About the Author:
Ms Vinutha Suresh is a Psychologist and Project Co-ordinator, at the Department of Anaesthesia, Pain and Palliative Care, Cancer Institute (WIA), Adyar, Chennai.
When I first saw Vanitha (name changed) in our outpatient department a few days ago, all I saw was a middle-aged woman in a wheel chair with alopecia and anxious eyes. Most of her face was covered with a mask, while her body was wrapped up nicely in a thick blanket on a humid day. I realised that her hair loss was primarily due to the side effects of her chemotherapy and radiation.
Before introducing Vanitha as a patient, I am privileged to introduce Vanitha as a person. Vanitha is from a beautiful village from a remote part of Kumbakonam, a temple town in Tamil Nadu. She is ‘the’ favourite aunt in a family of nearly 60 members. A passionate cook, a devoted wife, a proud mother of two daughters, and was someone who spoke lovingly to her cattle, hens and roosters as she worked hard in her farm.
During the visit, Vanitha’s family met us first to share that Vanitha had a lot of questions about her illness and prognosis. Like any other family, they expressed their inability to address all her queries as they were emotionally involved and also didn’t know how to respond to her without hurting her. They went on to share, “Honestly doctor, we don’t have the answers to several of her questions”. They had therefore brought Vanitha to us, for us to break the bad news (so to say!).
The doctor and I (psychologist) then set the stage for sensitive communication and were ready to answer the questions we usually encounter: “Will I be cured?”, “Can I lead a normal life like before?”, “Will my children also carry the disease?”, “Can I live without the stoma bags?”, “Should I be confined to the bed?”, “Can I work again in my fields?”, etc. My experience of working with patients who are anxious, bargaining, in denial, in spiritual distress, inconsolable, helpless etc. made me recollect all the protocols and standards I knew off to scientifically address any emotion that Vanitha may express. My colleague and I even reminded ourselves of how all patients, to a great extent, know what they are suffering from, which will make our job easy. But Vanitha, completely threw us off guard!
She came to the point directly.
“How many days do I have Madam?”.
When that was answered, she cried briefly and then composed herself.
“Madam, I worry for my daughters. Once my cancer was diagnosed, everyone persuaded me to get them married off. Yet, I chose to educate them. My older daughter is doing a paramedical course and the second one is pursuing her graduation. They are capable and strong.”
From that point onwards, I felt Vanitha owned the entire session.
She clearly verbalised her goals of care, what she wanted to achieve while her clock was ticking. Once she gained clarity about what was expected over the coming days and the best way to manage them, Vanitha mentioned that she would like to spend the remaining time she had at her home. She then began talking about her practical concerns, one by one. These included questions on wanting to know if her discharge could be expedited, if she could travel by car, and her eagerness and query to learn stoma care. It was at that moment I felt that her premorbid personality took over. You see, Vanitha was a natural crisis manager.
Vanitha then uttered these pearls of wisdom: “Madam, I have never relished the beauty of nature, but after getting admitted in the hospital, I realised how priceless they are. The chirping birds, cool breeze and tiny rays of sunlight that penetrate through the miniscule windows of the ward, I am taking it all in. The sun rises every day and sets every day, but only now I appreciate the beauty of it. I had forgotten to smell the roses in the daily bustle. Now, I have made up my mind to enjoy all the little joys of life till I live.”
Up until that moment, I thought of myself as a skilled counsellor and as someone who assisted patients cope with their psychosocial or spiritual issues, using the expertise and knowledge I had gained over the years. But, lo and behold, here was my patient, manifesting her noble sagacity. I thought that my role towards Vanitha was to provide emotional support after the disclosure, but Vanitha had rendered me dumbstruck with what felt like an oration.
I was aware that inevitably, Vanitha’s condition was going to worsen. However, Vanitha’s choice to live her life on her own terms, was possible only after Vanitha took the initiative to know about her future. She not only accepted whatever life threw in her path, but also did so with conviction and grace. The clarity of her thought, the love and respect her extended family displayed, was like a breath of fresh air.
Vanitha, then gave the finishing touches. She invited us over to her home. She said, “I will take you to the temples myself; or in my absence (which subtly indicated that she had already accepted her condition), my husband will do it.”
The inputs provided by the stoma nurse’s to Vanitha and her family, the hastening of the discharge process, the care plan that was provided to Vanitha and her family are beyond the scope of this story.
What mattered most was that it’s not always essential that the physician or the counsellor must always have something to say to their patient or their caregivers. It is ok to just listen and absorb from someone who has seen a lot.
For me, Vanitha, became an instant therapist and her words gave me a message for my life, “Take time to smell the roses, you don’t need an epiphany to start living”.
That is when I remembered Beau Taplin’s words, “Sunsets are proof that endings can often be beautiful too”.
2. This collection is a short collection of reflections which aims to encapsulate the heart and soul of dedicated individuals, who have embarked on a journey to provide compassionate palliative care to their patients and their families. With each reflection, the IAPC strives to present a deeper understanding of the value of dignity and the immense impact these compassionate individuals have had on those receiving care from them.
The initiative wishes to not only highlight the pivotal role of the members of a palliative care team, but also serve a reminder that to be able to provision quality palliative care, one needs to transcend and expand the medical realm to also include the realms of emotional, psychological and spiritual care.
The IAPC thanks each of our Authors for graciously sharing their experiences, thoughts, wisdom and also their vulnerability thorough their stories.
Thank you for reading these heartfelt stories which are rich in experiences and full of insights, as they illustrate the multidimensional nature of palliative care.
This article was Story #2 of 8 from the collection.