Keywords
Nervous system diseases
Terminal care
How to Cite
Copyright © | All rights reserved.
The journal holds the exclusive copyright for the publication of this article under the terms of Brazilian law 9610/98.
Partial reproduction
The use of parts of the texts, figures and questionnaire of the article is free, being mandatory the citation of the authors and journal.
Total reproduction
It is expressly prohibited and must be authorized by the journal.
Abstract
Objective: To explore the practice of palliative care in neurological patients, focusing on the effectiveness of these interventions in improving quality of life and reducing suffering in the context of neurodegenerative diseases. Methods: A bibliographic search was conducted using the PubMed and Regional Portal of the Ministry of Health Virtual Library databases, employing the descriptors "Palliative Care", "Patient", "Nervous System Diseases", and "Terminal Care". We selected 26 articles that addressed various aspects of palliative care in neurological patients. Results: The analysis of the articles revealed a variety of outcomes, emphasizing the efficacy of palliative care in enhancing comfort and symptom management, particularly in patients with brain tumors and dementia. However, significant challenges were identified, including variations in the quality and accessibility of palliative care services, as well as cultural and educational barriers that affect their effective implementation. Final considerations: This review underscores the critical importance of palliative care in neurological patients, highlighting the need for targeted strategies to enhance healthcare professionals' education, promote early discussions on care planning, and strengthen support for family caregivers. Research investments are essential to adapt and validate approaches that maximize the benefits of palliative care.
References
ABE A, et al. Patient participation and associated factors in the discussions on do-not-attempt-resuscitation and end-of-life disclosure: a retrospective chart review study. BMC Palliative Care. 2021; 20(1): 18-26.
AOKI T, et al. Current Status of Palliative and Terminal Care for Patients with Primary Malignant Brain Tumors in Japan. Neurologia medico-chirurgica. 2020; 60(12): 34-45.
BÉREAU M, et al. Terminal Care in Parkinson’s Disease: Real-Life Use of Continuous Subcutaneous Apomorphine Infusion to Improve Patient Comfort. Journal of Parkinson’s disease/Journal of Parkinson’s disease (Online). 2024; 14(1): 209–219.
BLUCK MB. Providers’ Perspectives on Palliative Care in a Neuromedicine-Intensive Care Unit: End-of-Life Expertise and Barriers to Referral. J Palliat Med. 2019; 22(4): 364–369.
EARP M, et al. Hospital-based acute care in the last 30 days of life among patients with chronic disease that received early, late or no specialist palliative care: a retrospective cohort study of eight chronic disease groups. BMJ Open. 2021; 11(3): 044196.
FLEMMING K, et al. The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review. Palliative Medicine. 2020; 34(6): 708–730.
GABBARD J, et al. Prognostic Awareness, Disease and Palliative Understanding Among Caregivers of Patients With Dementia. American Journal of Hospice and Palliative Medicine®. 2019; 37(9): 683–691.
GOTANDA H, et al. Trends in advance care planning and end‐of‐life care among persons living with dementia requiring surrogate decision‐making. Journal of the American Geriatrics Society. 2022; 70(5): 1394–1404.
HOCHWALD IH, et al. Ethical challenges in end-stage dementia: Perspectives of professionals and family care-givers. Nursing Ethics. 2021; 28(7): 1228–1243.
ISENBERG-GRZEDA E, et al. Legal assistance in dying for people with brain tumors. Annals of Palliative Medicine. 2021; 10(1): 893–898.
KOEKKOEK JAF, et al. Palliative care and end-of-life care in adults with malignant brain tumors. Neuro-Oncology. 2022; 25(3): 216-222.
LACKRAJ D, et al. Implementation of Specialist Palliative Care and Outcomes for Hospitalized Patients with Dementia. Journal of the American Geriatrics Society. 2021; 69(5): 1199–1207.
LINDSKOG M. Acute healthcare utilization in end-of-life among Swedish brain tumor patients – a population based register study. BMC Palliative Care. 2022; 21(1): 133-146.
LUTH EA, et al. Associations between dementia diagnosis and end-of-life care utilization. Journal of the American Geriatrics Society. 2022; 70(10): 2871–2883.
MC VEIGH C, et al. Palliative care for patients with motor neurone disease and their bereaved carers: a qualitative study. BMC Palliative Care. 2019; 18(1): 39-43.
MIYASHITA M, et al. Symptom burden, service use and care dissatisfaction among older adults with cancer, cardiovascular disease, respiratory disease, dementia and neurological disease during the last 3 months before death: A pooled analysis of mortality follow-back surveys. Palliat Med. 2024; 38(5): 582–592.
NÅHLS NS, et al. Effect of palliative care decisions making on hospital service use at end-of-life in patients with malignant brain tumors: a retrospective study. BMC Palliative Care. 2023; 22(1): 23-39.
OHNSORGE K, et al. Wishes to die at the end of life and subjective experience of four different typical dying trajectories. A qualitative interview study. PLoS One. 2019; 14(1): 0210784–4.
OLVERA CE. Community-based neuropalliative care. Handb Clin Neurol. 2023, 191(3): 49–66.
OZANNE A, et al. Symptom relief during last week of life in neurological diseases. Brain and Behavior. 2019; 9(8): 01348.
PUENTE-FERNÁNDEZ D, et al. Palliative Care Symptoms, Outcomes, and Interventions for Chronic Advanced Patients in Spanish Nursing Homes with and without Dementia. International Journal of Environmental Research and Public Health. 2020; 17(5): 1465–1475.
RAPP M, et al. Would they do it again? Final treatment decisions in malignant brain tumour patients-a caregiver’s perspective. Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer. 2022; 30(5): 3985–3993.
TAY RY, et al. Comfort and Satisfaction With Care of Home-Dwelling Dementia Patients at the End of Life. Journal of Pain and Symptom Management. 2020; 59(5): 1019-1032.
TAYLOR BL, et al. Inpatients with neurologic disease referred for palliative care consultation. Neurology. 2019; 92(17): 1975–81.
WALTER HAW, et al. The Role of Palliative Care in Chronic Progressive Neurological Diseases—A Survey Amongst Neurologists in the Netherlands. Frontiers in Neurology. 2019; 14(9): 7-15.
WANG Y, et al. Advance directives and end-of-life care: knowledge and preferences of patients with brain Tumours from Anhui, China. BMC Cancer. 2021; 21(1): 8-13.