Advance Care Planning in Older Adults with CKD: Patient, Care Partner, and Clinician Perspectives.
Adult
Advance Care Planning
/ statistics & numerical data
Aged
Aged, 80 and over
Attitude of Health Personnel
Caregivers
Communication
Education, Medical
Female
Health Knowledge, Attitudes, Practice
Healthcare Disparities
Humans
Insurance, Health, Reimbursement
Interviews as Topic
Kidney Failure, Chronic
/ complications
Male
Middle Aged
Minority Groups
Patient Care Planning
Patient Preference
Physician's Role
Physicians
/ economics
Prognosis
Time Factors
United States
advance care planning
advance directives
chronic kidney disease
chronic kidney failure
disparities
ethnic minority
patient centered
qualitative
quality of life
Journal
Journal of the American Society of Nephrology : JASN
ISSN: 1533-3450
Titre abrégé: J Am Soc Nephrol
Pays: United States
ID NLM: 9013836
Informations de publication
Date de publication:
01 06 2021
01 06 2021
Historique:
received:
10
09
2020
accepted:
09
02
2021
pubmed:
9
4
2021
medline:
5
10
2021
entrez:
8
4
2021
Statut:
ppublish
Résumé
Older patients with advanced CKD are at high risk for serious complications and death, yet few discuss advance care planning (ACP) with their kidney clinicians. Examining barriers and facilitators to ACP among such patients might help identify patient-centered opportunities for improvement. In semistructured interviews in March through August 2019 with purposively sampled patients (aged ≥70 years, CKD stages 4-5, nondialysis), care partners, and clinicians at clinics in across the United States, participants described discussions, factors contributing to ACP completion or avoidance, and perceived value of ACP. We used thematic analysis to analyze data. We conducted 68 semistructured interviews with 23 patients, 19 care partners, and 26 clinicians. Only seven of 26 (27%) clinicians routinely discussed ACP. About half of the patients had documented ACP, mostly outside the health care system. We found divergent ACP definitions and perspectives; kidney clinicians largely defined ACP as completion of formal documentation, whereas patients viewed it more holistically, wanting discussions about goals, prognosis, and disease trajectory. Clinicians avoided ACP with patients from minority groups, perceiving cultural or religious barriers. Four themes and subthemes informing variation in decisions to discuss ACP and approaches emerged: ( Patients, care partners, and clinicians hold discordant views about the responsibility for discussing ACP and the scope for it. This presents critical barriers to the process, leaving ACP insufficiently discussed with older adults with advanced CKD.
Sections du résumé
BACKGROUND
Older patients with advanced CKD are at high risk for serious complications and death, yet few discuss advance care planning (ACP) with their kidney clinicians. Examining barriers and facilitators to ACP among such patients might help identify patient-centered opportunities for improvement.
METHODS
In semistructured interviews in March through August 2019 with purposively sampled patients (aged ≥70 years, CKD stages 4-5, nondialysis), care partners, and clinicians at clinics in across the United States, participants described discussions, factors contributing to ACP completion or avoidance, and perceived value of ACP. We used thematic analysis to analyze data.
RESULTS
We conducted 68 semistructured interviews with 23 patients, 19 care partners, and 26 clinicians. Only seven of 26 (27%) clinicians routinely discussed ACP. About half of the patients had documented ACP, mostly outside the health care system. We found divergent ACP definitions and perspectives; kidney clinicians largely defined ACP as completion of formal documentation, whereas patients viewed it more holistically, wanting discussions about goals, prognosis, and disease trajectory. Clinicians avoided ACP with patients from minority groups, perceiving cultural or religious barriers. Four themes and subthemes informing variation in decisions to discuss ACP and approaches emerged: (
CONCLUSIONS
Patients, care partners, and clinicians hold discordant views about the responsibility for discussing ACP and the scope for it. This presents critical barriers to the process, leaving ACP insufficiently discussed with older adults with advanced CKD.
Identifiants
pubmed: 33827902
pii: 00001751-202106000-00025
doi: 10.1681/ASN.2020091298
pmc: PMC8259659
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
1527-1535Subventions
Organisme : NCATS NIH HHS
ID : UL1 TR001422
Pays : United States
Commentaires et corrections
Type : CommentIn
Informations de copyright
Copyright © 2021 by the American Society of Nephrology.
Références
Briggs LA, Kirchhoff KT, Hammes BJ, Song M-K, Colvin ER: Patient-centered advance care planning in special patient populations: A pilot study. J Prof Nurs 20: 47–58, 2004 15011193
Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, Pantilat SZ, et al.: Defining advance care planning for adults: A consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage 53: 821–832. e1, 2017
Verberne WR, Geers AB, Jellema WT, Vincent HH, van Delden JJ, Bos WJ: Comparative survival among older adults with advanced kidney disease managed conservatively versus with dialysis. Clin J Am Soc Nephrol 11: 633–640, 2016 10.2215/CJN.07510715 26988748
doi: 10.2215/CJN.07510715
Wachterman MW, O’Hare AM, Rahman OK, Lorenz KA, Marcantonio ER, Alicante GK, et al.: One-year mortality after dialysis initiation among older adults. JAMA Intern Med 179: 987–990, 2019 10.1001/jamainternmed.2019.0125 31009039
doi: 10.1001/jamainternmed.2019.0125
Saran R, Robinson B, Abbott KC, Agodoa LYC, Bragg-Gresham J, Balkrishnan R, et al.: US renal data system 2018 annual data report: Epidemiology of kidney disease in the United States. Am J Kidney Dis 73[Suppl 1]: A7–A8, 2019 30798791
Wong SP, Kreuter W, O’Hare AM: Treatment intensity at the end of life in older adults receiving long-term dialysis. Arch Intern Med 172: 661–663; discussion 663–664, 2012 22529233
Wachterman MW, Lipsitz SR, Lorenz KA, Marcantonio ER, Li Z, Keating NL: End-of-life experience of older adults dying of end-stage renal disease: A comparison with cancer. J Pain Symptom Manage 54: 789–797, 2017 28843455
Reich AJ, Jin G, Gupta A, Kim D, Lipstiz S, Prigerson HG, et al.: Utilization of ACP CPT codes among high-need Medicare beneficiaries in 2017: A brief report. PLoS One 15: e0228553, 2020 10.1371/journal.pone.0228553 32023311
doi: 10.1371/journal.pone.0228553
Kurella Tamura M, Liu S, Montez-Rath ME, O’Hare AM, Hall YN, Lorenz KA: Persistent gaps in use of advance directives among nursing home residents receiving maintenance dialysis. JAMA Intern Med 177: 1204–1205, 2017 10.1001/jamainternmed.2017.1618 28520863
doi: 10.1001/jamainternmed.2017.1618
Ladin K, Lin N, Hahn E, Zhang G, Koch-Weser S, Weiner DE: Engagement in decision-making and patient satisfaction: A qualitative study of older patients’ perceptions of dialysis initiation and modality decisions. Nephrol Dial Transplant 32: 1394–1401, 2017 27576590
Ladin K, Buttafarro K, Hahn E, Koch-Weser S, Weiner DE: “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 58: 290–299, 2018 28329829
Wachterman MW, Marcantonio ER, Davis RB, Cohen RA, Waikar SS, Phillips RS, et al.: Relationship between the prognostic expectations of seriously ill patients undergoing hemodialysis and their nephrologists. JAMA Intern Med 173: 1206–1214, 2013 10.1001/jamainternmed.2013.6036 23712681
doi: 10.1001/jamainternmed.2013.6036
Baddour NA, Siew ED, Robinson-Cohen C, Salat H, Mason OJ, Stewart TG, et al.: Serious illness treatment preferences for older adults with advanced CKD. J Am Soc Nephrol 30: 2252–2261, 2019 10.1681/ASN.2019040385 31511360
doi: 10.1681/ASN.2019040385
Saeed F, Sardar MA, Davison SN, Murad H, Duberstein PR, Quill TE: Patients’ perspectives on dialysis decision-making and end-of-life care. Clin Nephrol 91: 294–300, 2019 10.5414/CN109608 30663974
doi: 10.5414/CN109608
Goff SL, Eneanya ND, Feinberg R, Germain MJ, Marr L, Berzoff J, et al.: Advance care planning: A qualitative study of dialysis patients and families. Clin J Am Soc Nephrol 10: 390–400, 2015 10.2215/CJN.07490714 25680737
doi: 10.2215/CJN.07490714
Saeed F, Ladwig SA, Epstein RM, Monk RD, Duberstein PR: Dialysis regret: Prevalence and correlates. Clin J Am Soc Nephrol 15: 957–963, 2020 10.2215/CJN.13781119 32499230
doi: 10.2215/CJN.13781119
Davison SN, Simpson C: Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. BMJ 333: 886, 2006 16990294
Gilman EA, Feely MA, Hildebrandt D, Edakkanambeth Varayil J, Chong EY, Williams AW, et al.: Do patients receiving hemodialysis regret starting dialysis? A survey of affected patients. Clin Nephrol 87: 117–123, 2017 10.5414/CN109030 28128729
doi: 10.5414/CN109030
Schell JO, Patel UD, Steinhauser KE, Ammarell N, Tulsky JA: Discussions of the kidney disease trajectory by elderly patients and nephrologists: A qualitative study. Am J Kidney Dis 59: 495–503, 2012 10.1053/j.ajkd.2011.11.023 22221483
doi: 10.1053/j.ajkd.2011.11.023
Wong SPY, McFarland LV, Liu CF, Laundry RJ, Hebert PL, O’Hare AM: Care practices for patients with advanced kidney disease who forgo maintenance dialysis. JAMA Intern Med 179: 305–313, 2019 10.1001/jamainternmed.2018.6197 30667475
doi: 10.1001/jamainternmed.2018.6197
Parvez S, Abdel-Kader K, Pankratz VS, Song MK, Unruh M: Provider knowledge, attitudes, and practices surrounding conservative management for patients with advanced CKD. Clin J Am Soc Nephrol 11: 812–820, 2016 10.2215/CJN.07180715 27084874
doi: 10.2215/CJN.07180715
Patton M: Qualitative Evaluation and Research Methods, Beverly Hills, CA, Sage, 1990
Chase S, Narrative Inquiry: Multiple Lenses, Approaches and Voices, Thousand Oaks, CA, Sage Publications, 2005
Saldana J: The Coding Manual for Qualitative Researchers, Thousand Oaks, CA, Sage, 2012
Tong A, Sainsbury P, Craig J: Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int J Qual Health Care 19: 349–357, 2007 10.1093/intqhc/mzm042 17872937
doi: 10.1093/intqhc/mzm042
Oskoui T, Pandya R, Weiner DE, Wong JB, Koch-Weser S, Ladin K: Advance care planning among older adults with advanced non-dialysis-dependent CKD and their care partners: Perceptions versus reality? Kidney Med 2: 116–124, 2020 10.1016/j.xkme.2019.11.002 32734232
doi: 10.1016/j.xkme.2019.11.002
Couchoud C, Hemmelgarn B, Kotanko P, Germain MJ, Moranne O, Davison SN: Supportive care: Time to change our prognostic tools and their use in CKD. Clin J Am Soc Nephrol 11: 1892–1901, 2016 27510452
Holley JL: Advance care planning in CKD/ESRD: An evolving process. Clin J Am Soc Nephrol 7: 1033–1038, 2012 22461536
O’Hare AM, Szarka J, McFarland LV, Taylor JS, Sudore RL, Trivedi R, et al.: Provider perspectives on advance care planning for patients with kidney disease: Whose job is it anyway? Clin J Am Soc Nephrol 11: 855–866, 2016 10.2215/CJN.11351015 27084877
doi: 10.2215/CJN.11351015
Nair D, Cavanaugh KL: Measuring patient Activation as part of kidney disease policy: Are we there yet? J Am Soc Nephrol 31: 1435–1443, 2020 10.1681/ASN.2019121331 32527978
doi: 10.1681/ASN.2019121331
Mendu ML, Weiner DE: Health policy and kidney care in the United States: Core curriculum 2020. Am J Kidney Dis 76: 720–730, 2020 10.1053/j.ajkd.2020.03.028 32771281
doi: 10.1053/j.ajkd.2020.03.028
Eneanya ND, Labbe AK, Stallings TL, Percy S, Temel JS, Klaiman TA, et al.: Caring for older patients with advanced chronic kidney disease and considering their needs: A qualitative study. BMC Nephrol 21: 213, 2020 10.1186/s12882-020-01870-1 32493235
doi: 10.1186/s12882-020-01870-1
University of Michigan Kidney Epidemiology and Cost Center: End-stage renal disease physician level measures technical expert panel summary report., Available at: https://www.dialysisdata.org/sites/default/files/content/ESRD_Measures/Physician_Level_Measure_TEP_Summary_Report_09062018.pdf . Accessed December 15, 2020
Ladin K, Smith AK: Active medical management for patients with advanced kidney disease. JAMA Intern Med 179: 313–315, 2019 30667472
Belanger E, Loomer L, Teno JM, Mitchell SL, Adhikari D, Gozalo PL: Early utilization patterns of the new Medicare procedure codes for advance care planning. JAMA Intern Med 179: 829–830, 2019 10.1001/jamainternmed.2018.8615 30855641
doi: 10.1001/jamainternmed.2018.8615
Enzinger AC, Zhang B, Schrag D, Prigerson HG: Outcomes of prognostic disclosure: Associations with prognostic understanding, distress, and relationship with physician among patients with advanced cancer. J Clin Oncol 33: 3809–3816, 2015 26438121
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 340: c1345, 2010 20332506
Wendler D, Rid A: Systematic review: The effect on surrogates of making treatment decisions for others. Ann Intern Med 154: 336–346, 2011 21357911
Song M-K, Ward SE, Fine JP, Hanson LC, Lin F-C, Hladik GA, et al.: Advance care planning and end-of-life decision making in dialysis: A randomized controlled trial targeting patients and their surrogates. Am J Kidney Dis 66: 813–822, 2015 26141307
Eneanya ND, Olaniran K, Xu D, Waite K, Crittenden S, Hazar DB, et al.: Health literacy mediates racial disparities in cardiopulmonary resuscitation knowledge among chronic kidney disease patients. J Health Care Poor Underserved 29: 1069–1082, 2018 10.1353/hpu.2018.0080 30122684
doi: 10.1353/hpu.2018.0080
Eneanya ND, Wenger JB, Waite K, Crittenden S, Hazar DB, Volandes A, et al.: Racial disparities in end-of-life communication and preferences among chronic kidney disease patients. Am J Nephrol 44: 46–53, 2016 10.1159/000447097 27351650
doi: 10.1159/000447097
Foley RN, Sexton DJ, Drawz P, Ishani A, Reule S: Race, ethnicity, and end-of-life care in dialysis patients in the United States. J Am Soc Nephrol 29: 2387–2399, 2018 10.1681/ASN.2017121297 30093455
doi: 10.1681/ASN.2017121297
Wen Y, Jiang C, Koncicki HM, Horowitz CR, Cooper RS, Saha A, et al.: Trends and racial disparities of palliative care use among hospitalized patients with ESKD on dialysis. J Am Soc Nephrol 30: 1687–1696, 2019 10.1681/ASN.2018121256 31387926
doi: 10.1681/ASN.2018121256