Author: Ms. Vandana Mahajan, Mumbai
Context: I am a Palliative care counselor and have been counseling cancer patients for over 7 years now. I am associated with a cancer NGO, Cope with cancer-Madat Trust, and currently work at the Thoracic Disease Management Group (DMG) of Tata Memorial Cancer Hospital, Mumbai, (TMH) as a volunteer counselor.
I would like to share a few pages from my diary which showcases my role as a palliative care counsellor while also highlighting how the team I work with integrates palliative care into a patient’s treatment plan at our DMG!
Patients at the Thoracic DMG are mostly diagnosed with advanced cancer; and palliative care is integrated into the treatment plans right from the time of diagnosis. Post the initial diagnosis, every new patient and their caregiver is first counseled by the oncologist and then sent to me for counseling support. Together we work with the patient and the family to help them understand the concept of palliative care, what it entails and what the road ahead looks like. All through our interactions, we emphasize the various ways by which we can offer and ensure that the patient achieves an optimum level of quality of life.
Hearing the diagnosis of cancer most often breaks the patient and the caregivers’ fragile spirits. As they try to comprehend the events unfurling before them, they are asked to maneuver their way around ‘a big hospital such as TMH’, to meet specialists from different sections of the hospital. Some of them feel lost in these instances. The Social Worker on our team then holds their hand and gently assists them to navigate their way through the hospital to reach their destination. This support goes a long way to reduce their emotional distress.
For those patients and families who are economically challenged, learning about the financial cost of cancer treatment causes financial distress and contributes towards their ‘total pain’. At this juncture, our team guides them towards the various sources offering financial support. The NGO, I am associated with, also extends financial support to those in need. Ensuring that these families have access to timely financial support allows them to continue with their treatment, which would not be an option otherwise.
Those families who are from beyond Mumbai and who are economically challenged, struggle to find affordable accommodation during the course of treatment. The thought of not having a roof over their head, while their loved one receives treatment, compounds their helplessness while also magnifying their ‘total pain’. Our team then directs them to places which offer subsidized accommodation facilities. Those families who are unable to afford even these subsidized charges are connected with donors and NGOs who will offer support.
Once these basic needs are addressed, the patients in need of pain and symptom relief are directed to the palliative care department to manage their pain and address their other distressing physical symptoms.
A Dietician’s consult is arranged for those patients who need special dietary care. For example, those patients with Naso Gastric Tubes (NGTs), and those who cannot have solid foods are advised on what is best suitable for them. We make them aware that Chemotherapy could cause weight loss / intolerance to some food items and subsequently provide guidance on what type of food such patients might prefer.
For some patients’ when the disease progresses and they stop responding to the cancer treatment, they are put on best supportive care, and the palliative care team takes over more firmly. Majority of these patients will now need End of Life Care (EoLC). I have had the privilege of counselling several EoLC patients and their families, even providing bereavement support, after the patient’s passing. I am still in touch with a few of such families.
Together, the team was able to offer services to our out station patients even during the pandemic while being in the midst of lockdowns by providing tele-consultation. Medicines were couriered to those who needed special medication, and we connected our patients’ to oncologist’s who were within their reach (locally available).
Our fortnightly online support group meetings’ consisting of an oncologist, a counselor, a dietician and a yoga therapist, offers support to our patients and caregivers, all free of cost.
It is with pride I say that we function under the able leadership of Prof (Dr) Kumar Prabhash, HOD, Medical Oncology, TMH Mumbai. Dr Prabhash motivates us when he says, “Every patient and their family needs to be taken care of. The Quality of Life (QoL) of each one of them matters.” He emphasizes the need and importance for counseling when he says “Counseling is very important. How and what to say to the patient and their families, is best done by a counselor.”
This is an example of how a multi disciplinary team works together to provide patient centric holistic care. Together, we aim to address and support the ‘Total Pain’ of our patient and their family by providing them with the best Quality of Life that can be offered.
Palliative care aims to improve the Quality of Life of the patient and that is exactly what is emphasized at the Thoracic DMG.
I leave you with a personal favourite quote of mine from Dame Cicely Saunders, “We can’t change the outcome but we can affect the journey!”.