The health of an individual goes beyond the journey of symptoms, diagnosis, treatment and recovery phase. The support and information provided by healthcare professionals and hospital/ clinics is key to helping patients and their families navigate these stages. Lata highlights her experience while playing the role of a caregiver in her father-in-law’s brief journey with lung cancer.
My father-in-law was a man with no chronic conditions, despite being a chronic smoker for 69 years. He quit during lockdown. Compared to my mother-in-law who was always prone to illness (COPD, fractures etc.) my father-in-law wasn’t taking a single medication even at the age of 89. In January 2021, just before the second wave of Covid, my husband and I took the opportunity to travel abroad, to meet our child.
Initial Symptoms
One day my father-in-law complained to us on the phone about a bad cough. Several things came into play at this point: was it his Smoker’s cough or any other serious issue. My mother-in-law took him to see her Pulmonologist at a multi-specialty hospital near their house. By then, mild fever and blood in sputum had come by. On consulting the Chest specialist, he was told this could be a) just an infection to be treated by antibiotics, b) TB or c) cancer. The decision was made to tackle this one at a time. He was first prescribed antibiotics. He got better and we dismissed this as a mere infection.
The following month, we were back from our trip and so were his symptoms. Recurrent cough with blood in sputum warranted further testing. The pulmonologist this time prescribed tests for investigation. TB was negative, but the X-ray revealed something abnormal yet inconclusive. A CT scan was ordered. While the symptoms were not that severe and got treated, considering his smoking history I was expecting a more timely and cautious investigation.
Due to my background in pharmacy, I was always the one responsible for medical related work for the family. When I went to pick up his CT report, the doctor pulled me into his room and revealed the diagnosis. It was Lung Cancer and required a PET scan to determine metastasis. When I went home, my husband and I sat down and broke the news to my father-in-law. He took it well, never revealed his inner feelings and was compliant with the rest of the tests and possibility of treatments. He must have thought it so ironic, that a year ago, he had in fact forcibly quit cigarettes due to the lockdown.
Palliative Care
Following the pending tests (PET, Biopsy, NGS), it was clear that the cancer had spread and his doctor told us that palliative care was our only option. This was first week of April 2021. We decided to manage my father-in-law’s situation at home as we looked for palliative care options. We hired a carer to take care of him. Around the same time, my husband got diagnosed with Covid and was admitted to the ICU. I was also Covid positive and I had to keep myself isolated from my in-laws. My attention was now solely diverted to my husband’s situation as his condition worsened.
Around this time, my father-in-law’s health deteriorated as his food intake diminished. He had slowly stopped eating and in a way accelerated his poor health. He was surviving on rice water and had become severely weak. There was nothing we could do; circumstances were beyond us. He passed away silently by the 3rd week of April. Neither my husband or I could even attend his funeral. In fact, my husband only found out about his passing a month later when he came out of the ICU.
Challenges faced by patient and their family
Looking back, as the primary carer, I came to realize the fallacies of our healthcare system. I wanted to share this story in part to talk about how the system treats us. Here are a few of my notes on that.
At the time of the diagnosis, the doctor left the responsibility of breaking the news to the patient, to me and my husband. Secondly, I was given to understand a bit about the type of cancers – Non-Small cell vs Small cell Lung cancer, but was hoping to be given some more details on the differences, symptoms, what to expect as the disease progresses and possible prognosis. Unfortunately we had to resort to the internet to understand the details in the limited time I had from caring and managing his case.
The diagnostic tests were prescribed with no explanation of why we needed them. I am still not sure why the X-rays did not reveal any conclusive result and why the findings actually suggested a CT scan. Again, no detailed explanation was provided on what the CT scan report meant and why specifically there was a need of a biopsy followed by a PET scan. For a lay person, this is all too much to understand, we are meant to blindly follow the doctor’s orders. Explanation of tests and reports need to become part of any consult.
The process of testing also was not very smooth. Despite being in the same hospital, the biopsy took endlessly long – needing an overnight stay and due to the delay, the patient was kept starving for almost a whole day. The PET scan too was very process focused with no empathy for patient needs – felt like a robot with no human touch. What took most of my effort in the whole process was the advance payment needed for the testing. Only when there were complications during the PET process, my father-in-law was given the right care and attention.
Post biopsy and PET scan, discussing the findings with the Oncologist almost made me feel I was unnecessarily taking too much of their time. Covid times made it very difficult for personal visits, even then WhatsApp messages were not a given. Was told to message only if there was an emergency. Left to me to figure out what indeed was an emergency!!
PET results were not very encouraging and hence suggestion was palliative care. Again, we felt we were left in the lurch to find out how to manage this. No contacts were provided. Neither any advice on how to manage the patient and any complications at home – gastrointestinal issues for example.
So, here are my learnings from the above experience:
- Watch out for any worrying symptoms. Do not expect any of the symptoms to go away on their own and see a doctor on time.
- Get all the facts and investigations done as advised.
- Seek clarifications on reports and do not hesitate to ask even the simplest of questions to understand the diagnosis and help manage a situation and rightly communicate on medication and treatment.
- As a carer to a older person you need to watch out for symptoms and ask appropriate questions as you are not experiencing any of it yourself and then ensure you have the appropriate solution to make the individual as comfortable as possible more so during palliative care.
- Most importantly ensure you ALSO have some time to take care of yourself.
