"My grandpa can tell me what he wants to eat for breakfast. I wouldn't trust him to buy a house on his own."
Many times we have a sense of how much our loved ones understand a situation. We have a sense of the day to day decisions we would respectfully defer to them, and the major decisions we would feel uncomfortable with their making on their own.
Sometimes I see family members ignore that sense when confronted with a potentially life altering medical question, such as when a physician asks their loved one, "What are your resuscitation wishes (Read Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ)?"
"Don't look at me, Grandpa, it's your decision."
Mr. D is a 91 year old gentleman who lives with his grandson, Ian. Mr. D used to love to cook and sometimes wanders into the kitchen. Ian had to remove the knobs from the stove after his grandfather left the fire on two times. Ian lays out his clothes because Mr. D becomes confused picking out his outfits, sometimes attempting to pull boxers up over his pants. "He asked me again this morning what was for breakfast, and I reminded him that he just ate scrambled eggs and cereal."
In clinic, Mr. D is asked, "If you became sick and confused one day, who would you trust to speak with the doctors and make decisions for how your body should be treated until your mind cleared up [Read Post 4: Eleven Common Myths About the Medical Power of Attorney (MPOA)]?"
Mr. D points to Ian. "He's got my back. I trust him. He's my son."
"Your grandson. I'm your grandson. I'm Ian."
"Oh? That's right. I trust Ian."
Is Mr. D of "sound mind?" Does he have "medical decision making capacity," which means does he have the mental ability to fully understand a situation and make a medical decision on his own that makes sense?
A person's capacity to make a medical decision, similarly to any type of decision, is based on four simple questions:
1. Can the person paraphrase the medical question to demonstrate understanding?
"You're asking me who I trust?" versus
"Sure, I want to be resuscitated. I fell down on the sidewalk once, and I was down for what seemed like hours. A dog came by and barked and barked and made such as ruckus that a neighbor came out to check on me. I haven't seen that dog around in a while. If you find it, I want that dog at all my resuscitations..."
Sometimes a person rambles or becomes easily distracted. In these instances, redirecting the person or rewording the question may be necessary. If after repeated attempts, the person still cannot clearly paraphrase the medical question, then the person is not clearly demonstrating that they fully understand the question.
2. Can the person paraphrase all treatment and non-treatment options with potential benefits and risks for each option?
"I don't want a stranger making decisions for me. I trust my grandson. He knows me." versus
"I don't understand what you're saying and I don't care to. Bring me back, and don't let me die no matter what! You take care of the details. I'm going to dance until I'm 101! And if a day comes when I can't boogie? Game over, I'm outta here."
If a person rambles or goes off on tangents, they may require redirecting. If they are forgetful or easily distracted, they may require explanations to be repeated, reworded, or shortened. If the person still cannot clearly paraphrase the true potential benefits, true potential burdens, and true potential risks of a medical treatment, then the person is not clearly demonstrating that they fully understand how choosing or declining a medical treatment could significantly affect their life.
3. Is the person's medical decision consistent with their values and priorities? Does the decision make sense based on their values and priorities?
"I'll sign that piece of paper if it'll help out Ian. He takes good care of me. I want everyone to know Ian can speak for me." versus
"I want to be resuscitated no matter what. Give me a chance. I'm a fighter. I'm not going to just lie there on a hospital bed, waiting for someone to wipe my butt. Or not even knowing if I need my butt wiped! That happened to my brother. I never want to get that way."
In the United States, a person has the right to make "bad decisions," or decisions we would not agree with (as long as the decisions are not related to active physical harm such as suicide or homicide or threats to public safety). A person has the right to decide whether they will take their blood pressure medication or not. A person has the right to decide whether they will smoke a pack a day or not.
A person's decision may not make sense to another person because they both have differing values and priorities (Read Post 7: I Want the Best Care Possible for ME - Part 1 of 2). An 18 year old healthy man may decide he would want resuscitation attempts if his heart were to suddenly stop. "My uncle suddenly collapsed while running a marathon. I might have an underlying heart condition. But I'm otherwise healthy. I think I have a good chance of regaining my independence if I had to be resuscitated." An 80 year old bedbound man with end stage Parkinson's disease, requiring assistance with dressing, eating, and keeping himself clean, may decide he would not want resuscitation attempts if his heart were to suddenly stop. "I'm tired. When it's my time, it's my time. Let me go."
As long as a person's decision makes sense according to their OWN values and priorities, even if family members and healthcare providers disagree with this decision, then that person has capacity to make that particular decision.
"I don't want chemotherapy because I saw my brother suffer through that. I'm okay if I can live another good six months." versus
"I don't want chemotherapy because my neighbor breaks into the cancer center every morning. He injects rat poison into all my chemotherapy bags."
4. Is the medical decision consistent with repeated questioning?
"It's still Ian. He's still the one I trust." versus
"I don't know. Sometimes I think I wouldn't ever want to be on machines. Sometimes I think I would want machines and then let Ian decide what to do if I couldn't get off the machines."
A person should be consistent with their response and reasoning over the course of that conversation and on follow up conversations. If they are inconsistent with their responses, then they are not capable at that time of making a definitive decision about their medical treatment.
"He wanted the knee surgery six months ago, but changed his mind in preop! He's been flip flopping since, just saying that he's not sure. Today he's saying he wants surgery. I'm holding off on scheduling him. I'll see what he says in three months."
A person is allowed to change their minds due to a change in their beliefs, values, priorities, day to day physical abilities, or health condition. The change in decision making should be deliberate and still make sense according to the person's current values and priorities.
"He declined knee surgery for the past year because he could still get around the house while taking pain medication once a day for knee pain. Now he's taking pain medication four times a day and his knee is buckling. He wants to undergo knee surgery because he wants to be able to walk around the house and yard again without worrying about falling."
A person can have capacity to make simple decisions, such as whom they trust to speak with physicians on their behalf, while at the same time not having capacity to make complex decisions, such as weighing the potential burdens, risks, and benefits of a big surgery. This is akin to saying, "I trust my mom to work the TV remote and choose the show she wants to watch. But I wouldn't trust her ability to drive to a concert, navigate parking, purchase tickets at the box office, and find her seat in a crowded amphitheater on her own."
In the above scenario, Mr. D with moderate dementia is of "sound mind" to make simple medical decisions, such as naming whom he trusts. In the future, as his dementia progresses, he may lose this capacity.
In the above scenario, Mr. D is not of "sound mind" to make complex medical decisions, such as those involving resuscitation. He does not have the capacity to paraphrase details, demonstrate full understanding, and make decisions about big picture issues. Mr. D could potentially have a "good day" in the future and be able to understand and respond thoughtfully to the resuscitation question at that time. People with dementia and other serious illnesses can have "good days" when they have more mental capabilities and "bad days" when they are struggling with memory, attention, and comprehension.
Even a normally healthy person could lack capacity to understand and respond to a particular question one day, then regain capacity to answer that question on another day. A person may be delirious from a severe infection on Monday and may not be aware of their surroundings. After antibiotics and time to treat the infection, the person's delirium may clear and they may become alert and mentally clear by Wednesday.
A person's medical decision making capacity is dependent on the time, the situation, and the complexity of the question.
Capacity is different from competency. Only a judge in a court, with evidence provided by healthcare providers, can determine that a person is legally incompetent. A person with general incompetency, such as a person in a persistent vegetative state or a person with severe intellectual disability, is unable to make decisions for themselves in a permanent manner.
A judge is not required to declare if a person has capacity to answer a particular medical question. When physicians, nurse practitioners, and physician assistants of any specialty examine a person to determine the person's capacity to answer a particular medical question, they are essentially asking the above four questions and listening carefully to the person's responses.
If there is uncertainty regarding a person's medical decision making capacity, such as if a person also has severe depression that may be impacting their ability to make medical decisions, healthcare providers may obtain a psychiatry consult to determine capacity.
If you yourself are wondering if your loved one is of "sound mind" enough to make a medical decision for themselves, especially a difficult decision, ask your loved one the above four questions. Even if your loved one is alert, jovial, and speaking in complete sentences, you may realize that you will have to make the difficult decisions for your loved one after all (read Post 20: How Do You Make Medical Decisions For Someone Other Than Yourself? - Five Common Methods).