neurology clinicians also highlighted 3 communication challenges: where to begin, because patients and families are often overwhelmed while facing acute medical issues; how to support patients and surrogates in decision-making over time; and communicating with patients and families, many of whom lack understanding of the patient’s illness or medical and behavioral treatment goals.
Having early “upstream discussions with competent patients” about goals and priorities and including caregivers in conversations helped to inform later decisions, the clinicians said.
“Most importantly, clinicians identified that regardless of conversation timing, it is useful to have a common communication framework and specific language to deepen patients’ and families’ understanding, elicit goals and values, and support goal-concordant medical decisions,” the study researchers said. “Using an intentional, structured approach and effective language is considered best practice, and evidence suggests that these skills can be taught and learned.”
This study was limited by including 2 clinics that provide only ALS and dementia care at 1 academic site, while many seriously ill neurology patients receive care in private practice or community-based clinics. There may have also been homogeneity in clinical practice styles.
According to the study authors, developing an “equally systematized approach” to documentation after conversations also led to more efficient team communication and care coordination. They concluded that there is an overall need for a “systematic, structured approach to communication that can be applied early in the disease trajectory and considered when developing integrated neuro-palliative care programs.”
Disclosure: One study author declared affiliations with the pharmaceutical industry. Please see the original reference for a full list of authors’ disclosures.
Zehm A, Hazeltine AM, Greer JA, et al. Neurology clinicians’ views on palliative care communication: “How do you frame this?” Neurol Clin Prac. 2020;10(6);527-534. doi:10.1212/CPJ.0000000000000794