Frequently Asked Questions about Palliative Care
World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with 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. Palliative care:
- provides relief from pain and other distressing symptoms;
- affirms life and regards dying as a normal process;
- intends neither to hasten or postpone death;
- integrates the psychological and spiritual aspects of patient care;
- offers a support system to help patients live as actively as possible until death;
- offers a support system to help the family cope during the patients illness and in their own bereavement;
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- will enhance quality of life, and may also positively influence the course of illness;
- is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.”
Is it terminal care?
No. It is not only terminal care or only for dying. Palliative care emphasizes the quality of life of the patient and the treatment required to maintain as normal and positive a life as possible, irrespective of the number of years of life left and whether or not eventual cure is possible.
How can I help?
We are looking for socially committed persons to help in voluntary services. Rehabilitation of a patient and his family will require all types of help-spiritual, emotional, monetary and physical.
Palliative care is “high-touch” care with special need for personal involvement and understanding.
If you have the heart to give… we have the avenue and the need
Some time in the late 1990s, the famous psycho-oncologist Buckman said that there was one missing chapter in Harrison’s Textbook of Internal Medicine. The missing chapter was, “What do you do when all the treatment advised in all the other chapters fail?”
Palliative care is that missing chapter.
It is about treating the illness rather than the disease (the term illness includes the disease but also encompasses the symptoms as well as psycho-social and spiritual problems that adversely affects the person and his family). But that is an oversimplified statement.
- What is palliative care? Is it just tender loving care?
- Is this terminal care?
- When does palliative care start? When the disease is declared incurable?
- And all this applies only to cancer and AIDS?
- Is not morphine what is used for pain relief?
- Will the patient on morphine be sedated for the rest of life?
- Will morphine not cause addiction?
- So there will be no withdrawal symptoms if morphine is symptomsped abruptly?
- If morphine is taken for pain now, will it become ineffective later when the pain gets worse?
- How about the risk of respiratory depression with oral morphine?
- What about pains that do not respond to morphine?
- Can palliative care be delivered by any doctor or nurse, or is it something to be done only by specialists?
- What role does a layman have in this? It is a medical problem, is it not?
- What a volunteer then needs is the will to help?
- What sort of training programs are available?
- Where can patients be referred to?
In life-threatening (and generally prolonged) illness like cancer, AIDS etc, quality of life is decreased by
- Physical problems like pain, nausea and vomiting, breathlessness, fungating ulcers and so on.
- Psychological problems like depression, anger or denial in response to the illness, emotional isolation etc.
- Social problems like financial burden induced by loss of employment, cost of treatment, social isolation etc.
- Spiritual pain (Why me? Why did God do this to me? Or What is the point of my being alive?)
Palliative care is the active total care of the person with such problems. The aim of treatment is improvement of quality of life. The disease process is actively addressed. For example, if it is amenable to surgery, chemotherapy or radiotherapy, these measures are pursued provided they can improve quality of life. Pain and other symptoms are actively treated. At the same time, the emotional, social and spiritual problems are attended to.
Not necessarily. The word terminal is usually used to mean limitation of life to a matter of days or weeks. While palliative care certainly includes terminal care, it also includes the care of patients who may have a long time to live. For example both in AIDS and in slow growing cancers, the patient may have long survival, and nevertheless palliative care is certainly needed.
It is important to make this clear to all palliative care workers and patients. Because palliative care is often associated with terminal care, patients are often brought for treatment only towards the end of life, unnecessarily suffering pain and other problems till the last week of life. We need to emphasize that (though we will try to make death comfortable when the time comes), the essence of palliative care is about providing a good quality of life.
In one word, no.
In answer to question 1, we saw the various problems that adversely affect quality of life. We can easily see that all these problems would exist at the time of diagnosis as well as all through the phase of treatment, whether it is radiotherapy, chemotherapy or surgery. Hence ideally, all principles of palliative care must be applied from the time of diagnosis. The patients’ need for emotional support may be most when the diagnosis is broken to him. Emotional support will also significantly increase the patient’s compliance to definitive treatment. So it will be best for the patient if modalities of palliative care are applied concurrent with definitive treatment. However, the need for palliative care does become more when the disease is declared incurable.
Some people continue to follow the old WHO definition and say that the term palliative care applies only to the incurable. They may then follow a different terminology and use the term supportive care to describe the active total care that is given during definitive treatment. The terminology matters little. What really matters is that you consider the patient as a whole and address all domains of the patients’ problems, whether or not the disease is curable.
Palliative care is not only for the patient; it is also for the family. Therefore it does not end even if the patient dies. It includes bereavement support for the family.
No. It applies to any long-standing disease that causes poor quality of life. Cardiac or renal disease, chronic pain states, quadriplegia or paraplegia, all may be need appropriate application of the same principles. Some people use the term long term care (LTC) to describe this.
And it includes rehabilitation of the patient and the family.
Morphine is only one of the drugs that are used to relieve pain. Morphine does not work in all pains. Only about two-thirds of all pains can be adequately treated with morphine. It is important that the type of pain is identified and the appropriate drugs are used. And morphine is seldom used alone. It is combined with other appropriate painkillers depending on the type of pain. If morphine is used in pains that are not morphine-responsive, it will only make the patient sedated and cause side effects.
No, certainly not. If morphine is used in morphine-responsive pain in the right dose, it does not cause sedation in the majority of cases. In fact the patient can often pursue a profession and lead a normal life while on morphine.
No, not if used properly. Medical science has clearly understood in the last few decades, that if morphine is used in doses adequate for pain relief, the incidence of addiction is very low. However, because of the possibility of addiction, it should be used over the long term with caution in non-cancer pain. In non-cancer pain, morphine or other opioids should not be first line drugs for long term relief, and when used, should be after careful evaluation, and with clear understanding by the patient.
That is not correct either. There may be withdrawal symptoms if morphine is withdrawn abruptly from someone who has been on the drug for a long time. But withdrawal symptoms do not mean addiction. We have to distinguish between addiction and physical dependence which are two separate entities. In simple terms, addiction can be described as psychological dependence, manifesting as craving for the drug, steadily increasing quantity of consumption unrelated to disease progress and continued use despite harm. If oral morphine is used in doses titrated to the degree of pain in opioid responsive pain, the chance of addiction is infinitesimally small.
No, this fear is unfounded too. Morphine can be continued as long as needed and continue to provide pain relief. Of course if the disease process and hence pain worsen, the patient’s need for morphine may increase too. But tolerance, manifesting as decreasing pain relief with continued use, is not a clinical problem with opioids. So morphine should not be reserved for the last few weeks of life. The time to start morphine is when pain demands it.
Used with reasonable caution, it is almost impossible to cause respiratory depression with oral morphine. The right dose of morphine is what is needed to relieve the pain. If this dose is exceeded, there are toxic signs like drowsiness, delirium and myoclonus. These serve as warning signs which prevent further consumption of the drug.
About one third of all pains fail to respond to morphine. Most neuropathic pains, for example, are only partially responsive to morphine. Assessment of the type of pain and evaluation of opioid sensitivity is therefore key to proper management of pain. Most of these pains can be adequately treated if we use the right combination of non-opioid analgesics and adjuvant drugs. Of course, to do this some training in evaluation of pain and management is necessary.
12. Can palliative care be delivered by any doctor or nurse, or is it something to be done only by specialists?
Palliative care is multi-disciplinary care. Family members, volunteers and professionals all have their role to play. But for any one to do this optimally, some training is necessary.
Ideally, palliative care is something to be incorporated into routine medical practice. For this, palliative medicine has to become part of medical and nursing curriculum. For the time being, a short period of training would enable any volunteer, doctor or nurse to practice principles of palliative care. And they have the responsibility to train the family member in caring for the patient.
Palliative care is not only treatment of pain and other symptoms and of disease. It is total care, incorporating emotional, and social and spiritual support. Volunteers have a large role to play in it. Volunteers can help depending on the skills they have and time available. It may be assistance with administrative matters or fund raising, but it can also be active patient care. It can include helping with nursing chores or counseling.
The will, certainly; but it is also essential to have the right training if one is to help people who are suffering. It is necessary to develop listening and counseling skills. It is also necessary to learn to understand needs and do what exactly is required to improve quality of life. Remember, it would be easy to hurt even with the right word at the wrong time. Many palliative care programs now conduct training programs for volunteers.
Trivandrum Institute of Palliative Sciences (TIPS) undertakes the following training programs:
- 3-level training programs for volunteers.
- Six weeks certificate course in pain and palliative medicine for doctors.
- Six weeks certificate course in palliative nursing for nurses.
- Six weeks certificate course in palliative care for psychologists, social workers and counsellors.
Following the declaration of India’s National Program on Palliative Care in November 2012, Pallium India’s WHO Collaborating Centre (WHOCC) at Trivandrum organized a national consultation of experts from all over the country and abroad in January 2013, with funding from WHO (India) and with assistance from Narottam Sekhsaria Foundation. This group of experts created an implementation framework for the national strategy.
One of the activities listed in this implementation framework was the creation of curricula for undergraduate medical and nursing courses. With involvement of its sister-WHOCC in Calicut, Pallium India’s WHOCC at Trivandrum organized an experts’ group which met for a week at Trivandrum in May 2014. Subsequent work by the group led to the development of the curricula for MBBS and B.Sc Nursing courses. These have then been submitted to the Medical Council of India and Indian Nursing Council.
Table of Contents
Opioid Availability – National Scene
In 1995, Mr David Joranson and his WHO Collaborating Centre at Pain and Policy Studies Group (PPSG) embarked on a partnership with palliative care activists in India to overcome regulatory barriers to opioid access for pain relief. It has been 19 years of hard and sustained work and finally, the amendment of the Narcotic Drugs and Psychotropic Substances (NDPS) Act of India became a reality when on 22 February 2014, the Parliament of India passed it.
We have many people to thank – many individuals and organizations who joined the effort and supported the process. Mr Diederik Lohman and Human Rights Watch. Ms Tripti Tandon and all at Lawyers’ Collective. The Essential Medicines program at World Health Organization. WHO South East Asian Regional Office and WHO (India), Dr Mehanathan, former Deputy Secretary of Department of Revenue who worked on it and made it his subject for doctoral thesis, Mr Subba Rao who followed him and Mr Rajesh Nandan Srivastava who as Director of Narcotics Control made it a reality. And many kind-hearted people all over India and abroad too numerous to name.
The NDPS amendment was published on Government of India’s gazette on 10 March 2014.
The most relevant provisions are:
- In section 4 of the Act, the addition of the words, “and for ensuring their medical and scientific use” is a very significant acknowledgement of the purpose of the amendment.
- In section 2, the Amendment brings in the term, “Essential Narcotic Drugs” (END), which will include narcotic drugs notified by the Central Government for medical and scientific use.
- In section 9, the Amendment transfers the powers for making rules regarding Essential Narcotic Drugs to the Government of India, so that the whole country will now have a uniform system pertaining to these essential opioid medicines.
On 5 May 2015, the Department of Revenue also published two major documents, one (Notification No.923) a notification of the Essential Narcotic Drugs, access to which is being improved under the NDPS Amendment. We are glad to note that among others, all formulations of morphine, fentanyl and methadone are included in them. The other (Notification No. 285) lays down the rules and procedures that every state will be obliged to follow.
- Supreme Court order on PIL dated 1 April 2016
- Gazette Notification No.923 regarding Essential Narcotic Drugs dated 05 05 2015
- Gazette Notification No.285 regarding NDPS State Rules and Procedures dated 05 05 2015
- Gazette notification NDPS amendment 10 March 2014
- FAQs on NDPS amendment
- Impact of NDPS amendment (PowerPoint in pdf format)
- “Evaluation of NDPS Amendment by “Lawyers’ Collective” – Reproduced with permission”
- High Court Judgment
- Advocacy Material
- PPT for advocacy NDPS
- FAQs Amendment of NDPS Act 2013 v 3
- Dr Badwe writes to the finance minister
- NDPS Bill 2013 advocacy poster 1.5 MB
- 14 02 20 letter to Shri Rajiv Shukla
- 14 02 20 letter to Shri P J Kurien
- 14 02 20 letter to Shri Venkaiah Naidu
- 14 02 20 letter to Arun Jaitley
- 14 02 20 letter to chairman, rajya sabha
- 13 09 04 briefing note for media
- 13 04 21 draft letter from MP to Rajya Sabha
- 13 04 21 draft letter from MP to Lok Sabha
- 13 04 20 draft letter from Pallium India to MPs
- Reply by FM to TK R’s letter
- MP Sri TK Rangarajan’s letter to FM
- Regional Language Material
Opioid Availability – State Rules
Palliative Care: National Policies / Laws
During 2012, thanks to the initiative of Government of India’s Secretary of Health, Shri Keshav Desiraju, the Ministry of Health and Family Welfare developed a National Palliative Care Strategy. Dr Nandini Vallath, Pallium India’s honorary consultant (who put in the most effort), trustee Dr Shalini Vallabhan and chairman Dr Rajagopal, were part of the expert committee which helped create the document. Dr Sudhir Gupta, Deputy Director General of Health Services was the author of the final product. We thank all the officials who contributed to the development of the document, particularly Dr Atreyi Ganguli of WHO (India).
Following the creation of the National Strategy, Pallium India, with support from WHO (India), organized a working group meeting at Trivandrum in January 2013 to develop a framework for implementation of the palliative care strategy. The draft framework created by the working group was submitted to WHO (India) for operational analysis, as decided at the working group meeting. We particularly thank Dr Sudhir Gupta and Shri Rajesh Nandan Srivastava (Director of Narcotics at Department of Revenue).
- National Health Policy 2017
- Rights of Persons With Disabilities Act 2016
- National Palliative Care Strategy Nov_2012
- National Program for Palliative Care – DGHS
- Implementation framework for NPPC developed by Pallium India’s WHO Collaborating Centre for Training and Policy on Access to Pain Relief.
- Model PIP under NPPC, MOH, Delhi
- National Health Mission (NHM) draft operating manual for preparation and monitoring of state program implementation plans (PIPs).
- Palliative care in the cancer section of NPCDCS program of Government of India
- Operational Guidelines – NPCDCS
Palliative Care: State Policies / Rules
India has 28 states and 7 Union Territories. Health care is the responsibility of the State Government, each state creating its own policy.
In 2005, Pallium India submitted a proposal for creation of a State Palliative Care Policy. Following numerous discussions and meetings, on April 15, 2008, Kerala announced a State Palliative Care Policy, integrating palliative care into the government’s healthcare system. Kerala State has a decentralised system of government with considerable power of governance given to local self-government institutions (LSGIs). The Government of Kerala also has given instructions to the LSGIs regarding incorporation of palliative care.
- LSGI Guidelines to Panchayats on Palliative Care
- Kerala Government Palliative Care Policy 2008 (G.O.(P) No. 109/2008/H&FWD dated 15/04/2008)
- Narcotic Drugs and Psychotropic Substances (NDPS) Rules 1999
- Standard Operating Procedures (SOPs) for NDPS Rules
- Application for approval as RMI
On 15 June, 2012, Maharashtra State Government also announced a palliative care policy, making it the second state in the country to do so.
Karnataka state palliative care policy was announced in November 2016.
Textbooks or Chapters in text books:
- Rajagopal MR. The current status of palliative care in India. In: Magrath I (Ed); Cancer Control 2015: Cancer Care in Emerging Health Systems. INCTR. Brussels. 2015. Available also at http://www.cancercontrol.info/wp-content/uploads/2015/07/57-62-MR-Rajagopal-.pdf (Accessed 25 September 2015.)
- Powell RA, Blanchard CL, de Lima L, Connor SR, Rajagopal MR. Cancer Therapy in Developing Countries: The Role of Palliative Care; In: Alt-Epping B, Nauck F (Ed); Palliative Care in Oncology. Springer. New York. 2015.
- M.R. Rajagopal and Reena George: Providing palliative care in economically disadvantaged countries. In: Cherny N, Fallon M, Kaasa S. Portenoy RK, Currow D DC (Eds), Oxford Textbook of Palliative Medicine 5th ed. Oxford University Press. Oxford; 2015.
- Rajagopal MR. Setting up a Pain Management Program. In: Kopf A, Patel N; Guide to Pain Management in Low Resource Settings. IASP Press. Seattle; 2009.
- Rajagopal MR. Pain in the Developing World. In: Castro-Lopes J (Ed). Current Topics in Pain. iASP Press. Seattle. 2009.
- Wenk R, Mosoiu D, Rajagopal MR. Cancer pain and palliative care in the developing world. In: Bruera ED, Portenoy RK (ed). Pain – Assessment and Management. Cambridge University Press. New York. 2009.
- Rajagopal MR. Pain and Palliative Care. In: Doctor’s Pocket Companion; Sasidharan PK (Ed). Jaypee brothers. Delhi; 2006.
- De Lima L, Wenk R, Rajagopal MR, Mosoiu D, Gwyther E, Bruera E. Palliative Care in developing countries: Argentina, India, Romania and South Africa. In: Emmanuel L (Ed). Palliative Care: Core skills and clinical competencies. Saunders; Philadelphia. 2005.
Publications in Scientific Journals:
- Rajagopal MR, Karim S, Booth CM. Oral Morphine Use in South India: A Population-Based Study. J Glob Oncol. 2017 Feb.
- Vallath N, Tandon T, Pastrana T, Lohman D, Husain SA, Cleary J, Ramanath G, Rajagopal MR.
Civil-society driven drug policy reform for health and human welfare – India. J Pain Symptom Manage. 2016 Dec 29.
- Rajagopal MR. We have a Responsibility. Indian J Palliat Care. 2016 Jul-Sep;22(3):239-43.
- Krakauer EL, Rajagopal MR. End-of-life care across the world: a global moral failing. Lancet. 2016 Jul 30;388(10043):444-6.
- Rajagopal MR. Access to palliative care: insights into ground realities post-2014 amendment to NDPS Act. Indian J Med Ethics. 2016 Jan-Mar;1(1):25-30.
- Rajagopal MR, Ito K. Pain in Bali. J Pain Palliat Care Pharmacother. 2015;29(4):408-11.
- Sunilkumar MM, Boston P, Rajagopal MR. Sexual Functioning in Men Living with a Spinal Cord Injury-A Narrative Literature Review. Indian J Palliat Care. 2015 Sep-Dec;21(3):274-81.
- Fiedler L, Elsner F, Rajagopal MR, Pastrana T. Associations to pain and analgesics in Indian pain patients and health workers. Pain Manag. 2015 Sep;5(5):349-58. doi: 10.2217/pmt.15.36. Epub 2015 Aug 14.
- Powell RA, Mwangi-Powell FN, Radbruch L, Yamey G, Krakauer EL, Spence D, Ali Z, Baxter S, De Lima L, Xhixha A, Rajagopal MR, Knaul F. Putting palliative care on the global health agenda. Lancet Oncol. 2015 Feb;16(2):131-3. doi: 10.1016/S1470-2045(15)70002-1.
- Paudel BD, Ryan KM, Brown MS, Krakauer EL, Rajagopal MR, Maurer MA, Cleary JF. Opioid availability and palliative care in Nepal: influence of an international pain policy fellowship. J Pain Symptom Manage. 2015 Jan;49(1):110-6. doi: 10.1016/j.jpainsymman.2014.02.011. Epub 2014 Apr 21.
- Rajagopal MR, Khan AJ, Muckaden M, George R, Gupta H, Leng MEF, Palat G, Patel F, Raghaven B, Reddy SK, Sunilkumar MM, Tiruvadanan M, Connor SR. Creation of minimum standard tool for palliative care in India and self-evaluation of palliative care programs using it Indian Journal of Palliative Care, 2014;20:3; 201-7.
- Cleary J, Ddungu H, Distelhorst SR, Ripamonti C, Rodin GM, Bushnaq MA, Clegg-Lamptey JN, Connor SR, Diwani MB, Eniu A, Harford JB, Kumar S, Rajagopal MR, Thompson B, Gralow JR, Anderson BO. Supportive and palliative care for metastatic breast cancer: Resource allocations in low- and middle-income countries. A Breast Health Global Initiative 2013 consensus statement. Breast. 2013 Aug 21. pii: S0960-9776(13)00217-8. doi: 10.1016/j.breast.2013.07.052. [Epub ahead of print]
- Elsner F, Schmidt J, Rajagopal M R, Radbruch L, Pestinger M. Psychosocial and spiritual problems of terminally ill patients in Kerala, India. Future Oncol. 2012.8(9) 1-8.
- Rajagopal M.R. Where is the evidence for pain, suffering, and relief – can narrative help fill the void? (Editorial Commentary). J Pain Palliat Care Pharmacother. 2011;25 (1):25-8.
- Emanuel N, Simon MA, Burt M, Joseph A, Sreekumar N, Kundu T, Khemka V, Biswas B, Rajagopal MR, Emanuel L. Economic impact of terminal illness and the willingness to change it.Journal of Palliative Medicine, 2010; 13:8; 941-4
- Rajagopal MR. Disease, dignity and palliative care (Editorial commentary). Indian Journal of Palliative Care. 2010; 16:2. 59-60.
- Rajagopal MR. Pain, suffering and pain relief – a global perspective. British Pain News.Spring 2009. 22-24.
- Sharma S, Rajagopal MR, Palat G, Singh C, Haji AG, Jain D. A Phase II Pilot Study to Evaluate Use of Intravenous Lidocaine for Opioid-Refractory Pain in Cancer Patients. J Pain Symptom Manage. 2008 July 1. (Epub ahead of print)
- Rajagopal MR, Joranson DE. India: opioid availability – an update. J Pain Symptom Manage2007; 33:5: 615-622.
- Rajagopal, MR. Palliative care: an urgent need for most of the world. International Journal of Environmental Studies, 2007; 64:3, 301-307
- Rajagopal MR; Pain and Beyond. Indian J Palliative Care. 2006; 12:1; 4-7.
- Rajagopal MR; Pain – Basic considerations. Indian Journal of Anaesthesia. 2006; 50:5; 331-334 (http://www.ijaweb.org/temp/IndianJAnaesth505331-624173_172017.pdf).
- Palat, G. and Rajagopal, M. (2006). Pain relief on a shoe-string budget: Experience from Kerala, India. Proceedings of the 11th World Congress on Pain (eds. H. Flor. et al.). IASP Press, Seattle.
- Palat G, Biji MS, Rajagopal MR; Pain management in cancer cervix. Indian J Palliative Care.2005; 11:2: 64-73.
- Hariharan B, Rajagopal MR; Paroxetine in the treatment of severe non-dermatological pruritus. J Pain Symptom Manage. 2005;29(2):115.
- Raghavan B, Palat G, Rajagopal MR. Are out patients getting palliative care too late? An audit. . Indian J Palliative Care.2005; 11:2: 108-10.