Talking to your family about your wishes is important.

Navigating the Last Chapter of Your Life

Published Date: 2019-03-18

I recently had lunch with a colleague who works within Beebe’s Palliative Care department.  We were discussing palliative care and end of life planning and she said, “I refer to it as Advanced Illness Planning.” This really struck me.

We spend so much of our life “planning” for big events. We plan for college, we plan for a wedding, we plan for a having a baby… But, do we plan for death?

There are many uncertainties in life, but the one thing we all know is eventually it will end in death. This is especially true when diagnosed with a serious “advanced” illness. Why wouldn’t we want some say and control in how our last moments are spent?

These are difficult discussions for families, but so important.  As an ICU nurse, I was often at the bedside with families trying to make extremely tough decisions regarding care for a loved one. Families that had these discussions before the illness progressed or had created and shared an Advanced Health Directive with their family, had a much easier time with their decision. They knew they were following the wishes of their loved one. They were able to find peace in being the voice of the family member who could no longer speak for themselves. 

There is more to Advanced Illness Planning than just the last few minutes of one’s life. Planning allows people to develop a timeline. It allows them to “cross a few more things off the bucket list.” It allows families to prioritize what is important and what is not. 

These plans are unique and different for everyone. There is not a “one size fits all’ end of life or advanced illness plan. So, I challenge you to have these discussion with your family and loved ones.  Here are Five Things to consider when Advanced Care Planning:

  1. Choose a Healthcare Representative: This is the person you want to be your voice if you can no longer make medical decisions for yourself. Make sure you choose someone you trust who will follow out your wishes. 
  2. Create an Advanced Directive (also referred to as A Living Will): This allows you to document your wishes concerning medical treatments at the end of life. These are legally valid documents, but do not need to be completed by a lawyer. The laws surrounding advanced directives can differ state to state, so it is important to update this document if you move to another state.  These documents do not expire, so it is important to update your wishes if your health condition changes.
  3. Get your affairs in order: If something were to happen to you tomorrow, does your spouse or family know the password to your online bank account? I know if something happened to me, my husband wouldn’t know where to start because I handle all of the finances in our house. I thought of this when I was pregnant with my second child. I made a list of all the usernames and passwords he would need (which I should probably update now that I think of it!), placed a copy of all of our important papers, including our life insurance policies, legal documents, etc., in a fireproof safe. I told him that if anything happened to me during childbirth he would know where to find everything. 
  4. Develop a timeline and prioritize what is important: Everyone has some sort of “bucket list” whether it is actually written down, or just in their head. Think about what you want to do before you die or before you are too sick. Is there a vacation you want to take, an activity you want to try, or maybe a person you need to make amends with? Whatever it is that is important to you, make it a priority. 
  5. Look for meaning: This is a very personal piece of Advanced Care Planning. Reflecting back on who we are, the life we have lived, and the footprint we have made on this earth can be extremely emotional. It is also a time when many may want to find some sort of spiritual connection. Once again, this a personal experience and may look different from person to person. 

There are a lot of great resources and tools on the web for Advanced Care Planning.  Here are a few to check out:

National Institute on Aging: https://www.nia.nih.gov/health/caregiving/advance-care-planning

Centers for Disease Control: https://www.cdc.gov/aging/advancecareplanning/index.htm

Eldercare Locator and the Conversation Project: https://eldercare.acl.gov/Public/Resources/Brochures/docs/Conversations.pdf

National Hospice and Palliative Care Organization: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=1&pageid=3267