Sandhya Maharaj
Physician, Caura Palliative Care Unit,Trinidad and Tobago, W.I
Email: sandhyamaharaj1@yahoo.com
“You write your notes as you speak Dr M”, a nurse commented as she read my case-records for the morning rounds. Her comment made me reflect on my practice of medicine since joining our modest palliative care service. In fact, I didn’t follow the conventional ‘SOAP’ notes anymore as vital signs seem to be incongruent to the narrative of human suffering that I encountered most mornings on rounds. I smiled at her and thought “Am I not lucky that in my daily practice of medicine, I am able to use the art of storytelling?”
Dr Kubler Ross says in her book ‘On death and dying’: “If we are willing to take an honest look at ourselves, it can help us in our growth and maturity. No work is better suited for this than dealing with the very sick, old, or dying patients.” She was absolutely right. Most of us working in palliative care are forced to think and re-evaluate many things in our lives. We hope to live our lives in a way that would be useful, loving and fulfilling. The irony of this is that the ‘dying’ makes one think about ‘living’. I was reminded daily of the small pleasures that I took for granted, the ability to enjoy a few spoonfuls of a meal, a supportive family and most of all, for now at least, good health and independence.
Working in the field of palliative care in a resource constrained nation comes with a lot of challenges. These struggles are written boldly on our hospice walls: Lack of opioid choices, lack of trained and supportive staff and many other similar barriers. The invisibility of this ink allows us to carry forward this invaluable service through the presence of one very strong emotion, that of, hope. As healthcare practitioners, we often encourage our seriously ill patients to search for hope in their dire circumstances. An attempt is made to find hope in ours.
Hope is met at the junction of meaning and strength. I remember the words of my grandfather when he said to me “your work is your worship” and so my work at the hospice became my daily offerings. I was able to find meaning in my daily practice as it was focused on my patients and their families. The fulfilment that this brings is a unique experience, almost indescribable as it was an emotion only felt by immersing in this work and inexpressible by words.
The art of communication reminded me of how little the patients and their families wanted from us as health practitioners. Family meetings which started with high tensions and heat usually tempered to a simmer at the end of a conversation. If it didn’t, maybe the recipe or the cook was flawed.
Interactions with patients became less rushed and unconventional. Oh! How I enjoyed having part of morning rounds in the hospice-gazebo for those patients who could make it to sit outside! The fresh air, amazing lush rose garden and random animals being part of the consultation seemed oddly fitting as part of hospice medical rounds. The hodgepodge of misfits made sense in this setting. The physician who has accepted that there are limits to medical care, the terminally ill patient and the abandoned animals all gathered around to partake in discussion on how to continue living life whilst dying. In my previous practice of acute medicine, I would never have imagined that just sitting with a patient can be amazingly therapeutic. The reality of human compassion seems to brighten the dampest spirit. The fact that simple, essential, inexpensive medications can make patients approaching the end of their lives comfortable, astounded me.
In a nation where there are a lot of financial constraints, I can boast of health professionals with a lot of honourable and compassionate constitutions. There are constant reminders of the kindness of the human soul: the nurse who sits at the bedside of a patient all night who is scared of dying or the nursing aid who washes and combs the hair of a disabled child when she visits her ailing parent in the hospice or the family member of a patient who buys the favourite foods for the other patients in the shared bay. I felt grateful to work in a homely environment which encouraged me daily to be a better person and by extension a better doctor.
I often get asked, “Don’t you find working in palliative care incredibly depressing?” I usually, give my standard response of “no” followed by the explanations of why I disagreed. However, having practiced in this field for almost five years exclusively, another emotion arose recently, that of uncertainty. I’ve been encouraged while growing up, to always put oneself in someone else’s shoes before making a judgement about them or in the present context, empathising with a grieving family. I reminisced about the numerous family meetings I have sat in. As I attempt to switch places with the families, who we assemble to discuss care plans for their terminally ill relative….I marvel. I wonder if I can be as resilient as these folks. The continuous stream of tears, anger and questions are ultimately outbursts of love for their relatives. The years of marriage, the spoken versus the unspoken words, the unresolved issues all make their way to the forefront of those involved minds. The beauty, chaos and sometimes relief which permeate the essence of these human beings can be challenging to deal with. Naturally, as human beings, we employ defence mechanisms to protect our emotions. In reality, immersing oneself in grief daily can be fatiguing. This is where the fundamentals of palliative care come in, that is to employ a team approach to dealing with difficult situations. Moreover, we try to find solace in things that uplift our spirits healthily and heartily.
As palliative care health workers, our journey in establishment of this field is much like our patients … a story of struggle. Palliative care always brings to mind philosophy, great writers and poets. It seems fitting that I quote Rabindranath Tagore here: “suffering is the true wealth for such imperfect creatures as we are.” Bearing this in mind, it makes us muse over the personal stories we hear daily. I’m reminded of the husband of one of our patient’s saying how much courage he got from a team member during his wife’s last weeks on the unit. His heartfelt words reinforced that caring for the terminally ill is not depressing, but in fact courageous.
Post-script
This piece of work was inspired by the people of my country of Trinidad and Tobago and the immense moral support of my family. In addition, by the deep impact terminal illness has on a patient and families. Chronic serious life-limiting illness unfortunately changes a person. Physically, one’s appearance changes. Emotionally, one’s outlook changes. Spiritually, one’s faith is questioned. Morally, one’s choices are challenged. Financially, it drains. Intellectually, one can’t make sense of it. Finally, it strips one of independence. As a physician, I am reminded to be human and what a privilege it is to be with my patients through this change.
