A CONCEPT NOTE FOR PALLIATIVE CARE IN INDIA: USING THE EXAMPLE OF CHRONIC KIDNEY DISEASE

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1 A CONCEPT NOTE FOR PALLIATIVE CARE IN INDIA: USING THE EXAMPLE OF CHRONIC KIDNEY DISEASE Dr.Mukesh Shete Consultant Nephrologist Director, Apex Kidney Care

2 DEFINITION AND CONCEPTUAL FRAMEWORK OF SUPPORTIVE CARE IN KIDNEY DISEASE

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5 CASE : The patient is a 56 year old female with ESRD secondary to diabetic nephropathy who was admitted several times in last 6 mths The patient has been on dialysis for seven years and is transported by ambulance for her treatments. Her other medical problems include retinopathy with limited vision, CVA with left hemiplegia, and peripheral vascular disease with right below knee amputation done. She has severe difficulties with constipation. She is unable to walk or transfer herself from chair to 5 stretcher.

6 ESRD Patient Probability of Survival Patient Population Survival (%) 1-yr for all incident patients, unadjusted 78 1-yr for incident patients >65 yrs, unadjust 66 2-yr for all incident patients, unadjusted 63 2-yr for all incident patients >65 yrs, unadj 48 5-yr for all incident patients, unadjusted 33 5-yr for incident patients >65 yrs, unadj yr for all incident patients, unadjusted 9 10-yr for incident patients >65 yrs, unadj 3 USRDS, 2002 Annual Data Report

7 ESRD Patient Probability of Survival Patient Population Survival (%) 1-yr for all incident patients, unadjusted 78 1-yr for incident patients >65 yrs, unadjust 66 2-yr for all incident patients, unadjusted 63 2-yr for all incident patients >65 yrs, unadj 48 5-yr for all incident patients, unadjusted 33 5-yr for incident patients >65 yrs, unadj yr for all incident patients, unadjusted 9 10-yr for incident patients >65 yrs, unadj 3 USRDS, 2002 Annual Data Report

8 ESRD -End-of-Life Demographics Rising median age of dialysis population 48% > 65 yrs old Over 72,000 dialysis patients die per year ~20% die after decision to withdraw High percentage with comorbidities High in-hospital death (61% ) Unknown but low % die with hospice Alwin H Moss,West Virginia University 8

9 Some elderly people do well on dialysis prevalence of those aged over 75 years undergoing dialysis has doubled in the last 20 years MR JHON COMPLETES 30 YRS ON DIALYSIS ON 12 TH Dec 2015 But..many of them will not

10 To be dialysed or not to be dialysed Some studies report a prolongation in life among the elderly patients with ESKD who underwent dialysis as opposed to conservative management Joly D, Anglicheau D, Alberti C, Nguyen AT, Touam M, Grunfeld JP, et al. Octogenarians reaching endstage renal disease: cohort study of decision-making and clinical outcomes. J Am Soc Nephrol 2003;14: However, a retrospective review by Murtagh et al. found ESKD patients with ischemic heart disease or more than one comorbidity who chose not to accept dialysis treatment had the same survival as those that started dialysis Murtagh FE, Marsh JE, Donohoe P, Ekbal NJ, Sheerin NS, Harris FE. Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5. Nephrol Dial Transplant 2007;22:

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12 Definition : Palliative Care Palliative care is an approach that improves the quality of life of patients and their families facing...life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems: physical, psychosocial and spiritual. WORLD HEALTH ORGANISATION

13 Cont It does not simply mean conservative care in place of dialysis and does not mean no treatment. For example, the use of erythropoietin or darbepoietin has a major role in the supportive care of patients, and can be especially useful in those not wanting dialysis for control of symptoms of lethargy and fatigue.

14 Cont.. This is not rationing dialysis, but rational dialysis, i.e. limiting the use of dialysis therapy in circumstances that render them futile or even detrimental. Conservative management should aim to improve quality of life and treat uraemic symptoms,while fully supporting the patient and answering all their questions.

15 Supportive care should begin with the diagnosis of CKD ---How it is possible to have curative and supportive approach at the same time? DIET DRUGS DIALYSIS DONOR TO DEATH

16 Conceptual Framework for Palliative Care

17 End-of-Life Choice If you had to choose between being kept alive as long as possible even if you were experiencing pain & suffering Or living a shorter time to avoid pain and being put on machines, which would you pick? 80% 60% 76 % 40% 20% 0% 11 % 13 % Billings,BMJ,2000 B e i n g k e p t a l i v e L i v e s h o r t e r / a v o i d p a i n, m a c h i n e s D o n t k n o w

18 Meeting Report Kidney International 88, (September 2015) doi: /ki Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease: developing a roadmap to improving quality care Sara N Davison, Adeera Levin, Alvin H Moss, Vivekanand Jha, Edwina A Brown, Frank Brennan, Fliss E M Murtagh, Saraladevi Naicker, Michael J Germain, Donal J O'Donoghue, Rachael L Morton and Gregorio T Obrador Abstract

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22 PATIENT HEALTH WORKER EFFCTIVE PALLIATIVE CARE FAMILY

23 Factors affecting decision making Religious beliefs Cultural background Personal relationships (single/married/partnershi ps) Recent bereavement Family circumstances close/estranged Fear of the unknown Age Distance to travel QOL Co-morbidities The patient has decided to cease active treatment Inability to sustain dialysis medical decision

24 Hurdle The integration of palliative care into the advanced care planning in ESKD can be complicated by the personal beliefs and values of health professionals. HEALTH CARE PROFESSIONAL Farber et al. showed that internists were much more likely to withhold treatment than withdraw it; as the latter could be viewed as leading to the death of the patient.

25 KEY CONCEPT : FAMILY AND TRAJECTORY OF END STAGE RENAL DISEASE Issues ESRD is a family focused journey (White, et al., 2004, p. 373) Often experience a position of silent bystander, feeling powerless & helpless in their caregiver role and guilt feeling Revolving door syndrome illness exacerbations & frequent hospitalizations enhance uncertainty of death (Winzelberg, Patrick, Rhodes & Deyo, 2005, p. 293) Entire family engaged wih patient

26 Barriers to good supportive care Personal Lack of common language between professionals, and inter-professional liaison and cultural and spiritual barriers between patients and support team Lack of education and training of paramedical team Fear of getting it wrong Poor interface with primary care Cognitive impairment in patients Environmental Lack of privacy, space and intimacy (on ward, for example;both physical and from interruptions, etc.) Lack of time (to develop relationship, communication, follow-up,on going support) Work load for staff (numbers of patients) rol Dial Transplant (2004) 19: Editorial Comments 1359

27 OBTAIN EDUCATION AND SKILL IN PALLIATIVE CARE DECISION OF FORGO DIALYSIS REFER TO HOSPICE OR PALLIATIVE CARE SPECIALIST ADVANCE CARE PLANNING INFORMATON ABOUT OUTCOMES OF CPR RPA/ASN STATEMENT BEREAVEMENT CALL

28 EPEC Education in Palliative and End-of-life Care Welcome to EPEC Our vision is that all patients will receive the primary palliative care that they need Our mission is to educate all health care professionals in the essential clinical competencies of palliative care Our goal is to bring palliative care practice and culture to nonpalliative care specialists and clinicians of all disciplines

29 Prepare yourself to feel badly Set the context Deliver the bad news clearly and unequivocally. Stop Ask for questions Never destroy hope Express your commitment of support. Make a plan Finally, follow up

30 Everyone plans for life but very few plans for death In simple words palliative care is planning for death Are the patients with incurable illness dying to live?, or they should be living to die,peacefully.

31 Conclusions Q Because of shortened life expectancy,endof-life care is particularly relevant for ESRD pts. Q Palliative care offers the treatment most pts and families want but is a new way of thinking. Q The knowledge and skills to provide palliative care for ESRD patients are available but not in widespread use. 31

32 Disconnect

33 Because of the nature of ESRD, palliative care needs to be considered as a part of the continuum of quality patient care 33

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35 ANY QUESTIONS?