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Who will speak for you?

by | Jun 19, 2020 | Article, Stories | 0 comments

As Bill and I contemplate what our ideal end of life situations would be, we realize that whatever we do is not just for us, but most importantly for our children and loved ones. I find myself reflecting on how life invariably moves quickly through stages of child, youth, adult, and elder…finding that the journey has gone way too fast. Remember the Seeger song with the line, “Wish I didn’t know now what I didn’t know then?” Seems that is coming to mind more and more often these days.

And it also seems like just yesterday when my three siblings and I sat in the Emergency Room with our unconscious mother as we contemplated whether to allow the surgeons to operate on her (it’s been over 19 years). They told us that the outcomes could be one where she wouldn’t recover or would be attached to machines to artificially sustain her life. While we all knew that she did not want to be kept alive if there wasn’t a chance to continue a functioning, meaningful life, her wishes were vague enough that we found ourselves in a grey zone where clear, precise steps were not available. We were on our own to weigh the what ifs and the consequences. And all the while we talked – over five hours – we never wavered from our love and support for each other as we debated, argued, shared our doubts, and cried. The ending is one left unsaid for the moment; my point in raising this story is to make sure that you – as a mother, father, child, or close relative or friend – have that conversation to help prepare for that moment when a loved one needs you to speak for them.

So, these suggestions are for aging parents: Prepare your children and loved ones. It’s often said that an Advanced Directive is your last gift to them; I know this to be true. Here are some thoughts as you get ready to bring up the topic.

  • Make the time – it can take several conversations;
  • Start the conversation with agreement – find commonly held beliefs and values that your children can agree on;
  • Expect diverse thoughts – your children may have different philosophies, different needs. Unanimity and agreement take time to develop through conversation;
  • Use the sometimes-lost art of listening and confirm that each person’s thoughts are important and valid. At the same time, remember, ultimately, they are your wishes, not someone else’s
  • Sibling dynamics will be magnified. If there is any discord, it’s not unlikely that this topic could create tension. Prepare to make it clear that any differences should be put aside to meet your wishes;

Then from those conversations, put your wishes in writing. Clarity and conviction come from words written down.

This is not intended to be an exhaustive list of suggestions; just a few to help those who struggle with getting started. Believe me, in the long run it’s worth it.

Our main events were a Lunch & Learn series where we explored a variety of familiar and new topics. We started with an introduction of our new Executive Director, Heather Thonvold, who shared about their visions for Honoring Choices into the future. This includes a much-anticipated rollout, soon to come, of the new Honoring Choices long form health care directive, revised for the first time since 2014. Other organizational goals include building a stronger presence across the state and increasing access to advance care planning resources for Minnesotans of all identities and needs.

Next up, Lynn MacKenzie, our Community Engagement Specialist, presented a play she wrote and produced to help inspire creative and open conversations around advance care planning: An Almost Murder Mystery. As one participant noted, “through the theatrical portrayal of informing the public about the need to complete advance directives, I learned to think outside the box about the many other ways to discuss the topic with patients and families.” Let us know if you’d like to bring An Almost Murder Mystery to your community!

Lynn also presented an ACP 101 presentation – a great introduction to advance care planning, health care directives, choosing a health care agent, having the conversation, and more. This presentation is available to be tailored to your organization – reach out if you’re in need of one of our speakers to bring this valuable information to your community or workplace.

Lastly, we brought in two of our National Network member organizations to speak about the kind of ACP work they are doing in their home states and the value of this national partnership group, which provides member organizations the ability to connect on national/universal issues and bring the knowledge back to respond appropriately to state specific needs. Eleanor Jones of Honoring Choices Virginia shared about their innovative work in creating and supporting intersectional mental health advance care planning resources from the grassroots to the systems and state level. Ellen DiPaola of Honoring Choices Massachusetts shared about the tools they have developed to promote and support individuals and care providers in continuous and effective advance care planning throughout the lifespan. Both Eleanor and Ellen welcome connections from those interested in learning more about their work, adapting their tools, and collaborating. Please reach out – and if you are from a state that is not yet part of the network, be in touch! We want to work with you.

We are grateful for your participation this month – and for all you do to promote advance care planning in your world. Lunch & Learn presenter Eleanor Jones may have put it best when she said, “There’s a huge gap between what folks can do and what they understand they can do, which is why we all exist as Honoring Choices in our states: to close these gaps.” Honoring Choices is dedicated to helping you understand how you can become an active participant in your own health care, throughout your life – and know what resources are available for you to do that well.

If this information impacted you this month, or you have ever found use of Honoring Choices’ tools, documents, or presentations – please consider making a donation so that we can continue doing this important work. You can also support us by joining us on Saturday, May 19 from 12-5 at Fat Pants Brewing in Edina, MN, where $1 from every pint sold will go to support Honoring Choices. See you there!

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