Have you heard about My Gift of Grace?
It’s a card game, of sorts, designed to help you talk about end-of-life decisions with your family and friends.
You might say, weird idea for a game, but I really love it.
Well-designed, attractive — it truly is the gift of a lifetime. But you can give this gift in many forms. Planning how you want to live until you die is a gift that keeps on giving.
In this season of celebration and feast, spirit and faith often draw us together. Time is spent with loved ones and gifts often are exchanged. I wonder — which gifts are you giving this year?
I’d like to give you a gift in honor of this season, taking advantage of times when we come together with those to whom we feel close. I’d like to help you think about how to do what My Gift of Grace does.
Express your love for family and friends. Value your life. Do it by using My Gift of Grace or anything else that will help you talk about how you want to live until the end of your life.
Call it end-of-life planning, call it an advance directive, call it a plan for living well. I’ll call it end-of-life planning here, just because it is easiest. But, whatever you call it, do it this season and at least every holiday season for the years to come.
Wait! Don’t close your browser or turn the page. Hear me out. Talking about living your life the way you want to the very end is a subject often blocked so completely by myths that none of us actually do it. These myths are about what end-of-life planning actually is and what it is not.
Myth: We should all plan our deaths.
Truth is, many Americans will talk about death if someone asks them. For example, most say we wish to die at home. In reality, we more often die in hospitals or nursing homes. Dying in an institution sometimes happens because there was no end-of-life planning.
How we talk about death is general and distant. Some point in the future; specifics not defined. We can talk about what we value in a general sense but not in a way that is personalized to our lives. General talk about death is just not very useful when we come to the end of our lives.
In real life, the specifics of our situations develop over time. We don’t know the diseases and conditions that will limit our lives. The specific details and the circumstances of the end of our lives are yet to be known when we answer questions like “where do you want to die?” in a survey. So, when the real situation is upon us, time becomes precious and decisions about how we wish to live press on us.
My Gift of Grace recognizes the way to plan for death is not to think about the death part much at all. Understanding how you hope to die is about knowing how you wish to live.
Here’s the thing. We care about how we live, what we do and who we love. Thinking about dying and death makes it hard to think about what we value most because we often become emotional and upset at the thought it will be gone.
So what we should plan is the living. Living until we die: what is most important to us; what is less important to us; situations that are acceptable; situations that are not acceptable. That’s the plan I am talking about.
Myth: End of life planning works only when death is imminent.
Many Americans believe that end of life planning is good when it is obvious that you need to plan for death. The time for planning is not to start when you think death is around the corner. Becoming aware that your life is coming to an end is a painful situation. Some make the best of it and live each day as the saying goes “as though it were our last.” Others just can’t manage that composure.
Waiting to plan how you want to live until the end of your life is like waiting until your car conks out on the interstate and remembering that routine maintenance you promised. It isn’t going to help very much.
Not doing end of life planning is like not having a maintenance plan and service options. It means you don’t have a head start when a crisis happens. A crisis happens and you have a life threatening situation? Then you have to cover a lot with your family, friends, and your healthcare team. Playing catch up in that crisis and trying to think through what is most important in your life is really difficult.
Make end of life planning easier for yourself and those you love. Start early this holiday season. Begin by making end of life planning a conversation, not a crisis, and return to that conversation as often as needed.
Myth: End of life planning applies only when you are old enough.
The older we are, the more likely we are to die. Human life is finite. We all will die. But older people don’t have to plan the end of their lives. That’s like assuming that once you get to a certain age, you just accept death.
Making old age and acceptance of death the mark for end of life planning misses the mark. What we are trying to do in planning the way we wish to live right to the end of our lives is to avoid the situation where we have to endure events that are not what we want. Those events might be symptoms like pain and breathlessness, medical treatments like surgery or medications, or living with changes to our minds and bodies.
End of life planning works best when you start early. It works when you start by thinking about your life now, how you are living, and what is most important to you.
Everyone one of us — young adults and those of us who are older — benefits when the conversation about what is important in our lives and how we want to live is shared. End of life planning is not about just one of us declaring our wishes. It is about all of us — in a family or a group of friends who are like family — sharing our wishes for living until we die.
Myth: You are stuck with a plan once you make it.
Most of us think about end of life planning as something that you do and then write down in a legal document like a living will. The combination of creating a plan and making it legal is a pretty intimidating. Only about 20 or 30 percent of us have those written documents like living wills or advance directives and include the even more legal sounding Durable Power of Attorney for Healthcare.
Who wants to make the biggest life decision of all and feel held to it no matter what? Nobody I know. Things change. We change as people and life changes too.
When death is near and next to no time is left for living, declaring your wishes in an advance directive can help make it a little more bearable.
But why be in that situation if you can avoid it? The idea behind My Gift of Grace is the true plan resides with the loved one you charge with knowing your plan and speaking for you if you cannot speak. That plan comes about when the conversations that My Gift of Grace uses happen.
It is good to record your plan in a document like a living will, a durable power of attorney, or a tool like Five Wishes http://www.agingwithdignity.org/five-wishes.php . But know that you can change the document.
Find the life in end of life planning and start a conversation with those you love. My wish for you is that you never experience a crisis that requires using the plan. But I’ll be glad if you do need it that you have an end of life plan for living until you die.
To find my “My Gift of Grace” go to http://www.kickstarter.com/projects/actionmill/my-gift-of-grace.
Dr. Sarah Kagan is a professor at the University of Pennsylvania School of Nursing where she specializes in geriatric issues and the care of older people. She is a visiting scholar at universities around the world and was awarded the John D. and Catherine T. MacArthur Fellowship for her work. Her column on aging myths appears in newspapers and on digital sites throughout Calkins Media. Contact her at firstname.lastname@example.org or on Twitter @SarahHKagan.