"I admitted Mr. D, a gentleman with moderate to severe dementia last night. He has pneumonia and respiratory failure. I asked Mr. D's family if they wanted 'everything done' including heroic measures, and they said, 'yes.' How frustrating is that? I mean, he's so frail, probably weighs 90 pounds," the hospitalist huffed out a sigh (a hospitalist is a healthcare provider who takes care of a patient when they are admitted into the hospital and then turns the medical care over to the primary care physician when the patient is discharged home).
The hospitalist asked me, "Hey, you're palliative care (read Post 1: What Exactly Does a Palliative Care Specialist Do?). How do you respond when people say, 'Do Everything'?"
"I always respond, 'Of course.'"
The hospitalist gave me a disgruntled look. "You really say that?"
"And then I follow up with, 'For what? Do everything for what?'"
I worked almost ten years as a hospitalist before deciding to practice solely palliative care. Including my overlap years as a hospitalist, I have also worked almost ten years as a palliative care physician. I cannot remember a time when a patient or family member ever responded "no" when asked, "Do you want everything done?"
When a person is feeling sick, nauseated, confused, in pain, short of breath, dizzy, scared or all of the above, why would they refuse any potential care that could relieve them of these awful sensations?
"Can I ask you a question?" I asked the 76 year old woman with severe chronic obstructive pulmonary disease (COPD, a lung disease in which excess inflammation and mucous production causes narrowing of the airways). Ms. N had just been extubated (breathing tube removed) earlier that day. I had been asked to perform a palliative care consultation and to ask about her resuscitation wishes (read Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ). "I see in the chart that you had previously said absolutely no machines, and this time you accepted the ventilator. Have you now changed your mind on this?"
"No, I still don't want machines," Ms. N shook her head, "But I was gasping and feeling like I was suffocating. They asked me if I wanted them to do everything for my respiratory failure. I don't remember much but I do remember thinking, 'Why the hell not? Who would want to go on feeling like this?' I would have accepted anything at that point to get relief. I had already felt like that for hours."
"That makes sense. If the breathing tube was the only option presented to you for shortness of breath, then that makes sense why you had accepted it at the time."
"Yeah," Ms. N replied, "I don't want anyone trying to resuscitate me if my heart stops. But if I'm still alive and I'm feeling like I'm suffocating, do everything you can to make me breathe easier. Is being on machines really the only way? I'm afraid one day they'll intubate me, and I would be stuck with the breathing tube. That's what my pulmonologist is worried about."
"Do you want everything done?" can refer to almost anything, depending on the person interpreting the question. When the healthcare provider asks, they are usually thinking in terms of life prolonging measures - breathing tube, life support machine or ventilator, intravenous or IV life support medications, temporary feeding tube, dialysis, CPR (cardiopulmonary resuscitation) attempts, and other intensive unit level of care measures.
However, when patients respond to the question "Do you want everything done?," they could be responding to anything BUT life prolonging measures.
"Yes, I want everything done to make this shortness of breath go away."
"Yes, I want everything done so I can walk on my own again."
"Yes, I want everything done so I can go back home and die with my dog next to me."
When a patient or family member agrees to healthcare providers doing "everything" for them, they are expecting the best care possible (read Post 7: I Want the Best Care Possible for ME - Part 1 of 2). Sometimes they receive the best care possible but it is not for the same goals as the healthcare providers, resulting in what may seem like the "worst care possible."
"Hey, can you talk to Mr. D's family and find out what they really want," the hospitalist asked me after placing a request for a palliative care consultation.
"Sure," I replied, "I'll follow up with you after I meet with Mr. D's family."
I met with Mr. D's children, and I asked them, "What kind of person is your father?" I learned that Mr. D used to work as a chef at one of the country clubs in town. He was very proud of his work. He retired earlier than he had wanted to ("at age 70!") to take care of his wife with dementia. His wife had passed away five years earlier and that is when family noticed that he was repeating himself and forgetting to take his medications.
Mr. D's older son added, "He probably had mild dementia at the time, but we were so focused on Mom, we may have overlooked it. It either got worse or we noticed it more when he moved in with us after Mom died."
"Currently, what are your goals for your dad? At this point in his life, what does the family think is most important?" I asked.
Mr. D's older son replied, "He's 93. Bring him home! We wouldn't have brought him to the hospital but his internist - I guess you could call him his PCP (primary care physician) - said his oxygen level was too low to keep him at home, so we had no choice (read Post 27: When to Consider Hospice Support - Example #3). Please do everything you can to keep him comfortable and treat the pneumonia so he can return home as quickly as possible."
"When you asked the hospitalist yesterday to 'Do everything,' did you mean also the breathing tube and ventilator if your dad's lungs completely fail?"
"Well, if that's what it takes to get rid of his pneumonia so he can return home..."
I explained, "The antibiotic is what will treat the pneumonia. Sometimes the pneumonia is so severe or the patient is so frail that their lungs may fail before the antibiotic can do its job. At that point, the person may need to be intubated - that is, have the breathing tube placed down their throat - and connected to the ventilator so the ventilator can help their lungs breathe. The hope would be that the ventilator - also called a life support machine - would buy time for the antibiotics to treat the pneumonia. We would hope that the lungs would recover enough to no longer need the ventilator's help to function."
"Yeah, okay, makes sense. That's what we would want," Mr. D's younger son replied.
I nodded in understanding, "And what if he became so sick that despite our best efforts, even his heart stopped. Would he want a natural death and say, 'This is my time. Let my body be'? Or would he say, 'Do CPR (cardiopulmonary resuscitation) - with the compressions and electric paddles to the chest - to try get my heart beating again'?"
Mr. D's children looked at each other and his older son spoke up, "If you could get his heart beating again and off the machines to return home with us, then resuscitation and CPR would be okay."
I paused. "To be honest, if we try our very best medicines, IV life support medications, and ventilator with intense intensive care unit (ICU) level of monitoring, and his heart still stopped working, I don't think we would be able to get the heart beating again. On the very small chance that we could, I don't think he would ever stabilize enough to get off machines, out of the ICU, and ultimately out of the hospital."
"Okay," Mr. D's daughter said matter of factly, "No one has ever explained resuscitation like that before. Dad is very frail. His dementia is severe, and he doesn't even recognize us. I would be worried that if he were connected to machines and his arms strapped down with loud beeping noises everywhere, that he would panic and think he were being tortured. My brother in law said being in the ICU had been awful, and he's young and alert! I think I speak for all of us when I say we would only want the ventilator if the doctors honestly thought it would be temporary. It sounds like Dad returning to my brother's home if he were to survive CPR attempts is next to nil, so it doesn't make any sense to put him through that."
"Yeah," Mr. D's younger son chimed in, "Do everything to get him over this pneumonia and get him home. Intubate him if necessary to buy his lungs time to recover. But don't intubate Dad if you don't think it will make a difference. If getting him back home is not possible, please be honest with us so that we can call all the family in to say their goodbye's. We want to do everything we can to make this comfortable for Dad. The worst thing would be prolonging the inevitable."
I finished my meeting with Mr. D's family, and I relayed the conversation to Mr. D's hospitalist. "Wow," the hospitalist replied, "This makes sense. It would've taken me so long to find out what his kids really wanted (read Post 3: The Secret Sauce in Palliative Care...). Thanks so much for clarifying 'Do Everything.'"
"Sure" I replied, "If you take the time to ask and listen, to find out what is most important for the patient and their family - their goals of care - then you have a better chance of providing them the best care possible for THEM."
"In the case of Ms. N, my lady with the severe COPD who never wanted to be intubated in the first place," the hospitalist commented, "I wouldn't have had time to talk about all this. She was struggling too much to breathe."
"In that situation, you were more pressed for time," I agreed, "Sometimes, you may only have time to make two offers - an offer for intubation as a possible treatment path with a range of realistic probabilities on whether the patient would be able to get off the ventilator, and an offer for a treatment path that doesn't involve machines and instead specific medications such as morphine to ease the sensation of shortness of breath.
The problem is by the time you're seriously considering the need for a ventilator, the patient is likely not completely alert. This is when you would have to have a quick goals of care conversation with the medical power of attorney [read Post 4: Eleven Common Myths about the Medical Power of Attorney (MPOA)]. Ideally, you have this conversation with the patient themself while they are alert enough to think things through. You should assure them that either path they choose, you will focus on relieving their shortness of breath sensation."
"Do everything" is not the only phrase that is misconstrued. The following are commonly used statements by patients that are commonly misunderstood in the medical field.
"I want to live" is a commonly used and misunderstood phrase. When most people say their goal is "to live," they are envisioning living their current life. They are envisioning recovering from a medical crisis and returning to their current level of functioning, activity level, and quality of life.
Healthcare providers often take the statement "I want to live" literally. They frequently interpret this statement as "Do everything you can to keep my body alive, no matter if I can move on my own or think for myself."
Just as all of us should communicate specifically "For what?" when we request healthcare providers to "Do everything," we should also clarify what we mean when we say, "I want to live as long as I can." Examples include, "I want to live as long as I can..."
"...wipe my own bottom."
"...make decisions for myself."
"...exist comfortably in a nursing home where professional aides can clean me and feed me."
Medical treatments can vary significantly depending on a person's definition of quality of life. So if you state, "I want quality over quantity," do not forget to further explain what quality of life looks like to you.
"Quality of life for me is being able to ride my horse."
"Quality of life for me is being able to enjoy a sunset, regardless of my ability to move on my own."
"Quality of life for me is staying in this home until I die."
If you state, "I want to be healthy," explain what "healthy" means to you.
"To me, being healthy is being able to get around on my own."
"To me, being healthy is getting rid of this gnawing pain."
"My mom being healthy is for my mom to not have to go back to the hospital. She comes back delirious every time."
The first step in obtaining the best care possible is defining what is most important to you and communicating these goals. I hope the above behind-the-scenes perspectives among the medical community encourage everyone attempting to navigate our behemoth of a healthcare system to take this first step.