The heart of the matter with advanced directives and why you need to push more for them

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James M. Berklan
James M. Berklan

In their most crass interpretation, advance directives can save the healthcare system a lot of money. At their most heartfelt, they can reduce a lot of pain and suffering. They also are the essence of patient-centered care.

And that's the real shame for anyone not having an advance directive such as a living will or designated healthcare power of attorney, says Colleen Galambos. She's  a professor of social work at the University of Missouri, where $35 million in recent grant money is flowing toward improving the nursing home experience.

Galambos and fellow team members announced new findings Tuesday that discovered just half of 1,800 St. Louis-area nursing home residents had advance directives. The national average is 65% to 70%, which reflects a growing number but is still much too low, she says.

Galambos laments that some nursing home providers pursue “aggressive” end-of-life care — “even if it is not in a person's best interest or against a resident's wishes.” More attention to advance directives may reduce unnecessary care and lower healthcare costs. But most importantly, they would respect a resident's wishes, Galambos repeats.

This is the key point, she told me Wednesday: Giving people the opportunity to tell caregivers as to what medical procedures and life-sustaining measures are acceptable. This dovetails nicely into the tenets of end-of-life care and patient-centered care.

“It's really about giving people a voice and helping them guide us, instead of assuming that it's one [method] or another,” Galambos says. “There is a significant percentage of the population who want aggressive care, and that's OK.”

Although the numbers are actually up when it comes to advance directives, in Galambos's perfect world there would be 100% compliance. She's so passionate about educating people about advance directives, she says, she recommends people have important discussions with their loved ones before critical decisions need to be made. Evan as young as 18 years old.

As proof of her devotion, she told how has already had end-of-life discussions with her 25-year-old son about what he would want. Similarly, he knows what she wants.

“Was it a comfortable discussion? No,” she recalled. “But I'm glad I know.”

She directs others to the  National Healthcare Decisions Day web page. The NHDD concept has grown so big, it's actually a full week this year, April 16-22. That Thursday, April 20, is a day dedicated to facilities and “healthcare providers of all sorts” to promote advance care planning. The next day is “Professionals Preparedness” day.

She also likes to point people to the Conversation Project. The initiative, first started by former journalist and Pullitzer Prize winner Ellen Goodman, is “dedicated to helping people talk about their wishes for end-of-life care.” It sprang from experiences Goodman suffered with her mother. The latter woke up unable to speak one day, stricken by something that eventually led to her death — but because Goodman and her mother had never had “the conversation,” both suffered deeply. Goodman vowed that others wouldn't have to suffer the same fate.

People must realize they don't have to hire an attorney to create an advance care planning document, Galambos emphasizes. [They do need a notary public and two witnesses.] Templates suitable for each state — because individual states have differing rules — are available here.

Get one filled out and then give a copy to a patient's physician, a surrogate for health decisions, and a handy spot where it can be retrieved should an ambulance be needed. Otherwise, plans without paperwork can be superseded by medical professionals unfamiliar with a loved one's preferences.

“If a hospital wants to do something different, you don't have a leg to stand on,” Galambos warns.

And your loved one — or you — don't get the patient-centered care you deserve.

Follow James M. Berklan @JimBerklan.

Daily Editors' Notes

McKnight's Daily Editors' Notes features commentary on the latest in long-term care news and issues. Entries are written by Editorial Director John O'Connor, Editor James M. Berklan, Senior Editor Elizabeth Newman and Staff Writer Marty Stempniak.