“When we stand on the low rungs of the ladder of sorrow we cry
When we come to the middle we are silent
But when we climb to the top of the ladder of sorrow, we convert the sadness into a song.”
(Ancient Hebrew Poem)
My patients and their families find themselves on top of this ladder…the songs either sad or stoic; fearful or courageous; peaceful or disturbed. Whatever the song, I have learned to sing it along with them.
And to answer the questions…
Is it difficult?
As a young doctor all I wanted to do was save lives, cure diseases, and fight death. Now in palliative care I do neither. From trying to restore health and eliminate disease I now try to ease the suffering; rather than fighting death now I manage it actively, honouring death just as I honour life. From trying to “treat-cure” now I try to “heal”. The tightrope walk between continuing aggressive treatments and letting go of futile ones, between leading and listening, has been one of the most challenging aspects of this journey.
The patients that I see at my workplace have cancer that is not curable and multiple symptoms. They may have intolerable pain, uncontrolled breathlessness, persistent vomiting, or poor appetite. They may be anxious, scared, depressed and unable to sleep. They are weak and frail both in body and in mind. They may present with complications of the cancer, multiple infections, or wounds that need to be taken care of. In addition the families are in distress, having no money for medicines or even for food and many of them from remote villages in India have no access to medical care. Addressing these multiple complex issues is a difficult and an uphill task. There are times when I have been uncertain, when I have been plagued with self-doubt, and have felt inadequate.
So how do I cope?
“The capacity to learn is a gift
The ability to learn is a skill
The willingness to learn is a choice”
Learning is life-long in medical profession. I have a simple principle…”When in doubt, check it out.” When I am challenged with a complex issue I seek help… from the books, from my seniors, from my juniors, from my peers, and from my team. One of the common fallacies among many, even the medical fraternity, is that palliative care is more about care and less about medicine. To set the record right, it is a beautiful amalgamation of evidence-based medicine with compassionate care, one without the other is worthless. While I believe to large extent compassion is innate, there is plenty of evidence and guidelines in palliative care literature that can provide answers to the medical uncertainties. All it needs is an enquiring mind, willingness to learn, and a process of reflection. Every experience teaches you something and I learn by asking:
- What happened
- What did I find difficult
- What did I find easy
- Why was it difficulty or easy
- What do I need to do to improve
- With the knowledge gained how would I handle this differently
I take these small steps every day with a hope and prayer that today I am more competent and effective than I was yesterday.
Am I strong?
“Knowing what it feels like to be in pain is the reason why we try to be kind to others,” said Jiraya, one of the three legendary ninjas from the Naruto series. Human suffering is fraught with unpleasantness yet accompanied by beautiful acts of compassion. Compassion is “suffering with or feeling for another” accompanied by a “desire to and act of relieving the suffering”. Empathy on the other hand is “feeling as another or mirroring of another’s emotion.” Compassion is not just caring, but involves taking action to relieve that suffering. While compassion was inherent part of my personality since childhood, my upbringing in an environment where care, kindness and acts of altruism were the norm further strengthened this trait thereby influencing my choice of profession. Empathic engagement is central to psychiatric practice and this was a skill I had honed during my professional training in psychiatry. Compassion and empathy are fundamental skills that one requires in palliative care.
“Trials teach us what we are; they dig up the soil, and let us see what we are made of,” so said the Prince of Preachers, Charles Spurgeon. Over the last few decades a lot of relentless digging has been going on in my life. The immature mind like the iron ore was smelted in the furnace of life. Tempered by the fire of adversity the molten mind embarked on a journey of self-discovery and self-awareness to reveal an inner core of steel. Over the years I have learned to bounce back and adapt, however arduous the journey may be. This readiness to meet and cope with challenges, manage ones emotions, and exhibit a sense of control is termed resilience. Both nature and nurture has contributed to this hardiness within me.
It was with these skill sets of hardiness, compassion and empathy in my toolkit that I entered the field of palliative medicine. And these qualities have stood me in good stead in my journey here, helping me maintain the crucial balance needed for healthy and stable functioning.
Every day I meet patients and families afflicted with incurable disease. At times their suffering and distress resonates within me and tugs at my heartstrings. To witness the suffering and death of children and young adults is particularly agonising. I traverse this continuous cycle of suffering and death, one patient after another, often simultaneously… a journey that is emotionally exhausting.
So how do I cope?
When confronted with extreme distress in patients and relatives I don’t have a problem shedding tears…even in their presence. It is important to let the pain of loss flow through you and out of you. I have experienced the spectre of death when my mother had a near fatal accident. The professional grief that I experience is not as intense as personal grief; there is some sense of control. As Dalai Lama rightly said, “Your own pain is involuntary; you feel overwhelmed and have no control. When feeling the pain of others there is a feeling of discomfort, but there also is a level of stability because you are voluntarily accepting pain. It gives you a sense of confidence.” If, on those rare occasions, the grief is overwhelming I withdraw, take a break. I seek help from my colleagues, peers or friends; the human connections I am blessed with and do activities that relax, rejuvenate and restore my balance.
Our grieving is as individual as our lives and we need to find our own way through it. We sometimes tend to get attached to a patient because we identify with them when their life circumstance is similar to ours. Being aware of this risk and attempting to maintain professional boundaries lets us tide through such situations. Once you recognise the blurring of boundaries getting a colleague involved in caring for such a patient is the way forward. We need to be aware that while we attend to and monitor the needs of the patients, we need to simultaneously take care of our needs too. Self-knowledge and self-awareness will keep us on our feet in this difficult journey. Self-care is not selfish. If the vessel within you is empty, you cannot serve.
Being aware of one’s limitations both as an individual and as a clinician is an important skill in life and in medicine. You may be able to relieve the suffering of most patients, but not all, and definitely not at all times. Over the years I have become less critical of myself, accepting and acknowledging my failures and inadequacies, and working to improve them. I have learned to notice, value and respond to my needs as generously as I attend to the needs of my patients and relatives. “Forgive yourself for not knowing what you did not know before you learned it.”
Sunset at Haji Ali Worli Sea Face Bandra Worli Sea Link
The one-hour journey back home takes me through some of the most scenic stretches in Mumbai. The cadence of the sea puts me in a trance…the hues of sunset soothes my nerves. To quote John Burroughs, “I go to nature to be soothed and healed, and to have my senses put together.” This is where I shed my role of a palliative care physician/doctor. The traffic is a blessing for me…as this gives me the time to wind down after an exhausting day.
I cherish the human connections I have made along the way, each and every one of them. I am blessed to have them. They help me reconnect with the outside world. My family; my friends from school, “DHS 84,” with their random banter keep me in splits every day; those from medical school, “Naughty Nine,” the girl gang whom I turn to for hugs and accolades; the “Hot Moms,” a cabal of weight watchers with shared parenting woes; and “Pall Friends,” three friends who have embarked on this difficult journey together…and then that one special connection that withstands the test of time, that understands the unsaid, makes you smile through the tears and quietens the soul. These connections nourish me, keep me grounded; my safety net at all times.
“Write hard and clear about what hurts”, said Ernest Hemingway. Writing helps me cope…it helps me understand and express my emotions…it gives me a voice…it clears my mind and helps me hear the whispers of my soul. Writing heals me. It is important for each one of us to find that one pleasurable activity, that one hobby that helps us heal. My blog keeps me going…
“Is it depressing?”
I work in a landscape of death and suffering. I connect with the sufferings of my patients and relatives…I grieve along with them, I experience the effects of their suffering, sadness, shock, distress, though not first hand…this is called secondary trauma or vicarious trauma. “All suffering prepares the soul for a vision,” said Martin Buber. Along with suffering I also witness the capacity of the human spirit to thrive despite the adversity, aptly named indomitable human spirit. Just as I grieve I learn to grow with my patients…by observing, by interacting…this is called vicarious post-traumatic growth.
All of us will die one day. Death is the only certainty in life. Being aware of one’s mortality makes us anxious. I was anxious…prone for panic attacks, especially while flying or travelling, triggered by the fear of dying myself or of losing someone close to me. I was frantically trying to control the future and keep everything and everyone safe. And then I entered the world of uncertainty, suffering and death. Today death is no longer a stranger in my life but a frequent visitor lurking in the shadows every day. While some meet him in stoic acceptance others are distressed by his presence. Will I meet him in stoic acceptance or will I be distressed…I ponder!
So how do I cope?
This constant proximity with death and dying reminds me of my own mortality. When I accepted the inevitability of death and dying as an integral stage of living, my fears started to diminish. Dying well then became another task of living that could be mastered with the right information, at the right time, with the right choices, in the right place. What are the interventions I would like and would not like at the time of imminent death? Where and with whom would I like to spend the last days of my life? As I started to think about my death actively and directly, and prepare for it I was able to transcend the feelings of anxiety and insecurity. The concept of “Living Will” recently approved by the Supreme Court is the window of opportunity for every one of us to initiate our own personal dialogues about death and dying.
I had this intense desire to control everything…over-plan and over-think…predict the future, plan for the worst scenario and when things did not work out as planned I became anxious. I craved security and certainty. And then palliative medicine happened…I saw how uncertain the promise of tomorrow is…how uncertain the practise of medicine is…how life could change in an instant. I learned the art of controlling the controllable while managing the uncontrollable. I learned to go with the flow, take each day as it came. While I still continued to over-think and over-plan, I also learned to groove to the rhythm that life offered. As I embraced the uncertainty the anxiety started to ebb.
“Dying well must be preceded by living well, and living well must be predicated on dying well. Thus life and death are unified in the wheel of life.” Paul T P Wong. I have seen dying patients regret the lost chances, the unfulfilled dreams. I have seen them carry their angst to the grave, distressed and burdened by it. Why do we wait till death comes knocking to realise the dreams and heal the angst?
I decided to start putting my life together. I am slowly learning to let go of the hurts. Instead of living a life dictated by the others I am learning to live for myself. This journey has not been easy…balancing duty with desire, freeing oneself from the bonds of expectations…but in doing so I have found myself. I make time for those healing connections that I cherish; within myself and around me. I live in the moment…I make memories…doing things that I enjoy, with the people that I love. Just as I embraced uncertainly I embraced my life…fully, completely, the good and the bad.
Can any conversation about death and dying be complete without God? If I find Dalai Lama’s “My religion is very simple. My religion is kindness” inspiring; Pope Francis’s “It is not necessary to believe in God to be a good person. In a way, the traditional notion of God is outdated. One can be spiritual but not religious. It is not necessary to go to church and give money – for many, nature can be a church. Some of the best people in history did not believe in God, while some of the worst deeds were done in His name” resonates within me. Need I say more?
While my journey towards spirituality started with a religious orientation, today Hinduism for me is just part of my social identity rather than a belief system. For someone from an orthodox Brahmin family, who woke up to the chants of Venkatesa Suprabatham and Vishnu Sahasranamam, for whom rituals and prayers were a daily routine, this is akin to blasphemy. My spiritual journey has evolved. True compassion is my religion and acts of empathy and kindness my prayer…my work is my solace…I find my peace here, a peace I sought in vain through prayers and visits to holy places few years ago. One of the enlightened minds I met during my journey in palliative medicine, Nani Ma of Ganga Prem Hospice in Hrishikesh, summed this up for me beautifully when she called me a “karma yogi” for whom right work, done well is a form of prayer. Hindu texts describe three means to spiritual liberation jnana (path of knowledge), karma (action) and bhakti (devotion)…for each his own path.
An enquiring mind wants to know why…medical science seeks evidence. I looked through studies that discussed the neurobiology of compassion. Compassion resides in the anterior insular cortex, the centre of “social brain.” Acts of compassion activate areas of brain that is responsible for happiness and reward (caudate nuclear and anterior cingulate). The love hormone oxytocin is released when we act compassionately. This hormone reduces stress response including anxiety and contributes to relaxation, trust and psychological stability. All the more reason to practise compassion in this chaotic world!
When you deal with suffering, death, and dying you realise the fallacies that we propagate…“Do good and good will come to you.” Not necessarily. Believe me there are no hard and fast rules in life. Life can be unfair. Life has many surprises in store for us; some good, some bad. We need to accept what happens and learn to deal with what comes our way. “Hard work does not go unnoticed.” A lot many times it does. Not being given credit for your work, feelings of isolation, lack of respect and subtle bullying makes one think, “Why am I doing this?”
People work for money, power, fame, and position. When this is threatened there is chaos within them and around them. If you are working for accolades then you are dependent on others for your growth. For me work brings meaning, purpose, peace and growth. When the source of motivation is within you what happens around you does not matter. I survive because the fire within me is burning brighter and stronger that the fire around me…the challenge is to keep that flame going.
What shines through in all this is the resilience of the human spirit, that though traumatised still has the strength to find a balance. My patients have been my teachers. I have learned from them that suffering is a challenge worthy of investment and engagement and that there are resources within oneself and without that will help us cope with these demands. I have experienced a heightened sense of gratitude for each day that I have, never mind the imperfections, and a deepening faith in the strength of the human spirit. I have paradoxically been enriched, found the stillness amidst the suffering. I have learned to laugh, to cry, and to live from the depths of my soul. In trying to heal others I am on the path of healing myself.
And as I return home, I see the faces coloured in different hues… the red, blue, green, purple, white, black merging with each other in harmony, celebrating Holi. I see moments coloured in different hues…love, passion, sadness, suffering, hope, dignity, peace, distress merging with each other in harmony, celebrating Life. As I reach home and step out of the car I am humming… “Rang Barse.” Time to celebrate the Festival of Colours…time to dance, eat and make merry! Only I am singing a little louder, grooving a little wilder…
Depressing or not, my dear readers, it is for you to decide…
(All pictures sourced from google for representational purposes only)