Palliative care is often the best option for patients with progressive neurodegenerative diseases. However, neurologists generally receive little training in palliative care. A systematic approach to communication that can be used early in the development of progressive neurodegenerative diseases in the development of palliative care programs is crucial, according to a qualitative study published in Neurology: Clinical Practice .
The study researchers sought to understand the communication challenges neurologists face while addressing the needs of patients and caregivers.
They conducted 3 semi-structured focus group interviews with 22 clinicians: the first focus group comprised 9 providers of clinics for memory disorders, the second 7 providers of amyotrophic lateral sclerosis (ALS) and the third group 6 nurses from both clinics. The participants had a median of 7 years in the practice and 18% of them had previously completed palliative care training.
Using a thematic analysis approach and analyzing data with the constant comparison method, the team coded the transcriptions of the interviews line by line to identify organizational issues and selected reflective quotes.
They identified 5 topics: Conversations are triggered by acute events and practical needs; Many conversations take place, but are rarely documented. Cognitive impairment leads to increased decision-making by the primary caregiver, and conflict can lead to ethical dilemmas. There are several communication challenges. and it can be difficult to distinguish the role of specialty palliative care.
Personal, interdisciplinary team communication is more common than written documentation. Since discussions typically involve caregivers, early identification of the primary caregiver is a clinical priority.
Neurology clinicians also highlighted three communication challenges: Where to start because patients and families are often overwhelmed when faced with acute medical problems? how to help patients and surrogates make decisions over time; and communicating with patients and families, many of whom have no understanding of the patient’s disease or medical and behavioral treatment goals.
Early “up-front discussions with competent patients” about goals and priorities and involving caregivers in discussions helped make later decisions, the clinicians said.
“Most importantly, the clinicians found that regardless of the timing of the conversation, it is useful to have a common communication framework and specific language to deepen understanding of patients and families, determine goals and values, and support goal-oriented medical decisions.” the study researchers said. “Using a deliberate, structured approach and effective language is considered a best practice and there is evidence that these skills can be taught and learned.”
This study was limited by the inclusion of 2 clinics that only offer ALS and dementia care in one academic location, while many critically ill neurology patients are cared for in private practices or clinics in the community. There may also have been homogeneity in clinical practice.
According to the authors of the study, the development of an “equally systematic approach” for documentation after discussions also led to more efficient team communication and care coordination. They concluded that overall, a “systematic, structured approach to communication is required that can be applied early in the course of the disease and taken into account in the development of integrated neuropalliative care programs”.
Disclosure: One study author declared his affiliation with the pharmaceutical industry. For a full list of the authors’ information, see the original reference.
Zehm A., Hazeltine AM, Greer JA, et al. Neurologists’ views on palliative communication: “How do you do it?” Neurol Clin Prac. 2020; 10 (6); 527-534. doi: 10.1212 / CPJ.0000000000000794