Vaughan Christina L, Kluger Benzi M
Department of Neurology, University of Colorado Anschutz Medical Campus, 12631 E 17th Avenue, Mail Stop B-185, Aurora, CO, 80045, USA.
Department of Neurology, University of Colorado Denver, 12631 E 17th Avenue, Mail Stop B-185, Aurora, CO, 80045, USA.
Curr Treat Options Neurol. 2018 Feb 21;20(1):2. doi: 10.1007/s11940-018-0487-4.
While care for patients with movement disorders has traditionally focused on motor symptoms, there is increasing evidence that optimal care for these disorders is more complex both in terms of the spectrum of symptoms experienced by patients (e.g., pain, depression) and the multidimensional needs of patients and their families. Palliative care is an approach to the care of patients and families affected by serious illnesses that seeks to relieve suffering by addressing complex medical symptoms, psychosocial issues, spiritual well-being, and goals of care. While traditionally associated with cancer and hospice, more recent work in palliative care has focused on integrating a palliative care approach from the time of diagnosis for patients with chronic illnesses, including movement disorders.
Studies of patients with movement disorders and their family caregivers suggest that these patients have significant unmet needs under current models of care, including underrecognition and treatment of non-motor symptoms, inadequate psychosocial support, and suboptimal end-of-life care. We describe how a palliative care approach can empower clinicians, patients, and families to reduce common sources of suffering and optimize quality of life. This field recognizes the importance of primary palliative care (palliative skills useful for any clinician caring for persons caring for serious illness) as a foundation of the palliative care approach and complementary to specialist palliative care. In this article, we will focus on primary palliative care skills for movement disorder specialists including providing a diagnosis and prognosis with compassion, discussing goals of care, complex symptom management, caregiver support, spiritual and emotional well-being, and referral to hospice and specialist palliative care. A palliative care approach complements other efforts in movement disorder care. Research is needed to evaluate and develop therapeutic interventions and models of care applying a palliative care approach.
虽然传统上对运动障碍患者的护理主要集中在运动症状上,但越来越多的证据表明,对这些疾病的最佳护理在患者经历的症状范围(如疼痛、抑郁)以及患者及其家庭的多维度需求方面更为复杂。姑息治疗是一种针对受严重疾病影响的患者及其家庭的护理方法,旨在通过解决复杂的医学症状、心理社会问题、精神健康和护理目标来缓解痛苦。虽然传统上与癌症和临终关怀相关,但最近姑息治疗的工作重点是从慢性病患者(包括运动障碍患者)诊断时起就整合姑息治疗方法。
对运动障碍患者及其家庭照顾者的研究表明,在当前的护理模式下,这些患者有大量未得到满足的需求,包括对非运动症状的认识不足和治疗不当、心理社会支持不足以及临终护理不理想。我们描述了姑息治疗方法如何使临床医生、患者和家庭有能力减少常见的痛苦来源并优化生活质量。该领域认识到初级姑息治疗(对任何照顾严重疾病患者的临床医生有用的姑息治疗技能)作为姑息治疗方法基础的重要性,并且是专科姑息治疗的补充。在本文中,我们将重点关注运动障碍专科医生的初级姑息治疗技能,包括富有同情心地提供诊断和预后、讨论护理目标、复杂症状管理、照顾者支持、精神和情感健康以及转介至临终关怀和专科姑息治疗。姑息治疗方法是运动障碍护理中其他努力的补充。需要开展研究来评估和开发应用姑息治疗方法的治疗干预措施和护理模式。