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 Natural Awakenings Lancaster-Berks

Planning for the Future: A Conversation With Karen Stauffer on Person-Centered Decision-Making

Karen Stauffer

Karen Stauffer, community educator at Hospice & Community Care and a certified facilitator in advance care planning through Respecting Choices, shares her personal journey and helps demystify the process of making meaningful end-of-life decisions.

What inspired you to start talking about end-of-life planning?

I learned all of this the hard way. I come from a blended family—my parents were divorced and both remarried. My mother was homebound for three years due to her health and didn’t have any documents in place regarding her end-of-life wishes. The day my mother passed away, she knew her illness had progressed and begged my stepfather not to call the ambulance. In a state of panic, he called 911 and my mom was intubated on a ventilator. She was conscious, but unable to speak. At the hospital, I put a pen and paper in her hand and asked her what her wishes were, and she wrote, “no machines.”

What did you take away from that experience?

After that experience, we learned about end-of-life planning and how important it was to have documents in place. A few years later, when the time came, I was able to advocate for my stepmother, sharing her wishes with her medical providers. I know firsthand how much easier it is to advocate for someone when you are confident that you are making the decisions that they would make for themselves. It takes the guessing out of a stressful situation.

You prefer the term “person-centered decision-making.” Why is that?

The term “advance care planning” can perpetuate misconceptions. I refer to it as person-centered decision-making to reflect a more positive type of process that goes along with planning for major life events. We need to make this a topic that people want to talk about and that is normalized.

What are some common misconceptions people have?

The biggest misconceptions I often hear are that creating a plan is for people who are retired or have been diagnosed with an illness, that it costs too much money to get a lawyer or that their doctor never brought it up.

Who is person-centered decision-making for?

It’s for people 18 years old and older. It allows someone to decide in advance what care they want to receive if they become unable to speak for themselves. Rather than leave their treatment options up to others, they are able to leave instructions that take their values and preferences into account and eliminate the uncertainty for their doctors and family members.

Does it cost anything to create a plan?

A plan is free to create. It’s a process—an ongoing plan that incorporates an individual’s medical conditions, healthcare goals and hopes for care. Advance directives may include a living will, medical power of attorney and/or financial power of attorney and can be changed throughout the course of a lifetime.

How do you know when it’s time to update your plan?

It’s important to keep in mind the four D’s: every decade, a new diagnosis or decline in one’s health status, a divorce or growing distance—geographic or relational.

How can someone begin the planning process?

Think about your past experiences with loved ones at end of life. How much advance planning had or hadn’t been done for them, and what have you learned from those experiences? Identify people you trust and who would feel comfortable communicating your wishes. Learn about your options depending on health-related situations—like CPR, breathing, nutrition and hydration. Once you’ve thought through your decisions, document your wishes by completing a living will and choosing a healthcare power of attorney. Lastly, discuss your wishes. Share documents with your family or friends, healthcare power of attorney and medical providers so everyone is on the same page and knows how to honor your goals and wishes.

For more information or to schedule an educational program, contact Karen Stauffer at 717-490-4074 or [email protected].