When I was in my early 20s, my mom was diagnosed with cancer. It felt like a one-two punch, since my dad had died unexpectedly a few years earlier. Although Mom tried chemotherapy, the results seemed to suggest that this was going to end badly, which it did — less than six months later.
During that time, her life became a mere shadow of what it once was. And yet no one, including her doctors, myself or my mom, ever talked about what was happening.
Only in the last few days did her doctor suggest to me, not her, that we were reaching the end of this painful road. And then he asked if I thought she’d be more comfortable at home or in the hospital. I remember how angry I was, unprepared to make this decision and wanting to scream, “Why are you asking me?” But of course when I got older, I realized the real question was why hadn’t any of us asked her?
Struggling With End-of-Life Decisions
I’m sharing this story because many years later, I find myself struggling to put my own end-of-life choices on paper through an advance care directive. And I’m not sure why.
I don’t like uncertainty. In fact, I’m all about control. It makes me uncomfortable when others speak for me. So why am I handing off these decisions that are clearly mine to make?
When we let fear or anxiety stop us, we’re just shifting the responsibility to others. By default, we decide that they are the ones who will one day make the decisions for us.
Apparently, a lot of you are here with me. According to research, 90 percent say talking with loved ones about end-of-life care is important, but just 27 percent have done so. Only 7 percent have had this conversation with their doctor and less than a quarter of us have put our wishes in writing, although 82 percent say it’s important.
As we grow older, most of us say we want control over our lives, so why is this where we draw the line? When we let fear or anxiety stop us, we’re just shifting the responsibility to others. By default, we decide that they are the ones who will one day make the decisions for us.
Why We Delay the Inevitable
For one thing, advance directives are easy not to do, says advance care planning consultant Jane Markley of M Jane Markley Consulting. “Completing these types of documents isn’t part of our culture.”
“But it’s not because we don’t like to plan,” Markley says. “We plan everything — getting married, having kids, traveling and even who’s going to take care of the dog while we’re gone. But we don’t want to face the end of life. We don’t want to plan for this. We don’t want to believe this is going to happen even though we all have a 100 percent mortality rate,” she says.
“As humans, we’re not wired to accept death,” says Jon Radulovic, vice president of communications for the National Hospice and Palliative Care Organization. “It’s frightening and final. There’s so much apprehension surrounding the topic that it’s understandable why we don’t want to focus on it.”
It seems most of us are also good excuse makers, according to Joseph Ferrari at DePaul University, a professor of psychology and research expert in the subject of procrastination. It’s also not that uncommon to take the Scarlett O’Hara viewpoint that there’s always another day, he says.
“We delay the consequences when we put something off,” says Ferrari. “If the decision is upsetting, we avoid having to feel that.”
No Shortage of Obstacles in the Way
We may put this matter off because we think we’re too young or too busy to complete end-of-life directives. Markley also notes the jinx factor can cause some to fear they’re tempting fate. Or we wait for our physicians to bring it up, while they’re waiting for us to do the same, Radulovic adds.
Others don’t follow through because they say it doesn’t really matter what happens to them, Markley says. But then she asks why they want to make their kids’ lives so hard.
Survivors can still feel great anxiety years after the death of a loved one without advance directives, says Markley. “And not because they felt like they did something wrong, but because they didn’t know if they did the right things,” Markley adds.
Unfortunately, no one forces us to face this. “When we see a doctor we’re asked if we drink, smoke or how tall we are, but no one asks if we have an advance directive,” Markley says. “If we were asked this every time, we’d get the message that this is important.”
But many doctors don’t want to have the conversation, either.
“Physicians are trained to cure,” says Radulovic, “and many think end-of-life discussions will make the patient feel that they’re being abandoned.” It’s a tricky line to walk but he says things may be getting better as doctors become trained in palliative care.
Putting an Advance Care Directive in Action
Regardless of why we put these decisions off, Ferrari has advice on how to approach them:
- Take it one step at a time and build from there. You don’t have to do it all at once.
- Remind yourself it’s not only about you. By doing these things, you’re making your own decisions and taking this burden off your family.
- Share your plans. Research shows that when we make our plans public, we’re more likely to do them because we feel more accountable.
Choosing an accountability partner to keep you on track can also help, Markley says. She recommends visiting The Conversation Project as a great resource. “Think about what you want and then help each other move forward,” she says.
If you still find yourself dragging your feet, Ferrari reminds us that when you procrastinate, the focus is all on you. “But if you turn that focus on to your family, what a gift you’re giving them,” says Ferrari.
Get It Done
So let’s all take that first step. This year, the National Healthcare Decisions Day is actually a week long, April 16 to April 22, which gives even procrastinators plenty of time. Visit the website for information and resources to get started.
Making end-of-life choices isn’t easy, but it’s our right and responsibility to do so. I hope you’ll join me in giving this last gift to our families so they don’t have to second-guess what those decisions would have been.