My learnings from Palliative Care – a series: “It’s better that you kill me”

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

What started out as a need to share my learnings and the idea of spreading awareness about palliative care is slowly becoming addictive as I keep getting appreciation and encouragement to write more! Feeling more confident, this time, I have chosen a more challenging subject. Palliative care is all about symptom management, particularly pain, to improve quality of life. In part 2, I did mention that there is a concept of total pain- physical, psychological, social, and spiritual. Yes, you guessed right, I am going to actually start talking first about physical pain.

The first thing I have learnt is that pain is subjective. Everyone has a different threshold of pain and that pain is as much as the person says he or she has. So, no one can else decide how much pain the other person has, and finally, never doubt a person who says they have pain.

After I moved to palliative care, I have begun to think of our patients when I have a severe migraine headache or when I cannot bear the pain of keeping my leg up in the air for a brief time, whilst doing yoga. But, on a far more serious note, I reflect on all that I had done wrong when I did not know about palliative care. I do have a lot of guilt about the way I did not support my aunt in her illness and her suffering. She was single and she literally adopted me, being the mistake –fifth child and all that. Her world revolved around me and she loved me fiercely. She constantly complained about pain. But we doubted that she had pain because all her tests were clear. Perhaps it was not physical pain, but today I know what all our team could have done for her. The saddest part was that, for the longest time before she died, she could not even communicate, as she was mentally not all there and could not even share about her pain any longer. Alas, it’s too late for me to make amends now. Never mind that one of my closest friends tries to pacify me saying that I did my best as per my knowledge and resources at that point in time. Wish it was so simple.

Talking about physical pain, I know now how cancer patients have the maximum amount of pain with pancreatic cancer being one of the most painful. It’s not at all uncommon for patients to tell the doctor, “I can’t bear it anymore, it's better you kill me”. I remember our close friend telling me that the pain was so severe that ‘he feels that all his body parts are just rattling around his body, making it unbearable’. This time, I was working with palliative care and convinced him to register with us. However, in spite of all our pain medication, I felt we had failed him. Primarily, his caregivers, who were not his family members, were not really convinced about palliative care and did not embrace our services in spite of my perseverance.

In both these personal case stories what comes out is the lack of knowledge of the caregivers. So it’s time to give some gyan – “my gems so to speak” :). Some myths which come in the way of managing pain effectively are belief’s like - Its best to avoid especially; strong medicine, one should not take the medication by the clock (at fixed times) as recommended but just respond to the pain levels (skip if it is not paining) because they cause side effects and one develops drug tolerance, one should not take pain medications on an empty stomach, it may cause addiction etc. etc.

I would rather just bust these myths here, rather than go in to details of how palliative care doctors use the WHO pain ladder [1] for pain management. But firstly, it’s important to clarify that palliative care does not promote euthanasia. It does not intend to prolong life or hasten death. To quote Dame Cicely Saunders, the founder of the first modern hospice for terminally ill patients again, the aim is, “to add life to their days, not days to their lives.”

Many of us have learnt that it's best not to take medication, unless you really require it, try to avoid and bear some amount of pain. However, the same principles do not work, especially for cancer pain. Little do the caregivers realize how much pain the patient is going through and also that it's best to give the next dose before the action of the previous dose wears off. In this way, pain medication is usually given on fixed times, (by the clock) and not on-demand, so the patient remains comfortable at all times and does not have to suffer that unbearable pain at all.

Patients with a terminal illness or otherwise, for various reasons, are not in a position to eat their regular amount of food. That is fine, but in our society, we often associate showing our love with feeding and often resort to force-feeding. If, despite all our efforts, if the patient does not eat, we hesitate to give medication appropriately believing that one cannot take the medication on an empty stomach. Thus, they do not comply with the appropriate medication and the patient continues to suffer in pain silently, often not being in a position to talk.

Patients who suffer severe pain, especially in cancer, are often prescribed Morphine, after following the appropriate pain management protocols. But, just hearing the word “Morphine”, makes caregivers weary and they start fearing addiction issues. The fact is that the way the medicine is used for pain relief, the chances of addiction are remote, as trained doctors use careful processes for evaluation, monitoring and review. As far as side effects go, constipation is taken care of with simultaneous prescription of laxatives and most patients can continue their regular routine. Drowsiness, if any, is only for the first few days and finally, it does not cause premature death.

Often we can see the distinct difference in the quality of life of our patients, once the physical pain is managed and the gratitude and blessings that we receive sure helps us to carry on. Part of my role is to measure the impact of our work and I am happy to share that at RPC, we are able to effectively manage pain in most cases. But remember, total pain which I mentioned right in the beginning? There is usually a combination of factors causing the pain. That’s where the role of the counsellor comes in, but let’s leave that for another time.

[1] World Health Organization Analgesic Ladder: https://professionals.wrha.mb.ca/old/professionals/files/PDTip_AnalgesicLadder.pdf

Image source: https://www.painindia.net/cancer-pain/