How to Have Conversations about End-of-Life Decisions

A medical crisis could occur at any age, leaving you or a loved one where healthcare decisions cannot be made. If a crisis does occur and your loved ones had to make end-of-life decisions for you, would they know what you want? If not, it is essential to have an end-of-life conversation with your loved ones so they are aware of your wishes, and take steps to ensure that those wishes are fulfilled.

These end-of-life conversations can be difficult, and often are avoided all together. Often, people delay these conversations because they feel they are:

• Too busy
• Too young to worry about it
• Too confused by the paperwork to complete end-of-life tasks

Fortunately, there are some steps you can take to make starting the conversation easier for everyone.

Think About What Is Important to You

How do you want the end of your life to look? This brainstorming exercise helps ensure all your needs are covered before diving into the official paperwork.

• Would you prefer to be actively involved in decisions about your care? Or would you rather have your doctors do what they think is best?
• Are there circumstances that you would consider worse than death? (Long-term need of a breathing machine or feeding tube, not being able to recognize your loved ones)
• Where do you want (or not want) to receive care? (Home, nursing facility, hospital)
• What kinds of aggressive treatment would you want (or not want)? (Resuscitation if your heart stops, breathing machine, feeding tube)
• When would it be okay to shift from a focus on curative care to a focus on comfort care alone?

Who Will Be Your Advocate When or If You Cannot Voice Your Own Decisions?

Choosing someone to speak for you to ensure your healthcare wishes are granted at end of life is a very important decision. Here are some tips to think about to help you with selecting your “Agent,” or durable power of attorney, for healthcare.

Questions to Help You Select Your Healthcare Agent

When choosing your healthcare agent, would your chosen advocate:

• Meet the legal criteria in your state for acting as agent or proxy or representative?
• Be willing to speak on your behalf?
• Be able to act on your wishes and separate his/her own feelings from yours?
• Live close by or be able to travel to be at your side if needed?
• Know you well and understand what’s important to you?
• Be someone you trust with your life?
• Talk with you now about sensitive issues and listen to your wishes?
• Be available long into the future?
• Be able to handle conflicting opinions between family members, friends, and medical personnel?
• Be a strong advocate in the face of an unresponsive doctor or institution?

Who Is Not Eligible to Become Your Agent?

Persons who cannot become a healthcare agent include:

• Anyone under age 18
• Your health care provider, including the owner or operator of a health or residential or community care facility serving you (unless this person is your spouse or close relative)
• An employee of your health care provider (unless this person is your spouse or close relative)

Communicating Your Healthcare Wishes

Initiating these end-of-life conversations can be most difficult. Here are some ways to “break the ice”:

• “I need your help with something.”
• “I was thinking about what happened to _____, and it made me realize…”
• “Even though I’m okay right now, I’m worried that _____ and I want to be prepared.”
• “I need to think about the future. Will you help me?”
• “I just answered some questions about how I want the end of my life to be. I want you to see my answers. And I’m wondering what your answers would be.”

If you still find it difficult to start these conversations, try to record your wishes through one of these medias:

• Writing a letter
• Tape Recording
• Video Recording

You can also download a conversation starter kit to help you get your thoughts together.

Look at Sample Letters for Inspiration

There are many sample letters available to help you get started. Below is a transcript of a sample letter:

“Don’t Panic- It’s Ok!

If you are faced with a decision that you’re not ready for, it’s ok.

I’ll try to let you know what I would want for various circumstances, but if you come to something we haven’t anticipated; it’s ok.

And if you come to a decision point and what you decide results in my death, it’s ok. You don’t need to worry that you’ve caused my death. YOU HAVEN’T. I will die because of my illness or my body failing or whatever. You don’t need to feel responsible.

Forgiveness is not required, but if you feel bad/responsible/guilty; first of all don’t, and second of all, you are loved and forgiven.

If you are faced with a snap decision, don’t panic- choose comfort, choose home, choose less intervention, choose to be together, at my side, holding my hand, singing, laughing, loving, celebrating, and carrying on. I will keep loving you and watching you, and being proud of you.”

-Karen Bourderua, MD, Senior Vice President, IHI

ConversationsProject.org

Letter to her family

For more information and assistance with Advance Care Planning please refer to:

• The Conversation Project Starter Kit
• Consumer’s Toolkit for Health Care Advance Planning
• Caringinfo.org

Want to Make An Appointment for Advance Care Planning?

Contact Bethesda Hospice Care at (314)-446-0623