|Year : 2019 | Volume
| Issue : 1 | Page : 54-56
Department of Palliative Care, MGIMS, Wardha, Maharashtra, India
|Date of Web Publication||14-Mar-2019|
Dr. Mona Rai
MGIMS, Sewagram, Wardha, Maharashtra
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Rai M. My Encounter. J Mahatma Gandhi Inst Med Sci 2019;24:54-6
It has hardly been a 5-year journey for me as a palliative care physician. Although it is not such a long one, it has definitely been an enriching one so far. It got me exposed to some real heart-touching experiences that will remain etched in my memory for years to come. Those experiences have had a strong positive influence on me. I realized, I have stopped complaining about little things in life. As a palliative care physician, I have dealt with a lot of terminality and end-of-life care, those things got me grounded, they were experiences that got me close to life, taught me gratitude. I realized with time that I was focusing on my blessings more than I was thinking about what lacked….it was and still is the process of evolution for me as a human being, I found myself more in sync with the universe.
It was one of those usual mornings and I was driving to work, listening to my favorite music, which got interrupted by a call from an unknown number on my cell. I answered, it was a distress call. I could make out from her voice that there was a young girl on the other end. She confirmed by asking if it was Dr. Mona Rai, I responded by saying yes “I am Dr. Mona speaking,” she went on to tell me that my number was given to her at Tata Memorial Hospital, Mumbai. I asked her “how could I help?” She told me, her name was Mamta and she is from Yavatmal and that she was suffering from cancer and is in excruciating pain. She wanted me to reduce her pain. I could well understand her agony from my past experience of dealing with pain. The pain of cancer is such that it makes death desirable. The desperation in her voice was enough for me to understand what she must be going through.
In a comforting tone, I asked which site was her cancer. From the explanation, she gave I understood that it was cancer of rectum. I responded empathetically to her and asked her what medication she was on for her pain. While talking to her, I could decipher that she is well educated, and although she was trying hard to explain her medications and disease condition to me, it was still difficult for me gauge the actual situation over the phone. Nevertheless, I did manage to understand that she was taking morphine indosage, along with a few more medications, that was not enough for me to get a clear picture. From the history, she gave all I managed to understand was that she was a young girl suffering Cancer of Rectum and taking tablet morphine SOS for her pain.
Over the phone, I managed to explain the correct dosage of morphine and also conveyed to her that I can only do as much for her from this far because there is a limitation since she was not present in person. Fleetingly, I mentioned to her that I will be in a better position to help her if she could reach the palliative care set up in Nagpur, where I worked… her pain must have been immense because she immediately agreed. She told me she will begin the next day. Having given her the instructions about her pain medications, to sail her through the treacherous journey till she reached, I hung up with my thoughts drifting to the unconquered battle with cancer…. by then I had reached Snehaanchal.
SNEHAANCHAL: A little introduction of Snehaanchal here is almost mandatory for me, without it my narrative will be incomplete, for I owe and dedicate my becoming a Palliative Care Physician to that place and more than becoming the physician the person I became. It has been a spiritual journey for me. Snehaanchal is a palliative care center in Nagpur, founded in 2006 by Mr Jimmy Rana, who became my mentor and my life coach. Snehaanchal is his philanthropy venture. It is a nongovernmental organization dedicated to providing comfort care for cancer patients free of cost. My passion for the subject began after I joined Snehaanchal 5 years ago. It was here I learned the value of holistic approach toward patients and their families who are suffering life-limiting or life-threatening diseases.
I got a call next morning that Mamta had started for Snehaanchal and is expected to reach Nagpur by early evening. I blocked a bed for her. Toward early evening, Mamta arrived. What hit me hard was the pained look on the face of the father and one look at Mamta was enough for me to know that she was bad. There are moments that can be overwhelming, even as health-care professional. This was one such moment for me.
The admission process got underway, we settled Mamta in her bed in the ward. I asked for her file and got down to frisk through it to know the extent and spread of her cancer, so I could proceed with a care plan for her. What I saw in the file was a very grim, her cancer had extensively spread. She had undergone surgery, after taking four cycles of neoadjuvant chemotherapy, followed by two more chemotherapies. A colostomy had to be done because a large segment of the colon had been resected after which re-anastomosis was not possible. The disease had infiltrated her inguinal nodes causing gross lymphedema of her lower limbs. Her abdomen was distended and hard. She had not passed stools for a few days, due to multiple adhesions of her intestines. An abysmally sad state to be in.
Having evaluated her general condition, my bigger challenge lay ahead. I had to break the bad news of her impending death to her family and to Mamta. Trust me, it's not easy, a young girl full of dreams, aspirations, desires was soon going to die, die with all unfulfilled dreams, wishes and desires. She must have dreamt of her marriage her babies her career… A premature death shakes up the strongest of hearts. I too shuddered but had to approach it. I asked for the father to see me in my cabin.
As I sat in my cabin waiting for the father, he arrived, it broke my heart to see him, pain writ large on his face, drooping shoulders, meek tone of voice. He looked battered and drawn, tired and defeated. As if he was guilty of letting his young daughter down, I ushered him to sit down. Even before I spoke, there was an unsaid understanding of what lay ahead. Silence hung in the air for a few moments, which I broke by asking how much did he knew of Mamta's disease. He looked up at me and I knew from the look on his face that he was well aware of the prognosis and of the death that was in store for his young daughter.
Conversations can be extremely challenging in such situations even though we have been trained, the very grief of the moment grips you, for we doctors are humans too… there are studies that have shown health-care workers experience the “cost of caring” because the field involves being with people on their hardest day, it does take an emotional toll, this was one of those situations for me.
As we progressed into the conversation, I could observe tears building up in the Father's eyes, who was trying hard to suppress them. I put my hand on his clenched fists, and as if he was waiting for a vent, he broke down tears flowing. He was a father who was seeing his child suffer intense pain, inching toward death each single day. Once the conversation got established, he even demanded “Mercy Killing” for his daughter, because he could no more bear to see his daughter suffer such agonizing pain, he knew she was not going to survive the disease, then why should she suffer.… hence he demanded “Mercy Killing.”
I understood from the conversation so far that nobody in the family knew of the eventuality, except the father. It was time for me to make him understand why it was important for everyone including Mamta to know what lay ahead. From experience, I have known that, not disclosing the grim prognosis to the patient, the family is only trying to be protective toward their loved ones, not realizing that the dying person needs an opportunity to bid their finals goodbyes, speak their final words, talk about their unfinished tasks, unfulfilled wishes which could still be fulfilled while there was still some time…. having mentioned all of this to Mamta's father, he agreed but with much hesitation, unsure of what the news of her own death might do to his daughter. I reassured him, saying, I will handle it with utmost care.
Our team worked to make Mamta as pain free as possible, she was relatively comfortable. She smiled with the respite she got from pain and excitedly started speaking to me about her career aspirations and how she wishes to get back to her college, least realizing that she had few days left of her life, as she spoke excitedly, I looked toward the father who stood beside her, to reinforce upon him how important it was for her to know the reality, and which in turn was important for her to have a peaceful death. The distress of dying without knowing that death is lurking can be one of the worst places to be in. There is evidence-based data to support this statement.
I finished my round, Mamta was symptomatically better by then. I again called for the father, to inform him that by afternoon, I will initiate the conversation with Mamta to break the bad news to her. He seemed disturbed, he nodded and left only to return within a few minutes with his friends who had reached Snehaanchal, to give the family the much needed moral support. They were advising the father against letting Mamta know about her own impending death and were of the opinion to disclose it to her once she reaches home. In the tumultuous state the father was, he was abiding by whatever anybody had to suggest to him regarding his daughter. Hence, when his friends came along with him telling me not to disclose the prognosis to her, I had no choice but to respect their decision.
Such situations of collusion remain the most repeatedly observed ones and most challenging ones as well, because as a palliative care doctor, I know how important it is for all to know the prognosis, because death is the final event that is lurking just round the corner. A “good death” is one which is peaceful, when last wishes and final goodbyes have been done. However, at the same time, it is essential to respect the emotions, faiths, and beliefs of the families we are dealing with. Sadly, in our culture, the news of the seriousness of illness is hidden from the patient. Everybody, besides the patient, is making decisions for the patient, and most of the time, patient is oblivious of what is going on with him/her. We tend to forget that the patient has the right to know, this needs to change…
Preparations were on to take Mamta home. By this time, I too had become party to “the conspiracy of silence” against Mamta, she was going away with the belief that she will get better, which was further reinforced with the pain control. Not too satisfied with the situation, I went and sat in my chamber, I was followed by the father, he folded his hands and broke down again saying that he will never be able to tell his daughter that she will be dead soon and requested me to do it… maybe by then he had realized the importance to let Mamta know….
These are not easy situations to deal with. A young, untimely death is always traumatizing. Equipped with my training and experience, I went to Mamta in the ward. It had to be a mindful conversation, my heart still misses a beat when entering such conversations about death and dying. I asked for a stool to sit beside her. I tenderly put my hand on her shoulder and mentioned to her that I wish to talk to her about her illness and asked her permission. She agreed. I asked her whether she wishes to know more about her illness, with a quizzical look on her face she agreed. I started weaving a well-intended conversation with a goal that she will herself be able to spell out that she does not have much time left, and I could steer the conversation in that direction and she muttered those words herself…. “I am going to die” the parents heard her speak those words and broke down, after which Mamta wanted to speak to me in private. It is the worst existential pain for any parent to witness their child die before them while they stand helpless.
Both the parents moved away and gave us the privacy. I suggested to Mamta that she can make the most of this opportunity to thank her parents for everything they did for her and also to tell the father not to feel guilty for not succeeding to save his daughter…. that was a point I too could not hold back my tears and in the privacy of the moment I too cried along with Mamta… ruthless of the hearts can have a meltdown in such moments, Mamta looked at me and said “Thank You Ma'am, you are very nice. No one ever explained to me this way neither spoke to me like this about my disease,” suddenly Mamta seemed so mature, it was evident in the way she started talking, it was as if in an instant, there was a calm within her. Her, “Thank You” had a paradoxical effect on me… it made me sad because she was thanking me for letting her know that she was dying… and yet she was grateful to me for that….
These are the life experiences that leave you humbled. Such a Pandora box life is, it keeps throwing surprises at you, catches you off guard, I could never imagine myself, as a Doctor, that I could hold a young dying girl's hand in my hand and weep with her. However, such experiences remind you that besides being doctors, we are humans too, these experiences leave you enriched to deal with life better and value and cherish what we have. Also the importance of communication in such situations.
That evening I drove back home with a heavy heart. A young girl full of aspirations was to lose her battle to the most dreaded disease of mankind, “Cancer,” besides “Inhumanity” (I consider it a disease of mankind). Yet, there was a contentment of bringing the family to a place where they could bid their “final goodbyes.” A “good death” is as much important as a “good life.” I drove back home, against the setting sun, which I knew will be up in the sky the next morning energizing life. Got back home hugged my kids said a prayer of gratitude to the almighty … and the day ended for me for newer beginnings….
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Conflicts of interest
There are no conflicts of interest.