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Hospice and End of Life Care in Neurologic Disease

  • Farrah N. Daly
  • Mara M. Lugassy
Chapter

Abstract

As people progress through neurologic disease, it is important for their clinicians, including their neurologists, to access appropriate and available support for adjustment to different stages of disease. When people with neurologic disease appear to have a prognosis measured in months rather than years, they are eligible for additional support in the home from hospice organizations. The following chapter discusses the origin of hospice, benefit structure, current eligibility guidelines, and potential roles of the neurologist at the end of life. The discussion centers on the hospice benefit as it is defined by the Medicare system in the United States, with a brief review of how it contrasts with other healthcare systems. Finally, the chapter includes an approach to symptom management at the end of life and to recognizing signs of active dying.

Keywords

Hospice Neurology End of life Symptom management 

References

  1. 1.
    Brooksbank M. Palliative care: where have we come from and where are we going? Pain. 2009;144(3):233–5.PubMedCrossRefGoogle Scholar
  2. 2.
    Maxwell TL, Martinez JM, Knight CF. The hospice and palliative medicine approach to life-limiting illness. In: Storey CP, Levine S, Shega JW, editors. Vol of unipacs: hospice and palliative care training for physicians – a self study guide. 3rd ed. Glenview: American Academy of Hospice and Palliative Medicine; 2008. p. 8–18.Google Scholar
  3. 3.
    National Hospice and Palliative Care Organization [Internet] History of Hospice Care. Hospice: a historical perspective. [Cited 2017 March 13]. Available from: http://www.nhpco.org/history-hospice-care.
  4. 4.
    NHPCO. Facts and figures: hospice care in America. Alexandria: National Hospice and Palliative Care Organization; 2015. Available from: http://www.nhpco.org/hospice-statistics-research-press-room/facts-hospice-and-palliative-care.Google Scholar
  5. 5.
    State Operators Manual Appendix M. Guidance to surveyors. Hosp Rev. 2015;149:418.3. Available from: https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/som107ap_m_hospice.pdf.Google Scholar
  6. 6.
    Bercovitz A, Sengupta S, Jones A, Harris-Kojetin LD. Complementary and alternative therapies in hospice: the national home and hospice care survey: United States, 2007: U.S. Department of Health and Human Services Centers for Disease Control and Prevention National Center for Health Statistics; 2011. Available at: https://www.cdc.gov/nchs/data/nhsr/nhsr033.pdf.
  7. 7.
    Centers for Medicare and Medicaid Services [Internet] Medicare Hospice Data Trends: 1998–2009. Available from: https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/Hospice/Medicare_Hospice_Data.html.
  8. 8.
    Foley K, Carver A. Palliative care in neurology. Neurol Clin. 2001;19(4):789–99.PubMedCrossRefGoogle Scholar
  9. 9.
    OBrien T, Kelly M, Saunders C. Motor neuron disease: a hospice perspective. BMJ. 1992;304:471–3.CrossRefGoogle Scholar
  10. 10.
    Lynn J, Harrell FE, Cohn F, et al. Defining the “terminally ill:” insights from SUPPORT. Duquesne Law Rev. 1996;35:311–36.PubMedGoogle Scholar
  11. 11.
    Stuart B. The NHO Medical Guidelines for Non-Cancer Disease and local medical review policy: hospice access for patients with diseases other than cancer. Hosp J. 1999;14(3–4):139–54.PubMedGoogle Scholar
  12. 12.
    Stuart. 1995. CMS.gov local coverage determination (LCD): hospice determining terminal status L34538. Accessed 7/17/2017. https://www.cms.gov.
  13. 13.
    Boersma I, Miyasaki J, Kutner J, Kluger B. Palliative care and neurology: time for a paradigm shift. Neurology. 2014;83(6):561–7.PubMedPubMedCentralCrossRefGoogle Scholar
  14. 14.
    Robinson MT, Barrett KM. Emerging subspecialties in neurology: neuropalliative care. Neurology. 2014;82(21):e180–2.PubMedPubMedCentralCrossRefGoogle Scholar
  15. 15.
    Hospice Policy Compendium. The medicare hospice benefit, regulations, quality reporting, and public policy. Alexandria: National Hospice and Palliative Care Organization; 2016. Available from: http://www.nhpco.org/sites/default/files/public/public_policy/Hospice_Policy_Compendium.pdf.Google Scholar
  16. 16.
    McCluskey L, Houseman G. Medicare hospice referral criteria for patients with amyotrophic lateral sclerosis: a need for improvement. J Palliat Med. 2004;7:47–53.PubMedPubMedCentralCrossRefGoogle Scholar
  17. 17.
    Mitchell SL, Miller SC, Teno JM, Davis RB, Shaffer ML. The advanced dementia prognostic tool: a risk score to estimate survival in nursing home residents with advanced dementia. J Pain Symptom Manag. 2010;40:639–51.CrossRefGoogle Scholar
  18. 18.
    Diamond EL, Russell D, Kryza-Lacombe M, et al. Rates and risks for late referral to hospice in patients with primary malignant brain tumors. Neuro-Oncology. 2016;18(1):78–86.PubMedPubMedCentralCrossRefGoogle Scholar
  19. 19.
    Radbruch L, Payne S, Bercovitch, et al. 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):278–89.Google Scholar
  20. 20.
    Connor SR, Sepulveda Bermedo MC, editors. Global atlas of palliative care at the end of life. Worldwide Palliative Care alliance. 2014. Available at: http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf.
  21. 21.
    Payne S, Lynch T. International progress in creating palliative medicine as a specialized discipline and the development of palliative care. In: Cherny NI, Fallon MT, Kaasa S, et al., editors. Oxford textbook of palliative medicine. 5th ed. (Cpt 1.1). Oxford: Oxford University Press; 2015.Google Scholar
  22. 22.
    Hospice UK. Facts and figures [internet]. England: Hospice UK; 2017 [Cited 2018 Jan 1]. Available from: https://www.hospiceuk.org/media-centre/facts-and-figures.
  23. 23.
    National Health Service. End of life care [internet]. London: NHS; 2015. [Cited 2018 Jan 1]. Available from: https://www.nhs.uk/Planners/end-of-life-care/Pages/hospice-care.aspx.Google Scholar
  24. 24.
    Canadian Hospice Palliative Care Association. A model to guide hospice palliative care. Ottawa: Canadian Hospice Palliative Care Association; 2013. A revision of Ferris F, Balfour H, et al. A Model to Guide Hospice Palliative Care, 2002.Google Scholar
  25. 25.
    Healthwise Staff. Coverage for hospice palliative care in Alberta [internet]; 2017 Mar 15 [Cited 2018 Jan 1]. Available from: https://myhealth.alberta.ca/Health/pages/conditions.aspx?hwid=rt1604&.
  26. 26.
    Singer PA, Bowman KW. Quality end-of-life care: a global perspective. BMC Palliat Care. 2002;1(1):4.PubMedPubMedCentralCrossRefGoogle Scholar
  27. 27.
    Casarett DJ, Quill TE. I’m not ready for hospice: strategies for timely and effective hospice discussions. Ann Intern Med. 2007;146(6):443–9.PubMedCrossRefGoogle Scholar
  28. 28.
    Anderson G, Saneto RP. Current oral and non-oral routes of antiepileptic drug delivery. Adv Drug Deliv Rev. 2012;64:911–8.PubMedPubMedCentralCrossRefGoogle Scholar
  29. 29.
    Casarett DJ, Inouye SK, American College of Physicians – American Society of Internal Medicine End-of-Life-Care Consensus Panel. Diagnosis and management of delirium near the end of life. Ann Intern Med. 2001;135(1):32–40.PubMedCrossRefGoogle Scholar
  30. 30.
    Policzer JS, Sobel J. Management of selected nonpain symptoms of life limiting illness. In: Storey CP, Levine S, Shega JW, editors. Vol 4. of unipacs: hospice and palliative care training for physicians – a self study guide. 3rd ed. Glenview: American Academy of Hospice and Palliative Medicine; 2008. p. 43–54.Google Scholar
  31. 31.
    Hosie A, Davidson PM, Agar M, Sanderson CR, Phillips J. Delirium prevalence, incidence, and implications for screening in specialist palliative care inpatient settings: a systematic review. Palliat Med. 2013;27:486–98.PubMedCrossRefGoogle Scholar
  32. 32.
    Lacey J. Management of the dying patient. In: Cherny NI, Fallon MT, Kaasa S, et al., editors. Oxford textbook of palliative medicine. 5th ed. (Cpt 18.1). Oxford: Oxford University Press. 2015.Google Scholar
  33. 33.
    Bush SH, Kanji S, Pereira JL, et al. Treating an established episode of delirium in palliative care: expert opinion and review of the current evidence base with recommendations for future development. J Pain Symptom Manag. 2014;48(2):231–48.CrossRefGoogle Scholar
  34. 34.
    McIver B, Walsh D, Nelson K. The use of chlorpromazine for symptom control in dying patients. J Pain Symptom Manag. 1994;9(5):341–5.CrossRefGoogle Scholar
  35. 35.
    Agar MR, et al. Efficacy of oral risperidone, haloperidol, or placebo for symptoms of delirium among patients in palliative care. JAMA Intern Med. 2017;177(1):34–42.PubMedPubMedCentralCrossRefGoogle Scholar
  36. 36.
    Smucker WD. Palliative and end of life care in LTC: evaluation and treatment of dyspnea, death rattle, and myoclonus. ALTC. 2010;18(5):37–41. Available at: http://www.managedhealthcareconnect.com/content/palliative-and-end-life-care-ltc-evaluation-and-treatment-dyspnea-death-rattle-and-myoclonus.Google Scholar
  37. 37.
    Espay AJ, Chen R. Myoclonus. Continuum: Lifelong Learn Neurol. 2013;19(5):1264–86.Google Scholar
  38. 38.
    Gupta HV, Caviness JN. Post-hypoxic myoclonus: current concepts, neurophysiology, and treatment. Tremor Other Hyperkinetic Mov. 2016;6:409.Google Scholar
  39. 39.
    Gordon MF. Toxin and drug-induced myoclonus. Adv Neurol. 2002;89:49–76.PubMedGoogle Scholar
  40. 40.
    Chan K, Tse D, Sham M. Dyspnoea and other respiratory symptoms in palliative care. In: Cherny NI, Fallon MT, Kaasa S, et al., editors. Oxford textbook of palliative medicine. 5th ed. (Cpt 18.1). Oxford: Oxford University Press. 2015.Google Scholar
  41. 41.
    Tiirola A, Korhonen T, Surakka T, Lehto JT. End-of-life care of patients with amyotrophic lateral sclerosis and other nonmalignant diseases. Am J Hosp Palliat Care. 2017;34(2):154–9.PubMedCrossRefGoogle Scholar
  42. 42.
    Hendriks SA, Smalbrugge M, Galindo-Garre F, et al. From admission to death: prevalence and course of pain, agitation, and shortness of breath, and treatment of these symptoms in nursing home residents with dementia. J Am Med Dir Assoc. 2015;16(6):475–81.PubMedCrossRefGoogle Scholar
  43. 43.
    Radunovic A, Annane D, Rafiqu MK, Mustfa N. Mechanical ventilation for amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database Syst Rev. 2013;(3):CD004427.Google Scholar
  44. 44.
    Wildiers H, Menten J. Death rattle: prevalence, prevention and treatment. J Pain Symptom Manag. 2002;23:310–7.CrossRefGoogle Scholar
  45. 45.
    Eriksson H, Milberg A, Hjelm K, Friedrichsen M. End of life care for patients dying of stroke: a comparative registry study of stroke and cancer. PLoS One. 2016;11(2):e0147694. Published online 2016 Feb 4PubMedPubMedCentralCrossRefGoogle Scholar
  46. 46.
    Mercadamte S. Death rattle: critical review and research agenda. Support Care Cancer. 2014;22(2):571–5.PubMedCrossRefGoogle Scholar
  47. 47.
    Hipp B, Letizia M. Understanding and responding to the death rattle in dying patients. Medsurg Nurs. 2009;18(1):p17.Google Scholar
  48. 48.
    Berger JR. Clinical approach to stupor and coma. In: Bradley WG, Daroff RB, Fenichel GM, Jankovic J, editors. Neurology in clinical practice: principles of diagnosis and management. 4th ed. Philadelphia: Elsevier. p. 43–64.Google Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2019

Authors and Affiliations

  • Farrah N. Daly
    • 1
  • Mara M. Lugassy
    • 2
  1. 1.Goodwin House Palliative Care and HospiceFalls ChurchUSA
  2. 2.MJHS Hospice and Palliative Care, Department of Family and Social MedicineAlbert Einstein College of MedicineNew YorkUSA

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