A man sits in a patient bed with support staff surrounding him.
An advance directive can give patients a much-needed sense of control amid tremendous uncertainty. (For Spectrum Health Beat)

No matter what chapter they’re on, every person has the right to determine their life story.

Simin Beg, MD, MBA, division chief of Spectrum Health Hospice and Palliative Care, helps patients write what is often the most difficult chapter of all.

In treating patients who are terminally ill, Dr. Beg welcomes the chance to help patients think about advance directives. She helps them understand their disease and explains what they should expect. She outlines treatment choices and determines exactly what the patient wants.

It may sound surprising, but most patients are relieved to have this conversation.

“Sometimes that reality is hard, but talking about it doesn’t change the reality,” Dr. Beg said. “And sometimes talking about it makes it less scary. You are not alone in it.”

When patients create an advance directive, sometimes called a living will, it can restore their feeling of control.

An advance directive is about living. It’s about giving the patient the opportunity to live the life they want to live.

Dr. Simin Beg

“Every human life plays out as a story,” Dr. Beg said. “With an advance directive, you have the opportunity to be an author in your story—the opportunity to say how your life plays out.”

Communication matters

“It always seems too early, until it’s too late,” said Iris Boettcher, MD, CMD, who specializes in geriatric medicine at Spectrum Health.

Dr. Boettcher often treats elderly patients who are frail and have several chronic conditions. Some have cognitive impairments.

“We talk about what matters most with our patients,” Dr. Boettcher said. “What is a good day? What are their fears and worries? What is their desired outcome? And then we craft a care plan that is consistent with those goals.”

Preferences vary. Some patients want to stay alive at all costs. Others want to focus on comfort.

“We tell patients it’s important that they designate someone of their choice to speak for them,” she said.

They should also discuss their goals, preferences and values with the person they select. This patient advocate, usually a family member, is also known as a durable power of attorney for health care.

Patients should also take steps to ensure their doctor or medical team has a copy of the information, which would be added to their medical records.

A better ending

Advance directives don’t just help patients—they also help family members. With guidance from an advance directive, a grieving family member may experience less stress, grief and depression at the time of death.

For example: Dr. Beg had a 92-year-old patient with heart failure who told her daughter, “I’ve had a good life. Let me go. Don’t call 911.”

The daughter cried upon receiving those instructions from her mother. But when the mother died, the daughter found peace that her mother’s directives were followed.

Dr. Beg likens it to the maxim, “It takes a village.”

“That village needs to come together and honor what the patient wants,” she said.

It’s also important to remember that advance directives aren’t just for people in their late years, or those facing certain death. Everyone should have some form of advance directive authored to help guide their loved ones amid uncertain times.

Drs. Beg and Boettcher both created their own advance directives. They believe everybody should have one—because life can change in an instant.

“In our culture, we don’t like to talk about challenging things like dying. But really, an advance directive is about living,” Dr. Beg said. “It’s about giving the patient the opportunity to live the life they want to live.”