Dear 2020, we did not just forward the “happy new year” messages for the heck of it, I swear we meant it. I had several resolutions but this year they just turned into new excuses. Now I am sitting home, feeling sorry for myself and my beautiful little state of Goa, who at least to my knowledge has never experienced such lockdowns or police patrolling to make sure we are not strolling (pasoi) around but rather sitting at home.
As I was scrolling through COVID-19 situation report by WHO, to see the horrifying numbers in the countries affected, my phone beeped and my attention shifted. Now I am seeing the social media on a spree, flooded with the feeds about people misbehaving during the lockdown periods, what the celebrities are up to, the variety of quarantine challenges, and to see people coming up with the hilariously creative memes, made me laugh. Beep! And here’s another message on simple techniques of curing this illness, that seems to be leaked out from some secret data held back by China. Really! if you have not yet received it, sorry you must go and scroll back through the messages in those groups, many of such kinds should be there. Well, I don’t always deny everything that circulates around on the social media platforms, but I wish those cures were so simple, I wish it saved the lives of the medics who spent years studying and practicing medicine. Sometimes I pity people who in their genuine interest for knowing what is happening around, fall prey to these unauthorized, unauthentic viral messages madly being circulated. We are so used to it, we do not really have the time to read about and have an understanding regarding certain topics in detail, in fact we just want the quick bites of information, probably just to forward to someone else or indicate to someone of how vast our IQ (Information Quota) is. We are glad to be in the era of Information technology, hence we have easy access to knowledge, and we are keen on keeping a tab of it. But before you forward anything you come across, please try and check for its authenticity, and If you aren’t sure, check out the genuine websites, or ask someone closely related to the field, if not, at least well informed regarding that field. Yes, I would urge you to go ahead, feed your curiosity with the authentic information, don’t be like that relative holding a Ph.D. in circulation fake information all over the social media.
I see all this as a lay person, trying to understand what the people fighting in the front lines during this COVID-19 outbreak, are going through. Specially from the perspective of people associated with Palliative care. I have a special place for these people. It was not much before, I have had a life changing experience with my dad passing away in a Palliative care hospital. Since then, I happened to become curious to know about Palliative care, and it all has taken me by surprise of what all it has got to offer and teach me as a mere human being.
Just to brief you, here is the WHO Definition of Palliative Care ; “Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psycho-social and spiritual.”
In India, Dr. M. R. Rajagopal, is known as the father of palliative care, he is the receiver of the prestigious Padmashree award for his significant contribution in pioneering the palliative care initiatives in India. He is the founder and chairman of Pallium India, a palliative care non-governmental organisation based in Kerala, do check their website for the phenomenal activities they do. Kerala has not only topped in its literacy and mortality rates in India, but has also become a palliative care role model for the country. In the time of crises of COVID-19 here is an interesting article of how Kerala’s people centric health system built over the years is paying off now.
The other day I came across a presentation by Dr. M.R. Rajagopal and Dr. Stanley Perlman who has been studying the pathogenesis of murine coronavirus infections for several years. They spoke of the procedures and medicines in the proposal stage to deal with the COVID-19 situation. Certainly, I’m not from the field to gauge much, but something that struck me was the importance of autonomy. I went ahead to understand that what was being spoken of was about patient autonomy. It is about the patient’s right to make decisions about their medical conditions, on deciding who will be their voice If they can no more speak for themselves. Of course, the health care providers are to educate the patient and their caregivers regarding their health conditions, but not take decisions on their behalf. Unfortunately, it is very difficult in this era of COVID-19, as the protocols are not clear, and the default approach happens to be the aggressive, invasive treatments that include intubation procedures etc. Here is an article by Shoshana Ungerleider and Jessica Gold, well emphasizing the challenges faced by the doctors in the wake of the COVID-19.
I came across experiences of doctors where it was not only about the medications, but it was about doctors who are also looking at the aspects of communication with the patients and their families. I understood this from one of the webinars at the Supportive care coalition, where Dr. Gregg VandeKieft (MD, Southwest Washington Region Palliative Care) who is working with the COVID – 19 patients, mentioning that they are devising new ways to interact with the patients and their families. As visitors or family members cannot be with their patients at this hour, the doctors are left to convey the conditions of the patients to their loved ones via video calls and other possible means. In such situations where the medics cannot go near the patients without the sophisticated PPEs (Personal Protective Equipment) which makes it difficult for them to interact with their patients, he proposes that one should acknowledge the patient. Acknowledge the fact that they wish they could talk to them without the PPEs, but that is not possible because of the nature of the virus. The patients did understand this, but the gesture of the doctors to say so made a difference to those patients, and trust me such acts of empathy in such crutial times remain forever etched in the hearts of people.
Now, I am locked down in the house stressing about my work from home issues and my cat’s trouble in deciding whether she wants to stay in or out of the house. Well, she just rubbed off her “curious catness” onto me, and I stumbled upon another article from one of my favourite authors, Dr. Sunita Puri on, It’s time to talk about death, who herself is dealing with the COVID- 19 patients. She too mentioned the difficulties the doctors in Italy had to face in making decisions when they had the critically ill COVID -19 patients, exceeding the number of ventilators. She drew my attention regarding the importance of having conversations about end-of-life care goals, and that we should not lend up discussing our loved one’s wishes for the first time when they are in an I.C.U. bed, voiceless and pinned in place by machines and tubes. She pointed out that such discussions should be opened up from a place of care and concern rather than being dominated by fear.
Now, this may be like, I don’t know how to talk about such things, you can actually if you really want to. But before that, I thought that I have never had such conversations, even with myself regarding my own critical health conditions, except for once, yes! If most of you remember, such conversations only happened while you were buying the medical insurance policy scheme. I too did, but the talk was all about how much I am going to pay for the cover I would want to get for the list of heinous diseases that I didn’t even want to finish reading. Well, it is presumed or emphasized that in those times of illnesses I should be receiving medications from the most expensive hospitals and their best procedures should be followed to fix my body. Of course, it is important to financially equip ourselves for the bad times. But, since we are on the brink of such conversations, let’s dive in a little dear medical insurance sales person, let’s take this into a real case scenario where you are faced with a life limiting illness, what all would you really want to be done for yourself? Now, I know all you Instagrammers are the stardust, but before that we have to be the earth’s dust. I know you are young and are working hard on your fitness goals and you will think of all such things later. Oh sure, you can, but, why not now? you see, in this times of uncertainty, in just a span of a few weeks, we witness the intensity of this virus to cause havoc by simply causing the usual, but this time, a life claiming uncontrollable cough and cold. The heart attacks, the types of cancers, accidents etc., have not undergone a lock down folks. And remember? age is just a number! right now, as I’m writing this I don’t know if anything of such is in my fate. I don’t wish to scare you readers, but it’s good that I met you at this point. Mortality is the truth in the face of humanity. After being with the COVID-19 patients some of the medics have expressed about the goals of care for themselves and how they want to be cared for, when they are in their critical times. This is also to encourage people to ponder upon some of the important and relevant questions we need to ask ourselves and our loved ones. No one knows when we are going to face it, but talking about how well we would want to die, is in turn talking about how well we want to live. Remember the famous book, “Who Will Cry When You Die?”. So, you see, I’m not talking about something out of the blue, just like the simple thing of washing hands and covering your mouth while you cough (I know you always did) is becoming a matter of concern now, so is this one. Like otherwise, let this not remain as another chapter closed in those self-help books, rather this time help yourself and help your loved ones. Open up the conversations for excavating of one’s stories. We often heard the terminologies of battle, survive, fighting spirit, when people are faced with a life-threatening illness. Ask what is it for you to be a fighter? What miracles would you await? with whom would you want to share that important story? What would you give your pets? Where would you want to be? What are your concerns? You may feel overwhelmed while reflecting upon these questions, do feel so, as you are going to shell out some of the most important answers. For we must at a point come to accept the limitations of medical interventions and the power of nature lying above our own will. As eloquently put across again by Dr. Sunita P. in one of her talks at Endwell.
Not only while talking or listening to someone about their illnesses, but also while coming across someone sharing stories about their challenging times, their difficult lives, you may be dumbstruck, feeling awkward, not knowing what to say, and let me tell you that it is okay. You need not always have to say something, but be there, stay and listen to their stories, they might themselves guide you on how to help them on how to heal them.
Thank you for patiently reading this far, one of the beautiful things we can simply do is be still and listen, in my journey of exploring through, I came across an extraordinary Ted talk by Smriti Rana – How storytelling can transform lives, I was moved by the powerful story she shared. I learnt that it is important to be still, for you will be able understand the language of the whispering trees. I found one of my friends could also write letters to the seas.
In this time of pandemic, we are at a standstill, let’s take this opportunity to remind ourselves of that which we have forgotten, we have forgotten to pause and listen, we do not wait, we are in an ever fast moving pace. We are so used to scrolling on our phones, quickly reading up and scrolling down to the next, not even pausing to capture the essence of the previous read. We have forgotten to stop and listen to someone. Always remember this, when someone is sharing their stories with you, they are allowing you into their sacred space. It is a dark place, a place where they are raw, a place where they are the most vulnerable. If you are invited there, be patient, do not enter with your feet soiled in judgmental muck, for the muck might remain there stuck, long after you are gone.