A local author shares steps for taking control of end-of-life decisions.
The National Institute on Aging estimates that more than one in four older Americans face complex medical questions near the end of life but are incapable of making decisions. If you’re incapacitated and unable to speak for yourself, who will represent your wishes? Many experts agree that talking about it while you are still in good health is the key to getting the care you want — or avoiding what you don’t want — during a complex, stressful time.
“The bottom line is that a sweet, peaceful death will not come out of the natural flow of our lives in the 21st century,” says local author and educator Hattie Bryant, who wrote I’ll Have It My Way: Taking Control of End-of-Life Decisions. “Since the first emergency 911 telephone call was placed in 1968, the natural act of dying has shifted year by year from being an understood and predictable process managed by a family doctor with support from family and friends into a high-tech, high-speed, multi-machine, multi-doctor impersonal series of events that might not let us die for years, and leaves us vulnerable and often voiceless, and makes it nearly impossible to die gently.”
Bryant is quite passionate about the need for advanced planning when it comes to end-of-life care. In her book, she outlines four must-do steps for planning ahead:
1. You have to acknowledge the inevitability of death.
2. You have to understand the limits of medicine.
3. You have to educate yourself about your choices.
4. You have to choose a proxy and communicate your wishes.
Mapping Out Late-Life Decisions
Asking yourself the hard questions now means things will be much easier for you and for your loved ones later. You can begin by analyzing your feelings on death and medical care. Do you want to maximize the days of your life or maximize the life in your days?
You might want to analyze the specific medical care procedures that can affect your health like CPR, ventilators, feeding tubes, IV fluids and pain medicines. Bryant includes worksheets in her book that help discern feelings about medical interventions. For example: I want to stop aggressive care when …
… I can no longer recognize or carry on a conversation with my loved ones.
… I can no longer chew, swallow and enjoy food.
… I can no longer take a shower or a bath.
Considering Financial Impact
The emotional toll of death is almost unavoidable, but the financial toll doesn’t have to be. By considering your choices now, you can decide where you fall on the spectrum of preserving your income versus at-all-cost medical care.
Bryant says the gravity of the financial impact of being kept alive can easily get lost in the emotions surrounding critical illness. If people ask themselves the important questions before they get sick, they’re more likely to plan logically and rationally.
Here are a few true/false questions from I’ll Have It My Way:
I am willing to spend my savings on my health care.
I am willing to leave my children with unpaid medical bills.
It’s okay with me if keeping me alive requires unlimited resources.
Choosing a Proxy: Why Age and Relationship Matter
Death is inevitably an emotional, confusing situation. Choosing a spouse or a child to handle these decisions could leave your wishes up to their personal interpretations and needs. Not choosing an individual means everyone gets to weigh in. For that reason, Bryant recommends one impartial party as proxy of choice. Age matters too, she says. You’d like your proxy to outlive you.
“My proxy is 34 years younger than I am and the child of a close friend,” she says.
Other potential proxy choices can include:
A niece or nephew
A neighbor who knows you well
A child of yours you know will be outspoken
“You empower them with your instructions,” Bryant says. “All they have to do is show up and stand by what you said.”
Don’t Delay the Decisions
The more people you tell now what it is you want and who you want to represent you, the more your loved ones will come to accept your decision and the more comfortable you can be that you will get what you want at the end of your life.
“You have to have clear instruction — someone you know who will stand up to the $2.9 trillion medical-industrial complex and let you die the way you want,” Bryant says. Help can also be found in the rise of palliative care medicine — a board-certified specialty since only 2006. Before embarking on life or death decisions, your first call should be for a palliative care consultation.
The Seasons of Our Life
Bryant’s spoiler alert: We all die. And while there’s no script of what to say or how to act, Bryant feels her book might just be the manual to die by. “I give you the tools to make your instructions clear,” she says. “I turn the living will upside down. That’s a document created by attorneys and the language is too vague … it doesn’t translate.” Instead, she feels strongly that with our pre-planned wishes in the care of a proxy and after a good palliative care consultation, we just might be able to circle back to the pre-911, whole-person family doctor days.
“We changed birthing, and we can change dying,” she says. “But we have to get educated about it first.”
Bryant likens a good death to fall foliage … the pinnacle of drama and beauty in the process of dying. “Nature takes us in; nature takes us out … we are nature,” she says. “If we stay in denial, we won’t have a beautiful death. Taking the time to walk through these four steps now is the greatest gift you can give to the people you love.” illhaveitmyway.com