Advance Care Planning: A Gift to Loved Ones
Discussing serious health problems and end-of-life issues with loved ones can seem so daunting that some people avoid it entirely.
But for family members bold and proactive enough to talk about these topics, creating an advance care directive -- guidelines for how a person wishes to be treated in case of a serious or terminal illness -- can provide immeasurable peace of mind for the whole family.
In recognition of how difficult these conversations can be, and how important they are, Duke Medicine’s volunteer Patient Advocacy Council created three short videos explaining what advance care planning is, why patients should file these documents, and how to go about the process.
What Is Advance Care Planning?
Advance care directives include a living will, which allows you to specify your medical preferences, and a health care power of attorney, which names the people you want to make health care decisions for you if you are unable.
Examples of the kinds of preferences a living will specifies include if you do or do not want artificial nutrition, and if you are willing to be placed on a breathing machine for an extended period of time.
If you were ever unable to speak for yourself, your health care power of attorney would ensure that your wishes were carried out. Some examples of these kinds of situations might be if you were unconscious after a traumatic injury, or if you began to suffer from dementia too severe to make your own decisions.
Brenda Radford, director of Guest Services at Duke University Hospital, says that because the federal government requires Duke to ask patients entering the hospital if they have an advance care directive, many people think they are required to have one. Radford says that it is not mandatory for patients to have this paperwork on file, but it is a very good idea.
“It’s a gift to their families,” she says. “If you wait until there’s a huge problem -- maybe someone is injured in an accident -- that’s not the time to start having those conversations. People aren’t always able to make rational decisions at that time of their life.”
Tough Topic, Gentle Touch
The videos take a light approach to the difficult subject, presenting both humorous and serious scenarios to illustrate why advance care planning is important.
One video explains the difference between hospice and palliative care, two services that are often discussed when serious health issues are at hand. Both services manage symptoms, but palliative care does so while seeking a cure, and hospice is an option only when a patient has months or weeks to live.
Duke patient advocate Tiffany Christensen, a member of the council, wrote and directed the videos, and understands firsthand the benefits of making advance care decisions. Born with cystic fibrosis, she has undergone two double-lung transplants.
“One of the things we really want people to understand is if you’re 18 years old, you need to start thinking about this,” Christensen says. “It’s not just about the documents. It’s about having the conversation.”
Taking Care of Business
Patients may download advance directive forms (PDF, 116 KB) on our site. Once you have talked with family members about your wishes, you need to have the forms notarized. Many banks and some physician offices can provide that service -- call to find out.
For patients in the hospital, Duke provides notaries who will come to the bedside or meet you in clinic. Health care providers, patient advocates, pastoral care representatives, or social workers can explain details and help you fill out the forms.
It’s also a good idea to discuss your choices -- before and after the fact if necessary -- with your health care provider. Once your decision is made and your paperwork finalized, your provider will keep copies of the forms on file.
It is important to continue to talk to loved ones about your advance care wishes from time to time. You should update your forms if there is a health status change, if one of your healthcare agents is no longer willing or able to represent you, or if it has been more than a year since you have reviewed the documents.
Additional Resources
The North Carolina Secretary of State offers an advance care directive registry. The registry enables health care providers to find directives if patients are unable to provide them -- for example, a serious illness or accident that takes place in another state.
