“Only you can speak for yourself.”

 

Those were the opening words  by Lynn McKenzie, Executive Director of Light the Legacy during a presentation on Advanced Health Care Directives Wednesday at CentraCare Health - Monticello.

 

Light the Legacy is a community-based organization dedicated to improving end-of-life care in Central Minnesota. 

 

McKenzie has given numerous presentations in an attempt to encourage people to get a health care directive, which tells family and health care professionals how a person wants to live out their final days.

 

“We want to make sure our wishes are known, that’s what advanced care planning is all about,” she said. “You need homeowners insurance and car insurance, so why wouldn’t you need to have an advanced care directive for your health?”

 

McKenzie wasn’t just lecturing about something she read about. She has lots of experience with healthcare directives. She shared her story.

 

Her father had colon cancer and ended up in hospice. McKenzie took off the last month of his life and helped her mother care for him.

 

“He had a health care directive and we knew exactly what his wishes were,” she said.

 

Her first husband was diagnosed with Stage IV cancer at age 39 and went through chemotherapy and radiation treatments. In the last 32 days, he ended up in Fairview University Hospital, with the last few weeks on a ventilator.

 

“He had a healthcare directive,” she said. “I was so grateful because the last thing you want to do when dealing with crisis is worry about filling out a healthcare directive.”

 

Her mother-in-law was at Mankato Hospital in hospice with multiple complications. 

 

“She had a health care directive. She chose to forego nutrition and hydration,” said McKenzie. “A lot of people might think that might be cruel, but when your body is naturally trying to die, it could actually be painful to introduce food. She died a very peaceful death.”

 

At 19, her son found out he had severe chronic crones disease and has had six surgeries. He has a health care directive.

 

“The point is  you never know when crisis is going to happen,” said McKenzie. “So it’s important to do it when you’re healthy and thinking clearly versus in intensive care.”

 

She said many people use an excuse for not having a health care directive, like saying their spouse or kids already know what they want.

 

“But you get them in a room together and start asking questions... they don’t know what you want,” she said.

 

Another excuse is fear of the unknown or making a wrong decision.

 

“People often say, ‘I don’t know what’s going to happen to me. I don’t what’s going to happen in the future’,” said McKenzie. “But you don’t have a voice unless you make a choice. The best way to predict the future is to invent it.”

 

That means letting people know your wishes. McKenzie showed a short video about an older couple where the husband had a terminal illness that was getting progressively worse.

 

When they sat down with someone to talk about the future, the husband said he wanted to deny treatment for himself once he reached the point of facing a prolonged hospital stay with little chance of living through complications. He gave the same answer if he could no longer walk, talk and required 24-hour nursing care.

 

McKenzie said everyone over the age of 18 should have a health care directive.

 

The document includes selecting a health care agent - someone who will make sure your wishes are carried out.

 

“The agent needs to be willing to accept the responsibility and be able to follow through with your wishes even if they don’t agree with your choice,” said McKenzie. “It’s someone able to make decisions in stressful situations.”

 

It includes your health care instructions, like whether to have CPR attempted if your heart or breathing stops, or tube feeding, being hooked up to a respirator or IV to prolong life.

 

The directive also includes areas to describe things like your wishes about organ donation,  religious affiliation, where you want to be when you die, and type of funeral.

 

McKenzie said a health care directive gives an individual and their family peace of mind and reduces stress and anxiety about decision-making when the patient can no longer communicate their wishes.

 

“It’s a gift that you’re giving to your family,” she said. “I can tell you first hand that having a health care directive when my husband was in the ICU room on the ventilator, was truly the last gift of love my husband gave me.”

 

A downloadable health care directive form, as well as tools and resources can be found online at http://www.honoringchoices.org.