“ End-of-life Care: the Neglected Core Business of Medicine ” Lancet, Editorial 2012

1. “End-of-life Care: the Neglected Core Business of Medicine”Lancet, Editorial 2012

3. “Kill me. I cant bear this pain any more. My doctor says nothing more can be done”

4. Chronic Diseases and Health Care Institutions Health care institutions are traditionally geared to look after patients with acute diseases

5. Care of a Patient with an Incurable Disease What happens to a patient like her who needs regular attention for the rest of his/ her life?

6. Symptoms in Advanced Diseases Pain 67% Trouble breathing 49% Nausea and vomiting 27% Sleeplessness 36% Confusion 38% Depression 36% Loss of appetite 38% Constipation 32% Bedsores 14% Incontinence 33% Seale and Cartwright “The Year Before Death” Avebury 1994

7. Psychological Suffering Anxiety, depression, fear, sadness, hopelessness loneliness and anger

8. Social Suffering • Social Isolation • Dependence on others • Social stigmas like ‘cancer will spread’ or ‘it is a curse’

9. …Social Suffering • Access to care • Family members quit work to provide care

10. Spiritual/ Existential Distress • Why me? • Why is God punishing me?

11. Total Suffering Social Physical Spiritual Emotional

12. Palliative Care An active, total care of patients with advanced progressive diseases, aiming at • Control of pain and other symptoms, • Offering psychological, social, and spiritual support

13. Global Trend

14. Palliative Care & European Union 6.3. European Health Committee (CDSP) Recommendation Rec (2003) … of the Committee of Ministers to member states on the organisation of palliative care Explanatory Memorandum. (Ministers' Deputies CM Documents CM(2003)130 Addendum 15 October 2003)

15. 1st International consensus guidelines for advanced breast cancer The Breast xxx (2012) 1-11 Supportive and palliative care guidelines (Table 9) The role of supportive and expert palliative carein the treatment of advanced cancer is crucial and supported by extensive evidence

16. CHEST 2013; 143(5)(Suppl):e498S–e512S

17. UN Special Rapporteur on Torture and other Cruel, Inhuman or Degrading Treatment or Punishment- 2013 (Human Rights Council Twenty-second session Agenda item 3 ) Denial of pain treatment is a form of abuse in health-care settings that is tantamount to torture or cruel, inhuman or degrading treatment or punishment.

18. “Unbearable Pain: India’s Obligation to Ensure Palliative Care”, Human Right Watch www.hrw.org/en/reports/2009/10/28/unbearable-pain-0

19. Need for Palliative Care in India • India is experiencing an epidemiological transition • A growing burden of non-communicable diseases and chronic diseases becoming the leading causes of death in rural India Joshi R, et al. Mortality data from the Andhra Pradesh Rural Health Initiative. Int J Epidemiol 2006;35:1522–29.

20. Incurable Diseases in India • 2.5 Million people suffering from Cancer • More than 70% in advanced stage http://www.mohfw.nic.in/kk/95/i9/95i90e01.htm, Nandakumar A. National Cancer Registry Programme, Indian Council of Medical Research, Consolidated report of the population based cancer registries, New Delhi, India: 1990-96.).

21. Childhood Cancer • 50,000 children with cancer every year • Cure rate <20%

22. Access to Palliative Care in India Less than 0.4 % of needy have access to any palliative care or pain relief program

23. Jammu & Kashmir Himachal Pradesh Ludhiana Chandigarh Punjab Uttaranchal Haryana Delhi Arunacha Pradesh Digboi Uttar Pradesh Assam Rajasthan Gauhati Jaipur Bihar Jharkhand Madhya Pradesh Calcutta Gujarat Indore Chhattisgarh Orissa West Bengal Cuttack Maharashtra Population-1.21 Billion (17% of world population) Mumbai Pune Hyderabad ANDHRA PRADESH Karnataka Goa Chennai Bangalore Kerala Calicut Coimbatore Lakshadweep Trichur Tamil Nadu Malappuram Andaman & Nicobar Islands Alleppey Map not to scale Trivandrum

24. Barriers

25. WHO Approach to Palliative Care

26. Barrier- Opioid Availability Oral Morphine is the mainstay of treatment for severe cancer or AIDS Pain WHO

27. India’s Paradox • India exports opium to rest of the world • Per capita consumption ranking among the lowest in world

28. Opioid Availibility • Stringent Regulations • Poor awareness and education among health professionals and public

29. Policy Palliative care should be an integral part of a comprehensive Cancer / HIV AIDS program in a developing country WHO

30. Barrier- Policy National Cancer control Program since 1991 Only 18 out of 29 major cancer centers have palliative care

31. State Health Policy on Palliative Care • Kerala • Tamil Nadu • Maharashtra

32. Kerala and Palliative Care Collaborating Center of WHO (WHO CC) • Calicut for community participation in palliative care and Long Term Care • Pallium India for training and opioid availability

33. Policy Development by the Government of AP • 14th state to amend regulations related to opioid availability • Creation of faculty and staff position at MNJ Institute of Oncology • Inclusion of cancer palliative care in the state sponsored insurance scheme

34. Palliative Care in Hospitals Meeting Accreditation Standards (NABH) • End of Life Care Policy • Pain measurement

35. Training of Health Professionals

36. Palliative Medicine and Palliative Nursing An emerging specialty

37. Physician Specialist Recognition • UK – subspecialty since 1987, now 310 consultant specialists • UNITED STATES Introduced Hospice and palliative medicine as subspecialty by the American Board of Medical Specialties (ABMS) in 2006

38. Training in Palliative Care among Health Professionals • Communication • Decision-making 3. Pain and symptom control 4. Management of medical complications 5. Psychosocial care of patient and family 5. Care of the dying (WHO, 1995)

39. Medical Council of India introduces PC as a specialty 2011

40. End-of-life care: the neglected core business of medicine Despite several reports and guidelines over the past few years on the importance of managing end-of-life care, knowledge and confidence among hospital doctors is still far from ideal.. www.thelancet.com, Editorial, Vol 379, March 31,2012

41. Service Delivery • Hospital-based In-patient out-patient • Home-based care • Hospice Care

42. Hospital-based Palliative Care, MNJ Institute of Oncology and RCC • A well established Department • Uninterrupted supply of morphine

43. Total Adult Patients seen in the Department of Palliative Care 2006-2012

44. Pediatric Palliative Care

45. Training and Education • One of the regional training center for palliative care in India, other SE Asian and Africa • A Center of Excellence for PDCC in Pain and Palliative Medicine by NTR

46. Hospital-based Palliative Care, MNJIO In partnership • International Network for Cancer Treatment and Research (INCTR) • Pain Relief and Palliative Care Society, Hyderabad • PalliumIndia

47. “Life At Your Door Step” Continuity of Care for Patients with advanced cancer until their death and support of family thereafter An Initiative of Pain Relief and Palliative Care Society, Hyderabad

50. Rural Outreach Program- Chevalla