Removing the stigma from end-of-life planning

Nobody plans on life-threatening emergencies, but they can happen at any time and leave you too injured or ill to communicate decisions about your medical treatment.

“We talk all the time about monthly budgets and retirement plans,” says Robin Motter-Mast, DO, FAAFP, CPE, Chief of Staff at GBMC HealthCare and the Medical Director of Care Transformation. “We should also be thinking about what our end-of-life plans are. We need to normalize these conversations.”

This isn’t just a discussion for those in the later stages of life, Dr. Motter-Mast says.

“Once you turn 18, you can start making those decisions for yourself. The first step would be to select the person who you want to make decisions for you when you’re unable to make them.”

The second step is figuring out what you want those decisions to be. Some things to think about might start with what is important to you:

• Being free from pain
• Being able to feed one’s self, and avoiding prolonged dependence on artificial or assisted nutrition through feeding tubes
• Avoiding prolonged dependence on machines for things like breathing and kidney function
• Dying at home

There are many online resources, such as My Directives or this site from the Maryland Attorney General, that can help you fill out a complete end-of-life care plan. Once you’ve made a plan, Dr. Motter-Mast encourages reviewing and updating that plan every year to ensure your preferences are still valid.

“When you’re perfectly healthy you might want one thing, but your preferences may look a little different when you’re approaching 90,” she explains.

She also encourages people to have a backup in case the original decision maker is unable to carry out your preferences.

“What if you have your significant other listed, and you’re both in a car accident? If there’s not someone else named, those decisions can fall to the closest relative, which might not be who you want making those choices for you.”

Having a clear plan makes it easier on whomever must implement those choices, Dr. Motter-Mast says.

“It’s going to be stressful for someone to make decisions for you, especially when they have their own internal thoughts and emotions about what they want for themselves. Even with a plan, it still might be hard for them, but at least they know they’re doing what you want.”

Some living wills include end-of-life planning, but Dr. Motter-Mast says an advanced care plan should hold its own significance.

“The problem with wills is they live somewhere, often in a safe deposit box, and no one has access to it, and by the time they find the document, too much time has passed,” Dr. Motter-Mast says. “An advanced care directive is a legal paper that doesn’t have to go through a lawyer, and the most recent document will take precedence when the time comes that it’s needed.”

Dr. Motter-Mast recommends talking with your primary care physician at your next visit if you don’t have an end-of-life plan already in place.

“It shouldn't be scary. It should be something that we talk about, and it should be a normal conversation that we have.”