Palliative Care: A Care that is misunderstood!

Ms. Vandana Mahajan, Mumbai

A 72-year-old lady diagnosed with lung carcinoma, has ‘palliative care’ written in her treatment plan. The patient’s daughter is in tears and says “My mother is active and healthy. Why palliative care? Is she dying?” I gently respond, “Palliative care does not mean end of life care”.

I have been working with cancer patients for over 7 years now. The moment the word ‘Palliative’ is mentioned, the patient and the family get disheartened and cascade into a state of shock believing that their loved one is going to die soon.

Most often, Palliative care is unfortunately synonymous with pain relief and end of life care; which at many a times is not the case.

So, what exactly is palliative care in cancer settings?

Palliative care is aimed at improving a patient’s quality of life and it addresses ‘Total Pain’. In simple words, it will be right to say that palliative care provides comfort, support and a better management of symptoms.

On innumerable occasions, I have witnessed the fear that is invoked in the eyes of the affected patient and the family, when they hear the word ‘Cancer’; even in those instances when the treatment is ‘curative’. The patient and their Caregivers feel that it is the end of the world for them. However, every patient and their Caregiver react and respond differently towards cancer diagnosis and it’s treatment. These responses and reactions could encompass and manifest via emotional setbacks, symptoms related to the treatment, an impact on their spiritual beliefs, the paucity of funds or by other challenges faced by the family/Caregivers. Early integration of Palliative care can help, support and hand hold patients as they navigate their way through one or a combination of these challenges. It therefore becomes imperative to include a multi-disciplinary team (includes an oncologist, a counsellor or a psychologist, a social worker, nurses, dieticians and a chaplain) to be a part of the treatment plan from Day 1 to work together to provide the patient and their family relief from ‘Total Pain’.

I present to you below, two separate instances to demonstrate how provisioning palliative Care has a positive impact on patients and their families and how it helps to improve the quality of patients and their families.

Case 1

A 9 year old young girl, Shweta (name changed), was diagnosed with Childhood leukemia and was undergoing treatment with severe side-effects due to the chemotherapy. I met her and her parents once she was admitted in the paediatric ward. Shweta was fortunate to have access to the best available treatment options due to the generous financial support she received from various well-wishers and donors. Despite this, I realised that Shweta’s parents were emotionally distressed and needed emotional support. I soon learnt that the two primary factors causing distress to Shweta’s parents were the impact of her treatment on her physical growth and the fear of recurrence of the disease thereafter. The family had already relocated to pursue treatment as Shweta was their only child. I began visiting them often as offering counseling support at this critical time will provide for them, someone who they could rely on as they continued to deal and resolve their ‘Total Pain’.

Ms. Vandana with Shweta

Over time I realised that Shweta loved drawing and reading books. She would often draw pictures for me. Her eyes would sparkle and she would be filled with joy when I would give her Enid Blyton’s to read, some crayons and some colouring books during each of my visits. Her parents and I would then have long and meaningful conversations about their fears and insecurities. Tears and smiles became a part of the sessions. Fortunately, Shweta recovered completely and is today a smart 15 year old teenager who loves to travel, play games, make jewellery and is also brilliant in her studies. Over the years, my connection with the family has evolved and is special. Shweta’s father’s words are a testament to our treasured relationship when he says, “Any important decision about my daughter, I discuss with you first. You are family to us!” Every achievement is indeed shared with me first!

Integrating palliative counseling earlier on in the treatment trajectory helped Shweta’s family navigate the emotional burden that accompanies a disease like cancer. This is palliative care!

Case 2

Ms. Vandana with Harsha

Harsha (name changed) is a young 28 year old gentleman who was diagnosed with stage 4 lung carcinoma. Post preliminary assessment, he was referred to me for counselling. When I first met him, Harsha was in denial and in need of financial support. Regular counselling helped Harsha to accept the diagnosis and we arranged for him to receive financial support too.

Today, two years later, the young man is stable and able to continue treatment with regular follow-ups with the oncologist. I continue to counsel and support Harsha by catering to his constantly evolving emotional needs. Harsha is now working with a company and tells me that he would be languishing somewhere if it wasn’t for the timely counselling and for the financial support that he received. Just like Shweta, he too shares every small detail of his life with me.

This, is the power of palliative care!

Shweta’s and Harsha’s ’s story, illustrates the critical need for integrating Palliative care right from the time of cancer diagnosis – be it curative or otherwise. This pivotal action will ensure that all hope is not lost and that these patients and their families are supported and given a chance to improve the quality of their lives from diagnosis.

Every year, September 22, is celebrated as Rose Day, to bring cheer and hope in the lives of cancer patients. Ensuring easy access and timely integration of palliative care to any cancer patient and their families will help us to not only celebrate the best Rose Day ever but to also echo the theme of this year’s World Hospice and Palliative Care Day, ‘Leaving no one behind – equity in access to Palliative Care’.

About the Author: Ms. Vandana Mahajan is a palliative care counselor having a Post Graduate Diploma in Integrative Counselling. Additionally, she also dons several other hats such as being a Cancer Coach, a Volunteer Counselor for Cope with Cancer – Madat Trust (an NGO) and an Ambassador and a Counselor at Caregiver Saathi.

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