Have you had the conversation about advance directives?

The holidays may seem like an unusual time to encourage people to hold conversations about the end of life, but it’s actually perfect timing.

Social worker Mary Catherine Dubois plans to do just that, because she already knows firsthand the power of having ‘the conversation.’ It’s a conversation the Medical University of South Carolina is encouraging the public and its employees to have this month in conjunction with The Conversation Project, which is dedicated to helping people talk about their wishes for end-of-life care.

Dubois, who serves on MUSC’s palliative care team, knew her father believed in God and an afterlife. That’s what he taught his five children. But when it came time for his family to decide whether to let doctors implant a feeding tube or allow him die, things weren’t so simple.“My mother had a hard time with this,” she said.

Dubois, a palliative care social worker at MUSC, hopes what her family did next will help other families facing similar situations. She told her story as part of a campaign at MUSC to encourage people to prepare advance directives – documents that spell out what treatment they would and would not want during a life-threatening health crisis. 

In the case of Dubois’ father, the family was able to look at what he said he wanted when he was still able to speak. “My mother and father, thank goodness, had the foresight to get all their paperwork in order and create their health care power of attorney.”So his family knew what to do, even though it was difficult to say goodbye. “His health care power of attorney document clearly said he didn’t want a feeding tube if he was at a point of his life where he was expected to pass in a short period, which he was.”

Being reminded of that helped her mother accept that he wouldn’t want to be kept alive with a feeding tube.Dubois’ father was brought home with hospice help to spend his final days with family. “He passed away at home, which was what he wanted,” Dubois said.

Unfortunately, most people have not completed advance directives. A recent survey found only about a quarter of the people asked had, and the most common reason for not filling one out was a lack of awareness about the need for them. Chief Executive Officer of the MUSC Medical Center Pat Cawley, M.D., said advance directives do more than help families make decisions. They also offer guidance to doctors. “As a physician, I like to protect my patients’ wishes, so I encourage them to complete an advance directive before a health crisis.”

South Carolina recognizes two types of advance directives: a medical power of attorney and a living will. Power of attorney directives, like the one Dubois’ parents filled out, let you choose someone to make decisions about your medical care if you can’t make them yourself. They also let you express your wishes when it comes to life-sustaining treatment. Living wills are similar, allowing you to say how you’d like to be treated if you’re terminally ill or permanently unconscious. You can find links to both on the website aging.sc.gov. 

Palliative care doctor Maribeth Bosshardt, M.D., said advance directives can be a little overwhelming, so it’s good to get help filling them out if needed. “They can be wordy and confusing.”

MUSC will host advance directive events to assist employees in filling out the forms over the next couple of weeks. On Nov. 13, there will be a booth in the main hospital from 10 a.m. to 2 p.m. with advance directive forms and snacks. November 18, there will be booths at a variety of times to accommodate employees’ schedules. The Nov. 18 booths will be open from 11 a.m. to 3 p.m. in both the Children’s Hospital and Ashley River Tower. There will also be booths Nov. 18 from 10 p.m. to midnight in the main hospital and Ashley River Tower. People who stop by will be entered in a raffle.

There also is a push to encourage MUSC primary care doctors to have “the conversation” with patients and make patients feel comfortable bringing it up as well. Dubois said it’s worth making the effort, whether you’re an MUSC employee or not. She encourages people to visit The Conversation Project website to help them talk with loved ones about end-of-life care and share stories about “good deaths” and “bad deaths.”

Even if family members have advance directives, if they haven’t talked with relatives about what they want, their wishes may not be known or honored.Dubois has seen the difference those conversations can make, in her own life and in the lives of the patients she helps care for.

“Many families have never talked about prolonging measures if they’re at the end of life,” she said. She remembered the case of a woman in her 50s with three adult daughters. “She could no longer talk. She could no longer express her wishes. But she’d talked with her daughters.”The woman told them she didn’t want to live on a respirator with a breathing tube if she’d never recover. “I was with her daughters as they discussed this, and they reminded each other of what mom said.

”But those weren’t the woman’s only wishes, Dubois said. “She also told her daughters, if I’m ever in this situation you’d better make sure my nails are done. They went downstairs to the gift shop and bought some bright red nail polish and painted her nails, and then they were able to make the decision and tell the doctor what their mother wanted.”Dubois plans to bring up end-of-life questions over the holidays. “I’m taking a big risk this Thanksgiving,” she said.

“My mother lives next door to me now, and we’re all, for the fist time in 7 years, getting together for Thanksgiving. I’m going to ask her permission and say, ‘let’s all talk about it.’ All of my siblings. We can talk about it and know what everyone wants.”

More information about MUSC’s Advance Directive Campaign

• An advance directive can be written or verbal, and you don’t have to have a lawyer to fill one out.
• Both state and federal laws govern advance directives.
• The Patient Self-Determination Act requires health care facilities that get Medicare and Medicaid funds to tell patients about their rights to fill out advance directives.Questions to consider include whom you want to make decisions if you become seriously ill and under what conditions you would want life-sustaining measures.