Talking About End-of-Life Decisions Won't Kill You
Five tips for starting end-of-life conversations
Long before she died, my mother gave me a gift that would shape both my future and her remaining years: A frank conversation about her wishes for the end of her life.
Thanks to this, many years later when congestive heart failure and emphysema threatened my mother’s life, I knew beyond a shadow of doubt that under no circumstances would she accept extraordinary measures of any sort to keep her alive should she ever reach a point where they’d be considered. No feeding tubes, no mechanical ventilation, no heroic attempts to outsmart mortality at the price of her dignity or comfort.
I even knew — because I’d asked — that if she were dying, it would be OK with her if I cried, which was a big deal because my mother was stoic and never much approved of tears.
Today, I’m at peace knowing that our conversation, held more than a decade before it became relevant in any way, gave my mother the opportunity to have a good death — one couched not in machinery and pain, but in life and love.
What Is A Good Death?
The term a “good death” might seem like an oxymoron. But in this age of ubiquitous end-of-life medical intervention, the last few days, weeks or even months of life can be utterly miserable, filled with one uncomfortable and humiliating attempt after another by medical professionals to prolong life for however long or short a time as they can.
That scenario is aptly described by Ellen Goodman in The New York Times as a “hard death.” On the contrary, Goodman defines a “good death” as one in which someone’s wishes are expressed and respected.
In my opinion, the concept of a good death also goes hand in hand with spending one’s final stretch of time on this earth as comfortably as possible, in circumstances that are as stress-free as possible, surrounded by those who give one’s life meaning.
A good death is unlikely to happen, though, without an advance conversation about end-of-life decisions and preferences like the one my mom and I had. Oxygen mask? Check. Mechanical respirator? No thanks. Living with paralysis or brain damage? Absolutely not.
While it sounds sensible enough, the trouble is that there’s an overwhelming tendency in our otherwise expressive culture to avoid the terrifying topics of dying and death altogether. As if talking about death might actually kill us.
What a misconception.
Talking about end-of-life issues is an expression of love and an opportunity for closeness. Through my experience caring for my mother during her final years and my work as a professional grief and bereavement counselor, I have seen that, in fact, by confronting the topic of death and talking about it, we come to appreciate the extraordinary everyday moments of our lives.
Caretakers Can Spark Deep Conversation
On a pragmatic level, there’s the planning element that conversations about death make possible. The awareness of what a loved one wants and doesn’t want at the end of life enables those of us in caretaking roles to take whatever steps we can to ensure that those wishes are respected. If the conversation never takes place, the strong likelihood is that doctors and nurses who may have only met our loved one near the end are the ones who will choose a course of action — and often that choice is to continue medical interventions that only serve to prolong suffering and traumatize family members.
Yet, there’s another level that goes far beyond the pragmatic, resonating deeply with the many issues death forces us to confront. For in talking about death, we are forced to look inward and contemplate who we truly are as human beings. This brings us perspective and helps us to remain honest in setting our life’s priorities and to make choices wisely. It sheds light on the meaning of our relationships and strengthens the bonds we share with those with whom we’re holding these conversations. Death is a topic that’s fundamental to us all.
This doesn’t mean that the conversation will be easy. Chances are, it won’t be. But with the right touch, it can be a lot less painful than you might think. Bringing with you a document called Five Wishes will help guide the conversation.
Tips To Get Started
In addition, here are five tips I recommend for getting the conversation started on the right note:
- Use a tone of curiosity rather than fear. For example, say, “I’m really curious about how you imagine the last phase of your life.”
- To break the ice, couch the conversation in an anecdote about your own wishes. For example: “I’ve been giving some thought as to what my wishes might be toward the end of my life and wonder what you think about this. These are my wishes. What are yours?”
- Acknowledge any potential awkward feelings by saying, “I know this is a conversation you don’t really want to have, but it’s important. I’m here, and I’ll stick with you through the discomfort.”
- Explain that having this conversation is important for both of you and that by talking about it, you can avoid having things happen that he or she is afraid of.
- If you are still facing reluctance, explain that having this conversation is the only way your loved one can have a voice in, and be part of, the decision-making process about the end of his or her life.
When I raised the topic with my mother, rather than break the ice by talking about my own wishes, I mentioned that I’d been learning about some of the issues in my degree program. At the time, I was studying to become a psychologist specializing in death, dying and bereavement. Although not everybody has the same advantage, an alternative is to lead in using anecdotes about friends.
No matter how you kick things off, bear in mind that if there’s one thing conversations about death have in common, it’s that no two are the same.
Don’t be married to a specific outcome or try to steer the conversation in a particular direction. The most important thing you can do once a conversation is underway is to simply listen and pay attention. And when you respond, remember that this particular conversation is about your loved one, not about you — then speak from your heart.