A group of thirteen young people got together at the time of the floods in Kerala of 2018 to do what they could to help. And they rendered phenomenal service.
Perhaps, then they realized their own power to make changes in other people’s lives. The group continues as ‘Sign of Nest’ and looks for and looks around to see who needs help the most.
They found that people with some disabilities are unable to write for themselves at examinations and needs scribes. The regulations would have several restrictions, like the scribe has to be younger than the examinee. And often it is not easy to find a scribe who offers help and is available when needed. These youngsters are offering themselves as scribes and are running a campaign for recruiting more young people as scribes.
During an event in Trivandrum on 20th of February 2020, the “Sign of Nest” honored Pallium India’s Ashla Rani along with Krishnakumar P, Rajaneesh S.S and Chandrikamma S. The plaque given to Ashla says “we offer a thousand roses of love and respect to Ashla Rani M.P who proves to the society that physical disability is not a barrier to performing good deeds for the needy.”
Proud of you, Ashla. Respects to you, members of Sign of Nest.
Until I worked as a resident in interventional pain medicine, the idea of pain management to me was simply perioperative pain relief. I had no idea that chronic pain is in itself a disabling disease that encompasses physical, emotional, psychological ill effects as well as financial burden.
The following is just one of the many stories of patients/caregivers in smaller cities.
“I am a caregiver who has seen the suffering that cancer brings and the devastation that it brings with it.
“My mother was 70yrs old when she was diagnosed with late stage pancreatic cancer, last June. It all began with severe stomach pain, such that even her routine activities were affected, making her feel incapacitated. As the cancer had progressed to an extent where any definitive treatment was futile, she was advised injection in her back to relieve the pain and improve the quality of life. The injection was helpful and I was relieved to see the relief it provided her, but it lasted only for a month as the cancer still progressed.
“When the pain returned, it came back with a vengeance, making her cry in agony. She was admitted and given care to help with her pain. As the pain drugs started working, she was discharged with pain medication – morphine tablets to take home for pain relief.
“The tablets have been of immense help, they have helped her to maintain a normal routine making her able enough to move around and also to eat. However, the cancer was still progressing and she started feeling weak as it advanced. She became bedridden and expressed her wish to go to her hometown.
“The doctor who was sympathetic to this advised that she can be taken there and gave the reference letter stating the need for morphine to be prescribed and obtained under medical guidance from nearby hospital. I arrived at the cancer OPD I was quite hopeful that the morphine would be issued for my mother’s pain relief, and I was directed to the pain clinic, but to my disappointment I was denied morphine even with a reference letter, due to safety reasons the presence of the patient for the first visit was essential. Bringing my mother to hospital in such a frail condition was impossible for me. I was helpless…”
Almost 20-30% of our patients are referred to us by oncology department. The word cancer in itself brings turmoil in the life of patients and their family members. And as the tumor progresses it affects not only the vital function of that part but it affects the nearby nerves and muscles leading onto severe pain that affects psychosocial and behavioural aspects leading on to suffering that extends up to the nearby family member or a caretaker as they are the ones who feel powerless most of the times. We, as pain physicians, try our best to treat the pain and suffering by various methods including intervention and medication, psychological and psychosocial support on outpatient basis as far as possible but still there are times where we start to feel helpless, like if a patient cannot come to outpatient department the first time for the opioid medication, legally we cannot prescribe them any drug on proxy basis even if they are being referred from a bigger city centre.
Morphine is a cheap and effective drug for the treatment of cancer pain. It helps in relieving pain even when other methods fail. Although it is provided free of cost, sometimes hospitals run out of stock or caregiver/patient fails to come for medication. Finding an authorised shop for morphine outside the hospital setting is still quite difficult in small cities of India. Hospitals in bigger cities with state-of-the-art facilities are over flooded with patients and yet smaller cities are even unable to provide palliative care to such suffering patients.
A phrase we were introduced to by Mhoira Leng who had come across it in her work in conflict riddled Gaza, from those who suffer in ways most of us cannot even fathom – showing us that humanity and love have always been and always will be the only answer to unspeakable tragedy.
At the annual international palliative care conference this year, we saw the planting of a new seed – the first steps in creating a Task Force for palliative care in humanitarian aid and emergency settings in the Indian context.
Illness can bring unimaginable suffering. There is indescribable horror when there is a disaster, be it natural or manmade. Bring those two together and it is almost too much to bear.
But rather than look away, it is now more than ever that we really need to examine the human condition in all its raging, despairing, clawing misery, and meet it with compassion.
The relief efforts in the aftermath of the massive earthquake in Nepal, the stories from Sudan and Gaza, and other accounts from Kerala were profoundly moving. Learning about the work done by the Border Security Force every year in Assam when the Brahmaputra river floods was an eye-opening experience.
And witnessing palliative care providers and defence personnel come together to talk about joining hands for the alleviation of suffering was unexpected, uplifting and deeply restorative.
“Humanity to Infinity.”
In the darkest of times. In the most wounded places.
Thank you Dr. Mhoira Leng, Dr. Chitra Venkatesh and Dr. Jenifer Mugesh for organising the session. Thanks to Mr. Noordeen, Dr. Dan Munday, Dr. Athul Joseph Manuel for wonderful presentations. We were privileged to talk about our own work in Alapuzha District of Kerala after the 2018 floods, a project that was generously supported by Cipla Foundation.
Special thank you to Dr. Savita Butola for bringing in her colleagues from the BSF – Suresh Kumar Commandant, Ftr HQ BSF Guwahati and Ratish Kumar, AC(Law). We salute them.
Close on the heels of the “Do Not Resuscitate” (DNR) guidelines created by the Indian Council of Medical Research (ICMR) comes this welcome news. All India Institute of Medical Sciences (AIIMS), New Delhi has created draft guidelines for end of life care.
We shall eagerly await the final document when it goes up on AIIMS website for public suggestions.
Read: AIIMS’ draft end-of-life policy gives terminally-ill patients, family, option to end treatment
On the occasion of the World Day of the Sick, His Holiness Pope Francis has this message for us:
“What is needed is a personalized approach to the sick, not just of curing but also of caring, in view of an integral human healing. In experiencing illness, individuals not only feel threatened in their physical integrity, but also in the relational, intellectual, affective and spiritual dimensions of their lives. For this reason, in addition to therapy and support, they expect care and attention. In a word, love. At the side of every sick person, there is also a family, which itself suffers and is in need of support and comfort.”
“When you can no longer provide a cure, you will still be able to provide care and healing, through gestures and procedures that give comfort and relief to the sick.”
Please read the message of His Holiness Pope Francis for the World Day of the Sick 2020.
It was Pope John Paul II who began the observation of the World Day of the Sick on February 11th, as a route for devotees to offer prayers for those suffering from ailments.
