Ann Allen, Heal Your Grief- Heal Your Life, and The Conversation Project’s Patty Webster teamed up this month to discuss the importance of having conversations about end-of-life care and wishes, especially in the context of grief. They explored how these discussions can bring clarity, connection, and empowerment, and highlighted the emotional and relational benefits of addressing grief and care wishes through ongoing, thoughtful conversations.

AA: Part of grief and healing is about reflecting on what is important to us and what matters to the people we are close to, and figuring out ways to support what matters. This is especially important in our health care through the end of life. Patty Webster agreed to talk with us today about how to approach conversations about what matters, for our life and for our health care.

I’m really happy that Patty has agreed to give us a unique insight into how to have a conversation about our wishes for care through the end of life.

Q1: I’m all about starting and having conversations around grief, and you and your team are all about starting and having conversations about care wishes through the end of life. We both know that legal considerations/documentation is often the thing that people feel need to be firmly in place for end-of-life wishes, but as far as emotional considerations, I would imagine this is often where people might get caught up? In your experience, what are the emotions to work through or focus on so we actually want to have these very important conversations?

PW: We definitely understand that navigating these talks can be emotional. And we know that having open conversations about your future care is a powerful way to show the important people in your life that you care. We suggest focusing on the positive emotions these talks can evoke.

• Clarity and Certainty: These conversations bring clarity and certainty for you and those who may need to speak up on your behalf someday, ensuring your wishes are known.
• Love & Connection: Open communication strengthens your bond and shows your love for your important people (a friend, partner, chosen family, etc.). Many share how these conversations help build positive relationships and healing.
• Empowerment: Taking charge and sharing what’s important to you about future care can offer a sense of control for a time when things are often unpredictable.

It can help to remember that this doesn’t need to be one big conversation – we suggest trying lots of little conversations over time.

Q2:  I’ve completed my Advance Directives and been as clear as I possibly could for now. I sure don’t want any ambiguity! What kind of assurances do you think can be realistically offered to people regarding autonomy and their wishes actually being upheld and met, and is that likely to be a challenge to prevent the conversation to begin?

PW: It’s important to understand that at the end of life, nothing can be certain! Thinking we can be assured a specific end of life can lead to even more grief for those left behind if something goes awry. So, we instead encourage people to create a values-based end of life plan to help serve as your north star, a guide. Similar to birth and birthing plans, we never know exactly what will happen in the moment so a plan with flexibility accompanied by conversations about it is critical.

Sometimes a hard and fast plan may not be feasible to carry out for many reasons. For example, we hear from many people, “My grandma said the only thing she wanted was to die at home and we just weren’t able to do that.” The grief surrounding that statement and ending is palpable. Instead, when someone says they want to die at home, we suggest you unpack what “home” represents by talking to your person. What is it about home the individual may want? Does your important person have a pet they want to see? Are they afraid no one will visit them? What are the values or feelings behind “home” that are most important to incorporate if the physical space isn’t an option? While home isn’t always medically, financially, or physically feasible, home-like can be. An example, the grandmother of my colleague was getting care at the hospital and noted she wanted to go home to die. When the nursing staff asked a little more about it, she said she just wanted to be with her cat at the end of life. And while it wasn’t physically feasible for her to be at home, they did the next best thing…they brought her cat to be with her!

This underscores the need and hopefully provides the motivation to start and have ongoing conversations about what matters most and why, the values behind decisions, to you or the people you care about and may care for you one day. It’s important to ensure the important people in your life (who may need to make decisions on your behalf) know what you value, what’s important to you and why, or what brings you comfort and vice versa. These value-based inputs ensure you have a say in your care and will help clinical-based decisions be made to the best of everyone’s ability.

Q3:   I love that you have templates for folks to use! While people actually want to discuss their wishes for care through the end of life, they often just don’t know where to start. What can we do to bump up the comfort level?

PW: First, we can learn from the wisdom and experiences of those who have gone through this. Often, the best place to start is through stories – reading/listening to and sharing something that may resonate with those you want to talk with can help jump start a conversation about your wishes through the end of life. Several guest bloggers have shared with us ways they’ve approached these conversations, including Anticipatory grief: Giving a name to the feeling and Grieving beneath the stars: Mourners as spiritual teachers. In this latter one, Chloe Zelkha, chaplain at UCSF Medical Center, shares this beautiful reflection, “I do know that to grieve is a courageous act. Chaplains are sometimes seen as “helpers” or even “fixers” for spiritual crises, but I saw myself as a student, sitting at the feet of the real masters. Our death-denying culture insists that we look away from mortality, look away from pain. But grief means being with things the way they are. It means seeing the beauty and heartbreak of living and dying up close. It means tasting the moment, just as it is. Mourners are awake.”

Second, you don’t have to go through this alone. The Conversation Project is your partner in having these important conversations and we have free resources to help you feel comfortable. We give people concrete examples of how to start. Like, “I need your help with something.” Or you might say, “I was reading this Q&A blog today and it really got me thinking about what we went through when ___ died, and it made me realize___. Can we talk a bit more about it?” We have this blog with more tips or this one to help someone else in your life. Our website and starter guides offer conversation starter tips and help you think about and talk about what matters to you. And, there are many other great resources and groups like Reimagine, who host community-led conversations to help people face adversity, loss, and mortality.

Remember, your voice matters. These conversations focus on your wishes and preferences for future care. And your voice now can help those you care about later. Start small – begin with manageable topics and gradually build on them over time.

Q4: What would you like to add from your own perspective that would be helpful for us all to know?

PW: These conversations can have emotional and relational benefits for both the person whose wishes we want to know and survivors. I can attest to this personally as my mom shared what was important to her in life and how she wanted to live her life through the end. She shared this early and often with my sisters and me when she was healthy. So, when an unexpected health crisis hit her at age 73, and we had to make end of life decisions on her behalf, we felt reassured that we were doing what mom would have wanted. We had her voice in our ears. It allowed us to focus our grief on our immense loss, not on the decisions we needed to make at the end. Now, my sisters and I are having conversations with my Dad and important caregiving conversations with each other. And I have these conversations about my own wishes with people close to me.

We can never eliminate grief, but we can work to make that grief less complex – and leave relationships intact and strengthened. Families experience significantly less stress, depression, and anxiety if they’ve talked about and done advance care planning before the end of life is near.

I see living/dying and joy/grief – as dance partners in a way. Sometimes living and joy are dancing away when joy gets tapped on the back and grief steps in. Same with dying. Dying and grief can be interrupted by joy, who steps in when we least suspect it. Talking about it now with those you care about surfaces these important emotions and allows us to explore and understand what’s important so we feel more prepared to lead when these dance partners arrive.