Post 59: Medical Decision Making 201
Updated: Nov 3, 2022
Have you ever made decisions "in the heat of the moment" and later shook your head asking yourself, "What was I thinking?"
"Normally I wouldn't buy that, but at the time the Costco sample tasted so good and I was so hungry. I can't believe I bought two!"
"As a rule I wouldn't talk to my coworker like that, but I was so angry by what they implied about my work ethic, I sent off that email. If I had waited another day, I would have used different wording."
One of the main purposes of the palliative care specialist (read Post 1: What Exactly Does a Palliative Care Specialist Do?) is to guide patients and family members through their medical
decision making during times when they feel lost or overwhelmed, when things are not going well in the hospital, or when health and strength worsen despite best efforts to become stronger. This post is about a facet of decision making behavior called the "hot-cold empathy gap" as described by George Loewenstein, one of the first economists to blend economics and psychology who produced much research about what drives our decision making. He also wrote of the "hot-cold empathy gap" in medical decision making.*
It is difficult to accurately predict how we ourselves might make decisions - let alone how someone else such as a medical power of attorney may make decisions on our behalf [read Post 4: Eleven Common Myths about the Medical Power of Attorney (MPOA)] - when we do not take into account the state we might be in during that future moment when we are actually making decisions. When we are calm and unaffected, feeling unbothered and unrushed - that is, in a "cold state" - we are able to deliberate keeping future goals in mind and make decisions keeping long term consequences in mind. We assume that we will make decisions in line with the decisions we made while in this "cold state" even in the face of distressing news.
However, when we are in a "hot state," our visceral needs and emotions such as thirst, hunger, pain, panic, fear, anger, or anxiety temporarily alter our values and priorities at that moment, causing us to make decisions driven by our short term state as if we are temporarily a different person altogether (business marketers, promoters, and advertisers may use this concept to strategize increased impulse buys from consumers).
"I had promised my wife she would never be on machines, and I intended to keep that promise! But when the doctors said her lungs were failing, I panicked and told them to keep her alive. I told them to put the breathing tube in. Now she's stuck with this tube. What do I do?"
To me, this "hot state" sounds similar to the gut reactions we have in response to life altering, distressing, or scary situations involving our (or our loved one's) health, when we make decisions from a place of fear, panic, anxiety, anger, or denial.
"It looks like the biopsy showed cancer. It's a slow growing cancer, and we can monitor -"
"How do we get it out? I just want to get it out."
"My son is in pain. There's something wrong with his belly! You have to take care of him now!"
"Sir, we have a breathing emergency we're taking care of now -"
"I don't care! If someone doesn't see him now, I'll sue you, the nurse, the doctor, everyone in the ER!"
In another post (see Post 16: Medical Decision Making 101), I talk about making medical decisions weighing realistic benefits against realistic risks and burdens and acknowledging that the benefit to burden ratio may change over time as a person's medical or health situation changes.
"This is my wife. Two years ago, her dementia was mild, and she was still working in her garden. We thought it would be worthwhile to start dialysis. Even if it made her tired on dialysis days, she was like her normal self on non-dialysis days. Now, dialysis causes nothing but suffering. Her dementia is advanced, so she gets very anxious with dialysis. She doesn't understand why I have to sometimes hold her in place. Every day, dialysis or no dialysis, she's in bed and moaning. She doesn't talk anymore; she just moans. The kidney doctor told me she would live about a week if we let go of dialysis. All I know is she can't go on like this."
These decisions we make deliberately weighing benefits against risks and burdens, mindful of longer term consequences, are those we make while in a "cold state." With the husband above, after his initial "hot state" of denial and fear of losing his wife, he was able to gather information and weigh possibilities and look at the reality of the situation over time as his "hot state" cooled. In a way, it is as he said - "I know the decision I need to make in my head. I just need to make it in my heart too."
Palliative care specialists encourage people to make decisions in this "cooler" state, taking the time to deliberate achievable goals of care, that is those goals that healthcare providers think they can realistically make happen, together with the patient and family (read Post 54: Why Should I Care about My "Goals of Care?"). They spend a large part of their patient and family conversations acknowledging strong emotions before even attempting to talk about next steps (read Post 17: How to Discuss Serious, Difficult, Hard to Hear Bad News in Six Steps). Otherwise, patients or family members may later say, "I was stunned. I don't remember hearing anything after she said, 'dementia'" or "I was so overwhelmed by what I was feeling. I just said, 'yes,' to everything."
When we articulate our goals of care, values, and priorities while in a "cold state," we assume that we will always make decisions in line with these big picture goals and we expect our medical power of attorney loved one to do so as well. However, according to Dr. Loewenstein, our predictions are often wrong and we often make decisions much differently while in a "hot state," specifically decisions based not on big picture goals but rather on the need to relieve our immediate visceral emotions. Sometimes we question or even regret these decisions after "cooling down."
So what can we do to close this "hot-cold empathy gap?" What can we do to increase the chances that we make decisions in line with big picture goals even during times of medical upheaval? Dr. Loewenstein suggested the following:
1. If in a hot state, try to wait as long as possible (for your "hot state" to "cool off") before making major medical decisions. "I can understand why you feel anxious when your blood pressure is over 160, especially since you're worried about having a stroke. Remember, make sure you've been seated and calm for ten minutes before checking. If the number alarms you and you are not having any symptoms, it is okay to rest and check again in an hour. If you have any concerns, you can always call my office. If you are not having any of the symptoms we talked about, you don't need to call 911. Just call my office. Remember, you've already been to the ER twice this week, and each time, your blood pressure lowered on its own and you didn't have a stroke."
2. If making decisions in a cold state with expectations that these decisions will be upheld in the future, imagine first yourself (or your loved one) being profoundly affected by a potential state or strong emotion and then imagine what decisions you (or your loved one) would actually make in that state and plan accordingly. "My sister-in-law panicked and told the paramedics to ignore his DNR paper and do CPR on my brother, even though he's always said he wouldn't want to die twice. Well, he died four times. They resuscitated him at home, and then he had three more cardiac arrests in the hospital. They finally let him be after the third time his heart stopped. I don't want to go through something like that. I have my DNR form signed too, but now I worry what my wife will decide when it comes time. I can imagine her panicking. Maybe we all would if we never talked about it. I'm going to remind her every so often that I want to be let go, that it's okay and that I want a natural death and no CPR. Perhaps if we talk about it routinely, she won't panic when the time comes. I'll ask her to imagine showing the paramedics my Out of Hospital DNR form and asking them to honor it (read Post 6: Who Do I Tell if My Mom Does Not Want Resuscitation Attempts? - A Three Step Process). I really don't want to go through what my brother was put through."
Major healthcare decisions are made at various stages of our health. I hope being aware of the hot-cold empathy gap better enables us (and our loved ones) to make decisions most likely to help us achieve what is most important to us in the long run.
* Loewenstein, G. Hot-Cold Empathy Gaps and Medical Decision Making. Health Psychology. 2005. Vol. 24. No. 4(Suppl), S49-S56.