Is suffering necessary in Health Care?
As age caught up with my parents, they went through multiple hospitalizations. And I walked through the roller coaster of emotions like any other family going through similar circumstances. It has been over nine years now that I have been in and out of hospitals for my family. Right now, I am writing this article from a hospital where my brother is recovering from COVID that he caught while he was undergoing chemotherapy – the journey continues!
Strange as it may sound these hospitalization incidents have been a blessing in disguise because they changed my perspective towards "suffering". I have become more mindful of human nature & my habits – many of those cause suffering. As an example - I feel a lot more empathy and compassion towards healthcare workers than I did earlier. I also appreciate the fragility of life a lot better now and perhaps better understand what living in the moment means.
This post is to share my experience through this nine-year journey of being in and out of hospitals. A medical incident & resulting health care journey invariably involves pain, but I do feel that suffering can be avoided. While reading “When Breath Becomes Air” (an excellent book if you want to understand how to live life & more importantly how to face death), I came across this line which illustrates my mental state nine years back.
Suffering can make us callous to the obvious suffering of another. - Paul Kalanithi
In the initial few years when I was trying to get my mother treated, I was so engrossed with my situation that I was blind to everyone else. This included other patients, healthcare staff, doctors & multiple other caregivers that you interact with during hospitalization. Things were uncertain for a variety of medical reasons, but that was nobody’s fault. It was a life situation where everyone was trying to really help me but unfortunately, I did not see it that way. An extended wait time made me think things that were wrong with the appointment system or that the doctor does not really care. An uncertain answer such as, “we would wait, and watch” made me feel like the care team was incompetent. In summary, things were not looking good and as a result I was ready to blame everyone and everything that I was encountering. I was falling into a trap set by my own thought process, and I was not realizing it.
On the other side of the table, there is compassion paradox faced by physicians & healthcare workers. Challenged every day with difficult decisions, they need to find ways to keep themselves detached from the outcomes while being compassionate to the patient at the same time. It’s easier said than done specially because patient & their family are emotionally involved and demand an emotional involvement from healthcare workers. They want a promise when none can be given.
The nature of healthcare makes these interactions challenging. The fear, anxiety and resulting stress changes our behavior. Healthcare workers despite their knowledge cannot answer every question - both cause great deal of suffering.
So, what can we do to reduce suffering as a patient or patient’s family member. Here are the lessons based on my journey:
1) Don't be alone
Suffering can be an extremely lonely affair. The more you try to handle things alone, the harder it gets. So, find your support systems, apart from friends and family, there are both local and online communities that you can lean upon. Talk to everyone about the challenges you are facing, get their suggestions and make informed decisions.
Apart from healthcare workers, hospital settings have other patients and their families. If you are waiting together for example, try to empathize with other patients & what they are going through. You would realize that you are not alone facing a situation, others are sometimes facing situations harder than yourself. Any kindness & empathy to support someone would also reduce your own suffering.
Finally, healthcare workers while taking care of the patient are people with their own lives that has multiple challenges. They deserve kindness and empathy just like anyone else. While we look at them for answers, do recognize that many times answers are not simple. Extend the kindness & compassion that you deserve to the healthcare workers as well.
2) Maintain a Journal
As days progress, you would go through different situations & emotions. Maintaining a journal for physical & emotional changes daily would help you get a better perspective. Our brain has two different parts one associated with emotions and another with reasoning. The emotional brain is wired for immediate future, and it often overpowers our reasoning/logical brain.
So your emotions would go through the roller coaster during a hospital stay, any unfavorable news would make you more disturbed than needed and vice versa. Keeping a journal & going through it helps you become mindful of what is happening as time passes. It also helps you keep tab of anything else that may be important - a medication, an allergic reaction. The fact that you have it written down in a journal, would lower your own anxiety levels as well.
3) Lean on Your Faith
This may apply to only those who have faith, and by faith I don’t necessarily mean religious faith but faith in the fact that there is a higher power out there. Faith in the inherent goodness of the world & a sense of gratitude for all the love & care that you are receiving.
Faith can be a powerful healer & more importantly faith can provide “hope” in ways that medical science cannot. There are situations demanding tricky decisions – there can be a choice between more aggressive approach that can be painful for the patient without any guarantee that it would work vs palliative care. In such situations, faith when used in a constructive manner can become a pillar of strength. I say constructive manner because faith can also have destructive effect. “Why me?” can be answered very differently in a constructive or destructive mode.
You may ask - how can a patient exercise? I have found that there are creative ways if you think hard enough. Consult your physician before trying anything but "any" exercise helps the patient. These can be breathing exercises to simple movement of arms & legs. It's something worth looking forward to each day - so, encourage exercising and celebrate small achievements.
The same goes for the family members, if your loved one is in the hospital then do yourself a favor by exercising regularly. It would lower your stress levels apart from multiple other benefits.
I had to slowly learn to be mindful and observe my own thoughts to figure out these learnings. As I started seeing how different emotions play a role in decision making, it made me realize the un-necessary suffering that my behavior was causing. A mindful change, and we can change suffering to joy - a smile here, a joke there and suddenly the world would appear brighter.
Pain & suffering has long been analyzed & discussed within the field of medicine. While there has been great deal of progress in managing & curing pain, suffering has remained in background. Medicine tries to look at similarities in pain & evidence-based cure while suffering is rarely similar between two individuals making it more complex to deal with.
If you are Interested in knowing more on how you can help reduce sufferings for your patients or community members, drop me a note. I have a personal goal to minimize this suffering by leveraging AI for hyper personalized conversations that can change a patient's perspective.
Pankaj Kumar is Founder and CEO of Relic Care, building an emotional and spiritual care solution for healthcare providers. In his past life, he had architected & built an eCommerce solution that had over a billion dollar of merchandise transacted. Pankaj had co-founded Ignify, that grew to be a leading ERP, CRM & Ecommerce solution provider that was acquired by Hitachi Solutions.