Patients' perspectives on dialysis decision-making and end-of-life care

Fahad Saeed, Muhammad Adil Sardar, Sara N Davison, Haris Murad, Paul R Duberstein, Timothy Edward Quill, Fahad Saeed, Muhammad Adil Sardar, Sara N Davison, Haris Murad, Paul R Duberstein, Timothy Edward Quill

Abstract

Background: Few studies have explored dialysis patients' perspectives on dialysis decision-making and end-of-life-care (EoLC) preferences. We surveyed a racially diverse cohort of maintenance dialysis patients in the Cleveland, OH, USA, metropolitan area.

Materials and methods: In this cross-sectional study, we administered a 41-item questionnaire to 450 adult chronic dialysis patients. Items assessed patients' knowledge of their kidney disease as well as their attitudes toward chronic kidney disease (CKD) treatment issues and EoLC issues.

Results: The cohort included 67% Blacks, 27% Caucasians, 2.8% Hispanics, and 2.4% others. The response rate was 94% (423/450). Most patients considered it essential to obtain detailed information about their medical condition (80.6%) and prognosis (78.3%). Nearly 19% of respondents regretted their decision to start dialysis. 41% of patients would prefer treatment(s) aimed at relieving pain rather than prolonging life (30.5%), but a majority would want to be resuscitated (55.3%). Only 8.4% reported having a designated healthcare proxy, and 35.7% reported completing a living will. A significant percentage of patients wished to discuss their quality of life (71%), psychosocial and spiritual concerns (50.4%), and end-of-life issues (38%) with their nephrologist.

Conclusion: Most dialysis patients wish to have more frequent discussions about their disease, prognosis, and EoLC planning. Findings from this study can inform the design of future interventions. .

References

    1. Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life: End of Life Care is Inadequate in the US hospital. Institute of Medicine, Washington, DC, 2014.
    1. United States Renal Data System. Atlas of End-Stage Renal Disease in the United States, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, 2013.
    1. United States Renal Data System. Atlas of End-Stage Renal Disease in the United States, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, 2017.
    1. Davison S End-of-life Care Preferences and Needs: Perceptions of patients with Chronic Kidney disease. CJASN; 2010.
    1. Gilman EA Feely MA Hildebrandt D Edakkanambeth Varayil J Chong EY Williams AW Mueller PS Do patients receiving hemodialysis regret starting dialysis? A survey of affected patients. Clin Nephrol. 2017; 87: 117–123.
    1. Berkhout-Byrne N Gaasbeek A Mallat MJK Rabelink TJ Mooijaart SP Dekker FW van Buren M Regret about the decision to start dialysis: a cross-sectional Dutch national survey. Neth J Med. 2017; 75: 225–234.
    1. Eneanya ND Wenger JB Waite K Crittenden S Hazar DB Volandes A Temel JS Thadhani R Paasche-Orlow MK Racial Disparities in End-of-Life Communication and Preferences among Chronic Kidney Disease Patients. Am J Nephrol. 2016; 44: 46–53.
    1. Galla JH Clinical practice guideline on shared decision-making in the appropriate initiation of and withdrawal from dialysis. J Am Soc Nephrol. 2000; 11: 1340–1342.
    1. Holley JL Davison SN Advance care planning for patients with advanced CKD: a need to move forward. Clin J Am Soc Nephrol. 2015; 10: 344–346.
    1. Song MK Lin FC Gilet CA Arnold RM Bridgman JC Ward SE Patient perspectives on informed decision-making surrounding dialysis initiation. Nephrol Dial Transplant. 2013; 28: 2815–2823.
    1. Finkelstein FO Story K Firanek C Barre P Takano T Soroka S Mujais S Rodd K Mendelssohn D Perceived knowledge among patients cared for by nephrologists about chronic kidney disease and end-stage renal disease therapies. Kidney Int. 2008; 74: 1178–1184.
    1. 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. 2012; 59: 495–503.
    1. Morton RL Tong A Howard K Snelling P Webster AC The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies. BMJ. 2010; 340: c112.
    1. Mack JW Smith TJ Reasons why physicians do not have discussions about poor prognosis, why it matters, and what can be improved. J Clin Oncol. 2012; 30: 2715–2717.
    1. Collins AJ Foley RN Herzog C Excerpts from the US Renal Data System 2009 Annual Data Report. Am J Kidney Dis. 2010; 55: S1 A6–420 7.
    1. Smith AK Williams BA Lo B Discussing overall prognosis with the very elderly. N Engl J Med. 2011; 365: 2149–2151.
    1. Gramling R Fiscella K Xing G Hoerger M Duberstein P Plumb S Mohile S Fenton JJ Tancredi DJ Kravitz RL Epstein RM Determinants of Patient-Oncologist Prognostic Discordance in Advanced Cancer. JAMA Oncol. 2016; 2: 1421–1426.
    1. Wachterman MW Marcantonio ER Davis RB Cohen RA Waikar SS Phillips RS McCarthy EP Relationship between the prognostic expectations of seriously ill patients undergoing hemodialysis and their nephrologists. JAMA Intern Med. 2013; 173: 1206–1214.
    1. Miura Y Asai A Matsushima M Nagata S Onishi M Shimbo T Hosoya T Fukuhara S Families’ and physicians’ predictions of dialysis patients’ preferences regarding life-sustaining treatments in Japan. Am J Kidney Dis. 2006; 47: 122–130.
    1. Davison SN Jhangri GS Holley JL Moss AH Nephrologists’ reported preparedness for end-of-life decision-making. Clin J Am Soc Nephrol. 2006; 1: 1256–1262.
    1. Keating NL Landrum MB Rogers SO Baum SK Virnig BA Huskamp HA Earle CC Kahn KL Physician factors associated with discussions about end-of-life care. Cancer. 2010; 116: 998–1006.
    1. Phipps E True G Harris D Chong U Tester W Chavin SI Braitman LE Approaching the end of life: attitudes, preferences, and behaviors of African-American and white patients and their family caregivers. J Clin Oncol. 2003; 21: 549–554.
    1. Murtagh FE Addington-Hall J Higginson IJ The prevalence of symptoms in end-stage renal disease: a systematic review. Adv Chronic Kidney Dis. 2007; 14: 82–99.
    1. Temel JS Greer JA Muzikansky A Gallagher ER Admane S Jackson VA Dahlin CM Blinderman CD Jacobsen J Pirl WF Billings JA Lynch TJ Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010; 363: 733–742.
    1. Duberstein Chen M Chapman BP Hoerger M Saeed F Guancial E Fatalism and educational disparities in beliefs about the curability of advanced cancer. Patient Educ Couns. 2018; 101: 113–118.
    1. Davison SN Jhangri GS Koffman J Knowledge of and attitudes towards palliative care and hospice services among patients with advanced chronic kidney disease. BMJ Support Palliat Care. 2016; 6: 66–74.
    1. Smith CB Nelson JE Berman AR Powell CA Fleischman J Salazar-Schicchi J Wisnivesky JP Lung cancer physicians’ referral practices for palliative care consultation. Ann Oncol. 2012; 23: 382–387.
    1. Shah HH Monga D Caperna A Jhaveri KD Palliative care experience of US adult nephrology fellows: a national survey. Ren Fail. 2014; 36: 39–45.
    1. Beben T Rifkin DE Recognizing our limits: deficiencies in end-of-life education for nephrology trainees. Am J Kidney Dis. 2015; 65: 209–210.
    1. Markin A Cabrera-Fernandez DF Bajoka RM Noll SM Drake SM Awdish RL Buick DS Kokas MS Chasteen KA Mendez MP Impact of a Simulation-Based Communication Workshop on resident preparedness for end-of-life communication in the intensive care unit. Crit Care Res Pract. 2015; 2015: 534879.

Source: PubMed

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