(Julie Pfitzinger is the managing editor for Next Avenue and senior editor for lifestyle coverage. Her journalism career includes feature writing for the Star-Tribune. Julie also served as managing editor for nine local community lifestyle magazines. This article, used with permission, appeared online at https://www.nextavenue.org/making-your-final-wishes-known/.)
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It’s a subject that can keep us up at night — if I am diagnosed with a terminal illness or facing a serious health challenge, how do I want to die? Do I really know, and more importantly, do my loved ones know, my exact wishes? How do I start to capture those reflections and launch the conversations I need to have?
It’s very common for people to ignore these kinds of decisions. They may have ideas but prefer not to talk about their own death. Many people don’t have a comprehensive understanding of the language needed to address the ultimate tough topic.
It’s not tough to put off those important discussions, but Dr. Luis Pagán-Carlo, author of Your Life’s Choice, has created a new guide/workbook that can serve as an interactive resource to help bring focus to planning.
A board-certified cardiologist for more than 20 years, Pagán-Carlo spent much of his career at the Minneapolis Heart Institute. He has been in hundreds of conversations with patients and their loved ones, listening to them express uncertainty, fear, and confusion about what to do as the end of life approaches.
In an interview with Next Avenue, Pagán-Carlo said he was inspired to create this book as a way to simplify the discussions he believes were once easier to have.
“In my practice in the Twin Cities suburbs, I used to take care of grandparents, parents, and then ultimately the grandkids. Over the years, you would get to know the patients and as the time came near, you would start having conversations over a month, maybe even years,” he says. “As [end of life] came closer, you would sit down with them and say, ‘It’s time for us to make these choices, so that none of us feels like we’ve left anything undone.’ In those days, the same doctors you saw in the clinic were the ones you’d see in the hospital.”
Looking for Answers
Pagán-Carlo shares a scenario that he recently experienced with his own mother, 89, who was recovering from a stroke, and how it showed him how difficult it can be to fully understand the decision-making process.
“My mother has always been very forward about her wishes, but I started to see that I really needed to be able to get her to start talking now,” he says. “What I found [in my research] was, ‘go to this website, go to this website, answer this question.’ It was a difficult process. For anyone who’s not involved in medicine, it becomes overwhelming. I am, and it was overwhelming for me to try to find what I was looking for.”
Empowering patients to learn important terminology (“I think medical literacy is a big issue because it’s gotten too complex”) and to have a primer of what they need to know was Pagán-Carlo’s goal in developing his book.
Your Life’s Choice is divided into ten chapters focused on topics such as “What is Holding Us Back? (End-of-Life Inertia),” “Technology and the End of Life,” and “Palliative Care and Hospice.” The book also contains a comprehensive glossary of terms such as Allow Natural Death (AND), Comfort Care, and Respiratory Arrest.
At each chapter’s conclusion is a summary of the key points enumerated and the questions to ask yourself as you contemplate the specific topic, with room on the page to jot notes.
For example, questions for the chapter titled “The Role of Friends and Family and the Conversations That You Need to Have” include:
- When the time comes, who will help me make a decision about care? What if I do not want to prolong the inevitable?
- Who will help me take care of my personal affairs and responsibilities?
- Who will help care for me if I need help?
- Who and what supports me during difficult times?
- What do my kids, siblings, and family members think of regarding my end of life?
Choosing a Healthcare Proxy
As you begin considering end-of-life decisions, the selection of a healthcare proxy is very important, according to Pagán-Carlo, and one that typically requires in-depth consideration. He suggests writing out your thoughts about your end-of-life wishes (which may also include faith issues) before talking with the person you are asking to be your proxy.
“It has to be someone that you feel comfortable having tough conversations with. You also have to be sure they’re willing to follow your wishes, and that they will make independent decisions based on your conversations when you’re no longer able to make those decisions based on the information the physicians are giving them,” he explains. “It’s a complex role. I always think it should be a very good friend, not necessarily a child or spouse at times, because the family is too emotionally involved – but the proxy almost always has to take into consideration the feelings of the family.”
Above all, it is Pagán-Carlo’s view, based on his experience, that we need to normalize conversations around our wishes. It’s a tactic he’s used both personally and professionally.
“Maybe it is because I grew up in a household full of older people that I feel comfortable talking to older patients about death. I had many older aunts and uncles who lived with my grandparents or my parents,” he says. “My father-in-law is 99, my mother is 89. The easiest way to approach the conversation is, ‘What do you want me to do if something happens?’ That’s an easier conversation than saying, ‘You have cancer, they gave you six months, what are we doing?'”
Rather than setting the stage for a big (and likely emotional) discussion, Pagán-Carlo favors making the topic part of the landscape of daily life.
An Ongoing Conversation
“Maybe you take five minutes at breakfast one day, 25 minutes at a family gathering another day, but don’t let it become the sole topic of the gathering,” he says. “You just say, ‘Look, we need to start thinking about this, and next time we’re together, let’s set 10 or 15 minutes to talk about it.'”
Your Life’s Choice can become a tool not only for family and loved ones, but also for an individual to share with their physician, according to Pagán-Carlo.
“Especially with notes from the last chapter [of the book], the patient can say, during an appointment, this is more or less where I think I’m landing (on my decisions), so let’s talk about this. Medicine has become so compartmentalized that the doctor only has 10, 15 minutes,” he says. “But if you come in with an outline that says, ‘This makes sense for me, this doesn’t make sense,’ or ‘let’s do this,’ that becomes the format for what you’ll share with your proxy.”
Say you are proactive, you start working on these questions and having the conversations, but are fortunate to have 30 more years ahead of you. Pagán-Carlo believes an end-of-life document, and the discussions they provoke, should never be static.
“The original concept for me in writing this book was to treat this like an estate plan. Every 10 years, you need to recycle your estate plan. In your 50s or 60s, if you’ve started having these conversations with your doctor, your healthcare proxy, your family, it will become routine,” he says. “And you don’t know how you’ll feel at 70 when you’re 60. Things can change.”
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
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