My learnings from Palliative Care – a series: “Why me?”

Pouruchisti Wadia is Associate Program Director, Romila Palliative Care at SNEHA

It’s been a long time since my third blog. Ironically it’s because I experienced palliative care first-hand. I am not going to talk about that here, because it is still too raw for me. The World Hospice and Palliative Care Day is around the corner (October 9) and the theme for this year is “Leave no one behind, Equity in access to palliative care “.[1] World over, we will use different mediums for raising awareness about palliative care and the need for it.

The blog series being a part of this endeavor, I felt compelled to write and complete Part Four now. I want to dedicate this blog to spiritual pain because I believe it could get almost as difficult to manage as extremely severe physical pain.

Spiritual pain is a component of the psychosocial factors that contribute to a person's experience of pain. As such, it must be identified and treated.[2]. A patient may report a pain score of 10 (maximum) on a numerical rating scale without having any physical pain at all. No opioids in the world could help! When one gets diagnosed with a life-limiting illness, one’s relationship with God definitely comes in the forefront.

In places where palliative care is more advanced, there are chaplains who are part of the palliative care team to focus on that aspect.

In India, it is usually a part of the counsellor’s role and it becomes even more challenging as we have at least seven major faith groups. At the time of diagnosis, even if the prognosis may be good, the question, “Why me?” is the most natural reaction.

Going back to the film Munnabhai MBBS again, remember when Zaheer who is diagnosed with stomach cancer questions why he was singled out despite his simple life style, when in fact his friends were the ones who drank and smoked etc. He also questions God, because he thinks he has so much unfinished business in this world. At our Centre, we have also had patients of lung cancer who question God’s will when they have always been non-smokers.

Why me? Why is God punishing me? What did I do to deserve this? Life isn’t fair, are all questions that indicate spiritual pain and suffering. There is no correct answer to “Why Me”. The counsellor may in all probability ask the patient, what he or she thinks. Thus giving them better insight into the patient’s thought processes and enabling them to help the patient to come to a stage of acceptance.

Existential questions on the meaning of one’s life and suffering are also common. The counsellor has to tap the patient’s belief system and deal with every patient’s unique spiritual pain. A lot of patients do start questioning their own belief system. Interestingly, we have observed that patients and caregivers who are spiritually inclined are better able to cope with their illness and come to a stage of acceptance.

One of our patients had, in a span of eight years got cancer in different parts of her body at different points in time in her life, before she came to us. Yet she was always smiling and totally in acceptance. Her faith in her God had never waned. She said that she had over the years, several cycles of chemotherapy and yet every time she made it a point to go to church immediately after the chemotherapy, no matter how she was feeling. A literature review undertaken in 2013 [3] on this subject concluded by stating.....

"In conclusion, this literature review highlights the importance of spirituality and religion as strategies for coping with pain. People with chronic pain turn to their religion and spirituality to cope with their condition. Religious or spiritual practices can help in managing pain in several ways."

Part of the counsellor’s role is to screen for spiritual pain and include it in the treatment plan, because, sometimes spiritual aspects can interfere with treatment. A patient may stop taking medications or pursue treatment because they may believe that God has given them the pain and so they are bound to accept and endure it. Once it is clear that the pain is perhaps, also or only spiritual, the team ensures that the alternate remedies like prayer, art, music are included. Our counsellors also suggest reflective practices like journaling, yoga or meditation.

At Romila Palliative Care often this role is also played by volunteers who may, probably being of the same faith as the patient go and pray with them. They also spend time with them doing activities like singing and art. Our support group meetings in the past have also given a lot of focus on discussing spiritual pain and doing activities like art and music therapy.

Finally, like I had mentioned earlier, palliative care not only works to improve quality of life but also towards giving the patient a good death. Providing spiritual support helps the patient be more at peace and helps the person to do all the things that he or she wants to do to get that peace. This includes apologizing, saying their ‘thank yous’ and ‘I love yous’. Restoring poor relationships is also often a part of this package. We once helped a patient to go for the Haj and fulfill this desire with the support of another caregiver.

To conclude on a personal note, working in the field of palliative care has made me more reflective of my own belief systems, or is it because of our constant tryst with death? I wonder.

[1] http://www.thewhpca.org/about

[2] Addressing spiritual pain, Mary T. O’Neil, D.Min., B.C.C.t and Caterina Mako, Th.M.,B.C.C. https://www.chausa.org/publications/health-progress/article/january-february-2011/addressing-spiritual-pain

[3] Spirituality and Religion in Pain and Pain Management Ozden Dedeli, Gulten Kaptan https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4768565/