Palyatif Bakım Gerektiren Nörolojik Hastalıklarda, Beslenme, Semptom Yönetimi, Psikososyal Sorunlar, Spiritüel Yaklaşım ve Hemşirenin Rolü
Özet
Nörolojik hastalıklar, motor fonksiyon, kişilik ve biliş gibi alanlarda kayıplara yol açarak fiziksel, duygusal ve ruhsal acıya neden olur. Palyatif bakım, bu hastaların sadece fiziksel semptomlarını değil, aynı zamanda psikososyal ve manevi ihtiyaçlarını da ele alır. ALS, Parkinson hastalığı, multipl skleroz (MS), Huntington hastalığı, inme, demans ve beyin tümörleri gibi nörolojik hastalıklarda erken dönemde palyatif bakım uygulanması, semptom yönetimini iyileştirir ve yaşam kalitesini artırır. Nöropalyatif bakım, semptom kontrolü ve destek sistemlerini güçlendirerek hastaların konforunu artırmayı hedefler. Multidisipliner iş birliği ve sağlık politikalarının geliştirilmesi, nörolojik hastalıklarla yaşayan bireylerin bakım süreçlerini daha etkin hale getirebilir. Ancak, mevcut protokoller ve sağlık profesyonellerinin eğitim ihtiyaçları, sürecin etkinliğini sınırlamaktadır. Bu nedenle, nöropalyatif bakımın erken entegrasyonu teşvik edilmelidir.
Neurological diseases lead to losses in areas such as motor function, personality, and cognition, causing physical, emotional, and psychological pain. Palliative care addresses not only the physical symptoms of these patients but also their psychosocial and spiritual needs. Early implementation of palliative care in neurological diseases such as ALS, Parkinson's disease, multiple sclerosis (MS), Huntington's disease, stroke, dementia, and brain tumors improves symptom management and enhances quality of life. Neuro-palliative care aims to increase patient comfort by controlling symptoms and strengthening support systems. Multidisciplinary collaboration and the development of healthcare policies can make the care processes of individuals living with neurological diseases more effective. However, existing protocols and the educational needs of healthcare professionals limit the effectiveness of the process. Therefore, early integration of neuro-palliative care should be encouraged.
Referanslar
Dawson B, McConvey K, Gofton TE. When to initiate palliative care in neurology. Handb Clin Neurol. 2022;190:105-125. doi:10.1016/B978-0-323-85029-2.00011-7.
Mercadante S, Al-Husinat L. Palliative care in amyotrophic lateral sclerosis. J Pain Symptom Manage. 2023;66(4):485-499. doi:10.1016/j.jpainsymman.2023.06.029.
Karam CY, Paganoni S, Joyce N, et al. Palliative care issues in amyotrophic lateral sclerosis: an evidenced-based review. Am J Hosp Palliat Care. 2016;33(1):84-92. doi:10.1177/1049909114548719.
Sethi A, Everett E, Mehta A, et al. The role of specialty palliative care for amyotrophic lateral sclerosis. Am J Hosp Palliat Care. 2022;39(7):865-873. doi:10.1177/10499091211049386.
Soriani MH, Desnuelle C. Care management in amyotrophic lateral sclerosis. Rev Neurol (Paris). 2017;173(5):288-299. doi:10.1016/j.neurol.2017.03.031.
Shoesmith C. Palliative care principles in ALS. Handb Clin Neurol. 2023;191:139-155. doi:10.1016/B978-0-12-824535-4.00007-0.
Brizzi K, Paganoni S, Zehm A, et al. Integration of a palliative care specialist in an amyotrophic lateral sclerosis clinic: observations from one center. Muscle Nerve. 2019;60(2):137-140. doi:10.1002/mus.26607.
Genuis SK, Luth W, Campbell S, et al. Communication about end of life for patients living with amyotrophic lateral sclerosis: a scoping review of the empirical evidence. Front Neurol. 2021;12:683197. doi:10.3389/fneur.2021.683197.
Butna K, Pyszora A, Adamczyk A, et al. Practical aspects of nursing care provided to patients diagnosed with amyotrophic lateral sclerosis receiving home mechanical ventilation. Palliat Med Pract. 2021;15(1):42-52. doi:10.5603/PMPI.2021.0005.
Everett EA, Pedowitz E, Maiser S, et al. Top ten tips palliative care clinicians should know about amyotrophic lateral sclerosis. J Palliat Med. 2020;23(6):842-847. doi:10.1089/jpm.2020.0046.
Mehta AK, Jackson NJ, Wiedau-Pazos M. Palliative care consults in an inpatient setting for patients with amyotrophic lateral sclerosis. Am J Hosp Palliat Care. 2021;38(9):1091-1098. doi:10.1177/1049909120969959.
Senderovich H, Jimenez Lopez B. Integration of palliative care in Parkinson’s disease management. Curr Med Res Opin. 2021;37(10):1745-1759. doi:10.1080/03007995.2021.1954895.
Richfield EW, Johnson MJ. Palliative care in Parkinson’s disease: review of needs assessment tools. Ann Palliat Med. 2020;9(1):6-15. doi:10.21037/apm.2019.09.18.
Oliver D, Veronese S. Specialist palliative care for Parkinson’s disease. Ann Palliat Med. 2020;9(1):52-62. doi:10.21037/apm.2019.12.01.
Bock M, Katz M, Sillau S, et al. What's in the sauce? The specific benefits of palliative care for Parkinson's disease. J Pain Symptom Manage. 2022;63(6):1031-1040. doi:10.1016/j.jpainsymman.2022.01.017.
Ben-Zacharia AB. Therapeutics for multiple sclerosis symptoms. Mt Sinai J Med. 2011;78(2):176-191. doi:10.1002/msj.20245.
Cimino V, Chisari CG, Toscano S, et al. Palliative care in multiple sclerosis. Handb Clin Neurol. 2023;191:129-138. doi:10.1016/B978-0-12-824535-4.00009-4.
Dadsetan F, Shahrbabaki PM, Mirzai M, et al. Palliative care needs of patients with multiple sclerosis in southeast Iran. BMC Palliat Care. 2021;20(1):169. doi:10.1186/s12904-021-00867-3.
Wilder CA. Palliative care for patients with multiple sclerosis: recommendations emerging from a case study. J Hosp Palliat Nurs. 2023;25(1):12-17. doi:10.1097/NJH.0000000000000912.
Ahac F, Alanazi SBA, Almutery FSN, et al. Palliative care-main role of nursing: an updated review article for palliative care in brain disorders with focus on biochemical brain markers. Egypt J Chem. 2024;67(13):1261-1277. doi:10.21608/ejchem.2024.335051.10772.
Vanopdenbosch LJ, Oliver DJ. Multiple sclerosis. In: Neuropalliative Care: A Guide to Improving the Lives of Patients and Families Affected by Neurologic Disease. Oxford University Press; 2018.
Boersema-Wijma DJ, van Duijn E, Heemskerk AW, et al. Palliative care in advanced Huntington's disease: a scoping review. BMC Palliat Care. 2023;22(1):54. doi:10.1186/s12904-023-01171-y.
Dawson S, Kristjanson LJ, Toye CM, et al. Living with Huntington's disease: need for supportive care. Nurs Health Sci. 2004;6(2):123-130. doi:10.1111/j.1442-2018.2004.00183.x.
Shah R, Lee SC, Strasser RB, et al. An Australian Neuro-Palliative perspective on Huntington's disease: a case report. BMC Palliat Care. 2021;20(1):53. doi:10.1186/s12904-021-00744-z.
Tarolli CG, Chesire AM, Biglan KM. Palliative care in Huntington disease: personal reflections and a review of the literature. Tremor Other Hyperkinet Mov (N Y). 2017;7:454. doi:10.7916/D88057C7.
Heffernan B, Forbes E, Seeberger L, et al. Perceptions of palliative care in Huntington's disease: a qualitative study. Parkinsonism Relat Disord. 2024;120:106007. doi:10.1016/j.parkreldis.2024.106007.
Greenway MRF, Robinson MT. Palliative care approaches to acute stroke in the hospital setting. Handb Clin Neurol. 2023;191:13-27. doi:10.1016/B978-0-12-824535-4.00010-0.
Lugassy M, Samaan M. What is the role of palliative care in stroke? In: Evidence-Based Practice of Palliative Medicine. 2nd ed. 2023.
Creutzfeldt CJ, Bu J, Comer A, et al. Palliative and end-of-life care in stroke: a scientific statement from the American Heart Association. Stroke. Published online 2024. doi:10.1161/STR.0000000000000479.
Molidor S, Overbaugh KJ, James D, et al. Palliative care and stroke: an integrative review of the literature. J Hosp Palliat Nurs. 2018;20(4):358-367. doi:10.1097/NJH.0000000000000450.
Poje JM. Palliative care after stroke. Medicus. 2022. Available at: https://hrcak.srce.hr/275926.
Perna R, Harik L. The role of rehabilitation psychology in stroke care described through case examples. NeuroRehabilitation. 2020;46(2):195-204. doi:10.3233/NRE-192970.
Braun LT, Grady KL, Kutner JS, et al. Palliative care and cardiovascular disease and stroke: a policy statement from the American Heart Association/American Stroke Association. Circulation. 2016;134(11):e198-e225.
Miranda R, Bunn F, Lynch J, et al. Palliative care for people with dementia living at home: a systematic review of interventions. Palliat Med. 2019;33(7):726-742. doi:10.1177/0269216319847092.
Casey DA, Northcott C, Stowell K, et al. Dementia and palliative care. Clin Geriatr. 2012;20(1):36-41. Available at: https://www.consultant360.com/articles/dementia-and-palliative-care.
Rexach L. Palliative care in dementia. Eur Geriatr Med. 2012;3(2):131-140. doi:10.1016/j.eurger.2012.01.015.
Scott C. Palliative care and dementia. Home Healthc Nurse. 2014;32(8):466-469. doi:10.1097/NHH.0000000000000123.
Sampson EL. Palliative care for people with dementia. Br Med Bull. 2010;96:159-174. doi:10.1093/bmb/ldq024.
Van den Block L. The need for integrating palliative care in ageing and dementia policies. Eur J Public Health. 2014;24(5):705-706. doi:10.1093/eurpub/cku084.
Eisenmann Y, Golla H, Schmidt H, et al. Palliative care in advanced dementia. Front Psychiatry. 2020;11:699. doi:10.3389/fpsyt.2020.00699.
Walbert T, Stec NE. Palliative care in brain tumors. Handb Clin Neurol. 2023;191:69-80. doi:10.1016/B978-0-12-824535-4.00011-2.
Orsolya H, Peter K. A. Korszerű szupportív ellátás és az integrált korai palliatív gondozás jelentősége és fontosabb területei agydaganatos betegek kezelése során. Magyar Onkol. 2024;68:77-85. Available at: https://huon.hu/2024/68/1/0077/0077a.pdf.
Rhee JY, Strander S, Podgurski A, et al. Palliative care in neuro-oncology: an update. Curr Neurol Neurosci Rep. 2023;23(11):645-656. doi:10.1007/s11910-023-01301-2.
Xiao ZY, Sun YX, Xu DR, et al. End-of-life inpatient palliative care for glioblastoma multiforme: lessons learned from one case. Chin Med Sci J. 2024;39(4):297-302. doi:10.24920/004394.
Pace A, Villani V. Palliative and supportive care of patients with intracranial glioma. Prog Neurol Surg. 2018;31:229-237. doi:10.1159/000467383.
Thomas AA, Carver A. Essential competencies in palliative medicine for neuro-oncologists. Neurooncol Pract. 2015;2(3):151-157. doi:10.1093/nop/npv011.
Walbert T. Palliative care, end-of-life care, and advance care planning in neuro-oncology. Continuum (Minneap Minn). 2017;23(6):1709-1726. doi:10.1212/CON.0000000000000538.
Orlova NV, Soloviova EY, Bonkalo TI, et al. A comprehensive approach to palliative care in neurological pathology. Russ Neurol J. 2023;28(1):67-72. doi:10.30629/2658-7947-2023-28-1-67-72.
Piñeiro Corrales G, Vázquez López C, Álvarez Payero M. Efecto del tratamiento farmacológico en el estado nutricional del paciente neurológico [Effect of pharmacologic treatment of the nutritional status of neurologic patients]. Nutr Hosp. 2014;29(2):47-56. Available at: https://openurl.ebsco.com/EPDB%3Agcd%3A2%3A14073362/detailv2?sid=ebsco%3Aplink%3Ascholar&id=ebsco%3Agcd%3A96444137&crl=c&link_origin=scholar.google.com.
Shaw C, Eldridge L. Nutritional considerations for the palliative care patient. Int J Palliat Nurs. 2015;21(1):7-15. doi:10.12968/ijpn.2015.21.1.7.
Güngör M. Nörolojik hastalıklarda beslenme. In: Çocuk Kronik Hastalıklarında Beslenme. 2021:5-112.
Castelli M, Taboga C. Nutritional features of the neurology patient: assessment and management. Int Nurs Perspect. 2008;8(1):27. Available at: https://scholar.google.com/scholar?hl=tr&as_sdt=0%2C5&q=Castelli%2C+M.+ve+Taboga%2C+C.+%282008%29.+Nutritional+features+of+the+neurology+patient%3A+assessment+and+management.+%C4%B0nternational+Nursing+Perspectives%2C+8%281%29%2C+27.&btnG=.
Cheung KC, Lau VWK, Un KC, et al. Advance care planning for patients with advanced neurology diseases. Ann Palliat Med. 2018;7(3):34954-34354. doi:10.21037/apm.2017.09.10.
Tamási P. Neurological diseases and nutrition–what can we do?. Orv Hetil. 2014;155(51):2041-2047. doi:10.1556/OH.2014.30052.
Bokuda K, Hayashi K, Shimizu T. Current status and future vision of nutrition support team at the neurological hospital. Rinsho Shinkeigaku. 2020;60(4):260-263. doi:10.5692/clinicalneurol.cn-001402.
Yuasa T. Some critical topics for further discussion on palliative medicine in amyotrophic lateral sclerosis (ALS). Iryo. 2005;59(7):347. doi:10.24920/004394.
Hashmi MF, Modi P, Basit H, et al. Dyspnea. In: StatPearls. StatPearls Publishing; 2023. Available at: https://pubmed.ncbi.nlm.nih.gov/29763140/.
Akın Eroğlu S, Temiz G, Eroğlu N, eds. Palyatif Bakım Hemşireliği. Ankara: Nobel Akademik Yayıncılık; 2024.
Brown E, Henderson A, McDonagh A. Exploring the causes, assessment and management of constipation in palliative care. Int J Palliat Nurs. 2009;15(2):58-64. doi:10.12968/ijpn.2009.15.2.39801.
Vaughan McIlfatrick S, Muldrew DHL, Beck E, et al. Examining constipation assessment and management of patients with advanced cancer receiving specialist palliative care: a multi-site retrospective case note review of clinical practice. BMC Palliat Care. 2019;18(1):57. doi:10.1186/s12904-019-0436-3.
Vaughan CP, Fitzgerald CM, Markland AD. Rehabilitasyon bakım ortamlarında yaşlı yetişkinlerde idrar kaçırma yönetimi. Curr Phys Med Rehabil Rep. 2019;7:159-169. Available at: https://link.springer.com/article/10.1007/s40141-019-00221-y.
Haslam J, Gonzales G, Haslam C. General measures and non-pharmacological approaches. In: Pelvic Organ Dysfunction in Neurological Disease: Clinical Management and Rehabilitation. New York: Cambridge University Press; 2010:79-89. Available at: https://scholar.google.com/scholar?hl=tr&as_sdt=0%2C5&q=General+measures+and+non-pharmacological+approaches.
Akça N, Yaldıran D, Sakar DD. Palyatif bakım hastalarının tamamlayıcı ve bütünleşik terapileri ağrı yönetiminde kullanım durumları. Artuklu Int J Health Sci. 2023;3(2):137-142. doi:10.58252/artukluder.1262276.
Keskin S, Ergül Erkeç Ö, eds. Sağlık Bilimlerinde Araştırma ve Derlemeler. İksad Yayınevi; 2022. Available at: https://iksadyayinevi.com/wp-content/uploads/2022/12/Sağlık-Bilimlerinde-Araştırma-ve-Derlemeler.pdf.
Sullivan DR, Iyer AS, Enguidanos S, et al. Palliative care early in the care continuum among patients with serious respiratory illness: an official ATS/AAHPM/HPNA/SWHPN policy statement. Am J Respir Crit Care Med. 2022;206(6):44-69. doi:10.1164/rccm.202207-1262ST.
Gandy M, Heriseanu AI, Balakumar T, et al. The wellbeing neuro course: a randomised controlled trial of an internet-delivered transdiagnostic psychological intervention for adults with neurological disorders. Psychol Med. 2023;53(14):6817-6827. doi:10.1017/S0033291723000338.
Kangalgil Balta G, Bekiroğlu S. Palyatif bakım merkezleri kapsamında verilen psikososyal destek hizmetleri: sosyal hizmet uzmanları ve psikologların gözünden nitel bir değerlendirme. Tıbbi Sosyal Hizmet Dergisi. 2021;(17):130-154. doi:10.46218/tshd.908861.
Del Rincon-Fernandez C. Necesidades psicologicas y espirituales del niño con encefalopatia grave y su familia [Psychological and spiritual needs of children with severe encephalopathy and their families]. Rev Neurol. 2018;66(Suppl 2):57-60. Available at: https://pubmed.ncbi.nlm.nih.gov/29876915/.
Karakaya C, Işıkhan V. Palyatif bakım hastalarına bakım veren aile üyelerinde yaşam kalitesinin değerlendirilmesi. Toplum ve Sosyal Hizmet. 2020;31(4):1437-1458. doi:10.33417/tsh.737324.
Narayanasamy A. Palliative care and spirituality. Indian J Palliat Care. 2007;13(2). Available at: https://search.ebscohost.com/login.aspx?direct=true&profile=ehost&scope=site&authtype=crawler&jrnl=09731075.
Atamer B. Bireylerin spiritüel iyilik durumu, bakım yükü ve yaşam kalitesi arasındaki ilişkinin incelenmesi. [Master’s thesis]. Gazi Üniversitesi, Ankara; 2021. Available at: https://tez.yok.gov.tr/UlusalTezMerkezi/tezSorguSonucYeni.jsp.
Williams EM, Ge TY. Nursing perspective and considerations. In: Essentials of Palliative Care. New York: Springer New York; 2012:163-175. doi:10.1007/978-1-4614-5164-8_9.
Jox RJ, Creutzfeldt CJ, Kluger B, et al. Neuropalliative Care: A Guide to Improving the Lives of Patients and Families Affected by Neurologic Disease. 2018.
Borasio GD. The role of palliative care in patients with neurological diseases. Nat Rev Neurol. 2013;9(5):292-295. doi:10.1038/nrneurol.2013.49.
Oliver D. Palliative care for people with neurological disease. Medycyna Paliatywna w Praktyce. 2017. Available at:
https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/54718/41805.
Oliver DJ. Palliative care in motor neurone disease: where are we now? Palliat Care. 2019;12:1178224218813914. doi:10.1177/1178224218813914.
Wiblin L. An introduction to neuropalliative care: a growing need. Clin Med (Lond). 2024;24(2):100038. doi:10.1016/j.clinme.2024.100038.
Kluger BM, Persenaire MJ, Holden SK, et al. Implementation issues relevant to outpatient neurology palliative care. Ann Palliat Med. 2018;7(3):339-348. doi:10.21037/apm.2017.10.06.
Gursahani R. Palliative care and the Indian neurologist. Ann Indian Acad Neurol. 2016;19(1):S40-S44. doi:10.4103/0972-2327.192885.
Silverman EJ, Arnold RM, Bhatnagar M. Palliative care in neurological disease. In: Neurobiology of Brain Disorders: Biological Basis of Neurological and Psychiatric Disorders. 2nd ed. 2022. doi:10.1016/B978-0-323-85654-6.00054-X.
