"It looks like I'll be the one making decisions. The rest of my siblings work, are busy with kids, or live on the other side of the country. They told me they trusted me and to give them updates. So how do I do this?"
A 50 year old bachelor son, Sam, looks bewilderedly at the neurology team and repeats, "You're going to order a feeding tube to be placed today? My mom always said she would never want a feeding tube. Can we just slowly spoon feed her?"
"We evaluated her swallowing ability. The stroke affected her swallowing muscles, and the speech therapist said she was aspirating all consistencies."
"Okay. What does it mean to be aspirating all consistencies?"
"It means no matter what she swallows, liquids or solids, her throat muscles are not coordinated or strong enough to protect her airway. Some of these solids or liquids may go into her airway or lungs rather than the esophagus and stomach. Having foreign particles in the airway increases the risk of lung irritation and pneumonia. We would highly recommend getting the feeding tube placed."
"Oh. That makes sense, but she was pretty clear on how she felt about feeding tubes. Can I think about this? Or can I talk to someone about this?"
"Sure! We can ask the palliative care team to meet with you and talk about what's most important to your mom (read Post 1: What Exactly Does a Palliative Care Specialist Do?). They can help you decide what to do about the feeding tube. Also...they're not hospice. I know some people think palliative care is hospice, but they're different (read Post 2: Five Major Ways Palliative Care Differs from Hospice)."
"Uh, okay. I don't think I've heard of either of them."
"Great! I'll give palliative care a call."
Sam meets with the hospital palliative care team, who explain, "This won't be the only major medical decision you make for your mom. You'll be making a multitude of decisions based on the overall quality of life you're shooting for for your mom. And what you can realistically shoot for depends on what the neurology team says is likely to happen."
Sam nods in understanding.
"So both for this medical decision and future medical decisions, we'll review the five common ways you can make a decision on behalf of your mom."
1. Be your loved one one's voice and act according to their already known wishes.
The best scenario would be one in which a loved one has already explicitly described what is most important to them for quality of life. This would then guide other people as they attempted to make medical decisions for their loved one.
"Mom always said she didn't want a feeding tube, but we never really discussed the context. Like, would a temporary feeding tube be okay? Or, if she could still communicate and be herself in other ways, would a feeding tube be okay? I never even thought to ask."
2. Ask yourself what your loved one would say if they could sit next to you alert and aware for 15 minutes.
People usually do not pause to have an in depth discussion of what is acceptable or unacceptable quality of life for them, especially when they are busy living their day to day lives. Sometimes the best a medical decision maker can do is imagine what their loved one would say. They know their loved one best, moreso than any healthcare provider.
"If Mom were sitting here and truly understanding what the doctors are saying, I think she would tell me, 'Give it a try. The neurology team said I could potentially communicate and talk again. I don't want a long term, possibly even permanent, feeding tube but if nutrition through a hole in my stomach will buy me time to become more aware and work with therapy to try to speak, I would deal with it.'"
3. Act in the best interests of your loved one.
Sometimes a situation is so far out of the realm of imagined possibilities that the medical decision maker says, "I don't know! I don't know what he would say."
In that case, this method, and the following two methods of medical decision making, could be considered. The medical decision maker could make decisions that they think would result in the safest, most comfortable, most respectful living situation for their loved one. They could make decisions that would result in the type of living situation that they prioritize for their loved one, for example whether it be to maximize safety or to maximize independence.
"I don't know what Mom would say, especially since she needs help moving one side of her body. Would being able to talk and eat again be worth it for her if she still had to be dependent to move around? The neurologist said she couldn't really say how much strength Mom would or would not get back, just that she would likely get some back over the next year. I don't know if that would be enough for Mom. But it's enough for me as her son trying to take care of his mom. That possibility is enough for me to say a feeding tube would be a good idea for now."
4. Think about what you yourself would want in a similar situation.
The medical decision maker could ask themselves, "What would I want if it were me?"
"If it were me in that hospital bed, after hearing what the neurology team had to say, that there is a real possibility in getting back some strength and some ability to eat and talk, I know I would want the feeding tube placed. Best case scenario is that I recover from the stroke. Worst case scenario is that I stay dependent on other people to take care of me and that the feeding tube stays in. For me, the best case scenario outweighs the worst case scenario. At least with the worst case scenario, I know my family would still love and support and take care of me. If I had no quality of life, I would hope they wouldn't drag things out... But yeah, I would take the chance for recovery because the neurology team said some is very possible."
5. Think about what most people would want in a similar situation.
The medical decision maker could ask, "What is the reasonable thing to do here? What would most people and most family members do?"
"I know Mom had said she would never want a feeding tube. But knowing what I know now, I'm pretty sure my siblings - and most other family members - would agree that placing the feeding tube for now would be the reasonable thing to do. There's too much uncertainty about the future to not go ahead with this."
Sam reiterates his medical decision, based on method #2, and slowly says, "If Mom were sitting next to me and had heard that the neurologists thought there was a real possibility she would be able to swallow again, even if it were months from now, she would be okay with the feeding tube. I know being independent is very important for Mom. I also know she can adapt to tough times. I know she had said before, 'No feeding tubes,' but I think she would be okay with it in this situation, looking at the big picture."
The palliative care specialist replies, "Sam, you are being such a good advocate for your mom, especially when you are being deliberate with your medical decisions, weighing the potential burden versus the potential benefit of every treatment (read Post 16: Medical Decision Making 101). Keep in mind the big picture and if possible, what you think your mom would say. If you continue to make medical decisions like this, you are doing right by your mom."