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Section 1 - Palliative Care Principles

Published online by Cambridge University Press:  08 June 2018

Edited by
Maisha T. Robinson
Maisha T. Robinson
Affiliation:
Mayo Clinic, Florida
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Case Studies in Neuropalliative Care , pp. 1 - 46
Publisher: Cambridge University Press
Print publication year: 2018

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References

Suggested Reading

Center to Advance Palliative Care. Center to Advance Palliative Care Definition of Palliative Care. www.capc.org/about/palliative-care/. Accessed December 30, 2016.Google Scholar
Howie, L, Peppercorn, J. Early palliative care in cancer treatment: Rationale, evidence and clinical implications. Therapeutic Advances in Medical Oncology. 2013;5(6):318–23.CrossRefGoogle ScholarPubMed
Mitka, M. Cancer experts recommend introducing palliative care at time of diagnosis. JAMA. 2012;307(12):1241–2.Google Scholar
Holloway, RG, Arnold, RM, Creutzfeldt, CJ, et al. Palliative and end-of-life care in stroke: A statement for healthcare professionals from the American Heart Association/American Stroke Association. Stroke. 2014;45(6):1887–1916.Google Scholar
Ferrell, BR, Temel, JS, Temin, S, et al. Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology. 2017;35(1):96–112.Google Scholar
Potosek, J, Curry, M, Buss, M, Chittenden, E. Integration of palliative care in end-stage liver disease and liver transplantation. Journal of Palliative Medicine. 2014;17(11):1271–7.Google Scholar
World Health Organization. World Health Organization Definition of Palliative Care. www.who.int/cancer/palliative/definition/en/. Accessed November 30, 2016.Google Scholar
National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. www.hpna.org/multimedia/NCP_Clinical_Practice_Guidelines_3rd_Edition.pdf. Accessed June 4, 2017.Google Scholar
Kavalieratos, D, Corbelli, J, Zhang, D, et al. Association between palliative care and patient and caregiver outcomes: A systematic review and meta-analysis. JAMA. 2016;316(20):2104–14.Google Scholar
Robinson, MT, Barrett, KM. Emerging subspecialties in neurology: Neuropalliative care. Neurology. 2014;82(21):e180–2.Google Scholar
Creutzfeldt, CJ, Robinson, MT, Holloway, RG. Neurologists as primary palliative care providers: Communication and practice approaches. Neurology Clinical Practice. 2016;6(1):40–8.Google Scholar
Dallara, A, Tolchin, DW. Emerging subspecialties in neurology: Palliative care. Neurology. 2014;82(7):640–2.Google Scholar
Boersma, I, Miyasaki, J, Kutner, J, Kluger, B. Palliative care and neurology: Time for a paradigm shift. Neurology. 2014;83(6):561–7.CrossRefGoogle ScholarPubMed

Suggested Reading

Tulsky, JA, Chesney, MA, Lo, B. See one, do one, teach one? House staff experience discussing do-not-resuscitate orders. Arch Intern Med. 1996;156(12):1285–9.Google Scholar
Steinhauser, KE, Clipp, EC, McNeilly, M, Christakis, NA, McIntyre, LM, Tulsky, JA. In search of a good death: Observations of patients, families, and providers. Ann Intern Med. 2000;132(10):825–32.CrossRefGoogle ScholarPubMed
Steinhauser, KE, Christakis, NA, Clipp, EC, McNeilly, M, McIntyre, L, Tulsky, JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476–82.Google Scholar
Emanuel, EJ, Emanuel, LL. Four models of the physician–patient relationship. JAMA. 1992;267(16):2221–6.Google Scholar
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(4):302–11.CrossRefGoogle Scholar
Quill, TE. Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: Addressing the “elephant in the room.” JAMA. 2000;284(19):2502–7.Google Scholar
Sudore, RL, Fried, TR. Redefining the “planning” in advance care planning: Preparing for end-of-life decision making. Ann Intern Med. 2010;153(4):256–61.Google Scholar
Pollak, KI, Arnold, RM, Jeffreys, AS, Alexander, SC, Olsen, MK, Abernethy, AP, et al. Oncologist communication about emotion during visits with patients with advanced cancer. J Clin Oncol. 2007;25(36):5748–52.Google Scholar
Bernacki, RE, Block, SD. Serious illness communications checklist. Virtual Mentor. 2013;15(12):1045–9.Google Scholar
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.Google Scholar

Suggested Reading

Temel, JS, Greer, JA, Admane, S, Gallagher, ER, Jackson, VA, Lynch, TJ, et al. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: Results of a randomized study of early palliative care. J Clin Oncol. 2011;29(17):2319–26.CrossRefGoogle ScholarPubMed
Curtis, JR, Engelberg, R, Young, JP, Vig, LK, Reinke, LF, Wenrich, MD, et al. An approach to understanding the interaction of hope and desire for explicit prognostic information among individuals with severe chronic obstructive pulmonary disease or advanced cancer. J Palliat Med. 2008;11(4):610–20.Google Scholar
Balboni, MJ, Sullivan, A, Amobi, A, Phelps, AC, Gorman, DP, Zollfrank, A, et al. Why is spiritual care infrequent at the end of life? Spiritual care perceptions among patients, nurses, and physicians and the role of training. J Clin Oncol. 2013;31(4):461–7.Google Scholar
Steinhauser, KE, Christakis, NA, Clipp, EC, McNeilly, M, Grambow, S, Parker, J, et al. Preparing for the end of life: Preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage. 2001;22(3):727–37.Google Scholar
Coppola, KM, Ditto, PH, Danks, JH, Smucker, WD. Accuracy of primary care and hospital-based physicians’ predictions of elderly outpatients’ treatment preferences with and without advance directives. Arch Intern Med. 2001;161(3):431–40.CrossRefGoogle ScholarPubMed
Silveira, MJ, Wiitala, W, Piette, J. Advance directive completion by elderly Americans: A decade of change. J Am Geriatr Soc. 2014;62(4):706–10.CrossRefGoogle ScholarPubMed
Scheunemann, LP, Arnold, RM, White, DB. The facilitated values history: Helping surrogates make authentic decisions for incapacitated patients with advanced illness. Am J Respir Crit Care Med. 2012;186(6):480–6.CrossRefGoogle ScholarPubMed
Stewart, M, Brown, JB, Boon, H, Galajda, J, Meredith, L, Sangster, M. Evidence on patient–doctor communication. Cancer Prev Control. 1999;3(1):25–30.CrossRefGoogle ScholarPubMed
Delisser, HM. A practical approach to the family that expects a miracle. Chest. 2009;135(6):1643–7.Google Scholar
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.Google Scholar

Suggested Reading

Bracken, MB, Shepard, MJ, Jr.Webb, SB Psychological responses to acute spinal cord injury: An epidemiological study. Paraplegia. 1981;19:271–83.Google Scholar
Charlifue, S, Apple, D, Burns, SP, et al. Mechanical ventilation, health, and quality of life following spinal cord injury. Arch Phys Med Rehabil. 2011;92:457–63.CrossRefGoogle ScholarPubMed
Dijkers, MPJM. Quality of life of individuals with spinal cord injury: A review of conceptualization, measurement, and research findings. JRRD. 2005;42:87–110.Google Scholar
Lemke, DM. Patient-requested removal of ventilatory support in high-level tetraplegia: Guidelines for the health care provider. SCI Nursing. 2001;18:67–73.Google Scholar
Patterson, DR, Miller-Perrin, C, McCormick, TR, Hudson, LD. N Engl J Med. 1993;328:506–9.Google Scholar
Tada, JE. Joni: An Unforgettable Story. Grand Rapids, MI: Zondervan, 2001.Google Scholar
Trevor-Deutsch, B, Nelson, RF. Refusal of treatment, leading to death: Towards optimization of informed consent. Annals RCPSC. 1996;29:487–9.Google Scholar
Volpe, RL, Crites, JS, Kirschner, KL. Temporizing after spinal cord injury. Hastings Cent Rep. 2015;45:8–10.CrossRefGoogle ScholarPubMed
Weller, DJ, Miller, PM. Emotional reactions of patient, family, and staff in acute-care period of spinal cord injury (parts 1 and 2). Soc Work Health Care. 1977;2:369–77, 3:7–17.Google Scholar

Suggested Reading

Cheshire, WP. Drugs for enhancing cognition and their ethical implications: A hot new cup of tea. Expert Rev Neurother. 2006;6:263–366.Google Scholar
Cheshire, WP. The pharmacologically enhanced physician. AMA J Ethics. 2008;10:594–8.Google Scholar
Cheshire, WP. Requests for enhanced function in healthy individuals. In Williams, MA, McGuire, D, Rizzo, M, editors, Practical Ethics in Clinical Neurology. Philadelphia, PA: Wolters Kluwer, Lippincott, Williams & Wilkins, 2012, pp. 190–202.Google Scholar
Congress of Neurological Surgeons. Committee on head injury nomenclature: Glossary of head injury. Clin Neurosurg. 1966;12:386–94.Google Scholar
Greely, H, Sahakian, B, Harris, J, et al. Towards responsible use of cognitive-enhancing drugs by the healthy. Nature. 2008;456:702–5.Google Scholar
Ilieva, I, Boland, J, Farah, MJ. Objective and subjective cognitive enhancing effects of mixed amphetamine salts in healthy people. Neuropharmacology. 2013;64:496–505.Google Scholar
Kass, L. A Report of the President’s Council on Bioethics. Beyond Therapy: Biotechnology and the Pursuit of Happiness. Washington, DC: Harper Perennial, 2003.Google Scholar
Meaney, DF, Smith, DH. Biomechanics of concussion. Clin Sports Med. 2011;30:19–31.Google Scholar
Ragan, CI, Bard, I, Singh, I, Independent Scientific Committee on Drugs: What should we do about student use of cognitive enhancers? An analysis of current evidence. Neuropharmacology. 2013;64:588–95.Google Scholar
Weiss, HD, Stern, BJ, Goldberg, J. Post-traumatic migraine: Chronic migraine precipitated by minor head or neck trauma. Headache. 1991;31:451–6.Google Scholar

Suggested Reading

Stupp, R, Hegi, ME, Mason, WP, et al. Effects of radiotherapy with concomitant and adjuvant temozolomide versus radiotherapy alone on survival in glioblastoma in a randomised phase III study: 5-year analysis of the EORTC-NCIC trial. Lancet Oncol. 2009;10:459–66.Google Scholar
Gehan, EA, Walker, MD. Prognostic factors for patients with brain tumors. Natl Cancer Inst Monogr. 1977;46:189–95.Google Scholar
McNamara, MG, Sahebjam, S, Mason, WP. Emerging biomarkers in glioblastoma. Cancers (Basel). 2013;5:1103–19.Google Scholar
Hauser, CA, Stockler, MR, Tattersall, MH. Prognostic factors in patients with recently diagnosed incurable cancer: A systematic review. Support Care Cancer. 2006;14:999–1011.Google Scholar
Glare, PA, Sinclair, CT. Palliative medicine review: Prognostication. J Palliat Med. 2008;11:84–103.CrossRefGoogle ScholarPubMed
Glare, P, Virik, K, Jones, M, et al. A systematic review of physicians’ survival predictions in terminally ill cancer patients. BMJ. 2003;327:195–8.Google Scholar
Christakis, NA, Lamont, EB. Extent and determinants of error in doctors’ prognoses in terminally ill patients: Prospective cohort study. BMJ. 2000;320:469–72.Google Scholar
Moss, AH, Lunney, JR, Culp, S, et al: Prognostic significance of the “surprise” question in cancer patients. J Palliat Med. 2010;13:837–40.Google Scholar
Anderson, F, Downing, GM, Hill, J, et al. Palliative performance scale (PPS): A new tool. J Palliat Care. 1996;12:5–11.Google Scholar
Stockler, MR, Tattersall, MH, Boyer, MJ, et al. Disarming the guarded prognosis: Predicting survival in newly referred patients with incurable cancer. Br J Cancer. 2006;94:208–12.Google Scholar

Suggested Reading

Glare, P, Sinclair, C, Downing, M, et al. Predicting survival in patients with advanced disease. Eur J Cancer. 2008;44:1146–56.Google Scholar
Glare, PA, Sinclair, CT. Palliative medicine review: prognostication. J Palliat Med. 2008;11:84–103.Google Scholar
Steinhauser, KE, Christakis, NA, Clipp, EC, et al. Preparing for the end of life: Preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage. 2001;22:727–37.Google Scholar
Hoskin, PJ, Grover, A, Bhana, R. Metastatic spinal cord compression: Radiotherapy outcome and dose fractionation. Radiother Oncol. 2003;68:175–80.Google Scholar
Conway, R, Graham, J, Kidd, J, et al. What happens to people after malignant cord compression? Survival, function, quality of life, emotional well-being and place of care 1 month after diagnosis. Clin Oncol (R Coll Radiol). 2007;19:56–62.Google Scholar
Laufer, I, Rubin, DG, Lis, E, et al. The NOMS framework: Approach to the treatment of spinal metastatic tumors. Oncologist. 2013;18:744–51.Google Scholar
Tokuhashi, Y, Matsuzaki, H, Oda, H, et al. A revised scoring system for preoperative evaluation of metastatic spine tumor prognosis. Spine (Phila Pa 1976). 2005;30:2186–91.Google Scholar

Suggested Reading

Morris, SE, Block, SD. Grief and bereavement. In Grassi, L, Riba, M, eds. Clinical Psycho-oncology: An International Perspective. West Sussex: Wiley-Blackwell. 2012; 271–80.Google Scholar
Prigerson, HG, Horowitz, MJ, Jacobs, SC, et al. Prolonged grief disorder: Psychometric validation of criteria proposed for DSM-V and ICD-11. Brayne, C, ed. PLoS Medicine. 2009; 6(8):e1000121. doi: 10.1371/journal.pmed.1000121.CrossRefGoogle ScholarPubMed
National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, Third Edition. Pittsburgh, PA: National Consensus Project for Quality Palliative Care. 2013.Google Scholar
Kavanagh, DJ. Towards a cognitive-behavioural intervention for adult grief reactions. British Journal of Psychiatry. 1990;157:373–83.Google Scholar
Morris, SE. Overcoming Grief: A Self-Help Guide Using Cognitive Behavioural Techniques. London: Constable Robinson, 2008.Google Scholar
Holmes, TH, Rahe, RH. The Social Readjustment Rating Scale. Journal of Psychosomatic Research. 1967;11:213–18.Google Scholar
Stroebe, M, Schut, H, Stroebe, W. Health outcomes of bereavement. Lancet. 2007;370:1960–73. PubMed PMID: 18068517.CrossRefGoogle ScholarPubMed
Bradley, EH, Prigerson, H, Carlson, MD, et al. Depression among surviving caregivers: Does length of hospice enrollment matter? Am J Psychiatry. 2004; 161:2257–62. PubMed PMID: 15569897.Google Scholar
Christakis, NA, Iwashyna, TJ. The health impact of health care on families: A matched cohort study of hospice use by decedents and mortality outcomes in surviving, widowed spouses. Soc Sci Med. 2003;57:465–75. PubMed PMID: 12791489.Google Scholar

Suggested Reading

Morris, SE, Block, SD. Grief and bereavement. In Grassi, L, Riba, M, eds. Clinical Psycho-oncology: An International Perspective. West Sussex: Wiley-Blackwell. 2012; 271–80.Google Scholar
Wright, AA, Keating, NL, Balboni, TA, et al. Place of death: Correlations with quality of life of patients with cancer and predictors of bereaved caregivers’ mental health. J Clin Oncol. 2010;28:4457–64. doi: 10.1200/JCO.2009.26.3863. PubMed PMID: 20837950; PubMed Central PMCID: PMC2988637.Google Scholar
National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, Third Edition. Pittsburgh: National Consensus Project for Quality Palliative Care. 2013.Google Scholar
Stroebe, M, Schut, H, Stroebe, W. Health outcomes of bereavement. Lancet. 2007;370:1960–73. PubMed PMID: 18068517.Google Scholar
Holmes, TH, Rahe, RH. The Social Readjustment Rating Scale. Journal of Psychosomatic Research 1967;11:213–18.Google Scholar
Morris, SE. Overcoming Grief: A Self-Help Guide Using Cognitive Behavioural Techniques. London: Constable Robinson. 2008.Google Scholar
Lobb, EA, Kristjanson, LJ, Aoum, SM, et al. Predictors of complicated grief: A systematic review of empirical studies. Death Studies. 2010;34:673–98.Google Scholar

Suggested Reading

Ernecoff, NC, Curlin, FA, Buddadhumaruk, P, White, DB. Health care professionals’ responses to religious or spiritual statements by surrogate decision makers during goals-of-care discussions. JAMA Intern Med. 2015 Oct;175(10):1662–9.Google Scholar
Fowler, James W. (1976). Stages of Faith: The Psychology of Human Development and the Question of Meaning. San Francisco, CA: Harper and Row Publishers.Google Scholar
Pulaski, C, Ferrell, B, Virani, R, Otis-Green, S, Baird, P, Bull, J, Chochinov, H, Handzo, G, Nelson-Becker, H, Prince-Paul, M, Pugliese, K, Sulmasy, D. Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference. J Palliat Med. 2009:12(10):885.Google Scholar

Suggested Reading

Dunlay, SM, Strand, JJ, Wordingham, SE, et al. Dying with a left ventricular assist device as destination therapy. Circ Heart Fail. 2016 Oct;9(10).Google Scholar
Gafford, EF, Luckhardt, AJ, Swetz, KM. Deactivation of a left ventricular assist device at the end of life #269. J Palliat Med. 2013 Aug;16(8):980–2.Google Scholar
Mueller, PS, Swetz, KM, Freeman, MR, et al. Ethical analysis of withdrawing ventricular assist device support. Mayo Clin Proc. 2010 Sep;85(9): 791–7.Google Scholar

Suggested Reading

Gunten, CF. Discussing hospice care #38. J Clin Oncol. 2002;20:1419–24.Google Scholar
Hudson, PL, Aranda, S, Kristjanson, LJ. Meeting the supportive needs of family caregivers in palliative care: Challenges for health professionals. J Palliat Med. 2004 Jul;7(1):19–25.Google Scholar
Whitney, SN, McCullough, LB, Fruge, E, et al. Beyond breaking bad news: The roles of hope and hopefulness. Cancer. 2008 Jul 15;113(2):442–5.Google Scholar

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