“Nothing is certain but death and taxes.” Benjamin Franklin
Benjamin Franklin
It’s human nature to avoid conflict and uncomfortable conversations. We talk endlessly about taxes and avoid the discussion around end of life planning. As professionals and leaders, we have a responsibility to plan for the major events in our lives and the lives of those we love.
Are we cowards, afraid of having this hard conversation? You bet.
End of life not just a difficult discussion for the average person, it’s a difficult conversation for medical professionals as well. To help encourage these conversations, tools and discussion points are available like the ones for physicians from the West Virginia Center for End of Life Care and the Department for Human Services.
No one wants to talk about end of life planning until its the middle of a crisis and you are grasping at straws.
Being proactive can minimize pain and suffering more than almost any other action you can take.
- What if you or your loved one becomes too ill to speak for yourself, or to understand the choices?
- Will you have to suffer needlessly?
- Will you end up in circumstances you wanted to avoid at all costs?
This is why we need to talk about end of life long before it becomes a reality.
Advanced Directives:
In the United States, Advanced Directives allow us to define our end of life wishes. They are not perfect, but they do help. Here are a few important facts to understand:
- Advance Directives never expire. Yours remains in effect until you change it.
- Advanced Directives are specific to a state and may not be valid in another state.
- Emergency medical technicians (EMTs) do not honor Advanced Directives. If you call an ambulance, emergency personnel must do what is necessary to stabilize a person for transfer to a hospital.
- You don’t need an attorney to complete an Advanced Directive.
Many of us over the age of 40 first deal with end of life discussions because of aging parents.
Even for families who have spoken about end of life wishes, we find that there are still uncertainties with regards to terms, interpretations, and timing.
Close to Home…My Parents
For example, I sat down with my parents on a hot Texas day in the hill country in Kerrville, the heat was exacerbated by the topic at hand and our awkwardness. We had never had an adult conversation about death and dying. We grabbed a glass of wine, a holy drink, and sat down to read their Advanced Directives and reality-tested what they really meant inside of these documents. Bad news, we were all miles apart. Good news, we were talking about it. Bad news, we limped through the conversation. Good news, I pried the remote control out of my Dad’s hands and we pushed forward.
Their Advanced Directives’ both said “no” to life-sustaining treatment, which means any medical treatment that is used to keep a person from dying. A breathing machine, CPR, and artificial nutrition and hydration are all examples of life-sustaining treatments.
When I asked my Dad what he meant by that, he clarified. He wanted us to give him all chances, and not withdraw support immediately. He only wanted us to remove such treatments after there was no “real chance” of recovery.
“Don’t give up on me too soon.”
My Mom was the opposite; she was so concerned about being a burden that she wants very little intervention, this breaks my heart because I know that I will be conflicted as I observe her wishes. These are her wishes after all, and I have a duty to follow her wishes.
So, please, don’t just have a cursory discussion. Take the time to fully understand someone’s wishes, reframe their comments and provide examples until you all agree that you’ve really got it.
Getting Started
Below are five tips to get started, I partially adapted these from the West Virginia End of Life physician discussion tool:
1. Set the Stage. No Surprises. Let your parent/spouse/significant other know that you’d like to discuss end of life. Here’s how you might bring up the subject:
“Mom can we talk about what’s important to you? I‘m concerned that I don’t really know the kind of care you would like. Could we talk about this Saturday morning? It would help me be prepared if something happened to you.”
No surprises, ask for permission to discuss.
2. Be prepared. When an emotional discussion starts, our minds often go blank. Write down in advance the items that you want to talk about, and take notes so that you can refine and reality-test the results.
Remember that this should be a caring discussion and not an inquisition. Smile warmly, nod reassuringly, be encouraging and focus on the person who is expressing his or her wishes.
Write down what you wish to discuss.
If you are uncertain how to get started, below are some questions to ask:
- If you were diagnosed with a life-limiting illness, what types of treatment would you like or not like? (Advanced Directive)
- Have you named someone to make decisions on your behalf if you become unable to do so? (Durable Power of Attorney)
- Are you wanting to age/spend your remaining days in your current home or do you want to move to an alternate setting?
- Do you have savings or insurance policies that can be used to fund these wishes?
- If you had just a few days left are there any unresolved conversations or actions that would need to be taken?
- How can I best honor your wishes and life?
3. Be ready. This conversation can go many ways, from very well to very badly. It may take multiple discussions to achieve clarity. Many people struggle with the topic of death and planning. When this is approached with true love and compassion, barriers break down and you can have a productive dialogue.
Be ready, be compassionate.
4. Summarize and document. Summarize what you are hearing and reality-test to make absolutely certain that you understand what your loved one means. We all feel better when we can hear someone describe what we want clearly and succinctly. This can remove some anxiety and make emotional times easier when the time comes to honor someone’s wishes.
Write everything down, because recall gets murky when the pressure rises.
5. Be honorable. I often hear stories of adult children who have placed a parent against their wishes in a facility when funds were available to honor the parent’s wishes. It is unconscionable to preserve an inheritance versus honoring someone’s wishes. My siblings and I have been clear with our parents – spend your money – live the life for which you’ve worked so hard.
Now is the time to start the conversation.
It’s critical to normalize death and dying so that we can best support those we love when they need it most.
Nancy C Everitt
There is a helpful game HELLO by Common Practice that can help start and move the discussion forward. Over 74% of individuals that play the game go on to complete an advanced directive. Advanced Directives are an important framework for end of life planning.
Time is racing forward whether we embrace this responsibility or not. The COVID-19 Pandemic has further emphasized our need for planning and for communication.
This may be the hardest discussion you’ll ever have, but it is also one of the most important and honorable things you will ever do.
About the Author: Nancy C Everitt, MBA, PMP, CAPS
Nancy C Everitt, MBA, PMP, CAPS is the Founder and CEO and HEOPS Inc and CENTIPEDE Care Solutions LLC. She is an industry expert on aging in place, managed care, value-based care, and health technology. N. Everitt is a TN Supreme Court trained Rule 31 Mediator, a certified Project Management Professional and has also received a Certified Aging in Place Specialist (CAPS) designation from the National Association of Home Builders. Nancy’s passion is helping to refine the ecosystem supporting the intersection of life, health, and assistance (help) so that people can live their best life at home surrounded by family and friends.