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The Conversations We Aren’t Having: Part I–Health and End of Life

 This post and the hashtag discussion at #EOLchat were inspired by conversations generated in several Twitter chat communities (hat tip to  #hcsm, #hpm, & #bcsm) and by the incredible resource of the National Healthcare Decisions Day (NHDD) initiative.  These are communities that are dedicated to increasing communication and education between health care providers, and health care consumers.  One theme that I noticed is a sense that there are certain conversations that feel very challenging.

This theme comes up a lot in therapy.  Some of us aren’t comfortable having conversations where we reveal and explore our anger.  Some of us avoid talking about the things that make us feel helpless.  Almost all of us have at least a little resistance towards talking about death.  There are lots of conversations that we aren’t having.  Part of my role in therapy is to encourage and facilitate those conversations.

This is a huge topic, and there are several directions I could go with it.  I don’t want to weigh you down with a five-page post, so I’m going to look at one type of conversation per post.  For this post, which as I mentioned, was inspired by the NHDD initiative, I’m going to take on one of the big conversations that we aren’t having: major health decisions, including end of life planning.

Why We Don’t Talk

From my own experience, and from the data I’ve gathered in my practice, I think that the primary reason that we aren’t having conversations is because the topics of these conversations are things that we’re afraid of.  It is a pretty common human response to avoid things that are scary–we start this as kids when we hide from the monster under the bed.   If we can’t see it, don’t talk about it, don’t acknowledge it, then it isn’t real.  It can’t hurt us.  We can stay safe.

The second big reason that we don’t have these conversations is that they feel pretty overwhelming.  We may not feel as though we have the tools, practical or emotional, to take on the big issues.  We may not know how to approach a big conversation.  We may need more information.  We may not understand all of the language that’s involved in health decisions.  We may be unsure about the responses from those people around us.

When the big issue is major health decisions, particularly those around death and dying, I think that one of the reasons that people don’t have the conversations is that we haven’t found ways to make them “normal” in our daily, healthy lives.  All too often, I deal with family members or caregivers who have had to make unexpected, heart-wrenching decisions–because there was no conversation until a health crisis was actually happening.  We don’t think we’ll have to make life-support decisions for someone in their 20’s or 30’s.  But strokes, cancer, car accidents–these are things that happen to people of all ages.

I know that these conversations are tough to start.  People have a wide range of reactions to talking about their health, their plans, their wishes.  End of life discussions can feel particularly overwhelming.  In general, we spend a lot of time and effort trying to be in control in our lives.  Ultimately, each of us is going to die.  We don’t get to control that–and we may not have much input into how or when it happens.  Those are hard realities to wrap our brains around.  They feel really uncomfortable for most people, and so we just avoid the conversation all together.

This can be even more complicated if conversations don’t happen until after someone has received a serious diagnosis.  Most patients and families want to put their time and emotional energy into trying to fight for health.  Talking about living wills, healthcare powers of attorney, and similar issues can be seen as “giving up.”  From my perspective, that makes it even more important to begin talking about healthcare decisions long before it feels like we “need to.”

Why We Should Talk

In fact, I know that some readers may be wondering why I’m writing a post that may seem to be a “negative topic.”  Why am I asking you to think about health and dying?  Why am I encouraging you to do more than think–in fact, to learn, to talk, and to be pro-active?  Like I said before, part of my job as a psychologist is to facilitate these conversations.  My goal with this post is to invite you to explore your reaction.  When I wrote that we would each die, did you want to stop reading?  Did that feel frightening, or negative, or intrusive?  If it did, I hope you’re still reading, and I hope that you’re able to hang in there as you try to understand those responses.

The more we are able to talk about the things that we fear, the less power they possess.  When we’re talking about health and dying, the conversation allows us to begin to focus on what is under our control.  We may not control when or how we die, but we can control how our health choices get made.  We can control how many decisions we’ve made and shared early on, so that our loved ones aren’t carrying the burden of making our decisions for us.  We can increase our own knowledge and sense of empowerment, so we don’t feel overwhelmed by the medical system.

And, ultimately, when we talk about health issues–including death, the conversation becomes an exploration of our hopes and our values.  It focuses us on what we want and what we value.  We may be talking about plans for dying, but that leads to a celebration of living.  It reminds us to cherish our loved ones, to enjoy them, to be clear about how we spend our time.  So, while at first blush, this might seem like a “negative topic,” I firmly believe that if we have the courage to engage it, we create more space, freedom, and connection in our lives.

How to Get the Conversation Started

That’s one of the reasons that I was so excited by the NHDD resources*.  NHDD is a grass-roots initiative.  It’s driven by the desire to address some of the primary reasons that people don’t talk about healthcare decisions.

  • First, it addresses some of the practical issues.  Their website clearly defines terms that can get pretty confusing,  They walk through some of the steps that people of any income level can take to clarify their wishes and plans.  If you spend some time familiarizing yourself with these resources, the conversation will begin to feel less foreign, less overwhelming.
  • Second, by creating a specific day where families are encouraged to have these talks (April 16th), NHDD begins to create a space for us to have these conversations.  With space and repetition, talking about health–including talking about death and dying–can start to feel normal.
  • Finally, when we have the structure in place to normalize these talks, we can actually start to feel less fear and anxiety.  Consistently, confronting the things that we’re afraid of, taking concrete action to take control in the ways that we can, increasing the amount that we are able to understand and talk about–all of these things lessen our fear.

Those resources are a great start, but sometimes it takes the help of a family friend, pastor, or therapist to get these conversations started.  I hope that you feel inspired to reach out and start talking.  If you’ve hung in with me through a tough post, I’m so grateful.  If the post inspires questions, and conversations, that’s even better.  If there’s something that I can explain to you, ask!  I’m thrilled to talk about it.  Please let me know in the comments.

 

*Disclaimer: I’m not connected in any way with the NHDD initiative (except that I follow them on Twitter and I’ve used their resources).  I included their links because I think they’ve put together a great set of resources–I hope you think so too.

**Photo Credit: Me 🙂

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