Where There is a Will, Respect It!

Life really goes a full circle. We are born as babies, then we grow up and walk. We walk through our entire life and then we are babies again, just this time bigger and wrinkled.

This is a story of 2 dads who I happened to take care at the same time. I will call them Mr. Leon and Mr. Stevens. (I will use fake names and will alter the illnesses to protect their privacy)

Mr. Leon is a dad of a 42 yrs old daughter Myra who also has a 10-month-old infant. He had oropharyngeal cancer and a history of stroke that changed his life overnight. The stroke left half of his body paralyzed. Moreover, he had a contagious infection that could be very harmful to the people taking care of him. Despite this, the daughter took care of him religiously. Having lived like this for a couple of years with numerous hospital and Nursing Home stays, Mr. Leon was at the end of his patience and was desperate to reach to the end of his sufferings.

Mr. Stevens is a dad of a 45 yrs old daughter. He was up and about until 4 weeks back. He was afflicted with Parkinson’s disease and Alzheimer’s disease which were progressing gradually until 4 weeks back when his condition deteriorated markedly, to an extent that he became bedbound. Mr. Stevens is 4 weeks into this condition and is hopeful that he might get better.

Both of them were awake, alert, and oriented but could not speak clearly. It was very hard to understand what their meaningful mumbles meant. Both of them were unable to eat on their own, Mr. Leon being slightly worse than Mr. Stevens. Both of them needed a nasogastric tube for feeds. Mr. Stevens willfully cooperated and got his NG tube and hence his treatment. Mr. Leon didn’t …

Seldom do we see a bedridden patient like Mr. Leon with all organs functioning? Mr. Leon’s heart, liver, and kidneys were all in good condition. But his hemiplegia and history of oropharyngeal cancer left him debilitated with the inability to eat, move or speak clearly. Over a period of time, he became very frail and weak. He was depressed and tired of his prolonged suffering. He couldn’t get a PEG tube because of suspected perforation and infection. He needed an NG tube at the minimum.

The daughter loved her dad. She was all in tears. She had been taking care of her dad and her infant diligently for many years and was finding it very hard to let go of her dad. She wanted to keep him alive and comfortable. She respected her father’s wish and with a heavy heart, agreed to DNR/DNI. But she still wanted to keep going with the basic measures to keep him alive.

Mr. Leon’s love for his daughter didn’t let him say ‘no’ in her presence and would agree to all sorts of physical exams, blood draws, and medical treatments. One morning her daughter was able to talk him into agreeing to an NG tube as well.

I went to his room, smiled at him, and asked him,’ How are you, Mr. Leon? Now, where is that beautiful smile? He attempted to smile. After explaining the procedure, I started preparing to insert the tube. He looked reluctant. I asked him if it is okay for me to put the tube. He said “No†in his frail mumbles. Then he said. I don’t want this. I am a man of merit. I’d rather be dead than have another tube. I have had enough. It was very hard to decipher his mumbles. But he used all his strength and made gestures with his entire frail body to make me understand what he was saying. It almost made me feel like a butcher with that NG tube in my hand. I kept it on the side and patted his shoulder. I told him, “Mr. Leon, I am with you. I will not do anything to you that you would not like. I will talk to your daughter.“

My other patient, Mr. Stevens willfully swallowed the tube but Mr. Leon was uneasy even at the sight of it.

Both daughters wanted the best for their dads. Mr. Stevens and his daughter’s goals were aligned. They had just been 4 weeks into this situation and were very hopeful to come out of it. It was optimal to do every possible thing for them because the patient wanted it to. He wanted to live and be able to return to his previous functional level!

On the other hand, Mr. Leon was tired of several years of suffering and didn’t want to lead a miserable life anymore. He had lost all hope and wanted to go. But his daughter could not let him go. She was respecting some of his wishes but was trying to compel him to agree to other measures to have a few more days with him. She did not realize that she was just prolonging the suffering of her father. Convincing him of more procedures was hurting his self-esteem and causing him more physical pain. His love for his daughter forced him to say yes but deep down he wanted to be left alone.

It is very important for us to remember that the patient comes first. No matter how much we love someone, true love is loving what our loved ones want, respecting their wishes, and honoring their decisions.

Everybody likes independence. Nobody likes being compelled into doing something they don’t like. And that’s exactly what terminally ill patients want. The best thing we can do to them is agreeing with them and tell them that we are with them in whatever decisions they make. At the end of life, extra few days don’t matter. The quality of time spent does. Spending some time with them, diverting their mind from illness, cracking a joke when eyes are in tears, remembering good times together, and telling each other how much they love matters more. I remember when I told one of my terminally ill patients that his daughter called in to say that she loves him a lot and is on her way, bringing a smile to his face despite his excruciating pain.

Mr. Stevens is still struggling to get his life back while Mr. Leon finally got hospice at home. It is still a happy ending because both of them are getting what they want and not what they are forced into. May God comfort both of them!

-Jaya Sonkar MD MPH
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