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Reflecting on effect of change and relieving unnecessary human suffering in a country of approximately 1.25 billion people, almost one-sixth of the world’s population, Palliative care is reassurance to the patient that whatever the disease, however, advanced it is, no matter the treatment already is given, there is always something which can be done to improve the quality of the life remaining to the patient.
Palliative care as WHO defines it is ‘the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual.
“Just because I’m not dead does not mean I am alive”
The dilemma faced by every terminally ill patient is to truly live his last days on the earth the way he or she sees fit. And nobody has the right to stop that person from fulfilling his or her last wishes and living pain-free.
Hence the provision of high-quality care during the final days and hours of life is an important part of palliative care. Palliative care must be initiated when the patient becomes symptomatic of their active, progressive, far advanced disease and should never be withheld until such time as all treatment alternatives for the underlying disease have been exhausted.
Understanding that having a particular condition can impact the further quality of life and seemingly simple things like good communication and being treated like an individual can make such a difference, but this doesn’t always happen. Many patients are most afraid of not knowing what the process of dying is like, of pain and of being left alone at the end of their lives.
According to several reports published, the challenges mainly faced by the patients can be classified into two types: – one that is physically evident and one that no one talks about
Challenges that are physically evident includes:
5.Need for control
Challenges that nobody talks about includes:
3.Not acceptable to the family
4.Not acceptable to the social circle
Palliative care is inclusive of all medical specialties and hence all doctors must be trained in it and work together to produce lasting and effective results for the patients. The doctors must avoid clinical nihilism, that is thinking that there is nothing left to be done.
And as reports suggest that the main challenges faced by the doctor are:
3.Personal discomfort with death.
In a developing country like India persistent pain is estimated to impact more than seven million patients each year. In India, with a sixth of the world population, several million suffer from severe untreated pain because of cancer (2.09 million), HIV (2.5 million), and other long-term conditions. About 70% of the cancer patients accessing health-care services are in advanced stages, requiring pain relief to sustain their quality of life. Oral opioids are essential, effective, and inexpensive analgesics recommended by the World Health Organization (WHO) through the three-step analgesic ladder. Although India recognizes several opioids as essential medicines, more than 96% of needy patients in India do not have access to this mode of pain relief. In addition, opioid agonist therapy is unavailable to about 97% of injection drug users. This is because few institutions in India stock opioids and most practicing doctors remain untrained in opioid usage.
And in the state of Pondicherry with its 7 lakh inhabitants, 9 major hospitals, 4 CHCs, 39 PHCs, 77 Sub-centers, 14 ESI Dispensaries, 17 Disease-specific clinics, 2 cancer center and 1 palliative care center there are only 10 dedicated beds in Mahatma Gandhi medical college and research institute (MGMCRI), 4 not fully dedicated beds in JIPMER and 6 not fully dedicated beds in SVMC. Furthermore, only two of these hospitals along with Pondicherry cancer center have OPD 6 days a week. And all this is in a state which has a doctor-population ratio of 1:2187 and whose healthcare infrastructure is superior to that in existence with the rest of India. And with the effective implementation of various plans has ensured accessible medical care within an average distance of fewer than 1.8 kilometers.
Although there is Hospital-based cancer registry(HBCR) in 2 hospitals there is no Population-based cancer registry(PBCR). The status of Narcotic drugs and psychotropic substance (NDPS) Amended act is not implemented. The state does not have any strong opioids included in the endorsed list of essential medicines. There have been no inclusions of objectives for pain relief and palliative care within the HIV/AIDS program. The availability of opioid analgesics has not been addressed but the state government has recently endorsed training programs in pain relief, palliative care and the medical use of opioid analgesics.
Even in a developed country like the UK, about 167,000 people die from cancer in pain, so palliative care is not a universal experience. One out four people don’t get the care and support they need at the end of their life.
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