Written By: Dr Tharin Phenwan, APHN member
Dr Tharin Phenwan, coordinator of the Pal2know project, writes for ehospice about a palliative care patient whose family’s love and concern made it difficult for him to talk about his illness and make his needs and wishes known.
“We’ve got a new consultation from ER, doctor. He’s our old patient,” one of my nurse colleagues told me. She was talking about Mr Yuth, a gentleman in his fifties with advanced stage liver cancer and a massive amount of fluid on his lungs. We quickly browsed through his medical record and met him at the Emergency Room. The man had fallen down earlier this morning and was brought to the hospital by his daughter and son-in-law.
Mr Yuth’s story
There he was, sitting on the bed, looking grim and depressed. His wound was already cleaned and stitched up neatly.
“Good afternoon Mr Yuth, may I ask you what happened today?” I asked.
“He fell down while he was walking in the yard, doc.” Answered Chai, the son-in-law. This surprised me a bit.
From the medical record, the palliative care team had already discussed the diagnosis and prognosis with the family. The daughter and son in law firmly instructed the team not to disclose any information to the patient, convinced that he would “lose the will to live.”
Sadly, in most cases in Thailand, the patients are usually the last one to know about their own illness. This was the case with Mr Yuth.
“Is that so? Is there anything else you want to tell me?” Mr Yuth’s eyes flickered and he looked at me for the first time. It was a good start. We moved him to a more private area inside. I closed the curtain and sat down next to his bed.
“It is so hard to breathe and it hurts so much, doc,” he confided.
“It hurts?”I first thought of the pain in his abdomen, but that was not the case.
“My head hurts,” he said. “There are so many things going on in my life right now.”
“Could you tell me about them?” I asked gently. “If you don’t mind, of course,” I added quickly.
“Well, there is my disease… and also my family, they…” Suddenly the curtained was snapped open by Mr Yuth’s son-in-law.
“He seems fine to us, doc. We have everything under control, me, my wife and also Ma (Mr Yuth’s wife).”
“I’d rather die than live like this”
As soon as Chai started talking, Mr Yuth regressed back to how he had appeared when I first met him, with an empty gaze and an expressionless face. Chai seemed to catch on to the atmosphere and left us alone again.
I talked with Mr Yuth for few more minutes. It turned out that he already knew he had terminal cancer, despise the desperate effort from the family to withhold this vital information. He also stated that his primary doctor was only giving supportive medication, such as vitamins. He also hadn’t initiated talks about advance care planning, and did not tell Mr Yuth about progression and prognosis of his disease, as the family had asked him not to.
“It is so humiliating, doc,” said my patient. “I used to be able to walk around and now I can’t even go to the toilet without help! I’d rather die than live like this!”
“Is that how you feel?” I asked. “To be better off dead?’
“Yes! This life, this… existence…is nothing! I can’t do anything on my own! Not even the god damn breathing!”
He fell silent for some time, lost in thought. Eventually he whispered to me: “To tell you the truth, doc, I didn’t really fall down this morning. I wanted to croak, so I just dropped down onto the concrete floor. To keep living like this is just a burden to others!”
I could see from his medical history that Mr Yuth had multiple problems in this visit. Apart from uncontrolled symptoms, he had existential crises as well.
An overdose of love
He had spent most of his life overseas, sending send his savings back to support the whole family. After he got sick, Mr Yuth came back to live with his family in who, for better or worse, take very good care of him.
And by “very good” I mean that they took care of literally everything. Whether it was his meals, his bath, helping him to the toilet, his doctor’s appointment, his medications… This “overdose” of loving care even extended to his treatment plan; hence the homogenous vote within the family for not telling him about his cancer which came from the previous family meeting with the palliative care team.
They were busy doing things for him without even asking the former patriarch what he really wanted. He was now just a remnant of a man he once was. A shadow, replaced by a grown-up baby who couldn’t even voice his own needs. His autonomy had been reduced by the whole family. I can’t even fathom the suffering he must have been through.
I adjusted his medications to address his physical symptoms, ensuring that his pain and breathlessness would get better if he took these as instructed. We also made sure that the family could contact us through the emergency service line 24/7.
As for his suicidal thoughts, upon further history taking, it emerged that this was actually his second attempt to take his own life, so I consulted with the psychiatrist, hoping that it wouldn’t happen again.
One problem remained, though.
When his wife had rushed back from work and joined us, I took a deep breath and talked with Mr Yuth again.
“Mr Yuth, from what I gather, it seems that you have been through a lot. With your illness, your symptoms, unable to breathe normally, the pain, and also your… issues at home.”
“It must have been very hard for you to live through this. Before all of this happened, you were a totally independent man but not anymore. But I think that you’re very lucky.”
He looked at me incredulously. Has this doctor gone mad? His eyes spoke.
“You are very lucky because you are surrounded by the people who love and support you wholeheartedly. Just imagine about what would happen if you don’t have their help at all?”
“Well… it may have been a lot harder for me, doc. The food, toilet, coming to the hospital, and stuff.” Yuth reflected. His wife wore a faint smile and rubbed his arm lovingly.
“Just take your medications that I prescribed for now, ok? If you are still in pain I can give you some extra meds.” He nodded and asked for one pill right away. The man seemed tired so we let him rest for now.
Another family meeting
I asked all of his relatives to gather in a room and conducted family meeting again. I told them about what I had just heard from their father. Everyone was so shocked about this discovery.
“But we tried everything!!” His daughter exclaimed. “We did everything that we could! But dad won’t even open up to us! I tell him every day repeatedly that we will fight this together!!”
“And what was his response when you said ‘to fight’?” I asked.
She was taken aback by my question, unable to answer. Silence filled the room again since no one really knew what Mr Yuth’s wish was. They were all too busy “doing everything they could”.
“There were times when… when we said that we would fight together. He said that he didn’t want to fight anymore. Just let him go naturally, he said…” his sister recalled.
The daughter was now brimming with tears. His wife and son in law as well.
“I think that your father is a very great man. He endured all of this and kept them all to himself, hoping that one day, just one day, any of you may have noticed what he really wanted. Unfortunately, he may have kept it far too much and too long so that he tried to end it once and for all.”
“Then what can we do, doctor?” The daughter asked, now covered in tears.
“Dad mostly keep things to himself, doc” Chai also remarked. “If he didn’t like someone, he rarely opened himself to them at all. But he opened up to you after just a few minutes talk. How did you do that, doc?”
An ear to listen
I thought for a moment, not sure myself what was it that connected me with him.
“I listened to him, that’s all.”
After the long talk, we went back to Mr Yuth. He was now sitting, not so breathless nor in pain anymore. He smiled and waved at me, surprising the family yet again. They all said that it was the first smile they had seen for as long as any of them could remember.
Just like two sides of a coin, while some patients may have been neglected by their families, some, like Mr Yuth, may receive too much love and care from their loved ones. But is it a justified love? To turn blind eyes from everything, pouring all the love and care so much that it became an overdose? Do we care for a person as they want or as we want?
At the end of the day, the best care one could give may be just an ear to listen, after all.
Mr Yuth’s story is one of the many stories from Pal2Know project. The objectives of the project are to share inspiring stories and knowledge in those who are involved in palliative care in Thailand.
The stories and contents of knowledge are already published as a teaching material free of charge. More stories and practical knowledge will be printed and distributed nationwide later on.
Find out more at pal2know.thaps@gmail.com