End Of Life Care

End of Life care and decisions before the end of Life

1. End-of-life care Dr Subraham Pany

2. CONTENTS AND understanding OF the PRESENTATION : An approach to the terminally ill – a learners point of view. Understanding basics of palliative care. How does it influences the life of a patient and his care givers. Domains and concerns of palliative care How does or how should this learning influence you.

3. PRESENTATION A BASIC UNDERSTANDING OF TERMINAL STAGE, DEATH AND BEREAVMENT CONSIDERING BOTH THE PATIENT AND FAMILY MEMBERS UNDERSTANDING BASIC PALLIATIVE CARE

4. This is how we look at life. We expect it to just go on and on.

5. But… what if there is a chronic disease?

6. Fortunately, medicine today can help us recover and keep us comfortable.

7. However, at times medicine cannot stop the progress of the disease.

8. When the doctor indicates the end is near, the patient finds it difficult to believe … What! Am I serious ? What will happen to my family? How long do I have?

9. Are you sure? … so does the family. What do we do? There is nothing you can do?

10. The patient and the family must feel free to share their fears and concerns with the doctor. Is it rude to ask the doctor? Will the doctor have time to talk to us? What if my question is silly? The doctor knows best, so why ask?

11. This is the time for some honest communication, the time to take some decisions together .

12. No pain, no distress to the patient at any time. Always respect the patient’s dignity, likes and the right to make decisions. Allow the patient to express preferences about end-of-life care.

13. I want to die at home. I want my wife near me when I die. Tell my friend to forgive me. I want the priest to help me pray. No life support for me please It is important to honour the patient’s wishes.

14. Apart from pain & comfort care, end-of-life care provides: psychological, spiritual and social support.

15. Life eventually ends, but end-of-life care does not.

16. Bereavement support helps the family cope and start afresh.

17. End-of-life care is about never stopping to care, even when we cannot cure. “Never say ‘I can not do any thing more’, Always say ‘I can do some thing more’” Because there is always something more that we can do. “Never say No”

18. The care with which we treat the dying affirms that our humanity is living.

19. Together we choose.

20. Palliative Care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illnesses, through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Definition: REF: WORLD HEALTH ORGANISATION / PALLIATIVE CARE

21. The Palliative Care approach aims to promote physical, psychosocial and spiritual well-being.

22. Good quality palliative care can be defined as the care, which I would be happy to have given to a member of my own family if he or she was dying, or to receive myself when my time comes.

23. History of palliative care Palliative care is not new. Care of the dying has been a constant feature of human society throughout the history. We have ancient traditions in India of looking after those who are dying with special care and attention. The Eighteen institutions built in India by King Asoka (273 – 232 BC) had characteristics very similar to modern hospices. He had even established a refuge for the dying in Varanasi near the sacred river Ganges. [REF: HANDBOOK FOR CERTIFICATE COURSE IN ESSENTIALS OF PALLIATIVE CARE;REVISED FOURTH EDITION 2015]

24. B est known for her role in the birth of the hospice movement, emphasizing the importance of palliative care in modern medicine. She was a prominent Anglican, nurse, physician and writer, involved with many international universities. She helped the dying and terminally ill end their lives in the most comfortable ways possible . She developed the first ever hospice “St Christopher’s Hospice” in 1948 Dame Cicely Mary Saunders [REF: HANDBOOK FOR CERTIFICATE COURSE IN ESSENTIALS OF PALLIATIVE CARE;REVISED FOURTH EDITION 2015]

25. Empathetic Hospice care Death autonomy Clear decisions Breaking bad news Poly pharmacy Holistic approach Total pain PALLIATIVE CARE: A MULTI DISCIPLINARY & MULTI FOCUSED APPROACH

26. Understanding pain : touch – healing – active listening – mind shift –presence of near & dear ones . Avoiding unnecessary interventions Respecting ones will Not letting the sufferer feel underprivileged Treating and caring more through the heart than through the mind (brain)

27. With a crude death rate of 6.24/1000 and a population of more than a billion, the total number of people dying every year in India is about seven million. M ore than 4 million of them would benefit from palliative care. But only Less than 1% of those who need palliative care services have any access to such services in the country. Kerala is the only state in India to have medical and legislative norms to provide palliative care to the needy. PROBLEM SCENARIO

28. The present medical establishment, with its hospital-centred services, is geared basically to look after patients with acute illness. This acute-care orientation is reflected in the current emphasis on illness diagnosis, patient-initiated consultations, and curative and/or symptom relieving treatments. Patients with chronic and incurable illness on the other hand need a regular system of support available in the community.

29. How should this presentation help you ???

30. * You should have a more empathetic attitude towards the sufferer. * We must understand that caring doesn't end with the death of the patient. * Care should be by involving family and other health associates. * Pain is not just physical, its more of the mind . * A fundamental understanding of WHO pain ladder . * Judicious use of analgesics. * Palliative care is / can be given along with other on going therapies. * And PLAN YOUR DEATH –DEATH AUTONOMY/DEATH WILL.

31. KEY POINTS TO REMEMBER: Palliative care is not necessarily for the terminally ill It is not only for cancer patients Morphine is the best analgesic to be given for refractory pain management cases / for severe unbearable pain Oral morphine is effective than I.V (Morphine doesn't causes addiction , respiratory distress or any major adverse effects) Palliative medicine is a community approach . Palliative care affirms dignity at end of life and ensures bereavement care.

32. A good death is achieved when: • The patient’s pain and other physical symptoms have been adequately controlled • The patient has had time to - Evaluate his Life Journey - Review his achievements and failures - Forgive and ask for forgiveness - Reconcile with self, family and God - Say ‘I love you’ - Accept death and be ready to say ‘Good Bye’ Ultimately, the goal is to do what is good for the patient and as life is drawing to a close, to lead him towards a ‘good’ or peaceful death.

33. Plan your life so that you can live fully . Plan your death so that you can die peacefully. “ LOVE YOUR LIFE - TO - DEATH “