Neuropalliative Care: A Practical Guide for the Neurologist

K. Brizzi; C. J. Creutzfeldt

doi:10.1055/s-0038-1668074

Seminars in Neurology, Table of Contents

Semin Neurol 2018; 38(05): 569-575
DOI: 10.1055/s-0038-1668074

Review Article

Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

Neuropalliative Care: A Practical Guide for the Neurologist

K. Brizzi

¹Department of Neurology, Massachusetts General Hospital, Boston, Massachusetts

,

C. J. Creutzfeldt

²Division of Palliative Care, Department of Medicine, Massachusetts General Hospital, Wang Ambulatory Care Center, Boston, Massachusetts

³Department of Neurology, Harborview Medical Center, Seattle, Washington

› Author Affiliations

Abstract

Neuropalliative care is a new and growing field within neurology that focuses on improving the quality of life of patients with serious neurologic illnesses. While specialty-level palliative care training is available to interested neurologists, all neurologists can strive to provide primary palliative care for their patients. In this review, we will describe the scope of neuropalliative care, define patient populations who may benefit from palliative care, and explore the communication and symptom management skills essential to palliative care delivery.

Keywords

palliative care - neuropalliative care - quality of life - communication skills

Full Text

References

References
1 Neurological disorders affect millions globally: WHO report. World Health Organization website: http://www.who.int/mediacentre/news/releases/2007/pr04/en . February 27, 2007. Accessed January 22, 2018
2 Boersma I, Miyasaki J, Kutner J, Kluger B. Palliative care and neurology: time for a paradigm shift. Neurology 2014; 83 (06) 561-567
3 Dallara A, Tolchin DW. Emerging subspecialties in neurology: palliative care. Neurology 2014; 82 (07) 640-642
4 Robinson MT, Barrett KM. Emerging subspecialties in neurology: neuropalliative care. Neurology 2014; 82 (21) e180-e182
5 About Palliative Care. Center to Advance Palliative Care website: http://www.capc.org/about/palliative-care . Accessed February 1, 2018
6 Adler ED, Goldfinger JZ, Kalman J, Park ME, Meier DE. Palliative care in the treatment of advanced heart failure. Circulation 2009; 120 (25) 2597-2606
7 Quill TE, Abernethy AP. Generalist plus specialist palliative care--creating a more sustainable model. N Engl J Med 2013; 368 (13) 1173-1175
8 Creutzfeldt CJ, Longstreth WT, Holloway RG. Predicting decline and survival in severe acute brain injury: the fourth trajectory. BMJ 2015; 351: h3904
9 Laforce Jr R. Behavioral and language variants of frontotemporal dementia: a review of key symptoms. Clin Neurol Neurosurg 2013; 115 (12) 2405-2410
10 van Duijn E, Craufurd D, Hubers AA. , et al; European Huntington's Disease Network Behavioural Phenotype Working Group. Neuropsychiatric symptoms in a European Huntington's disease cohort (REGISTRY). J Neurol Neurosurg Psychiatry 2014; 85 (12) 1411-1418
11 Holloway RG, Gramling R, Kelly AG. Estimating and communicating prognosis in advanced neurologic disease. Neurology 2013; 80 (08) 764-772
12 Hemphill III JC, Newman J, Zhao S, Johnston SC. Hospital usage of early do-not-resuscitate orders and outcome after intracerebral hemorrhage. Stroke 2004; 35 (05) 1130-1134
13 Gerhart KA, Koziol-McLain J, Lowenstein SR, Whiteneck GG. Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers. Ann Emerg Med 1994; 23 (04) 807-812
14 Clarke DM, McLeod JE, Smith GC, Trauer T, Kissane DW. A comparison of psychosocial and physical functioning in patients with motor neurone disease and metastatic cancer. J Palliat Care 2005; 21 (03) 173-179
15 Timmer MHM, van Beek MHCT, Bloem BR, Esselink RAJ. What a neurologist should know about depression in Parkinson's disease. Pract Neurol 2017; 17 (05) 359-368
16 Hackett ML, Anderson CS. Predictors of depression after stroke: a systematic review of observational studies. Stroke 2005; 36 (10) 2296-2301
17 Ahn S, Lee J, Chu SH, Sohn YH. Uncertainty and depression in people with Parkinson's disease: a cross-sectional study. Nurs Health Sci 2017; 19 (02) 220-227
18 Lynch SG, Kroencke DC, Denney DR. The relationship between disability and depression in multiple sclerosis: the role of uncertainty, coping, and hope. Mult Scler 2001; 7 (06) 411-416
19 Kroencke DC, Denney DR, Lynch SG. Depression during exacerbations in multiple sclerosis: the importance of uncertainty. Mult Scler 2001; 7 (04) 237-242
20 Walbert T, Glantz M, Schultz L, Puduvalli VK. Impact of provider level, training and gender on the utilization of palliative care and hospice in neuro-oncology: a North-American survey. J Neurooncol 2016; 126 (02) 337-345
21 Accreditation Council for Graduate Medical Education. ACGME Program Requirements for Graduate Medical Education in Neurology: IV.A.5.b).(3).(c). Available at: http://www.acgme.org/portals/0/pfassets/programrequirements/180_neurology_2016.pdf . July 1, 2016. Accessed January 21, 2018
22 Schuh LA, Adair JC, Drogan O, Kissela BM, Morgenlander JC, Corboy JR. Education research: neurology residency training in the new millennium. Neurology 2009; 72 (04) e15-e20
23 Creutzfeldt CJ, Gooley T, Walker M. Are neurology residents prepared to deal with dying patients?. Arch Neurol 2009; 66 (11) 1427-1428
24 Carver AC, Vickrey BG, Bernat JL, Keran C, Ringel SP, Foley KM. End-of-life care: a survey of US neurologists' attitudes, behavior, and knowledge. Neurology 1999; 53 (02) 284-293
25 Mitchell SL, Kiely DK, Hamel MB. Dying with advanced dementia in the nursing home. Arch Intern Med 2004; 164 (03) 321-326
26 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-oncol 2016; 18 (01) 78-86
27 Robinson MT, Vickrey BG, Holloway RG. , et al. The lack of documentation of preferences in a cohort of adults who died after ischemic stroke. Neurology 2016; 86 (22) 2056-2062
28 Kendall M, Cowey E, Mead G. , et al. Outcomes, experiences and palliative care in major stroke: a multicentre, mixed-method, longitudinal study. CMAJ 2018; 190 (09) E238-E246
29 Boersma I, Jones J, Carter J. , et al. Parkinson disease patients' perspectives on palliative care needs: what are they telling us?. Neurol Clin Pract 2016; 6 (03) 209-219
30 Goy ER, Carter JH, Ganzini L. Parkinson disease at the end of life: caregiver perspectives. Neurology 2007; 69 (06) 611-612
31 Buecken R, Galushko M, Golla H. , et al. Patients feeling severely affected by multiple sclerosis: how do patients want to communicate about end-of-life issues?. Patient Educ Couns 2012; 88 (02) 318-324
32 Liénard A, Merckaert I, Libert Y. , et al. Is it possible to improve residents breaking bad news skills? A randomised study assessing the efficacy of a communication skills training program. Br J Cancer 2010; 103 (02) 171-177
33 Bernacki RE, Block SD. ; American College of Physicians High Value Care Task Force. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med 2014; 174 (12) 1994-2003
34 Javier AD, Figueroa R, Siew ED. , et al. Reliability and utility of the surprise question in CKD stages 4 to 5. Am J Kidney Dis 2017; 70 (01) 93-101
35 Ouchi K, Jambaulikar G, George NR. , et al. The “Surprise Question” asked of emergency physicians may predict 12-month mortality among older emergency department patients. J Palliat Med 2018; 21 (02) 236-240
36 Moss AH, Lunney JR, Culp S. , et al. Prognostic significance of the “surprise” question in cancer patients. J Palliat Med 2010; 13 (07) 837-840
37 Creutzfeldt CJ, Engelberg RA, Healey L. , et al. Palliative care needs in the neuro-ICU. Crit Care Med 2015; 43 (08) 1677-1684
38 El-Jawahri A, LeBlanc T, VanDusen H. , et al. Effect of inpatient palliative care on quality of life 2 weeks after hematopoietic stem cell transplantation: a randomized clinical trial. JAMA 2016; 316 (20) 2094-2103
39 Nelson JE, Curtis JR, Mulkerin C. , et al; Improving Palliative Care in the ICU (IPAL-ICU) Project Advisory Board. Choosing and using screening criteria for palliative care consultation in the ICU: a report from the Improving Palliative Care in the ICU (IPAL-ICU) Advisory Board. Crit Care Med 2013; 41 (10) 2318-2327
40 Creutzfeldt CJ, Wunsch H, Curtis JR, Hua M. Prevalence and outcomes of patients meeting palliative care consultation triggers in neurological intensive care units. Neurocrit Care 2015; 23 (01) 14-21
41 Creutzfeldt CJ, Robinson MT, Holloway RG. Neurologists as primary palliative care providers: Communication and practice approaches. Neurol Clin Pract 2016; 6 (01) 40-48
42 Vital Talk Resources. Vital Talk. Available at: http://vitaltalk.org/resources/ . Accessed February 12, 2018
43 Communication Skills Curriculum. Center to Advance Palliative Care. Available at: https://www.capc.org/providers/courses/communication-skills-34/ . Accessed March 8, 2018
44 Jacobsen J, Kvale E, Rabow M. , et al. Helping patients with serious illness live well through the promotion of adaptive coping: a report from the improving outpatient palliative care (IPAL-OP) initiative. J Palliat Med 2014; 17 (04) 463-468
45 Wright AA, Zhang B, Ray A. , et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008; 300 (14) 1665-1673
46 Temel JS, Greer JA, Muzikansky A. , et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010; 363 (08) 733-742
47 Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010; 340: c1345
48 Mack JW, Cronin A, Taback N. , et al. End-of-life care discussions among patients with advanced cancer: a cohort study. Ann Intern Med 2012; 156 (03) 204-210
49 Jackson VA, Jacobsen J, Greer JA, Pirl WF, Temel JS, Back AL. The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: a communication guide. J Palliat Med 2013; 16 (08) 894-900
50 Schutz RE, Coats HL, Engelberg RA, Curtis JR, Creutzfeldt CJ. Is there hope? Is she there? How families and clinicians experience severe acute brain injury. J Palliat Med 2017; 20 (02) 170-176
51 Ahalt C, Walter LC, Yourman L, Eng C, Pérez-Stable EJ, Smith AK. “Knowing is better”: preferences of diverse older adults for discussing prognosis. J Gen Intern Med 2012; 27 (05) 568-575
52 Back AL, Arnold RM, Baile WF, Tulsky JA, Fryer-Edwards K. Approaching difficult communication tasks in oncology. CA Cancer J Clin 2005; 55 (03) 164-177
53 Back AL, Arnold RM. Discussing prognosis: “how much do you want to know?” talking to patients who do not want information or who are ambivalent. J Clin Oncol 2006; 24 (25) 4214-4217
54 Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist 2000; 5 (04) 302-311
55 Quill TE, Arnold RM, Platt F. “I wish things were different”: expressing wishes in response to loss, futility, and unrealistic hopes. Ann Intern Med 2001; 135 (07) 551-555
56 Messina MJ, Dalla Costa G, Rodegher M. , et al. The communication of multiple sclerosis diagnosis: the patients' perspective. Mult Scler Int 2015; 2015: 353828
57 Miyashita M, Narita Y, Sakamoto A. , et al. Care burden and depression in caregivers caring for patients with intractable neurological diseases at home in Japan. J Neurol Sci 2009; 276 (1-2): 148-152
58 O'Dwyer ST, Moyle W, Zimmer-Gembeck M, De Leo D. Suicidal ideation in family carers of people with dementia. Aging Ment Health 2016; 20 (02) 222-230
59 Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA 1999; 282 (23) 2215-2219
60 Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA 2014; 311 (10) 1052-1060
61 Thompson GN, Roger K. Understanding the needs of family caregivers of older adults dying with dementia. Palliat Support Care 2014; 12 (03) 223-231
62 Young ME, Lutz BJ, Creasy KR, Cox KJ, Martz C. A comprehensive assessment of family caregivers of stroke survivors during inpatient rehabilitation. Disabil Rehabil 2014; 36 (22) 1892-1902
63 What is Hospice Care? American Academy of Hospice and Palliative Medicine: Palliative Doctors. Available at: http://palliativedoctors.org/hospice/care . Accessed March 14, 2018
64 Creutzfeldt CJ, Kluger B, Kelly AG. , et al. Neuropalliative care: priorities to move the field forward. Neurology 2018; 91 (05) 217-226