Concordance Between Proxy Level of Care Preference and Advance Directives Among Nursing Home Residents With Advanced Dementia: A Cluster Randomized Clinical Trial

Simon M Cohen, Angelo E Volandes, Michele L Shaffer, Laura C Hanson, Daniel Habtemariam, Susan L Mitchell, Simon M Cohen, Angelo E Volandes, Michele L Shaffer, Laura C Hanson, Daniel Habtemariam, Susan L Mitchell

Abstract

Context: Care consistent with goals is the desired outcome of advance care planning (ACP).

Objectives: The objectives of this study were to examine concordance between advance directives and proxy care preferences among nursing home residents with advanced dementia and to determine the impact of an ACP video on concordance.

Methods: Data were from Educational Video to Improve Nursing home Care in End-stage dementia, a cluster randomized clinical trial conducted in 64 Boston-area facilities (32/arm) from 2013 to 2017. Participants included advanced dementia residents and their proxies (N = 328 dyads). At the baseline and quarterly (up to 12 months), proxies stated their preferred level of care for the resident (comfort, basic, or intensive) and advance directives for specific treatments (resuscitation, hospitalization, tube-feeding, intravenous hydration, antibiotics) were abstracted from the charts. At the baseline, proxies in intervention facilities viewed an ACP video. Their care preferences after viewing it were shared via a written communication with the primary care team. At each assessment, concordance between directives and proxy preferences was determined.

Results: Among the residents (mean age, 86.6 years; 19.5% male), the most prevalent directive was DNR (89.3%) and foregoing antibiotics was least common (parenteral, 8.2%; any type, 4.0%). Concordance between directives and each level of care preference was as follows: comfort, 7%; basic, 49%; and intensive, 58%. When comfort care was preferred, concordance was higher in intervention versus control facilities (10.8% vs. 2.5%; adjusted odds ratio, 2.48; 95% CI, 1.01-6.09).

Conclusion: Better alignment between preferences for comfort-focused care and advance directives is needed in advanced dementia. An ACP video may help achieve that goal.

Keywords: Dementia; advance care planning; advance directives; cluster randomized clinical trial; nursing home; preferences.

Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Figures

Figure 1
Figure 1
Comparison of concordance between trial arms by proxy level of care preference. Any preference, AOR=1.37, 95% CI=0.82–2.27, P=0.230; comfort care preference, AOR=2.52, 95% CI=1.03–6.17, P=0.042; basic medical care preference, AOR=0.86, 95% CI=0.42–1.74, P=0.671; intensive medical care preference, AOR=1.83, 95% CI=0.43–7.79, P=0.414.

References

    1. Mitchell SL, Teno JM, Roy J, Kabumoto G, Mor V. Clinical and organizational factors associated with feeding tube use among nursing home residents with advanced cognitive impairment. JAMA. 2003;290(1):73–80.
    1. Mitchell SL, Kiely DK, Hamel MB. Dying with advanced dementia in the nursing home. Arch Intern Med. 2004;164(3):321–326.
    1. Gozalo P, Teno JM, Mitchell SL, et al. End-of-life transitions among nursing home residents with cognitive issues. N Engl J Med. 2011;365(13):1212–1221.
    1. Givens JL, Jones RN, Shaffer ML, Kiely DK, Mitchell SL. Survival and comfort after treatment of pneumonia in advanced dementia. Arch Intern Med. 2010;170(13):1102–1107.
    1. Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361(16):1529–1538.
    1. Mitchell SL, Teno JM, Intrator O, Feng ZL, Mor V. Decisions to forgo hospitalization in advanced dementia: A nationwide study. J. Am. Geriatr. Soc 2007;55(3):432–438.
    1. Kiely DK, Givens JL, Shaffer ML, Teno JM, Mitchell SL. Hospice use and outcomes in nursing home residents with advanced dementia. J Am Geriatr Soc. 2010;58(12):2284–2291.
    1. Goldfeld KS, Stevenson DG, Hamel MB, Mitchell SL. Medicare expenditures among nursing home residents with advanced dementia. Arch Intern Med. 2011;171(9):824–830.
    1. Mitchell SL, Kiely DK, Lipsitz LA. The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment. Arch Intern Med. 1997;157(3):327–332.
    1. Engel SE, Kiely DK, Mitchell SL. Satisfaction with end-of-life care for nursing home residents with advanced dementia. J Am Geriatr Soc. 2006;54(10):1567–1572.
    1. Sudore RL, Heyland DK, Lum HD, et al. Outcomes That Define Successful Advance Care Planning: A Delphi Panel Consensus. Journal of Pain and Symptom Management. 2018;55(2):245–255.e248.
    1. Dy SM, Kiley KB, Ast K, et al. Measuring What Matters: Top-Ranked Quality Indicators for Hospice and Palliative Care From the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association. Journal of Pain and Symptom Management. 2015;49(4):773–781.
    1. Unroe KT, Hickman SE, Torke AM, Grp ARCW. Care Consistency With Documented Care Preferences: Methodologic Considerations for Implementing the “Measuring What Matters” Quality Indicator. Journal of Pain and Symptom Management. 2016;52(4):453–458.
    1. Sepucha K, Ozanne EM. How to define and measure concordance between patients’ preferences and medical treatments: A systematic review of approaches and recommendations for standardization. Patient Educ. Couns 2010;78(1):12–23.
    1. Johnson SB, Butow PN, Kerridge I, Bell ML, Tattersall MHN. How Well Do Current Measures Assess the Impact of Advance Care Planning on Concordance Between Patient Preferences for End-of-Life Care and the Care Received: A Methodological Review. Journal of Pain and Symptom Management. 2018;55(2):480–495.
    1. Ernecoff NC, Zimmerman S, Mitchell SL, et al. Concordance between Goals of Care and Treatment Decisions for Persons with Dementia. J. Palliat. Med In press.
    1. El-Jawahri A, Paasche-Orlow MK, Matlock D, et al. Randomized, Controlled Trial of an Advance Care Planning Video Decision Support Tool for Patients With Advanced Heart Failure. Circulation. 2016;134(1):52–60.
    1. El-Jawahri A, Podgurski LM, Eichler AF, et al. Use of video to facilitate end-of-life discussions with patients with cancer: a randomized controlled trial. J Clin Oncol. 2010;28(2):305–310.
    1. Volandes AE, Ferguson LA, Davis AD, et al. Assessing end-of-life preferences for advanced dementia in rural patients using an educational video: a randomized controlled trial. J Palliat Med. 2011;14(2):169–177.
    1. Volandes AE, Levin TT, Slovin S, et al. Augmenting Advance Care Planning in Poor Prognosis Cancer with a Video Decision Aid: A Pre-Post Study. Cancer. 2012;118(17):4331–4338.
    1. Volandes AE, Barry MJ, Chang YC, Paasche-Orlow MK. Improving Decision Making at the End of Life With Video Images. Med. Decis. Mak 2010;30(1):29–34.
    1. Volandes AE, Lehmann LS, Cook EF, Shaykevich S, Abbo ED, Gillick MR. Using video images of dementia in advance care planning. Arch Intern Med. 2007;167(8):828–833.
    1. Volandes AE, Mitchell SL, Gillick MR, Chang Y, Paasche-Orlow MK. Using video images to improve the accuracy of surrogate decision-making: a randomized controlled trial. J Am Med Dir Assoc. 2009;10(8):575–580.
    1. Volandes AE, Paasche-Orlow MK, Barry MJ, et al. Video decision support tool for advance care planning in dementia: randomised controlled trial. BMJ. 2009;338:b2159.
    1. Hanson LC, Zimmerman S, Song MK, et al. Effect of the Goals of Care Intervention for Advanced Dementia: A Randomized Clinical Trial. JAMA Intern Med. 2017;177(1):24–31.
    1. Paradigm NP. Elements of a POLST Paradigm Form. 2018.
    1. Heyland DK, Barwich D, Pichora D, et al. Failure to Engage Hospitalized Elderly Patients and Their Families in Advance Care Planning. JAMA Intern. Med 2013;173(9):778–787.
    1. You JJ, Dodek P, Lamontagne F, et al. What really matters in end-of-life discussions? Perspectives of patients in hospital with serious illness and their families. Can. Med. Assoc. J 2014;186(18):E679–E687.
    1. Mitchell SL, Shaffer ML, Cohen S, Hanson LC, Habtemariam D, Volandes AE. An Advance Care Planning Video Decision Support Tool for Nursing Home Residents with Advanced Dementia: A Cluster Randomized Clinical Trial. JAMA Intern Med. In press.
    1. Reisberg B, Ferris SH, de Leon MJ, Crook T. The Global Deterioration Scale for assessment of primary degenerative dementia. Am J Psychiatry. 1982;139(9):1136–1139.
    1. Volicer L, Hurley AC, Lathi DC, Kowall NW. Measurement of severity in advanced Alzheimer’s disease. J Gerontol. 1994;49(5):M223–226.
    1. Albert M, Cohen C. The Test for Severe Impairment: an instrument for the assessment of patients with severe cognitive dysfunction. J Am Geriatr Soc. 1992;40(5):449–453.
    1. Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA. 1999;282(14):1365–1370.
    1. Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med. 2000;342(3):206–210.
    1. Mitchell SL, Shaffer ML, Loeb MB, et al. Infection management and multidrug-resistant organisms in nursing home residents with advanced dementia. JAMA Intern Med. 2014;174(10):1660–1667.
    1. Tjia J, Dharmawardene M, Givens JL. Advance Directives among Nursing Home Residents with Mild, Moderate, and Advanced Dementia. J. Palliat. Med 2018;21(1):16–21.
    1. Dull SM, Graves JR, Larsen MP, Cummins RO. EXPECTED DEATH AND UNWANTED RESUSCITATION IN THE PREHOSPITAL SETTING. Ann. Emerg. Med 1994;23(5):997–1002.
    1. Finucane TE, Harper GM. Attempting resuscitation in nursing homes: Policy considerations. J. Am. Geriatr. Soc 1999;47(10):1261–1264.
    1. Gaw CE, Hamilton KW, Gerber JS, Szymczak JE. Physician Perceptions Regarding Antimicrobial Use in End-of-Life Care. Infect. Control Hosp. Epidemiol 2018;39(4):383–390.
    1. Mitchell SL, Teno JM, Intrator O, Feng Z, Mor V. Decisions to forgo hospitalization in advanced dementia: a nationwide study. J Am Geriatr Soc. 2007;55(3):432–438.

Source: PubMed

3
Sottoscrivi