One of life’s greatest certainties is its uncertainty – that the unexpected, unplanned, and unpredicted may happen and we do the best we can to handle it.
When the unexpected, unplanned, or unpredicted have health implications – whether it’s an accident, a short- or long-term illness, or anything else that can impact everything from mobility and finances to quality of life and overall happiness – the process of handling it can carry profound weight.
While it may seem sometimes that there’s no planning for the unplanned, there actually is and it starts with a conversation.
Today is National Healthcare Decisions Day, a time to highlight the importance of advance care planning and empower individuals in decision making about what they want to happen when the unexpected occurs.
“It’s a way for your voice to be heard in times when maybe you’re not able to speak for yourself or make your wishes known,” explains Harri Brackett, CNS, MS, an assistant professor of internal medicine in the University of Colorado School of Medicine and lead advanced practice nurse in the University of Colorado Palliative Care program. “And these are decisions that aren’t only for emergencies or end-of-life care. If you’re having a complicated medical procedure, for example, it can be very empowering to make decisions about what you want to happen.”
Support for decision making
Brackett and Jeanie Youngwerth, MD, an associate professor of internal medicine and director of palliative care service at the UCHealth University of Colorado and Highlands Ranch hospitals, have worked together in palliative care for almost two decades and have observed that people sometimes don’t know how or where to get started in advance care planning. They offer this support to those wanting to make health care decisions:
1. Think about what matters most to you.
“When you think about your good life, what does that look like?” Brackett says. “What do you value?”
When Brackett partners with patients in palliative care, which is interdisciplinary specialty care for people who have serious illness, she often suggests patients frame their values in terms of three “buckets.”
The first bucket contains what’s important to a person to help with quality of life and with managing pain and symptoms. The second bucket contains what patients value for good communication between themselves, their health care providers, and their loved ones and advocates. The third bucket contains the person’s values and priorities, the things they love, and the things that are important to them and make them the individual that they are.
Considering these areas of care and priorities can help a person make decisions about how they should be balanced in a health care setting.
2. Think about who you want to discuss your values and health care decisions with and possibly ask to be your advocate in health care settings.
“When you select a medical decision maker, it can help you maintain control in times when you otherwise might not have it,” Youngwerth says. “It is a gift to you and your loved ones to have these conversations, so they can hear directly from you what matters most and don’t have to guess. It can help lower stress during serious illness and times when medical decisions are made.”
Youngwerth adds that designating a health care decision maker is especially important in Colorado, a state in which a person’s next of kin is not their default health care decision maker. “If you haven’t selected your medical durable power of attorney and you are not able to speak for yourself, then your health care team will need to gather all interested parties together – people who are interested in making decisions for your health – and then together select who will be the point person to act as your proxy medical decision maker.”
3. Have a conversation.
While these conversations may sometimes feel challenging to initiate, Brackett says, they can start with something as simple as, “I need your help with something.” It’s important to emphasize that these conversations are for any time when the unexpected happens.
“When my boys turned 18, they got an advance directive booklet for their birthday,” Brackett says. “It’s part of adulting and we need to normalize it.”
There are many tools to help people have conversations about their priorities – such as the Go Wish game, the Hello game, and others – as well as resources to support them in understanding and articulating their values, and sharing them with others.
4. Ask your health care provider about how to ensure that your treatment preferences are detailed in your electronic health records, and include any related documents.
“We want to make sure that the information about your values and treatment preferences is with your health care team members and included in your electronic health record,” Youngwerth says, and Brackett adds that she often suggests people take a picture of documents such as medical power of attorney with their phones.
“The goal is to support people in making decisions, and making those decisions known, before the time when they’re needing significant health care and may not be able to make their wishes known,” Brackett says. “It’s important to be having these conversations with loved ones, with support teams, outside of the hospital in the regular world so that in serious situations, what you want to happen is what does happen.”