Download PDF
CC BY-NC-ND 4.0 · J Neuroanaesth Crit Care 2019; 06(01): 005-012
DOI: 10.1055/s-0038-1675891
Review Article
Indian Society of Neuroanaesthesiology and Critical Care

Palliative Care for Neurologically Injured Patients: Why and How?

Barkha Bindu
1   Department of Neuroanaesthesiology and Critical Care, All India Institute of Medical Sciences (AIIMS), New Delhi, India
,
Girija P. Rath
1   Department of Neuroanaesthesiology and Critical Care, All India Institute of Medical Sciences (AIIMS), New Delhi, India
› Author Affiliations
Further Information

Publication History

Received: 30 August 2018

Accepted: 24 September 2018

Publication Date:
25 January 2019 (online)

   Permissions and Reprints

Abstract

The role of palliative care in patients with cancer is widely acknowledged and practiced. Though its role in chronic, progressive, and incurable neurological conditions is being recognized now, it is not widely practiced. Lack of awareness and training are important factors contributing to this. Neurological patients differ from oncological patients with respect to their symptoms, fluctuating disease course, varied prognoses, and difficulty in identifying end-of-life stage. Knowledge of different neurological conditions is important to practice neuropalliative care appropriately. Growth of neuropalliative care services must begin with the neurologist at the center of the multidisciplinary team. Neurologists need to be trained in communication skills and advance care planning, and must be aware of end-of-life care, do-not-resuscitate policies, and withdrawal of life support measures. This article elaborates on these aspects of neuropalliative care and discusses its role in various neurological conditions.

Keywords

neuropalliative care - end-of-life care - do-not-resuscitate - amyotrophic lateral sclerosis
 

  • References

  • 1 Muckaden M, Dighe M, Balaji P. et al. Paediatric palliative care: theory to practice. Indian J Palliat Care 2011; 17 (Suppl) S52-S60
    CrossrefPubMedGoogle Scholar
  • 2 World Health Organization. Available at: www.who.int/cancer/palliative/definition Accessed August 2, 2018
    PubMed
  • 3 Meyers FJ, Linder J. Simultaneous care: disease treatment and palliative care throughout illness. J Clin Oncol 2003; 21 (07) 1412-1415
    CrossrefPubMedGoogle Scholar
  • 4 Kelley AS, Meier DE. Palliative care—a shifting paradigm. N Engl J Med 2010; 363 (08) 781-782
    CrossrefPubMedGoogle Scholar
  • 5 Ahmedzai SH, Costa A, Blengini C. et al; international working group convened by the European School of Oncology. A new international framework for palliative care. Eur J Cancer 2004; 40 (15) 2192-2200
    CrossrefPubMedGoogle Scholar
  • 6 Hussain JA, Russon L. Supportive and palliative care for people with end-stage renal disease. Br J Hosp Med (Lond) 2012; 73 (11) 640-644
    CrossrefPubMedGoogle Scholar
  • 7 Howlett JG. Palliative care in heart failure: addressing the largest care gap. Curr Opin Cardiol 2011; 26 (02) 144-148
    CrossrefPubMedGoogle Scholar
  • 8 Heigener DF, Rabe KF. Palliative care concepts in respiratory disease. Respiration 2011; 82 (06) 483-491
    CrossrefPubMedGoogle Scholar
  • 9 Hepgul N, Gao W, Evans CJ. et al; OPTCARE Neuro. Integrating palliative care into neurology services: what do the professionals say?. BMJ Support Palliat Care 2018; 8 (01) 41-44
    CrossrefPubMedGoogle Scholar
  • 10 Lanoix M. Palliative care and Parkinson's disease: managing the chronic-palliative interface. Chronic Illn 2009; 5 (01) 46-55
    CrossrefPubMedGoogle Scholar
  • 11 Miyasaki JM, Long J, Mancini D. et al. Palliative care for advanced Parkinson disease: an interdisciplinary clinic and new scale, the ESAS-PD. Parkinsonism Relat Disord 2012; 18 (Supp l) (03) S6-S9
    PubMedGoogle Scholar
  • 12 Kim Y, Schulz R. Family caregivers’ strains: comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. J Aging Health 2008; 20 (05) 483-503
    CrossrefPubMedGoogle Scholar
  • 13 Provinciali L, Carlini G, Tarquini D, Defanti CA, Veronese S, Pucci E. Need for palliative care for neurological diseases. Neurol Sci 2016; 37 (10) 1581-1587
    CrossrefPubMedGoogle Scholar
  • 14 Inelmen EM, Mosele M, Sergi G, Toffanello ED, Coin A, Manzato E. Chronic pain in the elderly with advanced dementia. Are we doing our best for their suffering?. Aging Clin Exp Res 2012; 24 (03) 207-212
    PubMedGoogle Scholar
  • 15 Attarian H. Importance of sleep in the quality of life of multiple sclerosis patients: a long under-recognized issue. Sleep Med 2009; 10 (01) 7-8
    CrossrefPubMedGoogle Scholar
  • 16 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 (01) 30-38
    CrossrefPubMedGoogle Scholar
  • 17 Le BH, Pisasale M, Watt J. Palliative care in stroke. Palliat Med 2008; 22 (01) 95-96
    CrossrefPubMedGoogle Scholar
  • 18 Loblaw DA, Perry J, Chambers A, Laperriere NJ. Systematic review of the diagnosis and management of malignant extradural spinal cord compression: the Cancer Care Ontario Practice Guidelines Initiative's Neuro-Oncology Disease Site Group. J Clin Oncol 2005; 23 (09) 2028-2037
    CrossrefPubMedGoogle Scholar
  • 19 Dallara A, Tolchin DW. Emerging subspecialties in neurology: palliative care. Neurology 2014; 82 (07) 640-642
    CrossrefPubMedGoogle Scholar
  • 20 Mitchell SL, Kiely DK, Hamel MB. Dying with advanced dementia in the nursing home. Arch Intern Med 2004; 164 (03) 321-326
    CrossrefPubMedGoogle Scholar
  • 21 Voltz R, Akabayashi A, Reese C, Ohi G, Sass HM. End-of-life decisions and advance directives in palliative care: a cross-cultural survey of patients and health-care professionals. J Pain Symptom Manage 1998; 16 (03) 153-162
    CrossrefPubMedGoogle Scholar
  • 22 Geurts M, Macleod MR, van Thiel GJ, van Gijn J, Kappelle LJ, van der Worp HB. End-of-life decisions in patients with severe acute brain injury. Lancet Neurol 2014; 13 (05) 515-524
    CrossrefPubMedGoogle Scholar
  • 23 Kristjanson LJ, Nelson F, Henteleff P. Palliative care for individuals with amyotrophic lateral sclerosis. J Palliat Care 1987; 2 (02) 28-34
    CrossrefPubMedGoogle Scholar
  • 24 Oliver D, Borasio GD, Voltz R. The development of a consensus paper on palliative care in neurology: the implications for ALS care. Amyotroph Lateral Scler Frontotemporal Degener 2014; 15: 117-118
    PubMedGoogle Scholar
  • 25 Boersma I, Miyasaki J, Kutner J, Kluger B. Palliative care and neurology: time for a paradigm shift. Neurology 2014; 83 (06) 561-567
    CrossrefPubMedGoogle Scholar
  • 26 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
    CrossrefPubMedGoogle Scholar
  • 27 Miller RG, Jackson CE, Kasarskis EJ. et al; Quality Standards Subcommittee of the American Academy of Neurology. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2009; 73 (15) 1227-1233
    CrossrefPubMedGoogle Scholar
  • 28 Hughes JC, Jolley D, Jordan A, Sampson EL. Palliative care in dementia: issues and evidence. Adv Psychiatr Treat 2007; 13: 251-260
    CrossrefPubMedGoogle Scholar
  • 29 Alzheimer Europe Report. End-of-life care for people with dementia. 2/2008. Available at: http://www.alzheimer-europe.org Accessed August 2, 2018
    PubMedGoogle Scholar
  • 30 Schulz R, Boerner K, Shear K, Zhang S, Gitlin LN. Predictors of complicated grief among dementia caregivers: a prospective study of bereavement. Am J Geriatr Psychiatry 2006; 14 (08) 650-658
    CrossrefPubMedGoogle Scholar
  • 31 Dawson S, Kristjanson LJ, Toye CM, Flett P. Living with Huntington's disease: need for supportive care. Nurs Health Sci 2004; 6 (02) 123-130
    CrossrefPubMedGoogle Scholar
  • 32 Checkoway H, Nelson LM. Epidemiologic approaches to the study of Parkinson's disease etiology. Epidemiology 1999; 10 (03) 327-336
    CrossrefPubMedGoogle Scholar
  • 33 Friedman JH, Factor SA. Atypical antipsychotics in the treatment of drug-induced psychosis in Parkinson's disease. Mov Disord 2000; 15 (02) 201-211
    CrossrefPubMedGoogle Scholar
  • 34 Weintraub D, Stern MB. Psychiatric complications in Parkinson disease. Am J Geriatr Psychiatry 2005; 13 (10) 844-851
    CrossrefPubMedGoogle Scholar
  • 35 Wilcox SK. Extending palliative care to patients with Parkinson's disease. Br J Hosp Med (Lond) 2010; 71 (01) 26-30
    CrossrefPubMedGoogle Scholar
  • 36 Mostile G, Jankovic J. Treatment of dysautonomia associated with Parkinson's disease. Parkinsonism Relat Disord 2009; 15 (Suppl. 03) S224-S232
    CrossrefPubMedGoogle Scholar
  • 37 Kenney C, Jankovic J. Rotigotine transdermal patch in the treatment of Parkinson's disease and restless legs syndrome. Expert Opin Pharmacother 2007; 8 (09) 1329-1335
    CrossrefPubMedGoogle Scholar
  • 38 Schubart JR, Kinzie MB, Farace E. Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro-oncol 2008; 10 (01) 61-72
    PubMedGoogle Scholar
  • 39 Sizoo EM, Braam L, Postma TJ. et al. Symptoms and problems in the end-of-life phase of high-grade glioma patients. Neuro-oncol 2010; 12 (11) 1162-1166
    PubMedGoogle Scholar
  • 40 Holloway RG, Arnold RM, Creutzfeldt CJ. et al; American Heart Association Stroke Council, Council on Cardiovascular and Stroke Nursing, and Council on Clinical Cardiology. Palliative and end-of-life care in stroke: a statement for healthcare professionals from the American Heart Association/American Stroke Association. Stroke 2014; 45 (06) 1887-1916
    CrossrefPubMedGoogle Scholar
  • 41 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 (02) e0147694
    CrossrefPubMedGoogle Scholar
  • 42 Creutzfeldt CJ, Holloway RG, Curtis JR. Palliative care: a core competency for stroke neurologists. Stroke 2015; 46: 2714-2719
    CrossrefPubMedGoogle Scholar
  • 43 Norton SA, Hogan LA, Holloway RG, Temkin-Greener H, Buckley MJ, Quill TE. Proactive palliative care in the medical intensive care unit: effects on length of stay for selected high-risk patients. Crit Care Med 2007; 35 (06) 1530-1535
    CrossrefPubMedGoogle Scholar
  • 44 Medina RC, Cantero MJP, Rodriguez AM. et al. Palliative care and paediatric neurology. Eur J Paediatr Neurol 2015; 19: S127
    PubMedGoogle Scholar
  • 45 Johnson M. A guide to the development of children's palliative care services. Association of Children's Palliative Care (ACT). 3rd ed.. Bristol, UK: Royal College of Nursing and Royal college of Paediatrics and Child Health; 2009
    Google Scholar
  • 46 Rushton CH, Erby LH, Cohn RD, Geller G. Integrating palliative care in life-limiting pediatric neuromuscular conditions: the case of SMA-Type 1 and Duchene muscular dystrophy. J Palliat Care Med 2012; 2: 103
    PubMedGoogle Scholar
  • 47 Zelcer S, Cataudella D, Cairney AE, Bannister SL. Palliative care of children with brain tumors: a parental perspective. Arch Pediatr Adolesc Med 2010; 164 (03) 225-230
    CrossrefPubMedGoogle Scholar
  • 48 O'Brien MR, Whitehead B, Jack BA, Mitchell JD. From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): experiences of people with ALS/MND and family carers—a qualitative study. Amyotroph Lateral Scler 2011; 12 (02) 97-104
    CrossrefPubMedGoogle Scholar
  • 49 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
    CrossrefPubMedGoogle Scholar
  • 50 VITAL talk. Available at: http://www.vitaltalk.org Accessed August 8, 2018
    PubMedGoogle Scholar
  • 51 Chen JJ, Marsh L. Depression in Parkinson's disease: identification and management. Pharmacotherapy 2013; 33 (09) 972-983
    CrossrefPubMedGoogle Scholar
  • 52 Miller RG, Jackson CE, Kasarskis EJ. et al; Quality Standards Subcommittee of the American Academy of Neurology. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2009; 73 (15) 1218-1226
    CrossrefPubMedGoogle Scholar
  • 53 Mo Y, Zimmermann AE. Role of dexmedetomidine for the prevention and treatment of delirium in intensive care unit patients. Ann Pharmacother 2013; 47 (06) 869-876
    CrossrefPubMedGoogle Scholar
  • 54 Hackett ML, Anderson CS, House A, Xia J. Interventions for treating depression after stroke. Cochrane Database Syst Rev 2008; (04) CD003437
    PubMedGoogle Scholar
  • 55 Hackett ML, Anderson CS, House A, Halteh C. Interventions for preventing depression after stroke. Cochrane Database Syst Rev 2008; (03) CD003689
    PubMedGoogle Scholar
  • 56 Albert SM, Murphy PL, Del Bene ML, Rowland LP. Prospective study of palliative care in ALS: choice, timing, outcomes. J Neurol Sci 1999; 169 (1-2): 108-113
    CrossrefPubMedGoogle Scholar
  • 57 Sullivan AB, Miller D. Who is taking care of the caregiver?. J Patient Exp 2015; 2 (01) 7-12
    PubMedGoogle Scholar
  • 58 Gauthier A, Vignola A, Calvo A. et al. A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology 2007; 68 (12) 923-926
    CrossrefPubMedGoogle Scholar
  • 59 Ozmen S, Yurttas A. Determination of care burden of caregivers of patients with multiple sclerosis in Turkey. Behav Neurol 2018; 7205046 eCollection 2018
    PubMedGoogle Scholar
  • 60 Labson MC, Sacco MM, Weissman DE, Gornet B, Stuart B. Innovative models of home-based palliative care. Cleve Clin J Med 201380 Electronic (Suppl. 01) eS30-eS35
    PubMedGoogle Scholar
  • 61 Baker R, Wu AW, Teno JM. et al. Family satisfaction with end-of-life care in seriously ill hospitalized adults. J Am Geriatr Soc 2000; 48 (05) Suppl S61-S69
    CrossrefPubMedGoogle Scholar
  • 62 Alexandrov AV, Pullicino PM, Meslin EM, Norris JW. Agreement on disease-specific criteria for do-not-resuscitate orders in acute stroke. Members of the Canadian and Western New York Stroke Consortiums. Stroke 1996; 27 (02) 232-237
    CrossrefPubMedGoogle Scholar
  • 63 Mayer SA, Kossoff SB. Withdrawal of life support in the neurological intensive care unit. Neurology 1999; 52 (08) 1602-1609
    CrossrefPubMedGoogle Scholar
  • 64 Keenan SP, Busche KD, Chen LM, McCarthy L, Inman KJ, Sibbald WJ. A retrospective review of a large cohort of patients undergoing the process of withholding or withdrawal of life support. Crit Care Med 1997; 25 (08) 1324-1331
    CrossrefPubMedGoogle Scholar
  • 65 Ebell MH, Becker LA, Barry HC, Hagen M. Survival after in-hospital cardiopulmonary resuscitation. A meta-analysis. J Gen Intern Med 1998; 13 (12) 805-816
    CrossrefPubMedGoogle Scholar
  • 66 Bakker J, Jansen TC, Lima A, Kompanje EJ. Why opioids and sedatives may prolong life rather than hasten death after ventilator withdrawal in critically ill patients. Am J Hosp Palliat Care 2008; 25 (02) 152-154
    CrossrefPubMedGoogle Scholar
  • 67 Chan JD, Treece PD, Engelberg RA. et al. Narcotic and benzodiazepine use after withdrawal of life support: association with time to death?. Chest 2004; 126 (01) 286-293
    CrossrefPubMedGoogle Scholar
  • 68 Joint Working Party between the National Council for Hospice and Specialist Palliative Care Services and the Ethics Committee of the Association for Palliative Medicine of Great Britain and Ireland. Ethical decision making in palliative care: artificial hydration for people who are terminally ill. J Eur Assoc Palliative Care 1997; 4: 203-207
    PubMedGoogle Scholar
  • 69 British Medical Association. Advance Statements about Medical Treatment: Code of Practice with Explanatory Notes. London, UK: BMJ Publishing Group; 1995
    Google Scholar
  • 70 Fallowfield LJ, Jenkins VA, Beveridge HA. Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med 2002; 16 (04) 297-303
    CrossrefPubMedGoogle Scholar
  • 71 Epstein RM, Street Jr. RL. Shared mind: communication, decision making, and autonomy in serious illness. Ann Fam Med 2011; 9 (05) 454-461
    CrossrefPubMedGoogle Scholar
  • 72 Mitsumoto H, Rabkin JG. Palliative care for patients with amyotrophic lateral sclerosis: “prepare for the worst and hope for the best.”. JAMA 2007; 298 (02) 207-216
    CrossrefPubMedGoogle Scholar
  • 73 Casarett DJ, Quill TE. “I'm not ready for hospice”: strategies for timely and effective hospice discussions. Ann Intern Med 2007; 146 (06) 443-449
    PubMedGoogle Scholar