Advance Care Planning Among Older Adults With Advanced Non-Dialysis-Dependent CKD and Their Care Partners: Perceptions Versus Reality?

Tira Oskoui, Renuka Pandya, Daniel E Weiner, John B Wong, Susan Koch-Weser, Keren Ladin, Tira Oskoui, Renuka Pandya, Daniel E Weiner, John B Wong, Susan Koch-Weser, Keren Ladin

Abstract

Rationale & objective: Older patients with advanced chronic kidney disease (CKD) use intensive care at the end of life and die in a hospital more frequently than patients with cancer or heart disease. Advance care planning (ACP) can help align treatment with patient preferences and improve patient-centered care, yet ACP quality and experiences among older patients with CKD and their care partners remain incompletely understood, particularly among the non-dialysis-dependent population.

Study design: In-person interviewer-administered surveys of patients 70 years and older with non-dialysis-dependent CKD stage 4 or 5 and their self-identified care partners.

Setting & participants: 42 participants (31 patients, 11 care partners) at 2 clinical sites in greater Boston.

Outcomes: Completion of advance directives and self-reported perceptions, preferences, and experiences of ACP.

Analytical approach: Descriptive analysis of patient and care partner surveys. McNemar test analysis to compare patient and care partner responses.

Results: Most patients had written advance directives (64%) and surrogate decision makers (81%). Although patients reported positive perceptions and high trust in their clinicians' judgment, few (16%) had actually discussed preferences for life-sustaining treatment with their nephrologists. Few ACP discussions included components reflective of high-quality ACP: 16% of patients had been asked about their values concerning end-of-life care and 7% had discussed issues of decision-making capacity and consent to care should their health decline. When presented with 2 hypothetical scenarios (stroke/heart attack or dementia), nearly all patients and care partners reported a preference for comfort care over delaying death. Care partners were more likely than patients to report that they had experienced discussion components reflective of high-quality ACP with the clinical team.

Limitations: Single metropolitan area; most patients did not identify a care partner; nonresponse bias and small sample size.

Conclusions: Patients often believed that their clinicians understood their end-of-life wishes despite not having engaged in ACP conversations that would make those wishes known. Improving clinical ACP communication may result in end-of-life treatment that better aligns with patient goals.

Keywords: Decision-making; advance care planning; advance directives; caregiving; kidney disease; shared decision-making.

© 2020 The Authors.

Figures

Figure 1
Figure 1
Interconnected components of high-quality patient-centered advance care planning (ACP) for patients with advanced chronic kidney disease. Informed by the Sinuff et al (2015) list of ACP quality indicators.

References

    1. Berger I., Wu S., Masson P. Cognition in chronic kidney disease: a systematic review and meta-analysis. BMC Med. 2016;14(1):206.
    1. Davison S.N., Torgunrud C. The creation of an advance care planning process for patients with ESRD. Am J Kidney Dis. 2007;49(1):27–36.
    1. Kurella M., Chertow G.M., Fried L.F. Chronic kidney disease and cognitive impairment in the elderly: the Health, Aging, and Body Composition Study. J Am Soc Nephrol. 2005;16(7):2127–2133.
    1. Wachterman M.W., O'Hare A.M., Rahman O.K. One-year mortality after dialysis initiation among older adults. JAMA Intern Med. 2019;179(7):987–990.
    1. Saran R., Robinson B., Abbott K.C. US Renal Data System 2018 Annual Data Report: epidemiology of kidney disease in the United States. Am J Kidney Dis. 2019;73:A7–A8.
    1. Wong S.P., Kreuter W., O’Hare A.M. Treatment intensity at the end of life in older adults receiving long-term dialysis. Arch Intern Med. 2012;172(8):661–663.
    1. Wong S.P., McFarland L.V., Liu C.-F., Laundry R.J., Hebert P.L., O’Hare A.M. Care practices for patients with advanced kidney disease who forgo maintenance dialysis. JAMA Intern Med. 2019;179(3):305–313.
    1. Sudore R.L., Lum H.D., You J.J. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage. 2017;53(5):821–832. e821.
    1. Ladin K., Buttafarro K., Hahn E., Koch-Weser S., Weiner D.E. “End-of-life care? I’m not going to worry about that yet.” Health literacy gaps and end-of-life planning among elderly dialysis patients. Gerontologist. 2017;58(2):290–299.
    1. Brinkman-Stoppelenburg A., Rietjens J.A., van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;28(8):1000–1025.
    1. Briggs L.A., Kirchhoff K.T., Hammes B.J., Song M.-K., Colvin E.R. Patient-centered advance care planning in special patient populations: a pilot study. J Prof Nurs. 2004;20(1):47–58.
    1. Detering K.M., Hancock A.D., Reade M.C., Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345.
    1. Kirchhoff K.T., Hammes B.J., Kehl K.A., Briggs L.A., Brown R.L. Effect of a disease-specific advance care planning intervention on end-of-life care. J Am Geriatr Soc. 2012;60(5):946–950.
    1. Song M.-K., Ward S.E., Fine J.P. Advance care planning and end-of-life decision making in dialysis: a randomized controlled trial targeting patients and their surrogates. Am J Kidney Dis. 2015;66(5):813–822.
    1. Hines S.C., Glover J.J., Holley J.L., Babrow A.S., Badzek L.A., Moss A.H. Dialysis patients' preferences for family-based advance care planning. Ann Intern Med. 1999;130(10):825–828.
    1. Holley J.L., Stackiewicz L., Dacko C., Rault R. Factors influencing dialysis patients' completion of advance directives. Am J Kidney Dis. 1997;30(3):356–360.
    1. Luckett T., Sellars M., Tieman J. Advance care planning for adults with CKD: a systematic integrative review. Am J Kidney Dis. 2014;63(5):761–770.
    1. Ladin K., Lin N., Hahn E., Zhang G., Koch-Weser S., Weiner D.E. Engagement in decision-making and patient satisfaction: a qualitative study of older patients' perceptions of dialysis initiation and modality decisions. Nephrol Dial Transplant. 2016;32(8):1394–1401.
    1. Davison S.N., Simpson C. Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ. 2006;333(7574):886.
    1. McMahan R.D., Knight S.J., Fried T.R., Sudore R.L. Advance care planning beyond advance directives: perspectives from patients and surrogates. J Pain Symptom Manage. 2013;46(3):355–365.
    1. Sinuff T., Dodek P., You J.J. Improving end-of-life communication and decision making: the development of a conceptual framework and quality indicators. J Pain Symptom Manage. 2015;49(6):1070–1080.
    1. Tangri N., Grams M.E., Levey A.S. Multinational assessment of accuracy of equations for predicting risk of kidney failure: a meta-analysis. JAMA. 2016;315(2):164–174.
    1. Burt R.S. Network items and the general social survey. Social Networks. 1984;6(4):293–339.
    1. Hays R.D., Kallich J.D., Mapes D.L., Coons S.J., Carter W.B. Development of the Kidney Disease Quality of Life (KDQOL TM) instrument. Qual Life Res. 1994;3(5):329–338.
    1. Spector W.D., Fleishman J.A. Combining activities of daily living with instrumental activities of daily living to measure functional disability. J Gerontol B Psychol Sci Soc Sci. 1998;53(1):S46–S57.
    1. Curtisa J.R., Patrick D.L., Caldwell E., Greenlee H., Collier A.C. The quality of patient-doctor communication about end-of-life care: a study of patients with advanced AIDS and their primary care clinicians. AIDS. 1999;13(9):1123–1131.
    1. Saha S., Arbelaez J.J., Cooper L.A. Patient–physician relationships and racial disparities in the quality of health care. Am J Public Health. 2003;93(10):1713–1719.
    1. Renal Physicians Association Working Group; Rockville, MD: 2010. Shared decision-making in the appropriate initiation of and withdrawal from dialysis: Clinical practice guidelines. . Accessed July 20, 2019.
    1. Sellars M., Clayton J.M., Morton R.L. An interview study of patient and caregiver perspectives on advance care planning in ESRD. Am J Kidney Dis. 2018;71(2):216–224.
    1. Couchoud C., Hemmelgarn B., Kotanko P., Germain M.J., Moranne O., Davison S.N. Supportive care: time to change our prognostic tools and their use in CKD. Clin J Am Soc Nephrol. 2016;11(10):1892–1901.
    1. Holley J.L. Advance care planning in CKD/ESRD: an evolving process. Clin J Am Soc Nephrol. 2012;7(6):1033–1038.
    1. Enzinger A.C., Zhang B., Schrag D., Prigerson H.G. Outcomes of prognostic disclosure: associations with prognostic understanding, distress, and relationship with physician among patients with advanced cancer. J Clin Oncol. 2015;33(32):3809–3816.
    1. Ladin K., Pandya R., Kannam A. Discussing conservative management with older patients with CKD: an interview study of nephrologists. Am J Kidney Dis. 2018;71(5):627–635.
    1. Wendler D., Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):336–346.
    1. Carson R.C., Bernacki R. Is the end in sight for the “don’t ask, don’t tell” approach to advance care planning? Clin J Am Soc Nephrol. 2017;12(3):380–381.
    1. Silveira M.J., Kim S.Y., Langa K.M. Advance directives and outcomes of surrogate decision making before death. N Engl J Med. 2010;362(13):1211–1218.
    1. Wong S.P., Hebert P.L., Laundry R.J. Decisions about renal replacement therapy in patients with advanced kidney disease in the US Department of Veterans Affairs, 2000–2011. Clin J Am Soc Nephrol. 2016;11(10):1825–1833.
    1. Combs S.A. Working toward more effective advance care planning in patients with ESRD. Clin J Am Soc Nephrol. 2016;11(12):2107–2109.
    1. Executive Order on Advancing American Kidney Health.

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