No Palliative Care, I Want Her To Get Better And Live

Our last conversation had not gone down well. Here I was again, with a very reluctant and unhappy Jay, waiting for my senior doctor friend to join us.

“Listen,” Jay hardly bothered to conceal his anger. “I can understand if you can’t or you don’t want to pay for mausi’s treatment. But no way am I going to submit her to this palliative nonsense. I don’t want to kill her.”

I took a deep breath but was spared the need to reply because Dr PC chose that moment to walk in.

Jay greeted him politely enough, but I could see it took an effort.

For the next half hour, I remained silent while Jay talked about mausi’s condition. Mausi, an orphan, had joined the family decades ago as a house help. Now that everyone else was gone, Jay was effectively an orphan too. They just had each other.

I knew Dr PC would first listen before he spoke. Sure enough, by now, Jay had opened up and was telling the doctor about the interactions he had had with her right from his young days. It was obvious she meant the world to him.

“Some people,” Jay said, pointedly looking at me, “think that I am trying to make money using her as an excuse. Yes, I don’t have a job and I do not know if and when I will get one. But I am willing to sell every little thing I have. I will beg and borrow. I want her to get better. Just because it is cheap, I do not want to risk her life and give her some—”

“—palliative care?” Dr PC completed Jay’s sentence and smiled at him.

I thought it was time for me to say something, but Dr PC silenced me with a look. Dr PC asked Jay about the treatment options he had discovered as he had spent very many days hopping from hospital to hospital. As Jay narrated his formal and informal interactions with doctors, Dr PC flipped through her papers.

You are doing right

“Given her age and her diagnosis,” Dr PC gently placed the file on the table, “I think you are doing the right thing.” 

Jay was shocked. “But I am not doing anything. At least not yet. Everyone is quoting some exorbitant fees. She has no insurance. Worse, everyone is sure about the charges but no one can give me a guarantee that she would be all right after the treatment.”

Dr PC closed his eyes and looked lost in thought. Silence reigned.

His eyes still closed, Dr PC described the surgery she would need and the risks involved. Then he spoke about mausi’s likely state if she survived the surgery—how much help she would need if and after she returned home.

“Chances are she would need multiple follow-up sessions in the hospital afterwards. Her life would be reduced to hospitals and medicines.” Dr PC opened his eyes and looked at Jay.

Jay was on the verge of tears. It was bad enough that no hospital had given him a guarantee. Clearly, no one had told him about what would happen if and when she left the hospital.

​Dr PC did not wait for Jay to reply.

Are you selfish?

“I may want to do everything possible, try ayurveda, homeopathy, every system possible to ensure my close relative lives. That’s my need, that’s my responsibility. I am also worried about what others would say. That’s me being selfish,” that was a little shocking coming from Dr PC. But he wasn’t done yet.

“I do not think you are selfish, Jay. You would always put what is best for mausi first. Not based on what others may think, but what is best for her, being fully aware of her condition.

“You know, when I was a surgeon, I began by learning how to operate. Then I learnt when to operate. But the biggest lesson was what I learnt last—when not to operate. I am happy there are still a few surgeons who are able to see the larger picture from a more humanitarian perspective. Please listen to them.”

Dr PC continued. “You and your mausi are so lucky that you have no money. Otherwise, you would not be wasting time with people like us. You would have taken her to the best hospital and got her the best treatment your money could buy. Am I right?”

Jay attempted to smile.

“And that is something most of us would do. The younger they are, the closer they are to us, we will want to try everything. We tell them they are brave. We want them to fight. We do not think about in what state the fight would leave them.” Dr PC looked pensively at the glass he held.

“Medical science is fantastic. I am sitting here before you thanks to the power of medicine. But we need to be conscious of reality. Decide the goal of care depending on the patient and the condition, the diagnosis, the prognosis. Nothing like getting back to good health whether an experienced doctor makes it possible or an efficient robot. The thing is we are not robots. We are vulnerable human beings with fragile emotions. We get sick, we die. We must accept the limits of medicine.”

Dr PC told the story of a friend who had passed away recently. “He and his wife had spent more than six decades together, and you know what she regretted the most at the end? That she could not feed him at least one or two spoons of his favourite food before he died. He had managed to gulp down some water even as he struggled to breathe and was then rushed to the hospital. First thing they put on him was the oxygen mask and it never came off for all of the 20 days the tubes kept him alive. The food she had lovingly made stood no chance. Would it have been different if someone had bothered to review the goal of care after a few days, to let her have a say?”

​The missing department

Silence again. Then Jay spoke up in a more mellowed tone.

“In all those hospitals I visited there were departments for everything. It was as if there was a department for every organ and every treatment. But I did not find any department for palliative care. Doesn’t that mean palliative care is not really medical science? Maybe something that is outside the limits of medicine like you just mentioned? Something only supposed to make you feel good. Something like a prayer, perhaps?”

I winced. How would Dr PC react to this?

Dr PC was actually smiling. “So, if at all there is a palliative care department, that is where you go, give up and just die. You think so?”

“Maybe,” Jay did not sound very sure.

Dr PC resettled himself in the chair. “You know, that is exactly what most people think of palliative care, including doctors. It is something cheap and often charitable. Not serious and professional, right? Not of great value.”

Dr PC did not wait for a reply but continued. “Let us talk about mausi for a minute. Is she most comfortable being at home with you?”

​“Yes, of course.” Jay replied. ‘But she complains of pain. Can’t sleep.”

Care that matters

Dr PC reached out and held Jay’s hand. “Suppose you are there with her at home. You give her just enough medicines, what the doctor has prescribed, to keep her pain away. And to help her sleep. You ensure she eats when she can, whatever she can keep down comfortably. You know how she hates to just lie in a corner when there are a thousand things to do at home. So, you let her do a few things that will not harm her but make her feel she has some purpose. Let her know that she will need to cope and compromise and that is perfectly alright. Encourage her to talk. Whatever she wants to tell you. You listen. Sometimes she wants to pray, you told me. So, you make available whatever she needs for the ritual that is important to her, for her time with God.”

Dr PC let go of Jay’s hand and sat back.

“Remember,” Dr PC raised a warning finger, “do not make any false promise at any time. Reassure her that you are there for her.”

Dr PC paused and then asked. “You think you can do all of this?”

Jay nodded.

“When you do all this, you are essentially offering her the essence of palliative care. I know you are not a doctor or a trained in palliative care. But even when you seek help from either of those professionals, you will become their partner in offering the quality of life she deserves. Something that her disease or even some aggressive treatment may deny her. Like I keep saying always think of the goal of our care at this point in time. We must keep revisiting that because things change. She may feel she is fine for days, or she may suddenly deteriorate.”

Dr PC waited until Jay looked up.

Cheap but invaluable

“Now let us talk money. How much do you think this will cost you?”

“Not much,” Jay replied.

“That’s exactly why you are unlikely to see a big board welcoming you to the Palliative Care Department in what you might call a 5-star hospital.”

Dr PC laughed, forcing Jay to join him.

“Not many of us can offer affordable treatment in the conventional sense even if you have insurance. But many of us are already offering palliative care totally free or at a nominal cost.”

Jay looked more at ease. But he was not convinced yet.

“Aren’t we ruling out the possibility of a cure if we opt for palliative care,” he asked.

“Let me repeat," Dr PC sighed. "Examine and understand the patient. What are the possibilities? Then decide the immediate goal of care. The goal of care is something dynamic. Palliative care does not have to wait for curative treatment to be over or to fail. It can ease the painful physical and emotional effects of essential treatment. It could be about making a significant adjustment in the treatment plan that would not compromise the outcome but would enhance comfort. Or it could be about being there to hold a hand and offer support. Or it could be about simply adjusting the pillows. After all, it is about respecting one’s right to a good, peaceful quality of life at any stage of life, during or after treatment.”

Care, be compassionate

I had a sudden brainwave.

“I think we should rename palliative care as compassionate care.” I was waiting for applause from Dr PC, but Jay shot me down.

“If it is care, it must be compassionate. If it is not compassionate, it can’t be care,” Jay declared, very sure of himself.

Dr PC looked at me and laughed. I could only stare at Jay as Dr PC stood up and patted him on the shoulder.

​“Time we left. Mausi has been alone at home for too long.” After a quick handshake with Dr PC, the new Jay led the way.

 

(This is based on real lives and experiences. Thank you Dr M R Rajagopal of Pallium India and Dr Nagesh Simha of Karunashraya for always being ready to educate me about palliative care, which I would rather call compassionate care.)

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This article was originally published on Wrisources.
Image by Gayathri Sharma.