These days we have several days dedicated to one thing or the other. Tomorrow, October 12, 2019, is earmarked for something that concerns life and death, the comfortable, dignified transition from one to the other and life thereafter. The second Saturday of every October is World Hospice and Palliative Care Day. Unless you catch a stray headline or a post brushes by while you wade through social media, you may miss the significance of October 12, 2019. Unless you suffer from a chronic illness or you care for someone who does, or you help both as a palliative care professional. In which case, it is a day that would probably mean the world to you. This is the right occasion to remember two women who were strong enough to be compassionate. They were both discouraged from the medical profession when they started their education. Then the world plunged into war and they boldly went into the uncommon profession of compassionate care. They deliberately chose to sit next to and hold the hand of pain and misery. So that they could teach an uncaring world to understand and manage both, and death, better. Meet Dame Cicely Saunders and Dr Elisabeth Kübler-Ross, the Pioneers of Compassionate Care. Dame Cicely Saunders |
Adapted from an article by Patricia Ricci-Allegra, PhD, RN, CPNP-AC/PC in Medscape. |
Those dreams were his motivation to work hard and long.
However, by the time I first heard of him, Muthu was no longer a florist. When you are confined to bed with a damaged spine and advanced cancer of the lungs, there is very little that you can do. Except hold tight to those dreams, worry and wait ….
At the "abode of compassion"
“I have never done any harm to anyone. I have no bad habits. Why did this happen to me? And what will happen to my family after me? My wife is so innocent she does not even know how to make a phone call. How will my daughters continue their education? There is no one else who can help them,” Muthu would go on and on.
After Muthu was admitted early September 2019, the immediate aim of the care team was to keep him comfortable, free from pain and distress. “As the counsellor, for the first couple of days, my job was to let him vent. As professionals, we know about the stages of grief: denial, anger, bargaining, depression and acceptance. That tough journey is for the patient to undertake. We can only offer a comforting hand and an empathetic ear.”
Helpless, but reluctant to burden others
As radiation therapy started, they hoped for the best. And kept their daughters in the dark.
What landed him in bed was not the cancer, at least not directly. He was travelling by auto-rickshaw when a bad bump on the road gave him a sudden jolt. He was in too much pain to move. The doctors at the hospital, where he was rushed, discovered a ruptured disc. The surgery that followed made it worse.
Two weeks after cancer was diagnosed, Muthu found himself at Karunashraya, limited to the bed and staring at an uncertain tomorrow.
A few days after the admission, the nursing staff observed that he was hardly eating anything. Was there a problem that they were missing? Sundari asked him.
“You see, the nurses here are all as young as my daughter. If I eat, I will pass motion. How can I make them clean me up? It is not right. I would rather not eat.”
Muthu relented only after the nursing team spoke to him, at Sundari’s request.
Relieved that family is cared for
“We got one of his cousins to stay with him. That helped to lift his mood,” Sundari said.
Karunashraya tapped into its vast network of benefactors. Funds were soon in place to ensure that the girls would complete their education. The shy housewife started attending free classes in tailoring and embroidery.
“I am sorry I am troubling so many people. You have no idea what a relief it is to know that I do not have to pay for all the care you are giving me. And then you have made sure my family will not be in the streets after …”
His worries about “What after me?” addressed, Muthu greeted Sundari every morning with a resounding “Good morning!” Unfortunately, the sunshine did not last too long.
Muthu passed away in his sleep on September 21, 2019. His wife who was with him until a few hours before the end, remembered his request: “Please take care of our daughters.”
Karunashraya made it possible for him to take leave peacefully, relieved and with dignity. His family would always miss him. No one can ever love and care for his precious family as much as he did. But, with Karunashraya backing them, they are determined to fulfil the dreams he had for them.
We violate and eliminate those who are not like us or whom we do not like. Because we can.
Rivers are being ravaged and smothered. Hills are being bulldozed flat. Trees are going up in smoke.
Patients are being exploited; doctors beaten up.
Aren’t these symptoms of a world that is cracking? Compassion is in crisis.
Compassion is what makes us human. It is what makes us love and respect everything around us: human and non-human, animate and inanimate.
This October, we shall talk about one facet of that compassion, from the realm of medicine.
Palliative medicine (what I prefer to call compassionate medicine) too is born in the textbooks and draws on science. Yet, it is also the discipline that accentuates the inexact dimension of medicine.
Palliative care is about human intangibles like comfort, peace, solace and compassion, too tenuous to fill a syringe or a capsule. It often prescribes a listening ear, a sympathetic hand or mere silent presence in person to light up lives darkened by grim prognoses.
Stories of lives that moved on. Of lending strength to cope with the loss and go on.
Of blurring boundaries between cold science and warm emotions. Of skepticism transforming into spirituality.
Do you have a story of compassionate care (or the lack of it) to tell? Please share.
Disclaimer: I am not a medical professional. Nor am I an expert in palliative medicine. I do love to tell and share stories of compassion. And I would love to hear your views.
The second Saturday of every October is World Hospice and Palliative Care Day.
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Vijayakumar Kotteri
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