Wan Miranda M, Cristall Nora D, Cooke Lara J
Department of Clinical Neurosciences, Cumming School of Medicine, Calgary, Canada.
Neurol Clin Pract. 2024 Oct;14(5):e200322. doi: 10.1212/CPJ.0000000000200322. Epub 2024 Aug 15.
Despite significant advances in the treatment of neurologic disorders, many conditions require complex care planning and advanced care planning. Neurologists are in a unique position because they are integral in providing patient centered care, understanding neurologic disease and illness trajectory, and how disease can affect patients' sense of self and values. Currently, little is known about neurologists' perceptions and challenges in care planning and palliative care for their patients.
Neurologists from one Canadian academic institution participated in a 30-minute semistructured interview from November 2022 to April 2023. Interviews were conducted until saturation was reached and confirmed. Interviews occurred online through a secure platform or in-person and were recorded. Data were analyzed using a constant comparative method using constructivist grounded theory. Member checking was conducted post interview.
Ten neurologists participated across a broad spectrum of neurology experience and subspecialties. We developed a detailed theory of understanding neurologists' attitudes and perceptions of palliative care. When neurologists delay or fail to initiate care planning discussions or palliative care, it results from a complex interplay between patient, physician, and resource accessibility factors. Certain contextual factors, such as a first visit or follow-up, inpatient vs outpatient setting, clinic culture, and the type of clinic practice, are factors that can influence these conversations. As a result, physicians may fail to use available resources, or they may involve other care providers or refer to subspecialty neurologic clinics. However, this delay can still lead to patient and provider harm. Opportunities to improve care exist with continuing education opportunities for trainees and staff, collaboration with palliative care specialists, and health systems support, such as increasing public awareness to address misconceptions about palliative care and resource availability.
Our findings identify that failure or delay to initiate care planning and palliative care by neurologists results from a complex interplay between local culture, experience, context, practice type, and patient factors. Opportunities to improve care include increasing educational opportunities, building integrated and collaborative practices, and dedicated health systems support.
尽管神经系统疾病的治疗取得了重大进展，但许多病症仍需要复杂的护理计划和高级护理计划。神经科医生处于独特的地位，因为他们在提供以患者为中心的护理、理解神经疾病和疾病轨迹以及疾病如何影响患者的自我认知和价值观方面不可或缺。目前，对于神经科医生在为患者进行护理计划和姑息治疗方面的看法和挑战知之甚少。
来自加拿大一所学术机构的神经科医生在2022年11月至2023年4月期间参加了一次30分钟的半结构化访谈。访谈持续进行直至达到并确认饱和状态。访谈通过安全平台在线进行或面对面进行，并进行了录音。使用建构主义扎根理论的持续比较方法对数据进行分析。访谈后进行了成员核对。
十位神经科医生参与了访谈，他们具有广泛的神经学经验和亚专业。我们构建了一个详细的理论，以理解神经科医生对姑息治疗的态度和看法。当神经科医生延迟或未能启动护理计划讨论或姑息治疗时，这是患者、医生和资源可及性因素之间复杂相互作用的结果。某些背景因素，如初次就诊或随访、住院与门诊环境、诊所文化以及诊所实践类型，都是可能影响这些对话的因素。因此，医生可能无法利用可用资源，或者他们可能会让其他护理提供者参与进来，或者转介到神经科亚专业诊所。然而，这种延迟仍可能对患者和提供者造成伤害。通过为实习生和工作人员提供继续教育机会、与姑息治疗专家合作以及卫生系统支持（如提高公众意识以消除对姑息治疗和资源可用性的误解），存在改善护理的机会。
我们的研究结果表明，神经科医生未能启动或延迟启动护理计划和姑息治疗是当地文化、经验、背景、实践类型和患者因素之间复杂相互作用的结果。改善护理的机会包括增加教育机会、建立综合协作的实践以及专门的卫生系统支持。
