Finding Peace of Mind Now (and Later) with Discussing Your End of Life Care Wishes

Ben Franklin is known to have said that "but in this world nothing can be said to be certain, except death and taxes.” And just as we will pay our taxes on or before April 15th, the next day we recognize the importance of death, or at least, the importance of discussing End of Life care decisions.  

April 16th is the National Healthcare Decisions Day. 

This article will discuss a tool to let your wishes be known. I hope to persuade you to record your healthcare wishes for your loved ones, and to help them record their wishes.

There are understandable reasons to avoid 'The Conversation.' Death is a difficult topic to bring up, so we put it off to another day or never have the talk.

Just speaking in practical terms, when you decide not to have this conversation, you let someone else decide your level of comfort.

Did I say 'decide'?  I meant 'guess.'

That does not seem fair to you. After all, you have preferences.

Then consider being on the guessing end for a loved one who never expressed what they wanted at the end of life?  What if they told you, but you cannot remember because you are now scared and upset?  What if one family member disagrees with your memory of Mom's wishes and you cannot prove it?  Much of this stress can be avoided.

There can be a sense of dread, stress, and torment for someone trying to decide on behalf of a loved one.  Conversely, there can be a sense of comfort for a family when they can honor the wishes of a loved one.

A 2012 meta-synthesis of family interviews in the Journal of Hospice and Palliative Nursing by Jackson et al found "The discussion around Advanced Directives and End of Life preferences with family members prior to and during decline was strongly suggested by the majority of the families. Families did report that the more detailed the loved one's wishes were, the easier it was to make decisions at the end of life. The removal of the decision-making burden from families was noted as being one of the most important benefits of having Advanced Directives..." (Jackson 2012)

There are three common tools in advanced directives:

• Durable Healthcare Power of Attorney- Allows you to appoint who will make healthcare decisions when you are able. See an attorney for this service.

• Living Will - You can see my home state's document here. It's a government form. Need I say more? All kidding aside, take a look and compare it to my preference and focus...

• The Five Wishes document from Aging with Dignity- This is a wonderful document that I encourage everyone to consider completing to express their answers to 5 important questions:

1. Who is the person I want to make care decisions for me when I can't? (In legal terms - Durable Healthcare Power of Attorney)
2. What kind of medical treatment I want or do not want? (In legal terms- Living Will)
3. How comfortable do I want to be?
4. How do I want people to treat me?
5. What do I want my loved ones to know?

The Five Wishes is a rich guide to promoting discussion of some very meaningful decisions. Do I want my loved ones to pray by my bedside even when I am not awake? Sure! Had not occurred to me, but I'd love that. This document is accepted in 42 states (and D.C.), with 4 states requiring notarization.  The actual form does cost $5, but it's an invaluable guide and, the fee supports their mission of promoting advanced healthcare decision making. It can also be completed online. Two persons over 18 must sign as a witness to your Five Wishes, and there is a list of persons who cannot be witnesses (e.g. your doctor, a blood relative, spouse, or adopted child). Of course even with a Five  Wishes in place, there can still be some uncertainty. Having one will greatly reduce the uncertainty compared to not having one at all.

How did I complete the Five Wishes?

I completed my document with Post-It  Notes.  Over 7 days, I visited it once a day, making changes, replacing notes, and considering many options. In this process, I was able to brainstorm and not feel the pressure of completing the document in one day.  I spoke with my loved ones about my wishes, especially those who are named as healthcare decision-maker and the backup decision- makers.

Considering Your Loved Ones

While these are your choices, it is still important to consider the people who will help you carry out the wishes.  Remember your death is an emotional time for your loved ones who will do their best to carry out what you write down.  I tested some of my wishes.  For example, would my wife be upset that I preferred cremation?  Turns out she does not mind, but I would have reconsidered my choice if it bothered her. 

So here's a Blank Sample of the Five Wishes Document

Take Action

If you complete a 5 Wishes document, subscribe to the Peace with Dementia Blog, and email me that you have completed 5 Wishes by May 16, 2016, you will have a chance to win a $25 Amazon gift card. Your chances are probably very good! (No need to send your document)

If you feel this is worth sharing, please do so via email, Twitter, FaceBook, etc.

Interested in more info on Five Wishes?  Check out this interview with Aging in Dignity President, Mr. Paul Malley.

In the future, I will cover POLST  (LaPOST in Louisiana) for advanced stages of diseases. For now, the Five Wishes is something all of us over 18 should do.

NB: I have no affiliation with Aging with Dignity, publisher of Five Wishes. Just a big fan!

In Peace,

Matt

Follow me on Twitter @mwestrade PeaceWithDementia

Matt Estrade, MBA, CAPS is the Founder and Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here.

Literature cited:
Jackson, J., Derderian, L., White, P., Ayotte, J., Fiorini, J., Hall, R. O., & Shay, J. T. (2012). Family Perspectives on End-of-Life Care. Journal of Hospice & Palliative Nursing, 14(4), 303-311. doi:10.1097/njh.0b013e31824ea249