Indian Journal of Critical Care Medicine

Register      Login



Volume / Issue

Online First

Related articles

VOLUME 22 , ISSUE 4 ( 2018 ) > List of Articles


Definition of terms used in limitation of treatment and providing palliative care at the end of life: The Indian council of medical research commission report

Stanley Macaden, Nagesh Simha, M. R. Rajagopal

Keywords : End of life, limitation of treatment, palliative care

Citation Information : Macaden S, Simha N, Rajagopal MR. Definition of terms used in limitation of treatment and providing palliative care at the end of life: The Indian council of medical research commission report. Indian J Crit Care Med 2018; 22 (4):249-262.

DOI: 10.4103/ijccm.IJCCM_165_18

License: CC BY-ND 3.0

Published Online: 01-12-2017

Copyright Statement:  Copyright © 2018; The Author(s).


Background: Indian hospitals, in general, lack policies on the limitation of inappropriate life-sustaining interventions at the end of life. To facilitate discussion, preparation of guidelines and framing of laws, terminologies relating to the treatment limitation, and providing palliative care at the end-of-life care (EOLC) need to be defined and brought up to date. Methodology: This consensus document on terminologies and definitions of terminologies was prepared under the aegis of the Indian Council of Medical Research. The consensus statement was created using Nominal Group and Delphi Method. Results: Twenty-five definitions related to the limitations of treatment and providing palliative care at the end of life were created by reviewing existing international documents and suitably modifying it to the Indian sociocultural context by achieving national consensus. Twenty-five terminologies defined within the scope of this document are (1) terminal illness, (2) actively dying, (3) life-sustaining treatment, (4) potentially inappropriate treatment, (5) cardiopulmonary resuscitation (CPR), (6) do not attempt CPR, (7) withholding life-sustaining treatment, (8) withdrawing life-sustaining treatment, (9) euthanasia (10) active shortening of the dying process, (11) physician-assisted suicide, (12) palliative care, (13) EOLC, (14) palliative sedation, (15) double effect, (16) death, (17) best interests, (18) health-care decision-making capacity, (19) shared decision-making, (20) advance directives, (21) surrogates, (22) autonomy, (23) beneficence, (24) nonmaleficence, and (25) justice.

PDF Share
  1. Ferrand E, Robert R, Ingrand P, Lemaire F; French LATAREA Group. Withholding and withdrawal of life support in Intensive-Care Units in France: A prospective survey. French LATAREA Group. Lancet 2001;357:9-14.
  2. Sprung CL, Cohen SL, Sjokvist P, Baras M, Bulow HH, Hovilehto S, et al. End-of-life practices in European Intensive Care Units: The Ethicus study. JAMA 2003;290:790-7.
  3. Kapadia F, Singh M, Divatia J, Vaidyanathan P, Udwadia FE, Raisinghaney SJ, et al. Limitation and withdrawal of intensive therapy at the end of life: Practices in Intensive Care Units in Mumbai, India. Crit Care Med 2005;33:1272-5.
  4. Mani R. Limitation of life support in the ICU: Ethical issues relating to end of life care. Indian J Crit Care Med 2003;7:112.
  5. Mani RK, Mandal AK, Bal S, Javeri Y, Kumar R, Nama DK, et al. End-of-life decisions in an Indian Intensive Care Unit. Intensive Care Med 2009;35:1713-9.
  6. Macaden SC, Salins N, Muckaden M, Kulkarni P, Joad A, Nirabhawane V, et al. End of life care policy for the dying: Consensus position statement of Indian association of palliative care. Indian J Palliat Care 2014;20:171-81.
  7. Mani RK. End-of-life care in India. Intensive Care Med 2006;32:1066-8.
  8. Barnett VT, Aurora VK. Physician beliefs and practice regarding end-of-life care in India. Indian J Crit Care Med 2008;12:109-15.
  9. Byock IR. The nature of suffering and the nature of opportunity at the end of life. Clin Geriatr Med 1996;12:237-52.
  10. Gordon J. Medical humanities: To cure sometimes, to relieve often, to comfort always. Med J Aust 2005;182:5-8.
  11. Cassel CK, Field MJ. Approaching Death: Improving Care at the End of Life. National Academies Press; 1997.
  12. Bryce CL, Loewenstein G, Arnold RM, Schooler J, Wax RS, Angus DC, et al. Quality of death: Assessing the importance placed on end-of-life treatment in the Intensive-Care Unit. Med Care 2004;42:423-31.
  13. Leung KK, Tsai JS, Cheng SY, Liu WJ, Chiu TY, Wu CH, et al. Can a good death and quality of life be achieved for patients with terminal cancer in a Palliative Care Unit? J Palliat Med 2010;13:1433-8.
  14. Prendergast TJ, Claessens MT, Luce JM. A national survey of end-of-life care for critically ill patients. Am J Respir Crit Care Med 1998;158:1163-7.
  15. Smith R. Principles of a good death. Br Med J 2000;320:129-30.
  16. Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA, et al. In search of a good death: Observations of patients, families, and providers. Ann Intern Med 2000;132:825-32.
  17. Chapman L, Ellershaw J. Care in the last hours and days of life. Medicine 2011;39:674-7.
  18. Horton JN. Nominal group technique. A method of decision-making by committee. Anaesthesia 1980;35:811-4.
  19. Okoli C, Pawlowski SD. The Delphi method as a research tool: An example, design considerations and applications. Inf Manage 2004;42:15-29.
  20. McCartney JJ, Trau JM. Cessation of the artificial delivery of food and fluids: Defining terminal illness and care. Death Stud 1990;14:435-44.
  21. Hui D, Nooruddin Z, Didwaniya N, Dev R, De La Cruz M, Kim SH, et al. Concepts and definitions for “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care”: A systematic review. J Pain Symptom Manage 2014;47:77-89.
  22. Jesus JE, Geiderman JM, Venkat A, Limehouse WE Jr., Derse AR, Larkin GL, et al. Physician orders for life-sustaining treatment and emergency medicine: Ethical considerations, legal issues, and emerging trends. Ann Emerg Med 2014;64:140-4.
  23. Bosslet GT, Kesecioglu J, White DB. How should clinicians respond to requests for potentially inappropriate treatment? Intensive Care Med 2016;42:422-5.
  24. Driscoll P. Cardio pulmonary resuscitation. J Accid Emerg Med 1994;11:56.
  25. Sidhu NS, Dunkley ME, Egan MJ. “Not-for-resuscitation” orders in Australian public hospitals: Policies, standardised order forms and patient information leaflets. Med J Aust 2007;186:72-5.
  26. Lanken PN, Ahlheit BD, Crawford S, Hansen-Flaschen JH, Lefrak SS, Luce JM, et al. Withholding and withdrawing life-sustaining therapy. Am Rev Respir Dis 1991;144:726-31.
  27. Materstvedt LJ, Clark D, Ellershaw J, Førde R, Gravgaard AM, Müller-Busch HC, et al. Euthanasia and physician-assisted suicide: A view from an EAPC ethics task force. Palliat Med 2003;17:97-101.
  28. Snyder L, Sulmasy DP; Ethics and Human Rights Committee, American College of Physicians-American Society of Internal Medicine. Physician-assisted suicide. Ann Intern Med 2001;135:209-16.
  29. WHO. Palliative care. WHO; 2007.
  30. Sulmasy DP, Lynn J. End-of-life care. JAMA 1997;277:1854-5.
  31. Cherny NI, Radbruch L; Board of the European Association for Palliative Care. European association for palliative care (EAPC) recommended framework for the use of sedation in palliative care. Palliat Med 2009;23:581-93.
  32. de Graeff A, Dean M. Palliative sedation therapy in the last weeks of life: A literature review and recommendations for standards. J Palliat Med 2007;10:67-85.
  33. McIntyre A. The double life of double effect. Theor Med Bioeth 2004;25:61-74.
  34. Wijdicks EF. The diagnosis of brain death. N Engl J Med 2001;344:1215-21.
  35. Cate FH. Human organ transplantation: The role of law. J Corp Law 1994;20:69.
  36. Donnelly M. Best interests, patient participation and the mental capacity act 2005. Med Law Rev 2009;17:1-29.
  37. Elwyn G, Edwards A, Kinnersley P, Grol R. Shared decision making and the concept of equipoise: The competences of involving patients in healthcare choices. Br J Gen Pract 2000;50:892-9.
  38. Silveira MJ, Kim SY, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med 2010;362:1211-8.
  39. Schwab AP. Formal and effective autonomy in healthcare. J Med Ethics 2006;32:575-9.
  40. Pellegrino ED. For the Patient's Good: The Restoration of Beneficence in Health Care. 1988.
  41. Gillon R. “Primum non nocere” and the principle of non-maleficence. Br Med J (Clin Res Ed) 1985;291:130-1.
  42. Daniels N. Justice, health, and healthcare. Am J Bioeth 2001;1:2-16.
  43. Peppercorn JM, Smith TJ, Helft PR, Debono DJ, Berry SR, Wollins DS, et al. American society of clinical oncology statement: Toward individualized care for patients with advanced cancer. J Clin Oncol 2011;29:755-60.
  44. Cremer R, Hubert P, Grandbastien B, Moutel G, Leclerc F; GFRUP's Study Group on Forgoing Treatments. Prevalence of questioning regarding life-sustaining treatment and time utilisation by forgoing treatment in francophone PICUs. Intensive Care Med 2011;37:1648-55.
  45. Bosslet GT, Pope TM, Rubenfeld GD, Lo B, Truog RD, Rushton CH, et al. An official ATS/AACN/ACCP/ESICM/SCCM policy statement: Responding to requests for potentially inappropriate treatments in Intensive Care Units. Am J Respir Crit Care Med 2015;191:1318-30.
  46. Jacobs I, Nadkarni V, Bahr J, Berg RA, Billi JE, Bossaert L, et al. Cardiac arrest and cardiopulmonary resuscitation outcome reports: Update and simplification of the Utstein templates for resuscitation registries. A statement for healthcare professionals from a task force of the international liaison committee on resuscitation (American Heart Association, European Resuscitation Council, Australian Resuscitation Council, New Zealand Resuscitation Council, Heart and Stroke Foundation of Canada, InterAmerican Heart Foundation, Resuscitation Council of Southern Africa). Resuscitation 2004;63:233-49.
  47. Cartwright CM, Parker MH. Advance care planning and end of life decision making. Aust Fam Physician 2004;33:815-9.
  48. Sprung CL, Truog RD, Curtis JR, Joynt GM, Baras M, Michalsen A, et al. Seeking worldwide professional consensus on the principles of end-of-life care for the critically ill. The consensus for worldwide end-of-life practice for patients in Intensive Care Units (WELPICUS) study. Am J Respir Crit Care Med 2014;190:855-66.
  49. Downar J, Delaney JW, Hawryluck L, Kenny L. Guidelines for the withdrawal of life-sustaining measures. Intensive Care Med 2016;42:1003-17.
  50. Ebrahimi N. The ethics of euthanasia. Aust Med Stud J 2012;3:73-5.
  51. Weiss M. Illinois death with dignity act: A case for legislating physician assisted suicide and active euthanasia. Ann Health Law Adv Directive 2014;23:13-198.
  52. Jinaru A. The practice of euthanasia – A criminal or compassionate act? Washington, USA: Knowledge and Action Within the Knowledge Based Society; 2012. p. 149.
  53. Bosshard G, Nilstun T, Bilsen J, Norup M, Miccinesi G, van Delden JJ, et al. Forgoing treatment at the end of life in 6 European countries. Arch Intern Med 2005;165:401-7.
  54. Slomka J. The negotiation of death: Clinical decision making at the end of life. Soc Sci Med 1992;35:251-9.
  55. Ellershaw J, Ward C, Neuberger J. Care of the dying patient: The last hours or days of life/commentary: A” good death” is possible in the NHS. Br Med J 2003;326:30.
  56. Mani RK. Coming together to care for the dying in India. Indian J Crit Care Med 2014;18:560-2.
  57. Mani R, Amin P, Chawla R, Divatia J, Kapadia F, Khilnani P, et al. Limiting life-prolonging interventions and providing palliative care towards the end-of-life in Indian Intensive Care Units. Indian J Crit Care Med 2005;9:96.
  58. Truog RD, Meyer EC, Burns JP. Toward interventions to improve end-of-life care in the pediatric Intensive Care Unit. Crit Care Med 2006;34:S373-9.
  59. Cassell EJ, Rich BA. Intractable end-of-life suffering and the ethics of palliative sedation. Pain Med 2010;11:435-8.
  60. Rousseau P. Existential Suffering and Palliative Sedation: A Brief Commentary With a Proposal for Clinical Guidelines. Thousand Oaks, CA: Sage Publications; 2001.
  61. Simpson P, Bates D, Bonner S, Costeloe K, Doyal L, Falvey S, et al. A code of practice for the diagnosis and confirmation of death. London, United Kingdom: GB. Acadamy of Medical Royal Colleges; 2008.
  62. Doyal L. The moral character of clinicians or the best interests of patients? BMJ 1999;318:1432-3.
  63. Greaney N. Mental Capacity Act 2005: Law Society London; 2005.
  64. Bartlett P. Blackstone's Guide to the Mental Capacity Act 2005; 2008.
  65. Coulter A, Edwards A, Elwyn G, Thomson R. Implementing shared decision making in the UK. Z Evid Fortbild Qual Gesundhwes 2011;105:300-4.
  66. Stiggelbout AM, Van der Weijden T, De Wit MP, Frosch D, Légaré F, Montori VM, et al. Shared decision making: Really putting patients at the centre of healthcare. BMJ 2012;344:e256.
  67. Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T. Association between advance directives and quality of end-of-life care: A national study. J Am Geriatr Soc 2007;55:189-94.
  68. Closen ML, Maloney JE. The health care surrogate act in Illinois: Another rejection of domestic partners' rights. South Ill Univ Law J 1994;19:479.
  69. Shroff S. Legal and ethical aspects of organ donation and transplantation. Indian J Urol 2009;25:348-55.
  70. O'Neill RJ. Surrogate health care decisions for adults in Illinois-answers to the legal questions that health care providers face on a daily basis. Loyola Univ Chicago Law J 1997;29:411.
  71. Truog RD, Campbell ML, Curtis JR, Haas CE, Luce JM, Rubenfeld GD, et al. Recommendations for end-of-life care in the Intensive Care Unit: A consensus statement by the American College [corrected] of Critical Care Medicine. Crit Care Med 2008;36:953-63.
  72. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. USA: Oxford University Press; 2001.
  73. Crippen DW, Kilcullen JK, Kelly DF. Three Patients: International Perspective on Intensive Care at the End of Life. Kluwer Academic Publishers, London: Springer Science & Business Media; 2002.
  74. Cook D, Rocker G, Heyland D. Dying in the ICU: Strategies that may improve end-of-life care. Can J Anaesth 2004;51:266-72.
  75. Medical Treatment of Terminally ill Patients (for the Protection of Patients and Medical Practitioners) 196th Report of Law Commision of India; 2006. Available from: [Last accessed on 2014 Aug 05].
  76. Quill TE, Dresser R, Brock DW. The rule of double effect – A critique of its role in end-of-life decision making. N Engl J Med 1997;337:1768-71.
  77. Thompson BT, Cox PN, Antonelli M, Carlet JM, Cassell J, Hill NS, et al. Challenges in end-of-life care in the ICU: Statement of the 5th International Consensus Conference in Critical Care: Brussels, Belgium, April 2003: Executive summary. Crit Care Med 2004;32:1781-4.
  78. Hall RI, Rocker GM, Murray D. Simple changes can improve conduct of end-of-life care in the Intensive Care Unit. Can J Anaesth 2004;51:631-6.
  79. ICMR. National Ethical Guidelines for Biomedical and Health Research Involving Human Participants. New Delhi: ICMR; 2017.
PDF Share
PDF Share

© Jaypee Brothers Medical Publishers (P) LTD.