Post 9: How Terminal is Terminal?
Updated: Jan 5
"I'll eat whatever I want when I'm terminal."
The woman next to him at the dinner party replied, "I'll drink to that. I'm going to eat, drink, and do whatever I want when I'm terminal. Why worry about any of that?"
Both lapsed into a thoughtful silence. "Well, that's enough of that! So, how are your renovations going?"
"Ugh. We're working on plumbing now..."
I commonly hear this casual statement "If I'm ever terminal...," as if "terminal" is easily definable.
What do you consider "terminal?" Is a person terminal if they have been diagnosed with an incurable, life limiting disease, but medications can potentially keep the disease at bay for months or even years? This person could potentially continue working, drive his son to karate lessons, and take a winter ski trip.
Is a person terminal if they are chairbound because an advanced disease or medical illness has taken their stamina and strength? This person could potentially have more weeks or even months of binging on Lucifer on Netflix and sitting at the dining table when her children bring their families over for Sunday Family Lunch with Grandma.
Is a person terminal if they are lying in an ICU bed, breathing with the help of a ventilator and whose circulation is being maintained with two life support medications? This person could potentially stabilize and leave the ICU and eventually the hospital alive.
Many times a "terminal" illness does not look like a terminal illness because science and technology allow physicians to offer numerous medications and procedures to enable a person to live with a disease or illness that would normally result in dying if the disease or illness were to follow its natural course.
Sometimes the more actions a person takes, the more they or their family feel in control of a life changing situation. These actions - going to specialist appointments, attempting a clinical trial drug, accepting procedures, undergoing radiation, asking for another MRI - can make a "terminal" illness feel less "terminal."
A person with "terminal" illness could have an expected prognosis, also known as life expectancy, of hours, days, weeks, months, or even years. Most people would view life differently and behave differently depending on the prognosis, regardless of whether they had a "terminal" illness.
"I paid an attorney a lot of money to get this living will completed. And it's just a conversation starter?!"
The living will contains several questions asking if a person would want to continue life prolonging measures in certain situations, for example if they were in a "terminal" condition.
The problem is this: It is HARD to switch suddenly from "He's critically sick. Find out what's going on and fix it with any necessary medications or procedures!" to "He's critically sick. There are so many things we can try, dialysis, feeding tube, intubation, life support medications, but he's dying. Let's forego all that and focus on comfort."
Frequently the living will is disregarded by the person, family, and healthcare providers, intentionally or unintentionally, because they themselves do not believe they are working with a "terminal" situation (read Post 32: When the Living Will is Not Helpful).
More useful, effective, and protective than a checkmark in a living will is a conversation between the person or family with healthcare providers on what the person's most important values and priorities are for quality of life, also called goals of care (Read Post 8: I Want the Best Care Possible for ME - Part 2 of 2).
These personal values and priorities should drive healthcare decision making, whether or not a person is in a "terminal" condition.
"He is very proud and independent. Being dependent in a nursing home would kill him." If the healthcare teams said they thought eventual independence would be realistically possible, then family could accept all medical treatments and procedures that would help their loved one achieve the goal of independently living at home. If the healthcare teams said living independently was not longer possible, then family could then reconsider medical treatments and procedures that would prolong a life that their loved one would not want to live.
"He believes in the sanctity of life. Even if he were bedbound and not mentally aware, he would want to be kept alive so family could continue seeing him." Knowing these personal values, the family could accept all offered treatments and procedures that would help their loved one maintain their goal of remaining alive, even if it required around-the-clock assistance from medications, machines, and people.
"She's alert and communicating with me. Why does the ICU team keep saying she's terminal?"
I met with the mom - we'll care her Susan - of a 21 year old woman - we'll call her Bae - who had been living with a ventilator attached to a trach tube (breathing tube surgically placed into the throat) for the past four months.
Bae had suffered a severe pneumonia, and multiple other complications, four months prior. She was intubated, meaning the "breathing tube" was placed down her throat, with the expectation that the ventilator support would be temporary.
Two weeks later, Bae's lungs continued to require help from the ventilator so a tracheostomy, a hole surgically made from the front of the neck to the trachea or "windpipe", was performed. Bae was transferred to a nearby long term acute care (LTAC) "rehab" hospital with her trach attached to a ventilator with the expectation that the LTAC staff would be able to wean her off the ventilator within weeks.
Four months later, Bae's homes were the LTAC when she had no acute illness that required a medical procedure and the hospital's pulmonary intensive care unit (ICU) during the days she required a medical procedure. The medical staff in the LTAC and the staff in the hospital's pulmonary ICU had made little progress in weaning Bae off the ventilator, while struggling to control her enlarging bedsores.
It is at the end of this hospital admission for severe pneumonia that I met Bae and Susan. Bae was sitting up in her hospital ICU bed, supported on both sides with thick pillows, flipping through a magazine. Susan and her sister had taken turns staying with Bae for four months because Bae became easily frightened by new people, new sounds, and new environments.
Bae could answer whether she felt pain and which magazine pictures were her favorite. She looked blankly at me when I asked her what she understood about her medical situation, turning to her mother to communicate, make medical decisions, and respond for her. She had already signed her mother as her medical power of attorney (MPOA) a couple months ago [Read Post 4: Eleven Common Myths About the Medical Power of Attorney (MPOA)].
"Can I ask you something? Why does the ICU team keep saying Bae's terminal?" asked Susan, "I mean, look at her. She's awake and she talks to me."
"Yes, she is very alert...I know when people say someone is terminal, a lot of times we think they're talking about a person lying in bed somnolent or not interacting very much."
"Yes! So, why do they keep saying Bae's terminal? What do they mean by that?"
"I think what they are saying is that they don't think Bae could stay alive on her own off the ventilator, which is technically a life support machine. I think what they are saying is that off the ventilator, Bae's lungs would not be able to sustain life for her body and she would die."
I asked Susan, "How do you think Bae is doing? Do you think she is suffering?"
"As long as we're around, she's calm. She becomes anxious with any change, which you know in the hospital, there can be fast movements and loud sounds at any given time. But the bedsores, especially the one on her bottom, are a problem. She might need big surgeries for this in the future, and she would not handle that well. "
"It sounds like Bae is in a really tough position. She needs to change positions more frequently to prevent the bedsores from worsening, or getting another one, and she's limited by the ventilator."
"Yes. I know she's not suffering. She's okay for now. But this is no life. I don't want this for her."
"What do you think Bae would want for quality of life? Looking another four months ahead, what would be quality of life for Bae?"
"I don't think she would understand that question right now. I don't think she really understands the significance of never getting off the ventilator."
"I see. Can I ask you a difficult question?"
"What do you want for Bae? If you knew that the ventilator would remain necessary, pneumonias would occur again, and bedsores would remain a major issue - and I don't know what other problems could pop up weeks from now because the human body isn't made to thrive lying in bed for long periods of time - how do you envision Bae's life will be?"
"Oh God, I need to think about this."
Susan did think about this. She talked to Bae. She talked to her best friend and only other family member, her sister.
Bae was discharged back to the LTAC and returned several weeks later less alert and more agitated from a bloodstream infection that had started from her largest bedsore. She was started on intravenous (IV) antibiotics and life support medications. The pulmonary ICU team and palliative care team had multiple discussions with Susan about Bae's "long term" trajectory, which did not seem long term to Susan.
Susan realized whereas a month prior when she had not considered her daughter to be "terminal" that she now agreed that her daughter was "terminal."
She made a decision based on what she believed would be quality of life for her daughter for the prognosis, or life expectancy, range given by the ICU team (read Post 38: Choosing Where, When, and How a Loved One Dies Takes Knowledge, Action, and Courage).
The next day, Bae was given medications to prevent shortness of breath, she was freed from the ventilator, and she died in the ICU with her mom and her aunt holding her hands.
Sometimes, there is no clear cut picture of "terminal" (read Post 9: How Terminal is Terminal?)
Sometimes, the best a person can do is make decisions most aligned with what matters the most to them with all the information they have at the time.