Shared Decision-making
Jane Schell
Section of Palliative Care and Medical Ethics, Division of Renal-Electrolyte, Department of Medicine, University of Pittsburgh School of Medicine, UPMC Health System, Pittsburgh, PA, USA
Search for more papers by this authorKerri Cavanaugh
Division of Nephrology & Hypertension, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA
Search for more papers by this authorTalia Gutman
Sydney School of Public Health, The University of Sydney, NSW, Australia
The Centre for Kidney Research, The Children's Hospital at Westmead, NSW, Australia
Search for more papers by this authorJane Schell
Section of Palliative Care and Medical Ethics, Division of Renal-Electrolyte, Department of Medicine, University of Pittsburgh School of Medicine, UPMC Health System, Pittsburgh, PA, USA
Search for more papers by this authorKerri Cavanaugh
Division of Nephrology & Hypertension, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA
Search for more papers by this authorTalia Gutman
Sydney School of Public Health, The University of Sydney, NSW, Australia
The Centre for Kidney Research, The Children's Hospital at Westmead, NSW, Australia
Search for more papers by this authorJonathan C. Craig MBChB, DipCH, MMed(Clin Epi), PhD, FAHMS
Matthew Flinders Distinguished Professor Vice President and Executive Dean
College of Medicine and Public Health, Flinders University, Adelaide, Australia
Search for more papers by this authorDonald A. Molony MD
Professor of Medicine Distinguished Teaching Professor of the University of Texas System
Division of Renal Diseases and Hypertension AND Center for Clinical Research and Evidence-based Medicine, McGovern Medical School University of Texas, Houston, TX, USA
Search for more papers by this authorGiovanni F.M. Strippoli MD, PhD, MPH, MM (Epi)
Professor of Nephrology Adjunct Professor of Epidemiology
Department of Emergency and Organ Transplantation – University of Bari, Bari, Italy
School of Public Health, University of Sydney, Sydney, NSW, Australia
Search for more papers by this authorSummary
Shared Decision-making (SDM) in nephrology care is an essential component to ensuring patients to make informed decisions that reflect their priorities. This chapter summarizes SDM in nephrology care, particularly for older patients with advanced comorbidities facing difficult decisions about treatment of advanced kidney disease and preferences for end-of-life care. It also discusses communication strategies to facilitate clinicians in engaging in SDM. SDM responds to the limitations of these traditional models and addresses real-world challenges to decision making within healthcare. A fundamental component of SDM in advanced kidney disease involves providing patient-specific prognostic information. Advance care planning is a continuous process through which providers engage in discussions with patients and their families to learn their goals and preferences toward future medical treatments. Decision tools can help patients consider the treatment options in terms of their values and priorities.
References
- Carson , R.C. , Juszczak , M. , Davenport , A. , and Burns , A. ( 2009 ). Is maximum conservative management an equivalent treatment option to dialysis for elderly patients with significant comorbid disease? Clin. J. Am. Soc. Nephrol. 4 ( 10 ): 1611 – 1619 .
- Chandna , S.M. , Da Silva-Gane , M. , Marshall , C. et al. ( 2011 ). Survival of elderly patients with stage 5 CKD: comparison of conservative management and renal replacement therapy . Nephrol. Dial. Transplant. 26 ( 5 ): 1608 – 1614 .
- Joly , D. , Anglicheau , D. , Alberti , C. et al. ( 2003 ). Octogenarians reaching end-stage renal disease: cohort study of decision-making and clinical outcomes . J. Am. Soc. Nephrol. 14 ( 4 ): 1012 – 1021 .
- O'Connor , N.R. and Kumar , P. ( 2012 ). Conservative management of end-stage renal disease without dialysis: a systematic review . J. Palliat. Med. 15 ( 2 ): 228 – 235 .
- Verberne , W.R. , Geers , A.B. , Jellema , W.T. et al. ( 2016 ). Comparative survival among older adults with advanced kidney disease managed conservatively versus with dialysis . Clin. J. Am. Soc. Nephrol. 11 ( 4 ): 633 – 640 .
- Wong , S.P.Y. , Yu , M.K. , Green , P.K. et al. ( 2018 ). End-of-life care for patients with advanced kidney disease in the US veterans affairs health care system, 2000-2011 . Am. J. Kidney Dis. 72 ( 1 ): 42 – 49 .
- Wong , S.P. , Kreuter , W. , and O'Hare , A.M. ( 2012 ). Treatment intensity at the end of life in older adults receiving long-term dialysis . Arch. Intern. Med. 172 ( 8 ): 661 – 663 . discussion 663–664.
- Song , M.K. , Lin , F.C. , Gilet , C.A. et al. ( 2013 ). Patient perspectives on informed decision-making surrounding dialysis initiation . Nephrol. Dial. Transplant. 28 ( 11 ): 2815 – 2823 .
- Emanuel , E.J. and Emanuel , L.L. ( 1992 ). Four models of the physician-patient relationship . JAMA 267 ( 16 ): 2221 – 2226 .
- Charles , C. , Gafni , A. , and Whelan , T. ( 1999 ). Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model . Soc. Sci. Med. 49 ( 5 ): 651 – 661 .
- Moss , A.H. ( 2010 ). Revised dialysis clinical practice guideline promotes more informed decision-making . Clin. J. Am. Soc. Nephrol. 5 ( 12 ): 2380 – 2383 .
- Williams , A.W. , Dwyer , A.C. , Eddy , A.A. et al. ( 2012 ). Critical and honest conversations: the evidence behind the “choosing wisely” campaign recommendations by the American Society of Nephrology . Clin. J. Am. Soc. Nephrol. 7 ( 10 ): 1664 – 1672 .
- Ladin , K. , Lin , N. , Hahn , E. et al. ( 2017 ). Engagement in decision-making and patient satisfaction: a qualitative study of older patients' perceptions of dialysis initiation and modality decisions . Nephrol. Dial. Transplant. 32 ( 8 ): 1394 – 1401 .
- Orsino , A. , Cameron , J.I. , Seidl , M. et al. ( 2003 ). Medical decision-making and information needs in end-stage renal disease patients . Gen. Hosp. Psychiatry 25 ( 5 ): 324 – 331 .
- Wachterman , M.W. , Marcantonio , E.R. , Davis , R.B. et al. ( 2013 ). Relationship between the prognostic expectations of seriously ill patients undergoing hemodialysis and their nephrologists . JAMA Intern. Med. 173 ( 13 ): 1206 – 1214 .
- Obi , Y. , Nguyen , D.V. , Zhou , H. et al. ( 2018 ). Development and validation of prediction scores for early mortality at transition to dialysis . Mayo Clin. Proc. 93 ( 9 ): 1224 – 1235 .
- Wachterman , M.W. , Hailpern , S.M. , Keating , N.L. et al. ( 2018 ). Association between hospice length of stay, health care utilization, and medicare costs at the end of life among patients who received maintenance hemodialysis . JAMA Intern. Med. 178 ( 6 ): 792 – 799 .
- Dahlerus , C. , Quinn , M. , Messersmith , E. et al. ( 2016 ). Patient perspectives on the choice of dialysis modality: results from the empowering patients on choices for renal replacement therapy (EPOCH-RRT) study . Am. J. Kidney Dis. 68 ( 6 ): 901 – 910 .
- Urquhart-Secord , R. , Craig , J.C. , Hemmelgarn , B. et al. ( 2016 ). Patient and caregiver priorities for outcomes in hemodialysis: an international nominal group technique study . Am. J. Kidney Dis. 68 ( 3 ): 444 – 454 .
- Ramer , S.J. , McCall , N.N. , Robinson-Cohen , C. et al. ( 2018 ). Health outcome priorities of older adults with advanced CKD and concordance with their nephrology providers' perceptions . J. Am. Soc. Nephrol. 29 ( 12 ): 2870 – 2878 .
- Boyd , C. , Smith , C.D. , Masoudi , F.A. et al. ( 2019 ). Framework for decision-making for older adults with multiple chronic conditions: executive summary of action steps for the AGS guiding principles on the care of older adults with multimorbidity . J. Am. Geriatr. Soc .
- Epstein , R.M. , Alper , B.S. , and Quill , T.E. ( 2004 ). Communicating evidence for participatory decision making . JAMA 291 ( 19 ): 2359 – 2366 .
- The SHARE Approach . Content last reviewed 2018 . Agency for Healthcare Research and Quality R , MD . http://www.ahrq.gov/professionals/education/curriculum-tools/shareddecisionmaking/index.html .
- Crawley , L.M. , Marshall , P.A. , Lo , B. , and Koenig , B.A. ( 2002 ). End-of-Life Care Consensus Panel. Strategies for culturally effective end-of-life care . Ann. Intern. Med. 136 ( 9 ): 673 – 679 .
- Brown , E.A. , Bekker , H.L. , Davison , S.N. et al. ( 2016 ). Supportive care: communication strategies to improve cultural competence in shared decision making . Clin. J. Am. Soc. Nephrol. 11 ( 10 ): 1902 – 1908 .
- Teal , C.R. and Street , R.L. ( 2009 ). Critical elements of culturally competent communication in the medical encounter: a review and model . Soc. Sci. Med. 68 ( 3 ): 533 – 543 .
- Cohen , L.M. , Ruthazer , R. , Moss , A.H. , and Germain , M.J. ( 2010 ). Predicting six-month mortality for patients who are on maintenance hemodialysis . Clin. J. Am. Soc. Nephrol. 5 ( 1 ): 72 – 79 .
- Moss , A.H. , Ganjoo , J. , Sharma , S. et al. ( 2008 ). Utility of the “surprise” question to identify dialysis patients with high mortality . Clin. J. Am. Soc. Nephrol. 3 ( 5 ): 1379 – 1384 .
- Thamer , M. , Kaufman , J.S. , Zhang , Y. et al. ( 2015 ). Predicting early death among elderly dialysis patients: development and validation of a risk score to assist shared decision making for dialysis initiation . Am. J. Kidney Dis. 66 ( 6 ): 1024 – 1032 .
- Davison , S.N. ( 2010 ). End-of-life care preferences and needs: perceptions of patients with chronic kidney disease . Clin. J. Am. Soc. Nephrol. 5 ( 2 ): 195 – 204 .
- Back , A.L. and Arnold , R.M. ( 2006 ). Discussing prognosis: “how much do you want to know?” talking to patients who are prepared for explicit information . J. Clin. Oncol. 24 ( 25 ): 4209 – 4213 .
- Koncicki , H.M. and Schell , J.O. ( 2016 ). Communication skills and decision making for elderly patients with advanced kidney disease: a guide for nephrologists . Am. J. Kidney Dis. 67 ( 4 ): 688 – 695 .
- Schell , J.O. and Cohen , R.A. ( 2014 ). A communication framework for dialysis decision-making for frail elderly patients . Clin. J. Am. Soc. Nephrol. 9 ( 11 ): 2014 – 2021 .
- Mandel , E.I. , Bernacki , R.E. , and Block , S.D. ( 2017 ). Serious illness conversations in ESRD . Clin. J. Am. Soc. Nephrol. 12 ( 5 ): 854 – 863 .
- Schell , J.O. and Arnold , R.M. ( 2014 ). What are the ill effects of chronic dialysis? The benefits of a second conversation: how experience influences decision-making . Semin. Dial. 27 ( 1 ): 21 – 22 .
- Ladin , K. and Smith , A.K. ( 2019 ). Active medical management for patients with advanced kidney disease . JAMA Intern. Med .
- Sudore , R.L. and Fried , T.R. ( 2010 ). Redefining the “planning” in advance care planning: preparing for end-of-life decision making . Ann. Intern. Med. 153 ( 4 ): 256 – 261 .
- Wright , A.A. , Zhang , B. , Ray , A. et al. ( 2008 ). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment . JAMA 300 ( 14 ): 1665 – 1673 .
- Kurella Tamura , M. , Montez-Rath , M.E. , Hall , Y.N. et al. ( 2017 ). Advance directives and end-of-life care among nursing home residents receiving maintenance dialysis . Clin. J. Am. Soc. Nephrol. 12 ( 3 ): 435 – 442 .
- Davison SN Conservative Kidney Management, University of Alberta and Alberta Health Services . www.ckmcare.com .
- Joseph-Williams , N. , Newcombe , R. , Politi , M. et al. ( 2014 ). Toward minimum standards for certifying patient decision aids: a modified Delphi consensus process . Med. Decis. Mak. 34 ( 6 ): 699 – 710 .
- Murray , M.A. , Brunier , G. , Chung , J.O. et al. ( 2009 ). A systematic review of factors influencing decision-making in adults living with chronic kidney disease . Patient Educ. Couns. 76 ( 2 ): 149 – 158 .
- Davis , J.L. and Davison , S.N. ( 2017 ). Hard choices, better outcomes: a review of shared decision-making and patient decision aids around dialysis initiation and conservative kidney management . Curr. Opin. Nephrol. Hypertens. 26 ( 3 ): 205 – 213 .
- Fortnum , D. , Grennan , K. , and Smolonogov , T. ( 2015 ). End-stage kidney disease patient evaluation of the Australian 'my kidneys, my choice' decision aid . Clin. Kidney J. 8 ( 4 ): 469 – 475 .
- Boulware , L.E. , Ephraim , P.L. , Ameling , J. et al. ( 2018 ). Effectiveness of informational decision aids and a live donor financial assistance program on pursuit of live kidney transplants in African American hemodialysis patients . BMC Nephrol. 19 ( 1 ): 107 .
- Kapell Brown , C. , Kryworuchko , J. , and Martin , W. ( 2018 ). Evaluation of the CPR video decision aid with patients with end stage renal disease . BMC Nephrol. 19 ( 1 ): 226 .
- Patzer , R.E. , Basu , M. , Larsen , C.P. et al. ( 2016 ). iChoose kidney: a clinical decision aid for kidney transplantation versus dialysis treatment . Transplantation 100 ( 3 ): 630 – 639 .
- Subramanian , L. , Quinn , M. , Zhao , J. et al. ( 2017 ). Coping with kidney disease – qualitative findings from the empowering patients on choices for renal replacement therapy (EPOCH-RRT) study . BMC Nephrol. 18 ( 1 ): 119 .
- Hussain , J.A. , Flemming , K. , Murtagh , F.E. , and Johnson , M.J. ( 2015 ). Patient and health care professional decision-making to commence and withdraw from renal dialysis: a systematic review of qualitative research . Clin. J. Am. Soc. Nephrol. 10 ( 7 ): 1201 – 1215 .
- Ladin , K. , Pandya , R. , Perrone , R.D. et al. ( 2018 ). Characterizing approaches to dialysis decision making with older adults: a qualitative study of nephrologists . Clin. J. Am. Soc. Nephrol. 13 ( 8 ): 1188 – 1196 .
- Davison , S.N. ( 2006 ). Facilitating advance care planning for patients with end-stage renal disease: the patient perspective . Clin. J. Am. Soc. Nephrol. 1 ( 5 ): 1023 – 1028 .
- Wright Nunes , J.A. , Wallston , K.A. , Eden , S.K. et al. ( 2011 ). Associations among perceived and objective disease knowledge and satisfaction with physician communication in patients with chronic kidney disease . Kidney Int. 80 ( 12 ): 1344 – 1351 .
- Cavanaugh , K.L. ( 2016 ). Patient experience assessment is a requisite for quality evaluation: a discussion of the in-center hemodialysis consumer assessment of health care providers and systems (ICH CAHPS) survey . Semin. Dial. 29 ( 2 ): 135 – 143 .
- Morton , R.L. , Tong , A. , Howard , K. et al. ( 2010 ). The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies . BMJ 340 : c112 .
- Ha Dinh , T.T. , Bonner , A. , Clark , R. et al. ( 2016 ). The effectiveness of the teach-back method on adherence and self-management in health education for people with chronic disease: a systematic review . JBI Database System Rev. Implement. Rep. 14 ( 1 ): 210 – 247 .
- Bowman , B. , Zheng , S. , Yang , A. et al. ( 2018 ). Improving incident ESRD care via a transitional care unit . Am. J. Kidney Dis. 72 ( 2 ): 278 – 283 .
- Wong , S.P.Y. , McFarland , L.V. , Liu , C.F. et al. ( 2019 ). Care practices for patients with advanced kidney disease who forgo maintenance dialysis . JAMA Intern. Med .
- Bansal , A.D. and Schell , J.O. ( 2018 ). Strategies to address clinician hesitancy toward conservative care . Nephrol. Dial. Transplant .
- van Hoogdalem , L.E. , Hoitsma , A. , Timman , R. et al. ( 2018 ). Shared decision-making in kidney patients: involvement in decisions regarding the quality of deceased donor kidneys . Transplant. Proc. 50 ( 10 ): 3152 – 3159 .
- Harwood , L. and Alexander , C.M. ( 2013 ). Understanding pre-dialysis modality decision-making: A meta-synthesis of qualitative studies . Int. J. Nurs. Stud. 50 ( 1 ): 109 – 120 .
- Holley , J.L. , Davison , S.N. , and Moss , A.H. ( 2007 ). Nephrologists' changing practices in reported end-of-life decision-making . Clin. J. Am. Soc. Nephrol. 2 ( 1 ): 107 – 111 .
- Moattari , M. , Ebrahimi , M. , Sharifi , N. , and Rouzbeh , J. ( 2012 ). The effect of empowerment on the self-efficacy, quality of life and clinical and laboratory indicators of patients treated with hemodialysis: A randomized controlled trial . Health Qual Life Outcomes. 10 : 115 .