Palliative care – is about the living
- Adding life to the days and not days to the life
The term palliative care is mostly associated with some deep rooted misconceptions. Foremost among them is the idea that palliative care is only about the dying. Let us admit the fact that most of us are not really comfortable talking about this reality in life. Palliative care is an integral part of healthcare that is least practiced but desperately needed by the patients who could be suffering from an incurable disease. It is also not always end of life care but rather it is a practice of medicine that adds quality to the lives of people in medical distress by focussing on pain relief measures and keeping the patient comfortable.
According to a survey done by The Economist in 80 countries published the findings as the Quality of Death Index in 2015 and India is one of the 15 worst countries in the world to die in. The reality is that if you don’t have the financial means you will suffer pain and die, if you have the financial means you will suffer more and die. At least in the villages there will be someone close to hold the dying and put a few drops of water into the parched mouth of the dying, but in the cities they will be isolated in a cold ICU, connected to tubes and monitors to die without having the opportunity to say a final bye to their near ones.
The occasion was the premier screening of a film “Hippocratic” 18 experiments in gently shaking the world by the award-winning Moonshine Agency (Australia), about ethical medicine & global access to pain relief. The film is based on Dr M.R. Rajagopal the “father of Indian Palliative care”. Hippocratic uses his narrative to shine a light on the current state of palliative care in India and other developing countries, and what can be done to alleviate the unnecessary suffering experienced by millions. It is a film truly relevant to our time.
The screening was at Bharatiya Vidya Bhavan Bangalore on Jan 20, 2018. It was followed by an interaction with Dr Rajagopal who shared the paradox of high-tech treatment but acknowledged the value of intensive care treatment in the context of its valuable relevance of many cases where there is remarkable recovery, where the patient can lead a good quality of life. But in the context of incurable disease when the recovery to a reasonable quality of life is very remote – it becomes almost obscene and a vulgar abuse of medical science and only demonstrates the power that doctors hold over human lives. Patients and families in India do not have the information when the near ones are put on artificial life support. There is no patient and family education for informed consent and the awareness to make the decision to withdraw artificial life support when treatment is no longer considered to be useful. There is no ethical clarity for the doctors on the course of treatment and there is no legal clarity. Today 97 percent of the deserving patients in the country do not have access to palliative care. The suffering of the patient and the family should be in the collective conscience of the medical community, said Dr Rajagopal.
Various organizations and individuals associated with palliative care in Bangalore attended.
What palliative care is not:
• NOT restricted to end of life
• NOT only for terminally ill patients
• NOT only for cancer patients
• NOT the last option when there is no more hope
• Does NOT mean giving up
• NOT the same as euthanasia
What palliative care is:
• Care that can be given from the time of diagnosis of a serious illness, in order to minimize illness-related suffering for the patient as well as the family.
• Concerned with a vast spectrum of life-limiting conditions.
• A means to provide realistic hope for a life with minimal suffering and restoration of dignity and when the time comes, for a death free of pain.
• Re-engaging with life even through illness.
• The viable and humane alternative to euthanasia. Palliative care can greatly reduce the pain and suffering.
How you can help:
• Donate to existing palliative care services in the country that rely on funding, as most services are given free of cost
• Refer people to these services
• Join advocacy groups to influence change at legislative and executive levels
• Sign up to receive information on developments in the field and chip in with you expertise wherever possible. You can enlist with Shalini Soni by sending an e-mail with your name, number, and e-mail address with the subject “Friends of Palliative care” to shalini@palliumindia.org
Click here for more information on Pallium India
For more information on palliative care services in Bangalore contact Sanman Society. Call Architect Jacob Chacko on 9341235616
Click here for more information on Palliative care
Click here for the official trailer of Hippocratic
Very informative report. Thanks for publishing the same.
In addition to the palliative care facilities, we would like to hear about patient advocates and volunteers who help distressed patients to navigate through the hospitals and get quick access to care.