While it's important to be prepared when it comes to personal health, preparing for every potential illness or medical crisis is impossible.
But, sharing your preferences regarding care options and medical intervention is not only possible, but necessary.
Completing an advance directive form is a great way to write down health care wishes before a medical crisis occurs. These legal documents help loved ones and doctors know what medical treatments a patient does or doesn't want in case they are unable to speak for themselves.
When Aimee Smith's 84-year-old father was hospitalized for an acute health issue, she not only felt the burden of his declining health, but also the burden of making sure he got the care he desired. Luckily, her father's situation improved and he was discharged from the hospital, communicating his wishes along the way. Even still, it was a sharp reminder that things could go differently in the future and gave Smith and her father an opportunity to start the conversation.
Smith's father was admitted to University of Utah Hospital due to complications associated with Myasthenia gravis, a chronic autoimmune disorder that causes weakness in the muscles. Many patients experience muscle weakness in their face and neck, and sometimes in other parts of the body.
"With my dad, where his illness affects a lot of his face, it can sometimes travel down to the lungs and make it harder to breathe," said Smith. "We weren't sure what was happening, or what was going to happen during this hospital visit."
Smith is the youngest of three children but is the only child who lives near her parents. Her mother's health is also in decline, so all of the caregiver responsibility falls on Smith.
"Knowing that both of my parents are getting older, I have tried to broach the subject of a living will or advance directive in the past," said Smith. "It didn't go very well. It's a tricky conversation. I think what's hard to conceptualize as a patient is that there might come a time when you won't be able to verbalize your needs. They don't want to talk about it, and that definitely puts me in a tough situation as a child and caregiver."
When the palliative care team at University of Utah Health came to talk with Smith and her father, she was grateful for the help to start the conversation.
"I was kind of excited about it, because I needed someone outside of the situation to talk us through things," said Smith. "What was helpful was all of the questions they asked. My dad's cognition isn't what it once was, so I was able to interpret the questions and help him understand that this conversation doesn't mean he's dying. It just means we want you to make these decisions while you are able to speak."
Smith's father was able to articulate his desires for medical intervention and get it in writing.
"I think we felt like we had made some emergency plans for if/when a medical crisis occurred with my dad," said Smith. "We got a piece of paper with all of the information, and that was helpful because sometimes my mom is forgetful. Having it all in writing and signed has helped me be certain of what he wants."
Thanks to the advance directive, both Smith and her father have peace of mind.
"At the very least, now I know what he wants," said Smith. "He still struggles with the concept of death, but he now knows he definitely does not want certain medical interventions. Knowing that is huge."
Smith and her husband are starting to work on their own advance directives.
"Every family has a story where everything changes," said Smith. "It's so much easier for your survivors to process it all if they don't have to make every single decision."
Smith continues to care for her parents, along with her two teenage children. And although she is overwhelmed at times, she does her best to honor her parent's boundaries as they age.
"I try to have empathy for where my parents are right now," said Smith. "It's got to feel bad to hear feedback from your kids that they think you're doing it wrong or that you're at risk. That's gotta feel really bad. So, I'm just trying to tread lightly. I try to do what I can."
Why do I need an advance directive?
Everyone over the age of 18 should have an advance directive. Anyone can face an unexpected illness or injury that may render them unable to make health care decisions or speak for themselves. Without an advance directive, it can be much harder for family and loves ones to know what to do.
It's best to get an advance directive in place while you're able to think clearly and before a medical crisis ever happens. U of U Health recommends you review and update your advance directive every year.
How to make an advance directive
Consider your basic beliefs about life and medicine. Talk about your concerns, hopes, and fears with your family. Think about what matters most to you and what quality of life means to you. Common responses often include having family nearby, avoiding invasive life-support, being at home, or getting spiritual support.
Use the Utah Advance Health Care Directive forms to record your wishes. Your provider or social worker can help answer any question you may have.
To learn more, visit the U of U Health Advance Directive website.