Every workday, Karen Shelton visits about a dozen Howard County General Hospital patients in their rooms to talk to them and their families about advance directives.
Shelton, trained as a social worker, radiates kindness and compassion. Yet when she joined the hospital in January 2018 as its first advanced care planning program coordinator, “The patients were frightened when I walked in,” she says. “They thought I knew something about their illness, that they were close to end of life.”
Now, when she introduces herself, she says she’s meeting with all patients who do not already have advance directives in their medical records — not just ones who are gravely ill.
“The goal is to normalize the conversation,” says Shelton. “People think advance directives are for the elderly or those with serious illnesses, but everyone over the age of 18 should have one. We never know when an emergency will leave us unable to communicate our wishes.”
Advance directives give patients a clear voice in their care when they are unable to speak for themselves. “I tell patients it reduces the decision-making burden for families,” says Shelton.
She will sometimes sit with patients and go line by line through the 10-page advance directive document from the state attorney general’s office. Or she’ll give them a self-addressed stamped envelope, so they can complete the forms at home and easily return them to the hospital.
For the past couple of years, Howard County General Hospital has been working to get more people to fill out advance directives and file them with the hospital and other health care providers. The effort includes improving the way advance directives are stored in the Epic electronic medical record system, so clinicians can easily find the most up-to-date version.
As a result of this push, 26.6 percent of Howard County General patients older than 65 — about 1,500 — now have advance directives on file with the hospital, up from 10 percent in 2016. In all, nearly 2,000 patients of all ages have advance directives in their records, up from 1,330 in 2016, says Laura Torres, behavioral health program manager for the hospital’s population health department.
The advance directives program is in collaboration with the Horizon Foundation, a nonprofit that promotes health in Howard County.
The Horizon initiative, Speak(easy) Howard, provided one-time funding that helped the hospital hire Shelton. The Speak(easy) website features a portal where patients can complete their advance directives online. In addition, Speak(easy) provides educational materials about advance directives and trains community leaders who then bring that information to their churches, senior centers and other organizations.
One such educator is Sue Song, leader of the Korean American Senior Association in Howard County. Song and two other trained volunteers have met with about 1,100 Koreans in Howard County age 55 and older, and have persuaded 63 to file their advance directives with the hospital, she says.
Song says many Korean Americans don’t have advance directives because of difficulties with the English language and fears that the documents will upset siblings by designating a single health care agent instead of letting all family members participate in important decisions. She says she can ease those concerns by explaining that the documents ensure that children honor the wishes of their parents.
Advance directives are legally binding documents with instructions that spell out a person’s health care preferences, and a section for naming a health care agent to make sure those wishes are followed.
The Euthanasia Society of America introduced the concept of advance directives in 1967, a time when medical advances were forcing patients and their families to think about how they wanted to balance aggressive treatment with quality of life.
The documents allow patients to make choices regarding the conditions under which they’d want aggressive treatment. Patients can also specify certain wishes, such as wanting to stay alive until loved ones arrive, in a write-in section at the beginning of the living will portion of the document.
Advance directives can be updated as often as the signer wants, and only go into effect if the person is no longer able to formulate or communicate decisions.
Columbia resident Mary Greene and her late husband first got advance directives in 2006, after Daniel was diagnosed with Alzheimer’s disease. The documents guided Mary’s choice of hospice care for his final days.
Mary, now 73, later became a community volunteer, helping others work through the possibilities and questions outlined in advance directives.
“It’s not terrifying at all,” she says. “The best way for you to prepare for the type of death you would like to have is to state your wishes. This helps families, and it stops unnecessary medical treatment that doctors may feel compelled to give. It seems ideal for all parties.”