Palliative care has great potential to improve the quality of life of patients with advanced Parkinson’s disease. However, neurologists face multiple barriers in practically applying the concepts of palliative care including a deficit in education and limitations in time to coordinate this care. In this review, we discuss practical ways for neurologists to apply the principles of palliative care in several domains, including exercising symptom management, managing polypharmacy, managing advanced care planning, supporting patient and families in their psychosocial and spiritual needs, identifying caregiver burden, utilizing multidisciplinary care, and understanding the role of hospice referral.
References
[1]
Hudson, P.L., Toye, C. and Kristjanson, L.J. (2006) Would People with Parkinson’s Disease Benefit from Palliative Care? Palliative Medicine, 20, 87-94.
http://dx.doi.org/10.1191/0269216306pm1108oa
[2]
Liao, S. and Arnold, R.M. (2007) Attitudinal Differences in Neurodegenerative Disorders. Journal of Palliative Medicine, 10, 430-432. http://dx.doi.org/10.1089/jpm.2006.9979
[3]
Deaths, Percent of Total Deaths, and Death Rates for the 15 Leading Causes of Death: United States and Each State, 1999-2014.
http://www.cdc.gov/nchs/nvss/mortality/lcwk9.htm
[4]
Elman, L.B., Houghton, D.J., Wu, G.F., Hurtig, H.I., Markowitz, C.E. and McCluskey, L. (2007) Palliative Care in Amyotrophic Lateral Sclerosis, Parkinson’s Disease, and Multiple Sclerosis. Journal of Palliative Medicine, 10, 433-457.
http://dx.doi.org/10.1089/jpm.2006.9978
[5]
Kelley, A.S. and Morrison, R.S. (2015) Palliative Care for the Seriously Ill. New England Journal of Medicine, 373, 747-755. http://dx.doi.org/10.1056/NEJMra1404684
[6]
Palliative Care in Neurology. The American Academy of Neurology Ethics and Humanities Subcommittee. (1996) Neurology, 46, 870-872.
[7]
Boersma, I., Miyasaki, J., Kutner, J. and Kluger, B. (2014) Palliative Care and Neurology: Time for a Paradigm Shift. Neurology, 83, 561-567.
http://dx.doi.org/10.1212/WNL.0000000000000674
[8]
WHO Definition of Palliative Care http://www.who.int/cancer/palliative/definition/en/
[9]
Miyasaki, J.M., Long, J., Mancini, D., Moro, E., Fox, S.H., Lang, A.E., et al. (2012) Palliative Care for Advanced Parkinson Disease: An Interdisciplinary Clinic and New Scale, the ESAS-PD. Parkinsonism & Related Disorders, 18, S6-S9.
http://dx.doi.org/10.1016/j.parkreldis.2012.06.013
[10]
Saleem, T.Z., Higginson, I.J., Chaudhuri, K.R., Martin, A., Burman, R. and Leigh, P.N. (2013) Symptom Prevalence, Severity and Palliative Care Needs Assessment Using the Palliative Outcome Scale: A Cross-Sectional Study of Patients with Parkinson’s Disease and Related Neurological Conditions. Palliative Medicine, 27, 722-731.
http://dx.doi.org/10.1177/0269216312465783
[11]
Goy, E.R., Carter, J. and Ganzini, L. (2008) Neurologic Disease at the End of Life: Caregiver Descriptions of Parkinson Disease and Amyotrophic Lateral Sclerosis. Journal of Palliative Medicine, 11, 548-554. http://dx.doi.org/10.1089/jpm.2007.0258
[12]
Snell, K., Pennington, S., Lee, M. and Walker, R. (2009) The Place of Death in Parkinson’s Disease. Age and Ageing, 38, 617-619. http://dx.doi.org/10.1093/ageing/afp123
[13]
Hasson, F., Kernohan, W.G., McLaughlin, M., Waldron, M., McLaughlin, D., Chambers, H. and Cochrane, B. (2010) An Exploration into the Palliative and End-Of-Life Experiences of Carers of People with Parkinson’s Disease. Palliative Medicine, 24, 731-736.
http://dx.doi.org/10.1177/0269216310371414
[14]
Giles, S and Miyasaki, J. (2009) Palliative Stage Parkinson’s Disease: Patient and Family Experiences of Health-care Services. Palliative Medicine, 23, 120-125.
http://dx.doi.org/10.1177/0269216308100773
[15]
Carver, A.C., Vickrey, B.G., Bernat, J.L., Keran, C., Ringel, S.P. and Foley, K.M. (1999) End-of-Life Care: A Survey of US Neurologists’ Attitudes, Behavior, and Knowledge. Neurology, 53, 284-284. http://dx.doi.org/10.1212/wnl.53.2.284
[16]
Dallara, A. and Tolchin, D.W. (2014) Emerging Subspecialties in Neurology: Palliative Care. Neurology, 82, 640-642. http://dx.doi.org/10.1212/WNL.0000000000000121
[17]
Hanratty, B., Hibbert, D., Mair, F., May, C., Ward, C., Corcoran, G., Litva, A., et al. (2006) Doctors’ Understanding of Palliative Care. Palliative Medicine, 20, 493-497.
http://dx.doi.org/10.1191/0269216306pm1162oa
[18]
Turner-Stokes, L., Sykes, N., Silber, E., Khatri, A., Sutton, L. and Young, E. (2007) From Diagnosis To Death: Exploring the Interface between Neurology, Rehabilitation and Palliative Care in Managing People with Long-Term Neurological Conditions. Clinical Medicine, 7, 129-136. http://dx.doi.org/10.7861/clinmedicine.7-2-129
[19]
Ghoche, R. (2012) The Conceptual Framework of Palliative Care Applied to Advanced Parkinson’s Disease. Parkinsonism & Related Disorders, 18, S2-S5.
http://dx.doi.org/10.1016/j.parkreldis.2012.06.012
[20]
Ford, B. (2010) Pain in Parkinson’s Disease. Movement Disorders, 25, S98-S103.
http://dx.doi.org/10.1002/mds.22716
[21]
Cohen, S.M., Elackattu, A., Noordzij, J.P., Walsh, M.J. and Langmore, S.E. (2009) Palliative Treatment of Dysphonia and Dysarthria. Otolaryngologic Clinics of North America, 42, 107-121. http://dx.doi.org/10.1016/j.otc.2008.09.010
[22]
Fleisher, J.E. and Stern, M.B. (2013) Medication Nonadherence in Parkinson’s Disease. Current Neurology and Neuroscience Reports, 13, 382.
http://dx.doi.org/10.1007/s11910-013-0382-z
[23]
Bunting-Perry, L.K. (2006) Palliative Care in Parkinson's Disease: Implications for Neuroscience Nursing. Journal of Neuroscience Nursing, 38, 106-113.
http://dx.doi.org/10.1097/01376517-200604000-00006
[24]
Silveira, M.J., Kim, S.Y.H. and Langa, K.M. (2010) Advance Directives and Outcomes of Surrogate Decision Making before Death. New England Journal of Medicine, 362, 1211-1218. http://dx.doi.org/10.1056/NEJMsa0907901
[25]
Kwak, J., Wallendal, M.S., Fritsch, T., Leo, G. and Hyde, T. (2014) Advance Care Planning and Proxy Decision Making for Patients with Advanced Parkinson Disease. Southern Medical Journal, 107, 178-185. http://dx.doi.org/10.1097/SMJ.0000000000000075
[26]
Advance Care Planning (N.D.)
http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3277
[27]
NHS Choices (N.D.) End of Life Care Guide: Planning Ahead for Your Care.
http://www.nhs.uk/Planners/end-of-life-care/Pages/planning-ahead.aspx
[28]
Lanoix, M. (2009) Palliative Care and Parkinson’s Disease: Managing the Chronic-Palliative Interface. Chronic Illness, 5, 46-55. http://dx.doi.org/10.1177/1742395309102819
[29]
Miyasaki, J.M. (2013) Palliative Care in Parkinson’s Disease. Current Neurology and Neuroscience Reports, 13, 367. http://dx.doi.org/10.1007/s11910-013-0367-y
[30]
Gort, A.M., Mingot, M., Gomez, X., Soler, T., Torres, G., Sacristán, O., Cabau, J., et al. (2007) Use of the Zarit Scale for Assessing Caregiver Burden and Collapse in Caregiving at Home in Dementias. International Journal of Geriatric Psychiatry, 22, 957-962.
http://dx.doi.org/10.1002/gps.1770
[31]
Ellis, T., de Goede, C.J., Feldman, R.G., Wolters, E.C., Kwakkel, G. and Wagenaar, R.C. (2005) Efficacy of a Physical Therapy Program in Patients with Parkinson’s Disease: A Randomized Controlled Trial. Archives of Physical Medicine and Rehabilitation, 86, 626-632. http://dx.doi.org/10.1016/j.apmr.2004.08.008
[32]
Suchowersky, O., Gronseth, G., Perlmutter, J., Reich, S., Zesiewicz, T. and Weiner, W.J. (2006) Practice Parameter: Neuroprotective Strategies and Alternative Therapies for Parkinson Disease (An Evidence-Based Review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology, 66, 976-982.
http://dx.doi.org/10.1212/01.wnl.0000206363.57955.1b
[33]
Borasio, G.D. (2013) The Role of Palliative Care in Patients with Neurological Diseases. Nature Reviews Neurology, 9, 292-295. http://dx.doi.org/10.1038/nrneurol.2013.49
[34]
Cheng, E.M., Tonn, S., Swain-Eng, R., Factor, S.A., Weiner, W.J., Bever, C.T. and For the American Academy of Neurology Parkinson Disease Measure Development Panel (2010) Quality Improvement in Neurology: AAN Parkinson Disease Quality Measures: Report of the Quality Measurement and Reporting Subcommittee of the American Academy of Neurology. Neurology, 75, 2021-2027. http://dx.doi.org/10.1212/WNL.0b013e3181ff96dd
[35]
Goy, E.R., Bohlig, A., Carter, J. and Ganzini, L. (2015) Identifying Predictors of Hospice Eligibility in Patients with Parkinson Disease. American Journal of Hospice and Palliative Medicine, 32, 29-33. http://dx.doi.org/10.1177/1049909113502119
