In episode 9 of The Caregiving Soul, Dannelle speaks with C. Grace Whiting about initiating difficult conversations about your medical needs and planning for later in life.
Based on the work of The Conversation Project, which is an organization that helps people talk about their wishes for care through the end of life, as well as based on our own experiences, we know these discussions can be very difficult and overwhelming to initiate and to receive. So, let's go through it in steps.
Step One: Think about what matters.
Start with good questions, which may include, “What does a good day look like?” Is it quality time with loved ones or doing certain activities or even creating a certain environment? This helps us to better understand how our loved ones would like to spend their day.
We can also ask, “What does support look like in hard times?” Is it going to your place of worship or spending time with family or friends? The answer can help give insight into what our loved one feels they need most when life is hard.
We can also ask, “What matters most in life for you right now?” As well as “What matters most through the end of life?” It could be the question of what do you want your family and others to understand about you? Consider what the priorities are when imagining what a good death looks like.
Step 2: Plan Your Talk
It's so important for all of us to have a say in our care. While certain circumstances may not allow all requests to be honored, conversations can give us a stronger understanding and greater certainty in honoring our loved one's wishes. And frankly, it's not going to happen in one conversation.
This is an ongoing conversation so that we can better understand how much our loved one wants/needs to know about potential diagnoses and conditions; how involved they want to be in their medical decisions, who gets to be involved in making decisions on their behalf, as well as concerns about potential interventional treatments.
Step 3: Start Talking
Regardless of whether or not we have a close relationship with our care partner, it's just not possible for us to know everything unless we ask. Clarity helps give peace of mind.
Think about some of the preparations to have these conversations and where would they feel most comfortable having this kind of discussion. Such as, who would our loved one like to have these conversations with? Who else should be in the room? Make a clear decision about when you would like to hold this conversation and write out a list of the most important things to cover.
We can always practice having conversations to feel better prepared. The more we talk about it, the more informed decisions we can make.
Step 4: Keep Talking
When we make the courageous and important decision of initiating these conversations, keep going! Who else might need to be part of the conversation? As we continue to ask questions and listen, we build confidence that we understand what matters most for our loved one.
Reflect on past conversations and decide when you would like to speak again, what might be important to revisit or clarify and what might be important to cover in the next conversation.
For more information on having these conversations, check out The Conversation Project. There you can download their free conversation guides to provide even more guidance for these conversations.
With extensive experience in the nonprofit sector, Grace is a mission-driven leader with a commitment to make the world a more caring place. She is an expert in long-term care and health policy and has served as a resource for Members of the U.S. Congress, national and global advisory boards, and media such as the New York Times and CSPAN. Grace joins NAELA from the National Alliance for Caregiving, most recently serving as President/CEO. Grace also worked at the Alliance for Home Health Quality and Innovation and Leaders Engaged on Alzheimer’s Disease. Grace earned her JD from the University of Memphis School of Law. There, she helped launch an Alternative Spring Break and received the Memphis Bar Association’s Irvin Bogatin Public Service Award. A graduate of Louisiana State University, Grace started her career at the Louisiana Family Recovery Corps, which led hurricane recovery efforts. She lives in Maryland with her husband, writer Geoffrey and distinguished pug, Chief Justice.
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