For Kimberly Paul, it was the stories about the lives of people who were dying that led her to advocate for them.
She also wanted to advocate for the people who ease their suffering and for those, like herself, who want nothing more than to go with dignity when the time comes.
Paul, a former hospice communications executive and television casting assistant turned CEO of “Death by Design,” is visiting all 50 states, in her RV on what she calls the “Live Well, Die Well” tour.
On Wednesday night, she brought her message of changing attitudes toward communicating death and honoring the way loved ones want to die to the Woman’s Club. Her presentation, “No Matter What, a Movement Starts with an Empowered Community,” was sponsored by the Hospice Alliance.
During the hour and half long presentation, she said that it was her volunteer work at a hospice center that changed her life. Their stories compelled her and forced her to do some soul searching.
“Wow, these people who are on the edge of imminent death, what do they have that I don’t have?” she said to the 40 people in attendance. “They don’t have ego ... they don’t have time to mess around. What they also have is the ability to look behind themselves and tell me ... what they would’ve done differently.”
Later, after 17 years of being in the hospice industry, she quit her job so she could make sure “everyone had a voice at end of life.”
“The worst thing to be when you get to a health crisis is to not know what you need to know. And know that what you knew was not exactly what the reality is,” she said. As a result, end-of-life decisions then become based on emotions rather than a plan.
During her transition to advocacy, Paul wrote the book “Bridging the Gap: Life Lessons from the Dying”, which she had for sale and signed for those in attendance. She led a podcast about death that encouraged a wider audience to think about what they would want to do when the time came. Her server crashed as she received more than 5,000 downloads within the first 90 days.
“People want to talk about death,” she said. “Maybe they just need permission to know that they’re not going to look away, which is very key, because a lot of us who suffer from grief were afraid to share it with you because we don’t want to make you sad.”
She not only became an advocate for the dying but for changing the health care system’s approach to dealing with how it treats those whose lives are coming to an end.
“Don’t misunderstand me, I love modern medicine when I break my arm ... but you can’t fix death,” she said. “Sometimes, I have seen, that as we try to fix death, we prolong suffering. We prolong death.”
Paul said that the conversation about death and dying needs to emerge from the closet that it needs to become a normal part of life because everyone is going to die at some point.
She alluded to how people in New York during 9-11 didn’t know they would wake up that day perceiving they would die. And yet, many were able to make calls to their loved ones to tell them they loved them and said their goodbyes.
But, it has been her experience that many who have terminal illnesses are presented with options to prolong their lives without considering their death.
“You have this and you have this and you have this. What do you want to do? And they never say anything about dying,” she said. “So what does the patient or family member do? They go against their gut, their internal mechanism and trust the doctor and say, ‘Yes, let’s try this.’”
They try the treatment and their life is cut short, she said. They end up in intensive care the majority of the time “never having the opportunity to say goodbye or I love you,” she said.
“Are we stealing a fundamental step away from human beings when we avoid the hard conversations about how this is going to end your life?”
Paul said she wants to help change the culture by empowering people to hold health care professionals accountable and for family members to the right questions and the people with terminal illnesses to make known how they want to die so that their wishes are clear.
“I want you say, ‘Is my mom dying?’ and be brave enough to hear the truth. Because no matter what, she will die whether she’s on treatment or not. We will all die,” she said.
She encouraged people think about what they want their last days to look like. For Paul, it’s having her funeral before she dies, being to able to have the last word and to have someone by her side through hospice.
“How we die is how people are going to grieve us,” she said. “If there’s one thing I want for each one of you today is that I want you to reclaim your death from the medical community because death is not a medical event. It is a human event. I believe each one of you can reclaim it.”