ADVANCE CARE PLANNING FOR KIDNEY PATIENTS: THE IMPORTANCE OF AN ONGOING DISCUSSION

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1 ADVANCE CARE PLANNING FOR KIDNEY PATIENTS: THE IMPORTANCE OF AN ONGOING DISCUSSION Melissa Hale, MSW, LCSW Advance Care Planning Coordinator ProHealth Care

2 Thank You.

3 CMS: Conditions for Coverage Renal social workers are required to ask about advance care planning according to Condition Patient Rights (a)(6) When do you discuss ACP with your patients? How often?

4 Dialysis is lifesaving; kidney disease is deadly Despite improvements in survival on dialysis, 54% of hemodialysis patients and 65% of peritoneal patients are alive three years after ESRD onset. USRDS Annual Report 2012

5 USRDS Annual Report 2012 Dialysis and Transplant are Lifesaving; Kidney Disease is deadly

6 Weighing Transplant Risks vs. Dialysis Life Expectancy 90% 80% 70% 74% 82% 60% 50% 40% 30% 20% 10% 0% USRDS Annual Report, % 5 Year Survival On Dialysis Deceased Donor Transplant Living Donor Transplant

7 What are dialysis patients dying from?

8 What are dialysis patients dying from? Top Three Causes (71% of total deaths): 1. Infection 36% 2. Withdrawal from Dialysis 21 % 3.Cardiac Problems 14% American Journal of Kidney Disease; 1991; Sep;18(3): Mortality in dialysis patients: analysis of the causes of death.

9 Reasons for Withdrawal of Dialysis Unacceptable QOL or failure to thrive Acute complications Dementia Stroke Malignancy Other Dying Well after discontinuing the life-support treatment of dialysis Amer Journal of Kidney Disease 36(1):140 36(1): , , 2000

10 CPR and Dialysis *3 studies have looked at CPR outcomes in a total of 137 dialysis patients. *Survival to discharge was seen in 14% of patients. *Long-term survival: of 74 patients undergoing CPR, only 2 (3%) survived six months (vs. 9% of non-dialysis controls)

11 Are we preparing our dialysis patients enough? Most often, end-of-life topics such as prognosis, the process of dying, and spirituality are rarely discussed. It s not just dialysis; same findings for COPD and CHF patients McAddo, et. al Nephrology Dialysis Transplant 2012; 27:

12 Are we preparing our dialysis patients enough? Only 28% of the dialysis patients who died in the hospital had discussed issues concerning end-of-life care with their medical team in the year before their death. In other words, 72% of dialysis patients who died in the hospital did NOT discuss EOL concerns with their medical team. McAddo, et. al Nephrology Dialysis Transplant 2012; 27:

13 Dialysis patients get more invasive treatments at end of life than other patients Nearly 80% of Medicare patients on dialysis were hospitalized in the last 30 days before death and spent TWICE as many days in the hospital as patients dying of cancer Only 20% of the kidney failure patients were referred to hospice, compared with 40% of CHF patients and 55% of cancer patients American Medical News Amednews.com

14 QOD: Quality of Death When asked people want: Painless or largely pain-free Happening in the company of loved-ones Peaceful Asleep At home Mentally Alert

15 So what is the benefit of EOL Discussions? Terminally ill patients who had engaged in end-of-life discussions had greater quality of life and death, fewer futile interventions due to advance decision making and significantly lower health care costs in their final week of life. Zhang B, Wright, A. Huskamp H et al. Health care costs in the last week of life Arch Intern Med 2009; 169:

16 So what is the benefit of EOL Discussions? Ethical Financial Quality of life Good practice Allows time to prepare Zhang B, Wright, A. Huskamp H et al. Health care costs in the last week of life Arch Intern Med 2009; 169:

17 Discussion: What if you were a kidney patient? Would you want to know the odds? Why? What kind of care would you want? Who would you want to help make decisions? If/When would you want to withdraw from dialysis?

18 So how do you start the discussion?

19 So how do you start the discussion? I d like to discuss advance care planning with you.. Dr. Smith encourages each of his patients to have one, regardless of age or health condition. I recently completed mine and it was easier to complete than I thought. What do you understand about Advance Care Planning? If something happened to you and you couldn t speak for yourself, do you have a loved one who could speak on your behalf?

20 Personal reference So how do you start the discussion? Motivational Interviewing Intrigue provide education In groups Start small; plant the seed

21 Having an ONGOING discussion is most important Not just one and done Should discuss at least annually, when there is a new diagnosis, decline in function or other psychosocial or medical changes. Patients are not as fearful to discuss this as we think! (NKF story)

22 Informed Decision Making Have all the facts Time to make a thoughtful decision, if possible Trust providers Patient Autonomy vs. Family Wishes

23 Current Trends: Recommendations from the RPA 1. Give all patients with AKI, Stage 5 CKD or ESRD an estimate of prognosis specific to their overall condition 2. Institute advance care planning 3. Offer palliative care services and interventions to all AKI, CKD and ESRD patients who suffer from burdens of their disease.

24 Current Trends: Palliative Care and ACP with Dialysis Patients Conservative Management vs. Dialysis Automatic referrals to palliative care for CKD stage 4 patients Standardization of ACP process within dialysis setting Specific trainings and certifications for nephrologists and dialysis staff on ACP and palliative care

25 Tools for the Kidney Social Worker

26 Tools for the Renal Social Worker

27 Tools: Mortality Predictor

28 Current Trends: Renal Palliative Care Renal Palliative Care Initiative (RPCI) Syllabus for nephrology training program Kidney End-of-life Coalition Coalition for Supportive Care of Kidney Patients

29 Thank You!

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