Neuropal­liative and rehabilitative care in patients with an advanced stage of progres­sive neurological dis­eases


Authors: R. Bužgová 1;  M. Bar 2,3;  P. Bártová 2,3;  R. Kozáková 1;  P. Ressner 2,3;  L. Sikorová 1;  R. Zeleníková 1
Authors‘ workplace: Ústav ošetřovatelství a porodní asistence, LF OU Ostrava 1;  Neurologická klinika FN Ostrava 2;  Katedra neurologie a psychiatrie, LF OU Ostrava 3
Published in: Cesk Slov Neurol N 2018; 81(1): 17-23
Category: Review Article
doi: https://doi.org/10.14735/amcsnn201717

Overview

Patients with an advanced stage of progressive neurological diseases belong to the group of patients who may be eligible for palliative care. The aim of this review paper is to describe groups of patients eligible for palliative care and to analyze the number of hospitalizations in the last year of their life, their location and age of death. Furthermore, to describe the possibilities of using the concept of neuropalliative and rehabilitative care that is based on connecting the care of a neurology specialist, rehabilitation and palliative care services throughout the illness until the end of the patient’s life. Emphasis is placed on maintaining functional abilities, symptom management, providing comfort, maximizing the quality of life, and reducing the burden of the illness of the patient and his/ her family. An important part of the care is also the discussion of the end-of-life care plan, or transcribing a previously expressed wish. In foreign literature, neuropalliative care is described in patients with Parkinson disease, multiple sclerosis, amyotrophic lateral sclerosis, Huntington disease and atypical parkinsonism. The evaluation scales (GSF PIG, SPICT, NECPAL CCOMS-ICO) were used to identify patients who require any kind of palliative care. The criteria for the patient’s admission to hospice care are also pointed out.

Key words:
quality of life – palliative care – rehabilitation – death

The Editorial Board declares that the manu­script met the ICMJE “uniform requirements” for biomedical papers.

The authors declare they have no potential conflicts of interest concerning drugs, products, or services used in the study.


Sources

1. Radbruch L, Payne S. White Paper on standards and norms for hospice and pal­liative care in Europe: part 1:recom­mendations from the European As­sociation for Pal­liative Care. Eur J Pal­liat Care 2009; 16(6): 278– 289.

2. Pastrana T, Junger S, Ostgathe S et al. A matter of definition –  key elements identified in a discourse analysis of definitions of pal­liative care. Pal­liat Med 2008; 22(3): 222– 232. doi: 10.1177/ 0269216308089803.

3. Seymour J. Co je v názvu? Pojmová analýza klíčových termínů v paliativní péči. In: Payne S, Seymour J, Ingleton CH et al. Paliativní péče: principy a praxe. Brno: Společnost pro odbornou literaturu 2007: 63– 83.

4. Sepúlveda C, Marlin A, Yoshida T et al. Pal­liative Care: The World Health Organization’s Global Perspective. J Pain Symp­tom Manage 2002; 24(2): 91– 96.

5. Boersma I, Miyasaki ME, Kutner J et al. Pal­liative care and neurology: time for a paradigm shift. Neurology 2014; 83(5): 561– 567. doi: 10.1212/ WNL.0000000000000674.

6. Skála B, Sláma O, Vorlíček J. Paliativní péče o pa­cienty v terminálním stádiu nemoci: doporučený dia­gnostický a léčebný postup pro všeobecné praktické lékaře, Praha: Společnost všeobecného lékařství ČLS JEP, Centrum doporučených postupů pro praktické lékaře 2011. Dostupné z URL: https:/ / www.paliativnimedicina.cz/ sites/ www.paliativnimedicina.cz/ files/ users/ simicek/ paliativni-pece-2011pro_pl.pdf.

7. Chahine LM, Malik B, Davis M. Pal­liative care needs of patients with neurologic or neurosurgical conditions. Eur J Neurol 2008; 15(12): 1265– 1272. doi: 10.1111/ j.1468-1331.2008.02319.x.

8. Friebert S, Wil­liams C. NHPCO’s Facts and Figures: Pediatric Pal­liative & Hospice Care in America. Washington: National Hospice and Pal­liative Care Organization 2015. Available from URL: https:/ / www.nhpco.org/ sites/ default/ files/ public/ quality/ Pediatric_Facts-Figures.pdf.

9. Klinger CA, Howell D, Zakus D et al. Bar­riers and facilitators to care for the terminal­ly il­l: a cros­s-country case comparison study of Canada, England, Germany, and the United States. Pal­liat Med 2014; 28(2): 111– 120. doi: 10.1177/ 0269216313493342.

10. Švancara J, Sláma O, Kabelka L et al. Národní datová základna paliativní péče. Praha: Ústav zdravotnických informací ČR 2016. Dostupné z URL: http:/ / www.paliativnidata.cz.

11. Kala M. Neurologické dia­gnózy v diferencované hospicové péči –  dvě kazuistiky. Cesk Slov Neurol N 2013; 76/ 109(6): 756– 758.

12. Borasio GD. The role of pal­liative care in patients with neurological dis­ease. Nat Rev Neurol 2013; 9(5): 292– 295. doi: 10.1038/ nrneurol.2013.49.

13. Meier DE. Pal­liative care in hospitals. J Hospit Med 2006; 1(1): 21– 28. doi: 10.1002/ jhm.3.

14. Sláma O, Kabelka L, Špinková M. Paliativní péče v ČR v roce 2013. Praha a Brno: Perspektiva České společnosti paliativní medicíny ČLS JEP 2013.

15. van Vliet M, Gao W, Di Francesco D et al. How integrated are neurology and pal­liative care services? Results of a multicentre mapp­­ing exercise. BMC Neurol 2016; 16(10): 63. doi: 10.1186/ s12883-016-0583-6.

16. Fitzpatrick R, Peters M, Doll H et al. The needs and experiences of services by individuals with long-term progres­sive neurological conditions and their carers: a benchmark­­ing study. Oxford: University of Oxford 2010.

17. Aarsland D, Larsen JP, Karlsen K et al. Mental symp­toms in Parkinson‘s dis­ease are important contributors to caregiver distres­s. Int J Geriatr Psychiatry 1999; 14(10): 866– 874.

18. Oliver DJ, Borasio GD, Caraceni A et al. A consensus review on the development of pal­liative care for patients with chronic and progres­sive neurological dis­ease. Eur J Neurol 2016; 23(1): 30– 38. doi: 10.1111/ ene.12889.

19. Hus­sain J, Adams D, Campbell C. End-of-life care in neurodegenerative conditions: outcomes of a specialist pal­liative neurology service. Int J Pal­liat Nurs 2013; 19(4): 162– 169. doi: 10.12968/ ijpn.2013.19.4.162.

20. Růžička E. Neurodegenerativní onemocnění mozku. In: Bednařík J et al. Klinická neurologie I. Praha: Triton 2010: 541– 707.

21. Ridzoň P, Mazanec R. Paliativní péče u terminálních stavů chorob motorického neuronu (amyotrofické laterární sklerózy, progresivní bulbární paralýzy a progresivní svalové atrofie). Neurol praxi 2010; 11(1): 23– 26.

22. Havrdová E. Roztroušená skleróza. In: Bednařík Jet al. Klinická neurologie I. Praha: Triton 2010.

23. Hauser SL, Oksenberg JR. The neurobio­logy of multiple sclerosis: genes, inflam­mation, and neurodegeneration. Neuron 2006; 52(1): 61– 76.

24. Lindop F, Brown L, Graziano M et al. Atypical Parkinsonism: Mak­­ing the case for a neuropal­liative rehabilitation approach. Int J Ther Rehab 2014; 21(4): 176– 182.

25. Turner-Stokes L, Sykes N, Silber E et al. From dia­gnosis to death: explor­­ing the interface between neurology, rehabilitation and pal­liative care, in the management of people with long term neurological conditions. Clin Med 2007; 7(2): 129– 236.

26. Sutton L. Addres­s­­ing pal­liative and end-of-life care needs in neurology. Brit J Neurosci Nurs 2008; 4(5): 235– 238. doi: doi.org/ 10.12968/ bjn­n.2008.4.5.29323.

27. McNab E. Music ther­apy in progres­sive neurological dis­ease: A neuropal­liative rehabilitation perspective. Austr J Mus Ther 2010; 21: 59– 76.

28. Galvin M, Madden C, Maquire S et al. Patient journey to a specialist amyotrophic lateral sclerosis multidisciplinary clinic: an exploratory study. BMC Health Serv Res 2015; 15: 1– 8. doi: 10.1186/ s12913-015-1229-x.

29. Dal­lara A, Tolchin D. Emerg­­ing Subspecialties in Neurology: pal­liative care. Neurology 2014; 82(18): 640– 642. doi: 10.1212/ WNL.0000000000000453.

30. Krejčíková H. Dříve vyslovená přání: manuál nejen pro pa­cienty. Praha: Cesta domů 2016.

31. Matějek J, Závadová I. Dříve vyslovená přání: manuál pro lékaře. Praha: Cesta domů 2016.

32. Miyasaki JM, Long J, Mancini D et al. Pal­liative care for advanced Parkinson dis­ease: an interdisciplinary clinic and new scale, the ESAS-PF. Parkinsonism Relat Disord 2012; 18 (Suppl 3): S6– S9. doi: 10.1016/ j.parkreldis.2012.06.013.

33. Has­son F, Kernohan WG, McLaughlin M et al. An exploration into the pal­liative and end-of-life experiences of cares of people with Parkinson dis­ease. Pal­liat Med 2010; 24(7): 731– 736. doi: 10.1177/ 0269216310371414.

34. Higginson IJ, McCrone P, Hart SR et al. Is short-term pal­liative care cost ef­fective in multiple sclerosis. A randomized phase II trial. J Pain Symp­tom Manage 2009; 38(6): 816– 826. doi: 10.1016/ j.painsym­man.2009.07.002.

35. Edmonds P, Hart S, Wei Gao et al. Pal­liative care for people severely af­fected by multiple sclerosis: evaluation of a novel pal­liative care service. Multiple Sclerosis 2010; 16(5): 627– 636. doi: 10.1177/ 1352458510364632.

36. Dufek M. Roztroušená skleróza –  EDSS (Expanded disability status scale), tzv. Kurtzkeho škala. Neurol praxi 2012; 12 (Suppl G): 6– 9.

37. Strupp J, Romtzky V, Paed D et al. Pal­liative care for severely af­fected patients with multiple sclerosis: when and why? Results of a Delphi Survey of health care profes­sionals. J Pall Med 2014; 17(10): 1128– 1136. doi: 10.1089/ jpm.2013.0667.

38. Higginson I, Voltz R, Haf­fenden S et al. EMSP toolkit on code of good practice. 2008. Available from z URL: www.emsp.org/ attachments/ article/ 134/ 1code08.pdf.

39. Andersen PM, Abrahams S, Boraio GD et al. The EFNS task force on dia­gnosis and management of amyotrophic lateral sclerosis. EFNS guidelines on the clinical management of ALS –  revised report of an EFNS task force. Eur J Neurol 2012; 19(3): 360– 375. doi: 10.1111/ j.1468-1331.2011.0351.x.

40. Gómez-Batiste X, Martínez-Munoz M, Blay C et al. Identify­­ing needs and improv­­ing pal­liative care of chronical­ly ill patients: a com­munity-oriented, population-based, public-health approach. Curr Opin Support Pal­liat Care 2012; 6: 371– 378. doi: 10.1097/ SPC.0b012e328356 aaed.

Labels
Paediatric neurology Neurosurgery Neurology

Article was published in

Czech and Slovak Neurology and Neurosurgery

Issue 1

2018 Issue 1

Most read in this issue
Login
Forgotten password

Enter the email address that you registered with. We will send you instructions on how to set a new password.

Login

Don‘t have an account?  Create new account