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Original Article

Advance care planning for patients with amyotrophic lateral sclerosis

, , , , , , , & show all
Pages 388-396 | Received 14 Oct 2016, Accepted 10 Jan 2017, Published online: 05 Mar 2017

References

  • Ganzini L, Johnston WS, Silveira MJ. The final month of life in patients with ALS. Neurology. 2002;59:428–31.
  • Lechtzin N, Wiener CM, Clawson L, Chaudhry V, Diette GB. Hospitalization in amyotrophic lateral sclerosis: causes, costs, and outcomes. Neurology. 2001;56:753–7.
  • Heritier B, Adler D, Iancu F, Ricou B, Gasche Y, Leuchter I, et al. Is tracheostomy still an option in amyotrophic lateral sclerosis? Reflections of a multidisciplinary work group. Swiss Med Week. 2012;143:w13830–w.
  • Chochinov HM, Tataryn D, Clinch JJ, Dudgeon D. Will to live in the terminally ill. Lancet. 1999;354:816–9.
  • Upadya A, Muralidharan V, Thorevska N, Amoateng-Adjepong Y, Manthous CA. Patient, physician, and family member understanding of living wills. Am J Respir Crit Care Med. 2002;166:1430–5.
  • Emanuel EJ, Emanuel LL. The economics of dying. The illusion of cost savings at the end of life. N Engl J Med. 1994;330:540–4.
  • Teno J, Lynn J, Phillips R, et al. Do advance directives save resources? Clin Res. 1993;41:551A.
  • Curtis JR, Patrick DL, Caldwell ES, Collier AC. Why don't patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians. Arch Intern Med. 2000;160:1690–6.
  • Hawkins NA, Ditto PH, Danks JH, Smucker WD. Micromanaging death: process preferences, values, and goals in end-of-life medical decision making. Gerontologist. 2005;45:107–17.
  • 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;22:727–37.
  • 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;161:431–40.
  • Miura Y, Asai A, Matsushima M, Nagata S, Onishi M, Shimbo T, et al. Families' and physicians' predictions of dialysis patients' preferences regarding life-sustaining treatments in Japan. Am J Kidney Dis. 2006;47:122–30.
  • Pruchno RA, Lemay EP Jr, Feild L, Levinsky NG. Predictors of patient treatment preferences and spouse substituted judgments: the case of dialysis continuation. Med Decis Making. 2006;26:112–21.
  • Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med. 2006;166:493–7.
  • Zettel-Watson L, Ditto PH, Danks JH, Smucker WD. Actual and perceived gender differences in the accuracy of surrogate decisions about life-sustaining medical treatment among older spouses. Death Studies. 2008;32:273–90.
  • Salmond SW, David E. Attitudes toward advance directives and advance directive completion rates. Orthop Nurs. 2005;24:117–27.
  • Sessanna L, Jezewski MA. Advance directive decision making among independent community-dwelling older adults: a systematic review of health science literature. J Appl Gerontol. 2008;27:486–510.
  • Jezewski MA, Meeker MA, Sessanna L, Finnell DS. The effectiveness of interventions to increase advance directive completion rates. J Aging Health. 2007;19:519–36.
  • McAuley WJ, Buchanan RJ, Travis SS, Wang S, Kim M. Recent trends in advance directives at nursing home admission and one year after admission. Gerontologist. 2006;46:377–81.
  • Rao JK, Anderson LA, Lin F-C, Laux JP. Completion of advance directives among US consumers. Am J Prevent Med. 2014;46:65–70.
  • Astrow AB, Sood JR, Nolan MT, Terry PB, Clawson L, Kub J, et al. Decision-making in patients with advanced cancer compared with amyotrophic lateral sclerosis. J Med Ethics. 2008;34:664–8.
  • Borasio GD, Shaw PJ, Hardiman O, Ludolph AC, Sales Luis ML, Silani V, et al. Standards of palliative care for patients with amyotrophic lateral sclerosis: results of a European survey. Amyotroph Lateral Scler Other Motor Neuron Disord. 2001;2:159–64.
  • Miller RG, Brooks BR, Swain-Eng RJ, Basner RC, Carter GT, Casey P, et al. Quality improvement in neurology: amyotrophic lateral sclerosis quality measures: report of the quality measurement and reporting subcommittee of the American Academy of Neurology. Neurology. 2013;81:2136–40.
  • Young JM, Marshall CL, Anderson EJ. Amyotrophic lateral sclerosis patients' perspectives on use of mechanical ventilation. Health Soc Work. 1994;19:253–60.
  • Silverstein MD, Stocking CB, Antel JP, Beckwith J, Roos RP, Siegler M. Amyotrophic lateral sclerosis and life-sustaining therapy: patients' desires for information, participation in decision making, and life-sustaining therapy. Mayo Clin Proc. 1991;66:906–13.
  • Hayashi H, Oppenheimer EA. ALS patients on TPPV: totally locked-in state, neurologic findings and ethical implications. Neurology. 2003;61:135–7.
  • Moss AH, Oppenheimer EA, Casey P, Cazzolli PA, Roos RP, Stocking CB, et al. Patients with amyotrophic lateral sclerosis receiving long-term mechanical ventilation. Advance care planning and outcomes. Chest. 1996;110:249–55.
  • Amyotrophic Lateral Sclerosis Association. 2007. Available at: http://www.alsa.org/als-care/resources/publications-videos/videos/
  • Muscular Dystrophy Association. 2013. Available at: https://www.mda.org/services/educational-materials.
  • Benditt JO, Smith TS, Tonelli MR. Empowering the individual with ALS at the end-of-life: disease-specific advance care planning. Muscle Nerve. 2001;24:1706–9.
  • Wilkinson G. WRAT-3: Wide Range Achievement Test, Administration Manual. Wilmington (DE): Wide Range, Inc; 1993.
  • Folstein MF, Folstein SE, McHugh PR. “Mini-mental state. A practical method for grading the cognitive state of patients for the clinician”. J Psychiatr Res. 1975;12:189–98.
  • Jain NL, Kahn MG. Using knowledge maintenance for preference assessment. Proc Annu Symp Comput Appl Med Care. American Medical Informatics Association; 1995;263–9.
  • Torrance GW, Feeny DH, Furlong WJ, Barr RD, Zhang Y, Wang Q. Multiattribute utility function for a comprehensive health status classification system. Health Utilities Index Mark 2. Med Care. 1996;34:702–22.
  • Green MJ, Levi BH. Development of an interactive computer program for advance care planning. Health Expectat. 2009;12:60–9.
  • Levi BH, Green MJ. Too Soon to give up? Re-examining the value of advance directives. Am J Bioethics. 2010;10:1–14.
  • Green MJ, Levi BH, Farace E, Acceptability and accuracy of a computer-generated advance directive. Society for Medical Decision Making 29th National Meeting; October 23; Pittsburgh, PA; 2007.
  • Schubart JR, Levi BH, Camacho F, Whitehead M, Farace E, Green MJ. Reliability of an interactive computer program for advance care planning. J Palliat Med. 2012;15:637–42.
  • Levi BH, Heverley SR, Green MJ. Accuracy of a decision aid for advance care planning: simulated end-of-life decision making. J Clin Ethics. 2011;22:223–38.
  • Hossler C, Levi BH, Simmons Z, Green MJ. Advance care planning for patients with ALS: Feasibility of an interactive computer program. Amyotroph Lateral Scler. 2011;12:172–7.
  • Pellino T, Tluczek A, Collins M, Trimborn S, Norwick H, Engelke ZK, et al. Increasing self-efficacy through empowerment: preoperative education for orthopaedic patients. Orthop Nurs. 1998;17:48–51.
  • Green MJ, Schubart JR, Whitehead MM, Farace E, Lehman E, Levi BH. Advance care planning does not adversely affect hope or anxiety among patients with advanced cancer. J Pain Symptom Manage. 2015;49:1088–96.
  • Spielberger CD, Sydeman SJ, Owen AE, Marsh BJ, Measuring anxiety and anger with the State-Trait Anxiety Inventory (STAI) and the State-Trait Anger Expression Inventory (STAXI). In: Maruish ME, ed. The use of psychological testing for treatment planning and outcomes assessment. 2nd ed. Mahwah, NJ: Lawrence Erlbaum Associates, Inc.; 1999:993–1021.
  • Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. J Neurol Sci. 1999;169:13–21.
  • Simmons Z, Felgoise SH, Bremer BA, Walsh SM, Hufford DJ, Bromberg MB, et al. The ALSSQOL: balancing physical and nonphysical factors in assessing quality of life in ALS. Neurology. 2006;67:1659–64.
  • O'Connor AM. Validation of a decisional conflict scale. Med Decision Making. 1995;15:25–30.
  • Holmes-Rovner M, Kroll J, Schmitt N, Rovner DR, Breer ML, Rothert ML, et al. Patient satisfaction with health care decisions: The satisfaction with decision scale. Med Decision Making. 1996;16:58–64.
  • Downey L, Au DH, Curtis JR, Engelberg RA. Life-sustaining treatment preferences: matches and mismatches between patients' preferences and clinicians' perceptions. J Pain Symptom Manage. 2013;46:9–19.
  • Van Scoy LJ, Green MJ, Dimmock AE, Bascom R, Boehmer JP, Hensel JK, et al. High satisfaction and low decisional conflict with advance care planning among chronically ill patients with advanced chronic obstructive pulmonary disease or heart failure using an online decision aid: a pilot study. Chronic Illn. 2016;12:227–35.
  • Markham SA, Levi BH, Green MJ, Schubart JR. Use of a computer program for advance care planning with African American Participants. J Natl Med Assoc. 2015;107:26–32.
  • Schubart JR, Camacho F, Green MJ, Rush KA, Levi BH. Assessing the internal consistency and temporal stability of advance directives generated by an interactive, online computer program. BMJ Support Palliat Care. 2015. doi:10.1136bmjspc-2014

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