No one deserves Pain

Pain has been declared “The Fifth Vital Sign.” The evaluation of pain has become a requirement of proper patient care, as important and basic as the assessment and management of temperature, blood pressure, respiratory rate, and heart rate. But is pain actually evaluated?

Let me tell you a small, very painful story.

My friend, who lives in the UK, sent me a message seeking help for Ms H. He wrote, ‘She has cancer. Her condition is not good. Can you please help her?’ He shared her contact details with me.

Ms H had been diagnosed with adenocystic carcinoma a few years back. The disease had progressed despite treatment. I dropped her a message. Called her a few times but got no answer. I was told that she is ‘not so much in her senses’ and replies only rarely.

It took me two days to connect with Ms H. Finally she called. ‘Please help me. I am in excruciating pain.’ She started sobbing inconsolably. Her sobs hurt me. I felt her pain through the phone. I felt her pain in my heart. Her plea for help was heartbreaking.

This wonderful lady has been through multiple recurrences for which she has undergone multiple surgeries and treatment! Now the cancer was untreatable! And she was in excruciating pain.

She had been consulting at very renowned hospitals. Sadly, even though these institutions have dedicated Palliative care services she wasn’t referred for Palliative care. Some medicines for pain relief were suggested but it didn’t help her at all. Her sister told me that Ms H was in so much pain that she was taking the prescribed medication every hour and was still crying out in pain. I shudder to think what over-medication must have done to her frail body. Her performance status was very poor, she hadn’t slept in days because of the pain, she was cognitively compromised and weighed only 36kg. To summarise, Ms H was actively dying. She and her family had no Palliative support! Her sister didn’t even know that Ms H was dying. I had to break the bad news to her!

The family, being financially vulnerable, had exhausted most of their savings. Her sister spoke to me. She broke down too. “She cries in pain throughout the day. We don’t know what to do. Please help her!”

I promised to do all that I could. The first step was to get her pain relief.

That’s when I reached out to an NGO that provides home palliative support. A home visit was made the next day. But again I faced another obstacle. Ms H was still not prescribed Morphine. She was advised around the clock pain medication. This only added to her Total Pain. I called her sister who said “Ma’am, there are so many pills. We can’t remember what to give. Please reduce the number of pills down.”

The physical pain Ms H was under was still not controlled. I had to reach out to a few Palliative care friends to push for morphine.

Morphine helped a lot. Ms H not only slept but her pain was under control too. However, this relief lasted for only ONE day! She died 2 days later! She made one last call to the doctor pleading for more pain relief. And then she died…

I have forgotten how many calls I have made to help facilitate this. My mind now feels numb. Her plea was so heart-rendering that I couldn’t sleep at night. I am still haunted by her painful request!

The questions I leave you all with are –

1. If access to pain relief is so difficult in a metropolitan city what happens to those who live in rural India ?

2. Why timely referrals are not made for Palliative care even in hospitals which have a dedicated pall care team?

3. What prevents the treating team from integrating pall care into the main treatment plan?

4. Why can’t we collectively work to give wonderful people like Ms H a dignified end?

5. Did she deserve to die like this?

Echoing the sentiments of Ann Richardson, ‘We cannot change the outcome, but we can affect the journey’.

Ms H deserved better!

About the Author:

Ms Vandana Mahajan is a Palliative care counsellor with over ten years’ experience in counselling and providing psychological support to cancer patients and their families.