Palliative care is not only for terminally-ill patients, but for anyone in need of severe pain management and also counselling. Not a lot of people are aware that such centres also offer emotional support to the patient’s family and loved ones.
CHENNAI: When 76-year-old Padman-abhan was diagnosed with lung cancer in 2015, his family was admittedly more in shock than he was. “He took it stoically, and with an air of acceptance, but it was extremely stressful for the other family members,” recalls Shobha, his daughter. The next few months comprised of a series of visits to the hospital for chemotherapy, which admittedly took a toll on their lives and more so on Padmanabhan. He grew weaker and more distressed over the course of treatment. When it was clear that the cancer had spread, his doctors suggested palliative care.
“We had no idea what it was, and it took some time for the doctors to convince us,” recalls Shobha. Availing the services of an NGO, Padmanabhan was able to ease the pain of treatment through regular physiotherapy sessions that soothed his aged body. “The volunteers also counselled us on how best to take the diagnosis, how to attend to him during his last days, and how to prepare ourselves for the inevitable.” It helped the family cope with his death in late 2015 as best as they could.
The World Health Organization (WHO) defines palliative care as a multi-disciplinary approach that improves the quality of life of patients with life-threatening illnesses, and their families by relieving suffering and pain — physical, psychosocial and spiritual. “The main focus of care is the patient and also his/her significant other; so it is not merely the patient who is part of the process,” adds Deepa Muthaiya, chairman, DEAN Foundation, a city-based pain and palliative care centre, one of the oldest in the city. “Through palliative care, we ensure basic nursing care, good control of symptoms along with giving social and emotional support is provided.”
Palliative care has for long been seen as the last resort for terminally-ill cancer patients, a misconception that unfortunately skews public perception, according to Dr Mallika Tiruvadanan, consultant doctor, Lakshmi Pain and Palliative Care Centre. “The word ‘palliate’ means to relieve suffering and pain, both emotional and physical – and suffering is common whether the disease is terminal or not,” she adds. “Even if the cancer is curable, doctors can be heard telling the patient that they are not ready for palliative care — a decision that does little to alleviate the turmoil the patient and his family may be undergoing.”
She points out that the focus of palliative care is on treating the side-effects of treatment. For example, the most common effects of chemotherapy include diarrhoea, vomiting and nausea, which are not related to the disease. “However, this involves skilled counselling and training that’s not found in our basic medical curriculum, and it goes beyond just the bedside manner of our doctors. The focus should be on treating the patient not just the disease,” she adds.
The Economist Intelligence Unit’s review (2015) of global palliative care through its Quality of Care Index that ranked 80 countries on the quality of the care given at the end of life. India ranked a low 67, trailing even behind most so-called third world African countries such as Uganda, Tanzania, and Kenya. Even though globally palliative care has become an integral part of the medical curriculum, it is still not a part of the MBBS curriculum in India, where progressive growth in palliative care is confined to the southern states and a few in the North East.
“The palliative care unit of the seminal Adyar Cancer Institute is fairly new — having been created since the government took a more proactive step towards palliative care,” avers Dr Kalpana Balakrishnan, HoD, pain and palliative care unit at the institute.
For training professionals in this field, the State government asked the DEAN Foundation in 2009 to enable the setting up, training and support of palliative care centres in 17 government hospitals across the State. This would bring palliative care to several rural areas as well, and since then, several people have accessed it as well.
“However, when these trained professionals are posted out, it becomes a burden to train a newbie once again. And this is similar for new doctors, who, ignorant of referral practices for terminally ill patients, do not follow procedure for referrals,” rues Muthaiya. Most palliative care organisations today offer charitable donations and try to support the economically deprived through free treatment as much as possible.
The WHO’s guidelines to treat chronic pain through palliative care is called the WHO Step Ladder pattern. It gauges the level of a patient’s pain, and then prescribes treatment accordingly
— Dr Mallika Tiruvadanan, consultant doctor, Lakshmi Pain and Palliative Care Centre
According to Pallium India, only 11 of the 29 Indian states have palliative care centres set up as of 2015, which means less than 1% of India 1.2 billion people have access to palliative care. One of the biggest barriers is also the non-availability of opioids such as morphine, which are not stocked in pharmacies due to stringent rules under the Narcotic Drugs and Psychotropic Substances (NDPS) Act, 1985. In the first 13 years since the NDPS Act, morphine consumption in India fell by 92% while globally consumption increased by 437%
Patients can assess and let doctors know about their symptoms through the Edmonton Symptoms Assessment Scale (ESAS). It has 8 visual-analog scales for levels of pain, activity, nausea, depression,
anxiety, drowsiness, appetite and sensation of well-being. It must be completed
by the patient mostly, or with assistance from relatives.