|Ahead of print
A tale of two springs
Central Armed Police Composite Hospital, Border Security Force Academy, Tekanpur, Gwalior, Madhya Pradesh, India
|Date of Submission||10-Jul-2019|
|Date of Decision||22-Aug-2019|
|Date of Acceptance||03-Sep-2019|
|Date of Web Publication||05-Aug-2020|
Central Armed Police Composite Hospital, Border Security Force Academy, Tekanpur, Gwalior, Madhya Pradesh
Source of Support: None, Conflict of Interest: None
Palliative care, which is more than just terminal care, is still unknown in most parts of India. This narrative highlights how early integration of palliative medicine can help the patient and their family to make the most of their time together. Besides, excellent clinical acumen is required while looking after the sickest and the most critical patients, proper communication skills, and an ethical and holistic approach enables a good doctor-patient relationship. Good pain relief, symptom control, attention to nursing issues, providing information sensitively to empower patients and families for joint decision making, and advance care planning can help bring about a decent death and bereavement. Healing is brought about not only for the caregivers but also for the healthcare professionals.
Keywords: Advance planning, India, pain-relief, palliative care, terminal
The similarities are uncanny. A young “Border Security Force” employee with just 2 years of service, has brought in his father, terminally ill with cancer and in terrible pain.
It is spring (basant) in India; one of the loveliest seasons between the end of February and the beginning of March. His mother's suffering is reminiscent of the sea. The surface is calm but the turbulence is invisible yet palpable. Although the son is keen to stay with his father and care for him, he cannot, because he has to go back to his duty.
My mind goes back to another spring and another patient who lay dying of cancer and his offspring who also wanted to be there to care for him but could not do so. Securing leave in the armed forces is as much of an issue now, as it was back then.
Two decades later, however, I am on the other side. Now, I am trained to deal with the pain- both physical and emotional. Essential narcotic drugs like morphine are available for this patient. After just two doses, he is smiling and pain-free and can sleep. He has a room where his family and friends can visit him, at their own convenience. He can visit the temple with his wife. The nursing aides can wheel his stretcher (he is too tired to sit in the wheelchair now) out to the garden where he can see the sunsets, smell the flowers and mango blooms, and hear the birds singing their hearts out. His grandchild can run-up to his room with his school bag after each exam, and sit with him on the hospital bed, sharing the day's adventures. They share smiles and some toffees—guava and mango candies—salty, sweet, and sour; reminiscent of the varied flavors of life—ripe, well-lived, and shared.
Our work includes empowering the family by training them to dress his wound at home, wash hands, dispose of the medical waste, and administer subcutaneous injections in an emergency. It also entails gentle truth-telling and preparing the patient and family for the inevitable.
Not every village has a trained healthcare professional for help at home. The family wants to take him home for a few days. The patient's eyes light up as he talks about his black Labrador at home, who runs out to welcome them after each hospital visit, running around in circles with delight and wanting a ride in the taxi. ”He stops eating whenever I am in hospital, he tells me guiltily. 'I want to go home to check on him—to see that he's alright.'” In my mind's eye, I see my children refusing to leave our beagle alone whenever we plan a holiday. It has been 6 years now that all four of us have been for a family trip together. I regret that our hospitals do not allow pets to visit yet. Maybe someday in the future!
“Holi” (the Indian festival of colors—that celebrates the commence of spring) comes, just as it did then. The family, the patient and I know that this is going to be his last festival in this life. Another patient, I remember, could not see the colors of spring but this one can go home and celebrate with all his siblings—their extended families, his neighbors, his lifelong friends, many of whom sit with him while he is in the hospital. I often pass by them during my hospital rounds. They bring in some things he needs or just the news of all that has happened while he has been away.
We have had several discussions about all the important life tasks that need completion. He tells me that he has tied up everything, met everyone, said his goodbyes. “Have had orange popsicles too”, he tells me and smiles. Wistfully, he says that the only thing left is his son coming to meet him for the last time. He wants to meet him before he dies. “Should we call him now?, I ask. 'No! Not yet! I will tell you when it's time'”, he says. ”Let him perform his duty till then”. I promise (hoping all the while that I get the time to fulfill it. Most doctors overestimate survival—I know that now!)
“'There's one last thing that weighs on my mind', he confides. 'My son has spent his entire earning on my treatment. The reimbursement claim is pending. I feel guilty—leaving my son in debt.'” 'I will do whatever I can do', I reassure him— all the while thinking that with the financial year ending, there may not be enough budget left in this particular financial head of government funds for settling the claim and I find myself wondering— “Is there really anything that can be done about this or is it just a hollow reassurance to a dying man?”
The patient's wife is waiting for me in the corridor when I come out of the room. “There is no money to even arrange for the funeral and the prayer ceremonies after death. How will I arrange all that without incurring more debt?”. I admire the wisdom in her placidly planning things ahead, but I can sense the underlying urgency in her tone. I walk into the administrative office, still pondering over what can be done and while I'm telling the head clerk to type a letter to the Accounts Officer in Delhi, requesting his help; one of our nursing assistants, who happens to be typing in the same room, overhears my conversation and stands up. “I know the accountant in his battalion, ma'am. Let me see where his reimbursement is held up.”, he offers. I am aware that he lost his father recently and his eyes tell me he understands this family's grief at the impending loss and would like to help. That evening, he comes to tell me that the problem has been sorted out. He has spoken to the accounts section in the force headquarters too, explained the family's urgency and the clerk who understood the problem, very helpfully completed the documents on priority and has already dispatched them to the unit.
The first thing next morning was a call from the patient's son to let me know that his financial claim was settled. I could hear the relief in his voice across 2800 km. When I went for the morning ward rounds that day, the patient finally seemed tranquil. The son has already apprised him of this development. “Can I go home now?”, he asks. Of course! It's all arranged. He can go whenever he wants. We take the last picture of the smiling patient, the family, and the staff and he appreciates and thanks the staff for their concern and care, his eyes overflowing with gratitude. The nurses are in tears too. It is a beautiful moment to witness. In a world full of increasing mistrust between patients and healthcare professionals, a precious moment of plain and simple human bonding is humbling and inspiring at the same time.
There's a call from his home 2 days later— he is breathless! Thank God, there is an emergency kit with all medications and even a nebulizer. He settles down in a couple of hours, but the alarm bells are ringing. It is time to call his son now. The unit is very co-operative, everyone knows— have already been given official intimation in writing and now on the telephone. They respond quickly and send him home straight away. The son reaches in the evening. The next morning, he calls to tell me that he has reached home. I am relieved that he has managed to make it on time. They spend a happy day and a half together and then the patient breathes his last.
The son comes to the hospital today to invite the staff for the last prayers of his father in their village. He sits down in my office and I sit with him silently. No words are needed. The young boy has lost weight and looks older. Then he smiles. Yes, he actually smiles and then tells me about how his father wanted to eat 'choori' (a traditional crumbled dessert) on his last night, which his mother got up to make and just then the old man coughed up a few times and then passed away— with his wife and sons and grandson; sisters, nephews and neighbors and yes, his black Labrador— by his side. An inevitable but peaceful ending! In India, such a pain-free and dignified death are destined for only a lucky few.
The smile on the face of the young lad is priceless. I look back at my 10 years of hard work. I think about my aching back, sleepless nights, and tears—of both my daughters' and my own. I look back to the times my eyes hurt with reading for hours at a stretch and fingers hurt with typing assignments. For years, I did not know what my children were taking for tiffin to school and where the linen in my house was lying. Social life was decimated. As a schoolgirl, I used to think that I would die if I did not listen to music for even one day but now years have passed without songs playing in my room. My harmonium lies silent—collecting dust. I don't remember where my poetry notebooks are. My daughters think I must surely be out of my mind to be studying at my age. In spite of all this, I think it has been worth the struggle.
I glance up and notice the date on the calendar… and I find myself smiling too. It is 21 years to the date! Today is my father's twenty- first death anniversary. The patient I remember as not being able to see the spring just outside his window—was my father-a senior doctor himself. He died in severe pain, gasping, and breathless, in one of the best cancer hospitals in the country. There was no morphine for him. Just one day before he died, I went back to work. I was told he had about a year still left. My leave was over, and I had to go to my place of posting. As a result, I was not present to support my mother and sister when he died because nobody told me what his prognosis was. A few years later, I helplessly watched again as my mother suffered severe pain and died in distress, in a cardiac intensive care unit, in a tertiary care center. Again, there was insufficient pain relief. Again, I was not there with her when she breathed her last. I am glad this young constable and his family could have the time that was denied to me and my family.
Life comes a full circle. This boy's smile is worth millions. Outside my window, the same flowers are blooming again, and the air is filled with the same scent of sweet peas. The same butterflies and birdsong are everywhere. I am at peace today. I am sure my parents are happy and at peace too. I dedicate my work to them at the end of each day— every day.
“In the depth of winter, I finally learned that within me there lay an invincible summer.” – Albert Camus
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Conflicts of interest
There are no conflicts of interest.