One of the lessons learned from the COVID-19 pandemic is that people may be faced with a serious illness or a medical emergency that required vital decisions about their medical care, and sometimes those decisions couldn’t be made by the patient themselves. This has brought awareness to the need for making an advance directive.
National Healthcare Decisions Day, is an initiative held annually on April 16, to encourage people to make an advance directive and to discuss their wishes about future healthcare decisions and put them in writing before a health crisis occurs. This helps loved ones, providers and facilities be aware of and respect those wishes. People can also specify what life-sustaining treatments they do or do not wish to have.
To honor this national initiative, eight different Utah health organizations have come together to bring awareness to the need for people to make an advance directive. The organizations include: Comagine Health, Intermountain Health, MountainStar Healthcare, Steward Health Care, University of Utah Health, the Utah Hospital Association, the Utah Geriatric Education Consortium, and the Utah Nurses Association.
“Designating a trusted healthcare representative who is aware of your wishes is the most important part of an advanced directive. Doing this means you’ll have an advocate who can speak on your behalf about medical decisions when you’re unable to,” said Dominic Moore, MD, a pediatric palliative care physician, with University of Utah Health and senior medical director of palliative care at Intermountain Health. “When a person’s wishes are unknown, these tough situations can be filled with uncertainty or guilt.”
Physicians who care for seriously ill patients say advance directives are important for anyone over age 18 and even younger, if they have a serious chronic condition. They agree these are difficult, but very important conversations to have.
“Filling out an advance directive form and sharing it makes it official. But, it’s also very important to have a conversation with your healthcare representative and other loved ones, so they all know who has been designated to make medical decisions for you, when you cannot make them for yourself. These conversations will also help others understand your values and what quality of life is important to you,” said Filip Roos, MD, chief medical officer, MountainStar Healthcare.
During these conversations, palliative care physicians encourage people to share what makes them feel like they’re living life, and not just existing. Advance directives help paint a picture, so others can make decisions about questions that are hard to predict in advance. It’s difficult to anticipate all the medical scenarios.
“Having a signed advance directive is particularly important for those living in rural areas, where access to care often requires leaving your home community for treatment in a distant, urban setting. Having official documentation during those difficult transitions helps ensure healthcare representatives are included in conversations and your wishes are honored,” said Linda S. Edelman RN, PhD, director, Utah Geriatric Education Consortium.
Health providers say it’s a good idea to update advance directives annually, or if one of the “four D’s” occurs:
- Diagnosis – receiving a serious diagnosis
- Decline – in health
- Divorce – typically impacts who is designated to make medical decisions on behalf of a spouse
- Death – of the designated healthcare representative
They recommend people keep all their information up to date and check the legal requirements for paperwork in the state where they live. Advance directive forms can be completed online, on paper, at home or in a doctor’s office or a hospital.