About the Authors:
Dr. Manasi Patil is a Paediatrician by training, and a Fellow in Paediatric Palliative Medicine in the Department of Palliative Medicine at Tata Memorial Hospital. She has a keen interest in exploring novel ways to provide holistic care to children with advanced cancer and facilitating the establishment of networks for children in need of palliative care within the community through the training of local health force, and the advocacy of these services in India.
Dr. Prajakta D. Bhagat is a senior resident (MD in Palliative Medicine) at Tata Memorial Hospital, Mumbai. Her areas of keen interests include Palliative care in gynaecological malignancies, chronic respiratory diseases and renal supportive care. She wishes to incorporate and channelise palliative care services into the general population suffering from chronic illnesses.
The field of Palliative Medicine is one with many challenges, very much so in the context of incurable advanced cancer. The cancer is beyond cure, but not beyond care; which is why it becomes essential for palliative care services to be integrated in a timely and planned manner during the journey of cancer. Palliative care, for both children and adults, aims to alleviate distress in all its domains: physical, psychological, social, financial, and spiritual. For the team providing palliative care, it is a roller-coaster ride of emotions- with ups when they see their patients smile as their pain and other symptoms are controlled; and with absolute lows witnessed when patients are lost to the illness.
The below are a few instances from our practice which highlight the importance of early integration of palliative care into cancer care.
A five-year-old with high-risk Neuroblastoma, with all curative options exhausted, was referred to us for symptom management. Achieving optimum pain relief for this child required the judicious use of analgesics, escalation to, and constant titration of opioids. This was possible as the family was constantly supported through repeated counseling, telephonic outreach, and frequent monitoring right up to the death of the child. The silver lining in this situation was that since the child had a prolonged course of illness at our hospital, over time, the family had developed trust in the palliative care team. While we were fortunate in this case, there is often not enough time for building this trust.
In another instance, we had a twenty five-year-old with metastatic brain lesions, who had a fast, stormy course of illness and clinical deterioration within a few days. It was a mammoth task to bring his parents and wife to accept that his coma was irreversible, and that the place of care was now going to be at his own home. When we met the family for bereavement support, we observed that though they were grieving, they were content that their son / husband had passed away peacefully at home, and within the comfort of his family, including his siblings and friends.
Constant and clear communication about the changing goals of care, and the vital role of advanced care planning is essential in all situations. This strengthens our resolve for patients with advanced cancer on best supportive care, in providing medications for symptomatic relief, building the confidence of care givers for care provisioning, addressing the feelings of regret or guilt and in helping them to take the decision to care for the patient at their preferred place. The provision of remote telephonic / video-calling assistance and strong liaison of the palliative care team with local practitioners close to a patient’s home, will ensure that the patient’s quality of life can be preserved, right till the end.
Ensuring transparency in communication, and incorporating psychological counselling and techniques such as play-therapy, music-therapy, art-therapy, journal writing, etc. can support and comfort patients as they battle the disease. For older children, adolescents and adults who are able to understand the advanced nature of the illness and are aware of their impending death, providing emotional and psychological support may help them make the most of their time, and also engage in activities for legacy or memory-making.
Palliative medicine may not change the harsh realities of advanced cancer, but its timely provision will ensure that distressing symptoms are alleviated and that the quality of a patient’s journey is maintained to every extent possible.
To conclude, we share a short reflection from the journal of one of our residents:
“Waiting for my next patient at my desk, I saw Ruhi (name changed), a seventeen-year-old girl, being wheeled towards me. Ruhi had visited our OPD a few times; each time, with inadequate pain relief and therefore in need of an increased analgesics dose.
Once admitted to our ward, initially, no amount of analgesics ever relieved her from her pain. Each day would go by with her crying and yelling in pain. Every time this happened, our team rushed to give her intravenous analgesics medications. She would then stop crying and lay on her bed for the rest of the day. On prodding, she would always nod, barely speaking, no words whatsoever.
We knew Ruhi was abandoned by her parents and had endured a fate of illness and suffering. She was raised in an orphanage and her malignancy had left her with one leg amputated and one arm paralysed and dependent. The disease had also kept her away from her hobby, her mandala art.
Our Palliative Care team left no stone unturned for Ruhi. We not only alleviated her total pain, but also coordinated between the multi-professional teams to provide her with the best possible holistic support that we could provide.
Though she was loved for, cared for, and surrounded by people who knew her and understood her, yet a part of her seemed lost forever, aloft, as if yearning for something; probably independence, friends, self-image, parental / family closeness and affection?
They say that one’s eyes are the gateway to one’s soul. In Ruhi’s beautiful eyes, I was met with cold darkness and nothingness.
I still question myself whether the coldness which I actually saw and felt was really her’s, or whether those were my own reflections.
She made me understand that one could replace all the ‘probables’ and still feel discrete. Was I just a mere audience to her suffering?
Ruhi left this earth peacefully in her sleep. She also left an impression on my memories. These memories changed me, challenged me and even consumed me. She also made me contemplate and redeem my love and affection for my loved ones, towards my art, and to also never take life for granted.”