Rebecca J. Schmidt, DO, FACP, FASN Professor of Medicine and Chief, Section of Nephrology West Virginia University School of Medicine WVU Healthcare June 29, 2012 Introduction and Background Fastest growing sector of incident ESRD are older patients Estimated that 47% of individuals > 70 have CKD Proportion > 65 starting dialysis has increased ~10%/yr Overall increase of 57% between 1996 and 2003 Elderly (> 75) have high prevalence of comorbid conditions Clinical guidelines are not age-specific Pathophysiology and natural history of CKD in the elderly differs from that of younger patients Armamentarium of tools for patient education evolving Learning Objectives To understand the rationale for taking an age-attuned approach when providing informed consent to older patients with chronic kidney disease (CKD). To recognize the characteristics that signify a poor prognosis in the older CKD patient. To be prepared to address specific issues in informed consent discussions with older CKD patients. Outline Options and ethical issues Likelihood of renal disease progression before death Impact of age, functional status, comorbid conditions and dialysis on survival Burdens of dialysis and risk to quality of life Informing prospective dialysis patients about the contingencies of their consent Specific issues to address in informed consent discussions with older patients Case Presentation A 78 year old white female was referred for CKD care with an eGFR of 39 ml/min/1.73m2 and anemia. She also had DM, HTN, CAD, ICM, HLD, MDS and PVOD. Her renal function remained stable for the next 7 months, after which the patient missed all CKD clinic appointments until referred back again by her PCP 2 years later, having sustained 2 additional myocardial infarctions requiring placement of 5 coronary artery stents. Her eGFR was now 30 ml/min/1.73m2, and she was advised that hemodialysis might be difficult consequent to cardiac disease and other comorbid conditions. As her GFR fell to 15 ml/min/1.73m2, the patient decided to pursue dialysis because she wanted "to live for my family.” Her family was supportive of this stance, stating "we have to do everything we can.” Options and Ethical Issues/Questions Renal replacement therapy options Patient preferences, competence, and understanding Expectations regarding quantity and quality of life Contextual issues What is “everything?’ Does opportunity command obligation? Options Renal Replacement Therapy Hemodialysis Peritoneal dialysis Home dialysis Transplantation No Renal Replacement Therapy Opportunity and Choice Legislation assuring coverage of dialysis (1972) Increased effectiveness of RRTx Decreased risks of RRTx Incorporation into standard practice Effective elimination of choice Ethical Responsibility to Do No Harm Opportunity to extend life Obligation to extend life Typical Illness Trajectories For Chronic Illness Murray S A et al. BMJ 2005;330:1007-1011 Trajectories of Illness Holley J L CJASN 2012;7:1033-1038 ©2012 by American Society of Nephrology Trajectory of Illness for ESRD Trajectory of Functional Decline in the Last Year of Life Murtagh JAGS 59:304-308, 2011 Transitioning from CKD to ESRD Dialysis Access CKD Status • CKD Stage • Knowledge • Prognosis • Renal • Overall • Signs/sx Comorbid Conditions • CVD • HTN • Diabetes • COPD • Other • Expectations Psychosocial Issues • Available expertise • State of mind • Logistics of • Cognitive scheduling, abilities transport • Willingness or • Payment capacity to comply • Family support, influence, involvement Burdens of RRTx • Physical • Financial • Logistic • Family Patient Challenges Accepting and coping with chronic condition Accepting disruption of current life Finding the financial resources Dealing with uncontrollable consequences Dealing with loss of independence and control Accepting changes in role (family, friends, work) Maintaining meaning to life Confronting one’s own mortality Provider Challenges RJ Schmidt and BS Pellegrino, Guest Editors. Primary Care of the Patient with Chronic Kidney Disease. Advances in CKD 18:6, 2011. Expected remaining lifetimes (years) of the U.S. population & of dialysis & transplant patients, by age, gender, & race Table 6.b (Volume 2) General U.S. population, 2004 All races White All M F All 0-14 71.4 68.8 73.9 71.8 15-19 61.6 59.1 64.1 62.0 20-24 56.9 54.4 59.2 57.2 25-29 52.1 49.7 54.4 52.5 30-34 47.4 45.1 49.5 47.7 35-39 42.7 40.4 44.7 42.9 40-44 38.0 35.8 40.0 38.3 45-49 33.5 31.4 35.4 33.7 50-54 29.2 27.2 30.9 29.3 55-59 25.0 23.1 26.5 25.1 60-64 21.0 19.3 22.4 21.0 65-69 17.2 15.7 18.5 17.3 70-74 13.8 12.5 14.8 13.8 75-79 10.8 9.7 11.5 10.7 80-84 8.2 7.3 8.7 8.1 85+ 4.4 3.9 4.6 4.3 Overall 25.2 23.4 26.6 25.3 USRDS 2009 M 69.2 59.5 54.8 50.1 45.4 40.7 36.1 31.7 27.4 23.3 19.4 15.8 12.5 9.6 7.2 3.8 23.6 ESRD patients, 2007 African American Dialysis Transplant F All M F All M F All M 74.3 67.2 63.7 70.3 19.8 20.5 19.1 55.0 54.7 64.4 57.5 54.0 60.6 17.6 18.5 16.6 42.4 42.0 59.5 52.7 49.4 55.7 14.9 15.8 13.9 38.4 38.0 54.7 48.1 44.9 50.9 13.2 13.9 12.3 35.1 34.7 49.8 43.5 40.5 46.2 11.4 11.8 10.8 31.3 30.8 45.0 39.0 36.0 41.5 9.9 10.3 9.5 27.8 27.2 40.2 34.5 31.6 37.0 8.6 8.8 8.4 24.3 23.7 35.6 30.3 27.5 32.6 7.4 7.5 7.3 21.1 20.5 31.1 26.3 23.7 28.5 6.5 6.6 6.4 18.1 17.4 26.6 22.6 20.1 24.5 5.6 5.7 5.6 15.5 14.8 22.4 19.1 16.9 20.7 4.8 4.8 4.9 13.1 12.4 18.5 15.9 14.0 17.2 4.1 4.0 4.1 10.8 10.2 14.8 13.0 11.4 14.0 3.4 3.4 3.5 8.9 8.4 11.5 10.4 9.1 11.2 2.9 2.8 2.9 7.5 7.0 8.6 8.3 7.3 8.7 2.4 2.3 2.5 4.5 5.0 4.4 5.1 1.9 1.9 2.0 26.7 23.1 20.9 24.8 5.9 6.0 5.9 16.4 15.8 F 55.6 43.0 39.1 35.9 32.2 U.S. data: calculated from 28.8 Tables 1–9 in the United States 25.4 life tables (Arias E). Available at 22.3 http://www.cdc.gov/nchs/dat 19.3 a/nvsr/nvsr56/nvsr56_09.pdf. ESRD data: prevalent dialysis & 16.7 transplant patients, 2007. 14.2 Expected remaining lifetimes 11.8 by race & gender can be found in Reference Table H.31. 9.8 Prevalent ESRD population, 8.3 2007, used as weight used to calculate overall combined-age remaining lifetimes. 17.4 Predictors of mortality in Medicare patients age 66 & older, by age, gender, race, at-risk group, & comorbidity Table 5.b (Volume 1) 66–69 70–74 75–84 85+ Male Female White African American Other No CKD, DM, or CVD CKD (NDM, non-CVD) DM (non-CKD, non CVD) CVD (non-CKD, non-DM) CKD+DM CKD+CVD DM+CVD CKD+DM+CVD Hypertension Liver disease GI disease Cancer COPD Anemia USRDS 2009 2003 RR 1 1.33 2.34 6.30 1.16 1.00 1.00 1.13 0.87 1.00 1.99 1.23 1.84 2.10 3.10 2.45 4.07 0.81 1.70 1.24 1.86 1.98 1.70 CI 1.29 - 1.38 2.28 - 2.42 6.11 - 6.49 1.14 - 1.17 1.1 - 1.16 0.83 - 0.9 1.83 - 2.17 1.19 - 1.28 1.8 - 1.88 1.86 - 2.37 2.98 - 3.22 2.39 - 2.51 3.91 - 4.24 0.8 - 0.82 1.6 - 1.81 1.21 - 1.28 1.83 - 1.9 1.94 - 2.01 1.67 - 1.73 2005 RR 1 1.34 2.38 6.43 1.14 1.00 1.00 1.16 0.82 1.00 1.60 1.22 1.81 2.05 2.85 2.36 3.57 0.81 1.79 1.26 1.84 1.96 1.71 CI 1.29 - 1.38 2.31 - 2.46 6.24 - 6.62 1.12 - 1.15 1.13 - 1.19 0.79 - 0.86 1.47 - 1.74 1.18 - 1.27 1.78 - 1.85 1.84 - 2.28 2.74 - 2.96 2.3 - 2.42 3.43 - 3.71 0.8 - 0.83 1.69 - 1.9 1.22 - 1.3 1.8 - 1.87 1.93 - 1.99 1.68 - 1.74 2007 RR 1 1.35 2.38 6.34 1.13 1.00 1.00 1.15 0.85 1.00 1.72 1.12 1.80 1.80 2.77 2.19 3.35 0.81 1.84 1.25 1.80 1.95 1.72 CI 1.3 - 1.4 2.31 - 2.46 6.15 - 6.55 1.11 - 1.15 1.12 - 1.18 0.82 - 0.89 1.6 - 1.85 1.08 - 1.16 1.76 - 1.83 1.63 - 1.98 2.67 - 2.86 2.13 - 2.25 3.23 - 3.47 0.8 - 0.83 1.73 - 1.95 1.21 - 1.29 1.76 - 1.83 1.92 - 1.99 1.69 - 1.75 Point prevalent on January 1 of each year, age 66 & older. Comorbidities identified from claims in prior year, and exclude patients enrolled an HMO, with Medicare as secondary payor, or diagnosed with ESRD in the prior year Followed from January 1 to December 31 of the year, censored at ESRD date and the end of Medicare entitlement. Results are from multivariable Cox regressions. Relative Survival by Illness Nordio et al. American Journal of Kidney Diseases 2012; 59:819-828 (DOI:10.1053/j.ajkd.2011.12.023 ) Unadjusted & Adjusted All-Cause Mortality Rates in Medicare CKD & Non-CKD Patients, by Age Figure 4.16 (Volume 1) Point prevalent Medicare patients age 66 & older. Adj: gender/race/hospitalization/comorbidity; ref: 2005 cohort. Likelihood of Renal Disease Progression before Death Cumulative incidence of end-stage renal disease (ESRD), cardiovascular death, and noncardiovascular death during follow-up Dalrympal. J Gen Intern Med 26(4):379-85, 2010. Age and Survival in CKD 4 (A) Proportion of patients surviving by age group at referral. Curves are generated from the Cox regression equation and are adjusted for baseline haemoglobin, eGFR and diastolic blood pressure and early rate of change in renal function. Conway et al. Nephrol. Dial. Transplant. 2009;24:1930-1937 Age and Progression to ESRD (B) Cumulative risk of likelihood of renal replacement therapy by age at referral. Curves are generated from the failure function of the Cox regression equation and are adjusted for early rate of change in eGFR and level of proteinuria, haemoglobin and eGFR at referral. Conway et al. Nephrol. Dial. Transplant. 2009;24:1930-1937 Likelihood of Renal Disease Progression before Death GFR of <30 Progressive, irreversible deterioration in kidney function over reasonable period of observation Presence of diabetes Presence of proteinuria O’Hare. Kidney Int 71:555-561, 2007 O’Hare. J Am Soc Nephrol 18:2758-2765, 2007 Eriksen. Kidney Int 69:375-382, 2006 Hall. Clin J Am Soc Nephrol 5:828-835, 2010 Evans. Am J Kidney Dis 46:863-870, 2005 Stevens. Am J Kidney Dis 55:S23-S33, 2010 Hemmelgarn. Kidney Int 69:2155-2161, 2006. Indicators of Poor Prognosis Marked functional impairment Frailty History of falls Inability to transfer Serum albumin below 3.5 gm/dl Yes to the surprise question High Charlson Comorbidity Scores Frailty is Important General population: Frailty criteria met by 7% > 65 and 40% >80 years Fried. J Gerontol A Biol Sci Med Sci. 56:M146-M156, 2001 Elderly CKD patients: Frailty with CKD is increased 2-F and 6-F if GFR < 45 (even corrected for comorbid) Frailty + CKD = increased death Wilhelm. Am J Med. 122:664-671, e2, 2009 Elderly ESRD patients: 74% in 60-70 age group; 79% in over 80 age group Risks of death 2.24 and hospitalization 1.56 for frail pts Johansen. J Am Soc Nephrol .18:2960-2967 Loss of Independence in Elderly Patients After Starting Dialysis Living Status and Residence during the Study Period, Assessed at 6-Month Intervals. Jassal SV et al. N Engl J Med 2009;361:1612-1613. Functional Status in Elderly Patients After Starting Dialysis Change in Functional Status after Initiation of Dialysis. Kurella Tamura M et al. N Engl J Med 2009;361:1539-1547. Malnutrition Linked to Mortality in Dialysis Patients Undernourished, small (low BMI) with low albumin and BUN levels have poorest survival Albumin <4 g/dl single lab finding of import Decrease in albumin is dose-dependent OR 1.48 for albumin 3.5-3.9; 3.13 for albumin 3.0-3.4 Does not prove cause and effect Meaning of hypoalbuminemia may differ among HD vs. PD patients but malnutrition by SGA and initial fat-free body mass independently predicts death Chung 2000 Owen 1993 Lowrie 1990 Goldwasser 1994 Keshiaviah 1994 Surprise Question Would I be surprised if this patient died in the next year? Moss, Clin J Am Soc Nephrol 3:1379-1384, 2008 Characteristics Signifying a Poor Prognosis High comorbidity scores (e.g., modified Charlson Comorbidity Index score of ≥ 8) Marked functional impairment (e.g., Karnofsky Performance Status Scale Score < 40) Frailty History of falls Inability to transfer Severe chronic malnutrition (e.g., serum albumin level < 2.5 g/dL using the bromcresol green method) Nephrologist would not be surprised at their death RPA Clinical Practice Guideline in the Appropriate Initiation and Withdrawal from Dialysis, 2nd Edition, 2010. Johansen. J Am Soc Nephrol 18:2960-2970, 2007. Arnold. N Engl J Med 361: 1597-1598, 2009. Case Presentation - continued She was not keen on peritoneal dialysis, so an AVF was placed and the patient was followed in the CKD Clinic awaiting the appropriate time to start dialysis. When she had her fifth heart attack and another PTA, signs of pulmonary edema prompted the decision to start dialysis; however, the AVF was poorly functional and she ultimately required placement of a TCC to achieve meaningful dialysis. The TCC required several replacements for which she traveled the 4-hour round trip to the hospital for this procedure and on several occasions underwent an urgent dialysis treatment for volume overload by virtue of a missed treatment because of no access. Revision and/or recreation of vascular access were deferred for 6 months for cardiac reasons and 5 months later, she was admitted for GI bleeding, developed chest pain and underwent additional coronary artery PTA and stents. Impact of Dialysis on Survival Survival benefit for selected sicker patients choosing dialysis over palliative care is small And not uniform Couchoud 2009, Carson 2009, Murtagh 2007, Joy 2003, Brunori 2008, Elam 2009 No survival benefit to dialysis in the sickest Better survival with dialysis unless CVDz or comorbidities More of those on dialysis died while hospitalized (65%) than those choosing no dialysis (27%). Smith. Clin Nephron Practice 2003 Murtagh. Nephrol Dial Transplant 2007 Dialysis May Not Mean Greater Survival in Older Patients with Poor Prognosis Kaplan-Meier survival curves for those with high comorbidity (score=2), comparing 5 dialysis and conservative groups (log rank statistics <0.001, df 1, P=0.98. Murtagh. Nephrol Dial Transplant. 2007; 22(7):1955-62 Dialysis May Not Mean Greater Survival in Older Patients with Poor Prognosis Impact of Age, Clinical Status and Dialysis on Survival Older age and co-morbid conditions are key prognostic indicators. Likelihood of progression to ESRD prior to death is an important consideration. Dialysis may not confer a survival benefit over active nondialytic management in patients with a poor prognosis. Smith. Nephron Clinical Practice 95:C40-c46, 2003. Carson. Clin J Am Soc Nephrol 4: 1611-1619, 2009. Wong. Ren Fail 29:653-659, 2007. O’Hare. J Am Soc Nephrol 18:2758-2765, 2007. Conway. Nephrol Dial Transplant 24:1930-1937, 2009. Ellam. J Med 102:547-554. 2009. Murtagh. Nephrol Dial Transplant 22: 1955-1962, 2007. Chandna. Nephrol Dial Transplant 26:1608-1614, 2011 Case Presentation - continued Further vascular access surgery was again delayed until several months later when, with the blessing of her cardiologist, the patient was approached about AVF placement, but was dissuaded by her children, who were convinced that her previous heart attack had been precipitated by the vascular access surgery and did not wish her to spend any more time traveling to the hospital 100 miles distant. She continued to live in her home but required increasing support from her family for ADLs and had little energy to enjoy even crochet despite receiving repeated transfusions for ESA-refractory anemia. Several months later, she suffered a cardiac arrest one morning as she was dressing to come to dialysis. Presents to CKD Clinic with eGFR 39 ml/min Now s/p AMI x 2 and PTA x 5; many transfusions for MDS; eGFR 30 ml/min May 2007-Dec 2009 After 7 months, lost to followup for 24 months; eGFR still 39 ml/min HD chosen and AVF placed Jan 2010-April 2010 Stable AP; starts ESA and Fe therapy at CKD Clinic; CKD options presented TCC replaced x 3; AVF surgery deferred b/o CVDz; several transfusions May 2010-Dec 2010 AMI with pulmonary edema; ER HD started via TCC (AVF nonfx) Died at home Jan 2011-June 2011 Recurrent AP and PTA; GI bleed; continues with TCC Options Renal Replacement Therapy No Renal Replacement Therapy By decision Active non-dialytic management Hospice and palliative care By default Emergency dialysis start Death Integrated Prognostic Score Older age Dementia PVOD Low albumin Surprise ? Survival across quartiles of predicted risk Cohen L M et al. CJASN 2010;5:72-79 Prognostic Indicator Estimates at the Start of Dialysis Parameter Result Charlson Comorbidity Index Surprise Question Karnofsky Score Hemodialysis Mortality Predictor Serum albumin at dialysis start Fistula Failure to Mature Risk 10.8 (very high) No 50% 12 month survival - 30% 18 month survival - 12% 3.2 mg/dl (50% 1-yr mortality) 7.5 (very high) Moss. Clin J Am Soc Nephrol. 3:1379-1384, 2008. Cohen. Clin J Am Soc Nephro5:72-79, 2010. Lok. J Am Soc Nephrol 17:3204-3212, 2006. Presents to CKD Clinic with eGFR 39 ml/min Now s/p AMI x 2 and PTA x 5; many transfusions for MDS; eGFR 30 ml/min May 2007-Dec 2009 After 7 months, lost to followup for 24 months; eGFR still 39 ml/min HD chosen and AVF placed Jan 2010-April 2010 Stable AP; starts ESA and Fe therapy at CKD Clinic; CKD options presented TCC replaced x 3; AVF surgery deferred b/o CVDz; several transfusions May 2010-Dec 2010 AMI with pulmonary edema; ER HD started via TCC (AVF nonfx) Died at home Jan 2011-June 2011 Recurrent AP and PTA; GI bleed; continues with TCC • Provide education earlier on and engage family in descriptions of options , risks and responsibilities of dialysis for patient and family. • Present the ‘no dialysis’ option with objectivity and enthusiasm. • Present need for AVF, risk for FTM and prepare for AVF intervention requirements. • Consider AVG in cases of insistence or requests for time-limited trials. Rationale for Considering the “No Dialysis” Option Survival continues to be poor for ESRD. Dialysis impacts quality of life on many levels. Life on dialysis entails burdens likely to detract from quality of life. Likelihood of functional decline once starting dialysis is high. Dialysis may not be the best form of therapy for every patient. . Holley. Adv Chronic Kidney Dis 14:316-318, 2007. Tamura. N Engl J Med 361:1539-1547, 2009. Weisbord. Adv Chronic Kidney Dis 14:316-318, 2007. When Considering the “No Dialysis” Option… A growing literature supports active non-dialytic (“conservative”) management for advanced CKD. Active non-dialytic management may be appropriate for certain patients with a poor prognosis for survival. Active non-dialytic management does not mean no management or no care. Smith. Nephron Clinical Practice 95:C40-c46, 2003. Carson. Clin J Am Soc Nephrol 4: 1611-1619, 2009. Wong. Ren Fail 29:653-659, 2007. Advance Care Planning for Patients with CKD Multiple comorbid conditions, effects of chronic illness add to the complexities of ACP for CKD patients. Cognitive impairment common in older CKD patients. Preferences about dialysis may change over time and may be influenced by: Functional status Depression Cognitive ability to appreciate impact of disease on QOL Understanding of trappings associated with day-to-day operations of dialysis Perceptions of the dying process (right or wrong) should dialysis be foregone Fried. J Am Geriatr Soc 55:1007-1014, 2007. Hooper. MJA 165: 416-419. 1996. Murray. Neurology 67:216-223, 2006. Tools Available in the RPA Guideline for Shared Decision Making • • • • • • • • • Depression Assessment Cognitive Capacity Assessment Decision Making Capacity Assessment Quality of Life and Functional Status Assessment Prognosis Assessment National Kidney Foundation Initiation and Withdrawal Checklists Pain and Symptom Assessment and Management Communication Skills Glossary of Terms RPA Clinical Practice Guideline in the Appropriate Initiation and Withdrawal from Dialysis, 2nd Edition, 2010. Informed Consent for Dialysis Initiation of dialysis presumes appropriate provision of informed consent Ideally, begins as part of ACP long before decision needed Importance underscored by high rates of withdrawal from dialysis Second to CVD as a cause of death Accounts for 25% of dialysis patient deaths Requires sufficient understanding and knowledge of one’s circumstances. Informing Prospective Dialysis Patients about the Contingencies of their Consent Informed consent for dialysis includes discussion of options for permanent access. Requirements for permanent access warrant full disclosure at the time of informed consent. Cost, pain and risk associated with surgical intervention warrant consideration and disclosure. Taking an Age-Attuned Approach Specific Issues to Discuss with Older CKD Patients Dialysis may not confer a survival advantage over maximum medical management. Patients with significant level of illness are more likely to die than live long enough to progress to ESRD. Life on dialysis entails significant burdens that may detract from their quality of life. It is likely that they may not experience any functional improvement with dialysis. El-Ghoul. JAGS 57: 2217-2223, 2009. Tamura. N Engl J Med 361:1539-1547, 2009. Weisbord. Adv Chronic Kidney Dis 14:316-318, 2007. Joly. J Am Soc Nephrol 14:1012-1021, 2003. Eriksen. Kidney Int 69:375-382, 2006. Dalrymple. J Gen Intern Med 26:379-38, 2011. Taking an Age-Attuned Approach Specific Issues to Discuss with Older CKD Patients They may undergo significant functional decline during the first year after dialysis initiation. Maximum medical management includes usual integrated CKD care without dialysis and does NOT mean ‘no care’. Palliative care is available irrespective of their decision to pursue or forego dialysis. Hospice is an appropriate consideration for patients with additional terminal illness. RPA Clinical Practice Guideline in the Appropriate Initiation and Withdrawal from Dialysis, 2nd Edition, 2010. Recommendations for Providing Informed Consent to Older Patients Contemplating Dialysis Initiate advanced care planning early on in the continuum of CKD. Integrate informed consent as part of the deliberation process when contemplating dialysis. Assure decision making capacity and cognitive capacity for comprehension. Engage the patient’s family in the decision making process. Present estimate of renal and overall prognosis with and without dialysis. Determine and agree on the patient’s goals, for both short-term and long-term care. Schmidt RJ. Clin J Am Soc Nephrol 7:185-191, 2012. Recommendations for Providing Informed Consent to Older Patients Contemplating Dialysis Make plans for dealing with symptoms that could occur should renal failure progress faster than anticipated and/or faster than other co-morbid conditions. Discuss desires for acute symptom management and goal to avoid “heat of the moment” decisions. For those choosing dialysis, discuss modality and dialysis access options, and explain requirements and responsibilities associated with vascular access or peritoneal dialysis catheter placement. Schmidt RJ. Clin J Am Soc Nephrol 7:185-191, 2012. Approach to the Elderly Patient with ESRD The model uses such factors as cognitive impairment, functional impairment, and the severity of comorbid conditions to help guide the clinical thought process. Berger J R , Hedayati S S CJASN 2012;7:1039-1046 ©2012 by American Society of Nephrology Guideline for Shared Decision Making – 2nd Edition Endorsed by: Renal Physicians Association American Academy of Hospice and Palliative Medicine American Academy of Pediatrics American Association of Critical Care Nurses American Association of Kidney Patients American College of Nurse Practitioners American Geriatrics Society American Society of Pediatric Nephrology Center to Advance Palliative Care Forum of End-Stage Renal Disease Networks Kidney End-of-Life Coalition National Hospice and Palliative Care Organization National Renal Administrators Association Society of Critical Care Medicine Recommendations 1. 2. 3. 4. 5. 6. Develop a physician-patient relationship for shared decision making. Fully inform acute kidney injury (AKI), stage 4 and 5 CKD, and ESRD patients about their diagnosis, prognosis and all treatment options. Give all patients with AKI, stage 5 CKD, or ESRD an estimate of prognosis specific to their overall condition. Institute advanced care planning. If appropriate, forgo (withhold initiating or withdraw ongoing) dialysis for patients with AKI, CKD, or ESRD in certain, well-define situations. Consider forgoing dialysis for AKI, CKD, or ESRD patients who a very poor prognosis or for whom dialysis cannot be provided safely. Recommendations, continued Consider a time-limited trial of dialysis for patients requiring dialysis but who have an uncertain prognosis, or for whom a consensus cannot be reached about providing dialysis. 8. Establish a systematic due process approach for conflict resolution if there is disagreement about what decision should be made with regard to dialysis. 9. To improve patient-centered outcomes, offer palliative care services and interventions to all AKI, CKD, and ESRD patients who suffer from burdens of their disease. 10. Use a systematic approach to communicate about diagnosis, prognosis, treatment options, and goals of care. 7. Develop a physician-patient relationship for shared decision making Ensures patients’ values and preferences play a prominent role Addresses ethical obligation to provide full disclosure of risks and benefits Participants should include: Patients Physicians Legal agent in case of loss of decision-making capacity Fully inform acute kidney injury (AKI), stage 4 and 5 CKD, and ESRD patients about their diagnosis, prognosis and all treatment options AKI patients: Decisions about acute RRTx should be made in context of other life sustaining treatments CKD 4-5/ESRD patients: In addition to dialysis, treatment options should include not starting dialysis and/or a time-limited trial of dialysis Give all patients with AKI, stage 5 CKD, or ESRD an estimate of prognosis specific to their overall condition CKD 5 patients: The surprise question together with risk factors for poor prognosis (age, comorbidities, severe malnutrition, poor function status) to estimate prognosis ESRD patients experiencing major complications: When major complications reduce QOL, it is appropriate to reassess treatment goals Consider withdrawal from dialysis Prognosis Estimates should/will impact course of action Dated and documented discussions may facilitate informed decision making Estimates can be used to develop consensus on goals of therapy and care Early and continued discussion may facilitate reassessment in the event of complications that reduce survival or quality of life Institute advanced care planning Help patients understand his/her condition. Prepare for decisions that may have to be made as the condition progresses over time. If appropriate, forgo (withhold initiating or withdraw ongoing) dialysis for patients with AKI, CKD, or ESRD in certain, well-define situations Fully informed patients with DMC, who voluntarily refuse dialysis or request its discontinuation Patients who no longer have DMC or who indicated refusal of dialysis in an advanced directive Patients without DMC, whose properly appointed agent refuses dialysis or requests its discontinuation Patients with irreversible, profound neurological impairment and lack signs of thought, sensation, purposeful behavior or awareness of self or environment Consider forgoing dialysis for AKI, CKD, or ESRD patients who a very poor prognosis or for whom dialysis cannot be provided safely Patients whose condition renders them unable to cooperate with the technical process of dialysis Patients with terminal illness from non-renal causes (where no benefit from dialysis is anticipated) Patients who meet two or more criteria for statistically significant poor prognosis. Time-Limited Trials Consider in patients: requiring dialysis who have an uncertain prognosis for whom a consensus cannot be reached about providing dialysis Agree in advance on the length of the trial and parameters to be assessed during and at the completion of the trial to determine whether dialysis has benefited the patient and whether it should be continued Use a systematic approach to communicate about diagnosis, prognosis, treatment options, and goals of care Good communication improves patients’ adjustment to illness, increases adherence to treatment and results in higher patient and family satisfaction Patients’ decisions should be based on an accurate understanding of their condition and the pros and cons of treatment options. End of Life Care Preferences Survey of 584 Stage 4-5 CKD patients • EOL care needs not integrated into renal care. • Patients had poor knowledge of palliative care options and illness trajectory. • Majority of patients wanted to die at home (36%) or in inpatient hospice (29%). • Less than 10% had discussed EOL care with nephrologist. • Large number (61%) regretted decision to start dialysis! Davison. Clin J Am Soc Nephrol 5:195-204,2010. For most dialysis patients, the quality of their lives determines their acceptance or rejection of medical interventions to prolong life. Because the quality of their lives changes, their goals for care and treatment change. Thus, advance care planning is a dynamic process and nota single event resulting from one conversation. Holley J L CJASN 2012;7:1033-1038 Conclusions Shared decision making processes are key to assuring the best choice for a given patient. Preparation includes education about modalities and the burdens inherent in their implementation. Advance care planning is a process that must evolve with changes in a patient’s health care conditions in a changing health care environment. Dialysis may not be the best option for all patients. Older patients warrant an age-attuned approach. HD MORTALITY PREDICTOR Programmed by Stephen Z. Fadem, M.D., FASN and Joseph Fadem SERUM ALBUMIN g/dL SURPRISE QUESTION I would NOT be surprised if my patient died in the next 6 months. I would be surprised if my patient died in the next 6 months. AGE years DEMENTIA My patient HAS dementia. My patient does NOT have dementia. PERIPHERAL VASCULAR DISEASE My patient HAS peripheral vascular disease. My patient does NOT have peripheral vascular disease. XBETA: -154.59 Predicted Six Month Survival: 89% Predicted Twelve Month Survival: 74% Predicted Eighteen Month Survival: 60% Resources TOUCHCALC http://touchcalc.com Charlson Comorbidity Score Surprise question – hemodialysis predictor score Karnofsky score Clinical Practice Guideline in the Appropriate Initiation and Withdrawal from Dialysis, 2nd Edition, 2010 End of Life Coalition – ESRD Network 5 http://www.kidneyeol.org/advanced.htm