This post was written by Chris Brinneman, MSW, LCSW, Advance Care Planning manager, Parkview Health.
About two years ago, one of my friends said that she needed to introduce me to one of her friends. She said, “I don’t know two people who talk more about death and dying, than the two of you.” About two days ago, another friend said, “The work you do must be so depressing.” I understand why they think that, but talking about death, dying and end-of-life wishes makes me aware of the fragility of life. And that awareness gives me energy to learn to live as well as possible all the way to the end.
By intentionally inviting people to talk about what matters most to them with the people who matter most to them, and to define how that impacts medical decision making, we are creating space for people to engage in meaningful conversations. We help people embrace the value of talking now about who you want to make health care decisions if you cannot make your own and what you want those decisions to be all the way to the end.
In an Advance Care Planning (ACP) conversation, we first explore who would be the best person to make medical decisions for you, if you cannot make your own because of your medical condition. When we ask you the following questions, you should be able to answer “yes” to each to know that you have identified your best medical decision maker (called a health care representative in Indiana):
- Is this person willing to make decisions if you cannot make your own?
- Will this person have ongoing conversations with you about your wishes?
- Do you trust this person to respect and follow your wishes?
- Is this person confident, willing to ask questions and to be your advocate?
- Is this person good in a crisis?
The person you choose should be someone who knows you well and is invested in your wellbeing. Your spouse, adult child or other family member may not be the best choice because of their emotional investment. Sometimes, they are the best choice. Perhaps a friend is a better choice for you. Ultimately, you know best. But we can help you consider your options, helping to identify a primary person and even a backup.
For much of an ACP conversation, we do not even focus on health care choices. Certified facilitators are trained to help you to reflect on and discuss your experiences, your values, your beliefs and your definition of what it means to live well. We need to have a better understanding of who you are and what is meaningful to you. Then, we can begin to explore your choices related to future medical care. If appropriate, we can help you to complete advance directive documents. Ultimately, if you are in an accident or are dealing with a serious, life-limiting illness, your medical team will help you and your decision maker balance risks/benefits and expected outcomes with your values and preferences to make sure you get the care that you want (or don’t want).
The power of choice
In an ACP conversation, communication is power. My mom is the perfect example of the power we have in talking about your health care choices.
My mother lived in a senior living center. She had an out-of-hospital do not resuscitate order on her refrigerator. She was very clear that if her heart and breathing stopped, she did not want CPR. My mom truly believed that all life is precious, but she wanted to be treated with dignity, with her end-of-life wishes honored.
Here’s what it meant for her to communicate those wishes so they could be honored:
- I am one of 5 adult children.
- I was her appointed health care representative, along with one of my sisters.
- I am one of 3 daughters, who have a combined 110+ years of health care experience – as a nurse, a respiratory therapist and a medical social worker.
- All 5 of us knew my mother’s wishes related to life-prolonging medical interventions.
Heck, even my co-workers knew about my mom’s wishes.
Three months ago, my mom’s story got real. She was involved in a car accident that resulted in her death 36 hours later. Initially, following the car accident, my mom was able to make her own decisions. As her condition declined, my siblings and I helped draw the lines in the sand related to treatments, procedures and tests that were not consistent with who Mom was and what she wanted. We advocated for her comfort.
My mom, Shirley, is the superhero in this story. Over the years, she boldly had many conversations with me and my siblings about what mattered most to her. Some of the conversations were emotional, some sad, but some were actually funny; all gave us the insight we needed when the medical emergency occurred. She had communicated her wishes about current and future medical care, assuring that we were of one accord all the way to the end.
Decision making about health care and the resulting death can drive a wedge between family members. Every single day since my mom died, my siblings and I have been in contact with each other. We have all grown closer. We are grieving but our journey supports evidenced-based research that demonstrates that bereaved family members of people who have engaged in ACP conversations experience less anxiety, stress and depression.
The value of communication
As the manager of Advance Care Planning, I am passionate about encouraging all adults, regardless of age or health, to have ACP conversations. As Shirley’s daughter, I urge you to start talking to each other about health care decisions … now.
Communicate. Even if it is uncomfortable.
Communicate. Make sure your family knows. As George Bernard Shaw said, “The biggest problem with communication is the illusion that it has taken place.”
Communicate. It’s always too early, until it’s too late.
Communicate. Schedule a cost-free Advance Care Planning conversation.
For assistance, contact Chris Brinneman, manager, Advance Care Planning, at [email protected] or 260-266-1471, or Erica Downing, advance care planning facilitator, at [email protected] or 260-266-1481.
