Educating the Elderly and Their Families about Dialysis and Treatment Options

1. Educating the Elderly and Their Families about Dialysis and Treatment Options 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

2. 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

3. 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.

4. 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

5. Case Presentation A 78 year old white female was referred for CKD care with an eGFR of 39 ml/min/1.73m2and 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 eGFRwas 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.”

6. 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?

7. Options • Renal Replacement Therapy • Hemodialysis • Peritoneal dialysis • Home dialysis • Transplantation • No Renal Replacement Therapy

8. Opportunity and Choice

9. Ethical Responsibility to Do No Harm

10. Typical Illness Trajectories For Chronic Illness Murray S A et al. BMJ 2005;330:1007-1011

11. Trajectories of Illness Holley J L CJASN 2012;7:1033-1038 ©2012 by American Society of Nephrology

12. Trajectory of Illness for ESRD Trajectory of Functional Decline in the Last Year of Life Murtagh JAGS 59:304-308, 2011

13. Transitioning from CKD to ESRD

14. 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

15. Provider Challenges RJ Schmidt and BS Pellegrino, Guest Editors. Primary Care of the Patient with Chronic Kidney Disease. Advances in CKD 18:6, 2011.

16. Expected remaining lifetimes (years) of the U.S. population & of dialysis & transplant patients, by age, gender, & race Table 6.b (Volume 2) U.S. data: calculated from Tables 1–9 in the United States life tables (Arias E). Available at http://www.cdc.gov/nchs/data/nvsr/nvsr56/nvsr56_09.pdf. ESRD data: prevalent dialysis & transplant patients, 2007. Expected remaining lifetimes by race & gender can be found in Reference Table H.31. Prevalent ESRD population, 2007, used as weight used to calculate overall combined-age remaining lifetimes. USRDS 2009

17. Predictors of mortality in Medicare patients age 66 & older, by age, gender, race, at-risk group, & comorbidityTable 5.b (Volume 1) 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. USRDS 2009

18. Relative Survival by Illness Nordio et al. American Journal of Kidney Diseases 2012; 59:819-828 (DOI:10.1053/j.ajkd.2011.12.023 )

19. Unadjusted & Adjusted All-Cause Mortality Rates in Medicare CKD & Non-CKD Patients, by AgeFigure 4.16 (Volume 1) Point prevalent Medicare patients age 66 & older. Adj: gender/race/hospitalization/comorbidity; ref: 2005 cohort.

20. Likelihood of Renal Disease Progression before Death Cumulative incidence of end-stage renal disease (ESRD), cardiovascular death, and non-cardiovascular death during follow-up Dalrympal. J Gen Intern Med 26(4):379-85, 2010.

21. 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

22. 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

23. 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 SocNephrol 18:2758-2765, 2007 Eriksen. Kidney Int 69:375-382, 2006 Hall. Clin J Am SocNephrol 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.

24. 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

25. Frailty is Important • General population: • Frailty criteria met by 7% > 65 and 40% >80 years Fried. J Gerontol A BiolSci 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 SocNephrol .18:2960-2967

26. 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.

27. 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.

28. 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 Goldwasser 1994 Owen 1993 Keshiaviah 1994 Lowrie 1990

29. Surprise Question Would I be surprised if this patient died in the next year? • Moss, Clin J Am Soc Nephrol 3:1379-1384, 2008

30. 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 SocNephrol 18:2960-2970, 2007. Arnold. N Engl J Med 361: 1597-1598, 2009. .

31. 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.

32. 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

33. 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

34. Dialysis May Not Mean Greater Survival in Older Patients with Poor Prognosis

35. 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 non-dialytic management in patients with a poor prognosis. Smith. Nephron Clinical Practice 95:C40-c46, 2003. Carson. Clin J Am SocNephrol 4: 1611-1619, 2009. Wong. Ren Fail 29:653-659, 2007. O’Hare. J Am SocNephrol 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

36. 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.

37. TCC replaced x 3; AVF surgery deferred b/o CVDz; several transfusions Now s/p AMI x 2 and PTA x 5; many transfusions for MDS; eGFR 30 ml/min Presents to CKD Clinic with eGFR 39 ml/min HD chosen and AVF placed Died at home May 2010-Dec 2010 Jan 2011-June 2011 Jan 2010-April 2010 May 2007-Dec 2009 AMI with pulmonary edema; ER HD started via TCC (AVF nonfx) After 7 months, lost to followup for 24 months; eGFR still 39 ml/min Stable AP; starts ESA and Fe therapy at CKD Clinic; CKD options presented Recurrent AP and PTA; GI bleed; continues with TCC

38. Options • Renal Replacement Therapy • No Renal Replacement Therapy • By decision • Active non-dialytic management • Hospice and palliative care • By default • Emergency dialysis start • Death

39. Older age Dementia PVOD Low albumin Surprise ? Integrated Prognostic Score Survival across quartiles of predicted risk Cohen L M et al. CJASN 2010;5:72-79

40. Prognostic Indicator Estimates at the Start of Dialysis Moss. ClinJ Am SocNephrol. 3:1379-1384, 2008. Cohen. ClinJ Am Soc Nephro5:72-79, 2010. Lok. J Am SocNephrol 17:3204-3212, 2006.

41. TCC replaced x 3; AVF surgery deferred b/o CVDz; several transfusions Now s/p AMI x 2 and PTA x 5; many transfusions for MDS; eGFR 30 ml/min Presents to CKD Clinic with eGFR 39 ml/min HD chosen and AVF placed Died at home May 2010-Dec 2010 Jan 2011-June 2011 Jan 2010-April 2010 May 2007-Dec 2009 AMI with pulmonary edema; ER HD started via TCC (AVF nonfx) After 7 months, lost to followup for 24 months; eGFR still 39 ml/min Stable AP; starts ESA and Fe therapy at CKD Clinic; CKD options presented Recurrent AP and PTA; GI bleed; continues with TCC • Provide education earlier on and engage family in descriptions of options , risksand 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.

42. 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.

43. 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. ClinJ Am SocNephrol 4: 1611-1619, 2009. Wong. RenFail 29:653-659, 2007.

44. 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 GeriatrSoc 55:1007-1014, 2007. • Hooper. MJA 165: 416-419. 1996. • Murray. Neurology 67:216-223, 2006.

45. 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.

46. 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.

47. 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.

48. Taking an Age-Attuned ApproachSpecific 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 SocNephrol 14:1012-1021, 2003. Eriksen. Kidney Int 69:375-382, 2006. Dalrymple. J Gen Intern Med 26:379-38, 2011.

49. Taking an Age-Attuned ApproachSpecific 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.

50. 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.