Difficult Conversations Can Be Some of the Most Important

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Making Your End-of-Life Wishes Known

Author: Karen Raley Steffens, RN, CHPN, CCM
ALS Support Services Coordinator

“You may not control life’s circumstances but getting to be the author of your life means getting to control what you do with them.”  

-Atul Gawande, Being Mortal: Medicine and What Matters in the End

Decisions about end-of-life care are deeply personal and are based on your values and beliefs. Talking with your loved ones, your healthcare providers, and even your friends are all important steps to making your wishes known. These conversations will help relieve loved ones and healthcare providers of the need to guess what you would want if you are ever facing a healthcare or medical crisis.  Being prepared is important but even more so in this time of COVID-19.  During these challenging times, there are so many things that are out of our control, but this is something you can control, both for yourself and for those you love.

Your Clinical Team at the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine as well as your Support Services Team with the Les Turner ALS Foundation, are here to help support and guide you with difficult conversations and written wishes.

Did you know (source: Conversation Project):

  • 97% of people say it’s important to put their wishes in writing. But only 37% have done so.
  • 21% of people say they haven’t had the conversation because they don’t want to upset their loved ones. However; 95% say they are willing or want to talk about their end-of-life wishes – and 53% said they’d actually be relieved if a loved one started the conversation.

Having the conversation is the first step, and when you and your family can have frank conversations, often the grieving process becomes less painful.  A wonderful place to start this process is at www.theconversationproject.org. Here you will find a wealth of resources and tool kits to help guide you in having this very important conversation.  But just talking isn’t enough, if your wishes aren’t documented, they can’t be honored.

As part of your end-of-life wishes, you will want an advance directive, a form in which you: (1) appoint a person or persons to make healthcare decisions for you if or when you lose the capacity to make healthcare decisions (typically called a “health care power of attorney”); and (2) provide guidance or instructions for making healthcare decisions, typically in end-of-life care situations (often called a “living will”).  An advance directive is a direction from you, not a medical order.

The other form you will want to have executed, which is especially important for terminally ill patients, is the Do Not Resuscitate/Do Not Intubate (DNR/DNI).  In the State of Illinois, a Physician Orders for Life-Sustaining Treatment (POLST) form is used and consists of a set of medical orders that addresses a limited number of critical medical decisions. The form is intended as a complement to advance directives by serving as a translational tool and an assurance of continuity of care. For more information regarding the POLST form, go to www.polst.org.

In addition, there are wonderful resources on the Illinois Medical Society’s website: https://www.isms.org/Resources/For_Physicians/Advance_Directives_Resources/. All the necessary forms that need to be completed are located there. On the site, you can also download a booklet entitled “A Personal Decision” where you will find valuable information and guidance regarding end-of-life choices and preparation of your advance directives and POLST.