What do you need?

What do you need?

This morning, as soon as I arrived at the Palliative Care Ward, I was ushered inside and informed that things were hectic. There were a large number of cancer patients and one in particular needed attention. A soon-to-be 69-year-old gentleman with metastatic lung cancer was unable to accept his diagnosis. The attending physician had left a note in his file asking our team to help support him.

I was informed that he was one of 12 siblings, two of whom had passed away, one only two weeks prior.

Upon entering the bright, newly renovated, private room, the head of palliative nursing and I gently greeted him and his family, introduced ourselves, and asked permission to visit. He acknowledged us and agreed to our presence. When asked how he was doing, he said he was fine, but very tired, and the site of his recent lung drainage was sore. After a bit of chit chat he told me about his work life which seemed to be the biggest part of his identity. I asked what had brought him to the hospital. He told me that he had fluid on his lungs and needed to be operated on. I asked what was discovered during the operation. He said that there was a growth.

“What kind of growth was it? Do you know?”

“No, I do not, it’s a growth, just a growth…” he replied. I knew he knew that he had cancer and it was evident that he was not about to accept that fact, nor was he able to talk about it.

Without missing a beat, my nurse buddy quietly asked the family to leave with her and to let me be alone with him, so we could really talk.

“I see, so how are you then knowing you have a growth?”

“Indifferent…”

“Wow, how do you do that, most people would be very worried. You seem so brave!”

“No, I am not good at talking.”

“Oh, you seem really good to me”, I said with a big smile. He laughed in return.

We chatted about his moving rooms from the main ward to a private one and how he now sleeps much better and likes it a lot more.

“I have a question” I said and waited.

He shook his head for me to proceed.

“Suppose, and this is just supposing, what if you found out the growth was cancer, what would you feel?”

“I wouldn’t!”

“Would you want to know?”

“No, I would not! But I think my brothers and sisters know already!”

“Oh, okay, so they most likely know what your diagnosis is. You are alright with that?”

“Yes! They chose to move me into this room. They are looking after me.”

“It sounds like they really care for you and you feel you are in good hands. Many patients want to know what is up with them, so they can make their own choices. My job is to make sure you get what you want. What do you want? Do you want me to ask the doctor to tell you your diagnosis, or do you want your family to know and make choices for you?”

“I want my family to make choices!”

“That’s fine. Why do you not want to know or make choices?”

“Because it makes me worried and uncomfortable.”

“And it helps you to rest and relax knowing that your family will take care of you and make choices for you. What if the news, and this is just supposing again, was that there was cancer and it was possibly untreatable? Would that change things. Would you be afraid.”

“No, I cannot change what is, if that’s the case. I would like to be here, comfortable, and to have my family care for me.” He said as if gesturing that his family was surrounding him. He went on to say that he was not comfortable at home as it was hot and noisy.

“Okay, please help me. If I understand you correctly, you do not want to know about your sickness in detail. You want your family to do what they are doing, and you are peaceful in regard to any outcomes? Is that correct? You must tell me if I am wrong as I only want to make sure you get what you need. It’s my job to help you get what you need, if I can. Is this what you want?” I asked.

“Yes, that’s right! I liked being a driver, it was easy, simple. When the day was done, I’d come home and rest.” he said and smiled. I could see that while seemingly random and off topic, that he viewed quality of life as being an extension of his work life and the simple rest that came with it was of utmost importance to him.

“So, right now, the thing you want it seems is to rest and be comfortable, so we’ll help you rest. We’ll inform your family and they will make choices for you, unless you decide to change that! Is that a good idea?”

“Yes, they are good to me. If they say do this or that, I’ll do what they say! That’s what I want!”

“Right then, what about me, can I visit you again and see how you are?”

“Oh yes, you have beautiful eyes….” he said with a chuckle. I took his hand in mine and thanked him.

A moment later my nurse buddy came back and joined us as the family sat in the waiting room.

“I’ve had a lovely chat with ‘Uncle’, and he said he really likes this room and is happy for his family to make choices for him at this point. He does not want to know too much news. He wants them to choose for him and he wants to be comfortable and rest here for now.” I informed her as he nodded in agreement.

I gave him a kiss and bade him goodbye. He looked more relaxed after our conversation. My wording, really re-wording his own words, in regard to his needs seemed to achieve that.

Later, we sat with his family and told them they were doing a wonderful job as their brother really trusted them and was leaving choices up to them at this point. He was presently alright with even a bad case scenario or outcome. They were teary eyed, but also relieved that at least they were getting it right in his eyes.

For me, empowerment would mean knowing everything and being in on all choices. For “Uncle” it was the opposite. A patient has the right to have all information given to him or her, and in this case, the patient has the right to not know until he is ready, if he ever is! Honoring his wishes is the beginning of helping him hopefully trust our team so that we can continue to articulate and act upon his further needs as they arise during his journey with terminal illness. Most of all, I pray that by allowing him to lead us, he can feel at peace and achieve a good quality of life and truly live until he dies!

Susan Dustin “Dusty”  Hattan (Aldous) – An Arsenal of Optimism
© Susan Dustin Hattan (nee Aldous) June 2018