Indu Subramanian, MD, a movement disorders neurologist in Los Angeles, shares ways that families and loved ones can prepare for a patient’s advanced Parkinson’s stages, and why these conversations are important to have early on.
Transcript
Oftentimes, we’re waiting for people to really develop a crisis or have to make decisions, or for their family members to make decisions for them while they’re sick in the hospital or unable to still make decisions for themselves. So I think the hope is to really educate and empower people with a sense of the roadmap of Parkinson’s.
Parkinson’s is a motor disease. It also affects things like nonmotor issues and can affect cognition. If it affects cognition, then when we’re asking people about their ability to make decisions—about whether they’d want aggressive life-saving measures or a feeding tube, or things like that—they sometimes, when they get sick and are later in the stages of the disease, are unable to make those decisions or really articulate them in a crisis.
So I think having a way to especially do advance care planning—and understanding what a patient’s goals of care are, which are going to be constantly evolving—is important. Even though we may start talking about these concepts earlier on, it’s helpful to discuss what the trajectory may look like and what clinical issues may come up acutely when people are sick, particularly toward the advanced stages.
Some of these advanced stages could affect any one of us at any time. For example, during the COVID pandemic, many of us were worried about what would happen if we needed life support, needed to be intubated, or had to be put in the ICU. I think some of these conversations have become a little more comfortable for everyone.
I think it’s really about the worry of bringing it up and having a patient or their caregiver feel like, “Why are they bringing this up now?” So routinely bringing it up and having a sense of what I would want if I got really sick, if I needed to be hospitalized, if I couldn’t swallow, or if I needed respiratory support—I think understanding those sorts of issues earlier on is very helpful.
Another thing that’s helpful is understanding that, as people go through the stages of Parkinson’s, they may have issues with independence. As caregiver needs increase, one of the important things is to understand whether a person’s goal is to stay in their home or whether they would be comfortable leaving home and being cared for in an assisted-living facility or somewhere else.
Certainly, at the end of life, would they want to be in a hospital setting, or would the goal be to be at home? Having a sense of all these things is very helpful for us as clinicians so that we can honor the patient’s wishes in advance.
