A. Background
During a strategy planning workshop organized by Indian Association of Palliative Care (IAPC) in August 2011, it was proposed that India needs a working definition of Palliative Care. This draft has been prepared accordingly for discussion, any modification and possible adoption by the Indian Association of Palliative Care (IAPC).
This draft was prepared by Dr. M R Rajagopal, Dr. Anil Paleri and Dr. SN Simha.
B. WHO Definition of Palliative Care
The current definition of Palliative Care by the World Health Organization (WHO) is: Palliative care is an approach that improves the quality of life of patients and their families facing the problems 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 patient’s 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.
Sepúlveda C, Marlin A, Yoshida T, Ullrich A. Palliative Care: The World Health Organization’s Global Perspective. J Pain and Symptom Manage 2002; 24(2): 91-96.
In 1986, WHO had defined palliative care thus:
Palliative care is the active total care of the person whose disease is no longer responsive to curative treatment. Control of pain and other symptoms as well as social, emotional and spiritual support is paramount.
Perceived Problems with Current Definition
- It is too long to be remembered. A crisp definition followed by explanations is necessary for easy communication and understanding.
- The term “life-threatening” seems to exclude many conditions like paraplegia or other neurological disorders. In India and in other developing countries, in the absence of other support systems, these disease states necessarily have to come in the purview of Palliative Care.
- The phrase “active total care” in the 1986 definition was widely appreciated as conveying an effective
- The word “impeccable” is Any unnecessary word adds to length and obscurity of the document.
C. Proposed Definition of Palliative Care by IAPC
Palliative care is the active total care applicable from the time of diagnosis, aimed at improving the quality of life of patients and their families facing serious life-limiting illness, through the prevention and relief of suffering from pain and other physical symptoms as well as psychological, social and spiritual distress through socially acceptable and affordable interventions.
Explanatory Notes
- The word “active” in the phrase “active total care” indicates that the disease process is addressed actively along with measures aimed at improving quality of life.
- The word “total” in the phrase “active total care” indicates that care should be person-centered and address all domains of suffering.
- The term life-limiting refers to either the duration or disability from chronic or incurable
- The word “seriously” is meant to indicate the degree of limitation of Often it is applied for bed-bound patients, but would also include those who are able to walk about, but may have serious limitation in the quality of life, as for example, in advanced cancer, severe schizophrenia or chronic pain.
- The phrase “applicable from the time of diagnosis” automatically implies that it can go hand in hand with curative
- The phrase ‘socially acceptable’ implies that the interventions used for palliative care should be socially and culturally relevant and available.
- The word ‘affordable’ means that such interventions should be affordable to the patients and families and to the society so that its sustainability is ensured.