All of us live in a bubble, an illusion of safety and security that our lives will continue along a single, set trajectory of our own choosing. Sadly, life is rarely cooperative. We hit bumps in our relationship. Our bodies become the victims of a disease. We get into a car accident. We lose a friend.
One of the hardest conversations to have with someone is when something happens that compromises a person’s health. It could be cancer, it could be an auto accident or some other injury. Or it could be the result of simply aging and getting to a point where your body starts to give out. How does the person want the last days of their life to be?
How do you have the hardest conversation about dying — and dying well — with a loved one?
In today’s society, we rarely take a moment out of the day to just be with ourselves. I suspect that’s why mindfulness and meditation techniques are increasingly popular — we yearn to just “be” for a time. Away from technology, away from social media, away from the demands everyone else places on us.
This is one of those moments in life you need to make time for. Special, quiet time with no distractions, the phone put away, the TV off.
As Atul Gawande says in his extraordinary book, Being Mortal, “Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.”
“You’re not determining whether they want treatment X versus Y,” he goes on to say. “You’re trying to learn what’s most important to them under the circumstances — so that you can provide information and advice on the approach that gives them their best chance of achieving it.” He emphasizes that this conversation is as much about listening as it is about giving information or advice.
Gawande takes the questions he’s learned to ask his dying patients from Susan Block, a palliative care specialist. The questions include:
- What do you understand your prognosis to be?
- What are your concerns about what lies ahead?
- What kind of trade-offs are you willing to make?
- How do you want to spend your time if your health worsens?
- Who do you want to make decisions for you if you become incapacitated or can’t?
What it boils down to is this: Given your situation, and if time becomes short, what do you truly want? Do you want your last days of your life in a generic, cold hospital room hooked up to so many machines you can’t even talk? Or do you want something else, like a good death?
How much do you want to go through to have a shot at staying alive? What level of pain or disability is tolerable to you?1
Why It’s Important to Have This Conversation Now
We often put off difficult conversations like this until it’s too late to have them. “Oh, there’ll always be time later.” No, there won’t always be. Sometimes these things happen fast, and if you didn’t have the conversation with the person beforehand, you may not have the opportunity to do so if they’re unconscious and need decisions made for them.
Because let’s face it, doctors know how to do one thing very well — provide treatment. They don’t often know when to stop and say, “Well, I can’t do anything else to help.” Whether it’s the result of a car accident or cancer, doctors just don’t always know when to say enough’s enough. And as Gawande’s book makes clear, they rarely provide an accurate estimate of the benefits and risks of treatment (one study puts doctors’ over-estimation of the benefits of treatment at 500 percent!).
That’s where this conversation comes in.
If you’ve had this conversation with a loved one ahead of time, you can be there to make the decisions they want made.
And while it should go without saying, I’ll say it anyways — don’t ever substitute a doctor’s optimism and experience for your loved one’s decisions. Don’t substitute your own judgment or selfish wishes for your loved one’s decisions. If you have any respect for your loved one, you will ensure their decision is the final word on what is to be done for them in treatment.
For Further Reading…
If you haven’t yet read it, I highly recommend Atul Gawande’s book, Being Mortal: Medicine and What Matters in the End. It’ll likely change the way you think about dying and what matters most to you.
- If you can’t remember the responses, write them down while your loved one is sharing them with you. It’s important to get their wishes right, and not substitute your wishes in place of your bad memory. [↩]