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Every parent knows that they need to have “The Talk” with their kids. Some approach it with confidence. Others nervously muddle through it. No one wants to mess it up. But few people realize there is another “Talk” we must have with our parents and other loved ones. It can be as awkward, but as necessary, as discussing sex and reproduction with our children. And the stakes are just as high.
The News No One Wants
On New Years Eve 2009, I got the worst phone call of my life.
“You know that pain I’ve been having?” my dad asked. “I finally went in to get it checked out. They ran a bunch of tests, and the results are in.”
My heart jumped to my throat.
“It’s cancer. They found tumors in my pancreas…. and my liver… and my spine… and my hipbone.”
For the first time in my life, I heard my dad break down and sob.
Now, I’m no medical expert. Until bearing and raising children forced me to get past it, I was always squeamish about bodily fluids and “medical jargon”. But even I knew that if you’re going to have cancer, the pancreas and liver and bones are not good places to have it.
I would later learn that my dad had the same form of rare cancer as Steve Jobs. Even one of the richest men in the world couldn’t beat it. And to the credit of my dad’s team of physicians, they never promised a cure. At best, he might be able to manage this type of cancer as a chronic condition – held at bay but not eliminated. He would never be “cancer-free”.
Still, there is hope for people with this type of cancer, if their bodies respond well to treatment. They can live for several years while still doing the things they enjoy most.
A Life Worth Living
Perhaps it was because his cancer wasn’t “curable”. Or perhaps they always focus on treating the whole patient instead of the disease alone. But my dad’s oncology team did a great job of
My dad’s answers changed dramatically as time marched on and his disease progressed. When he was first diagnosed, his answer was, “I want to be able to travel and play golf.” As he grew sicker, his answer changed. “I want to be able to see my grandkids. And I want to be able to walk on my own two feet.”
Fate spared us from having to make the most agonizing end-of-life decisions for Dad. At his doctors’ encouragement, he had a Do Not Resuscitate order in place. That’s a legal order to withhold CPR in the event a person’s heart or breathing stops. Two years after his diagnosis, and a little over two months after Steve Jobs’ passing, my dad’s heart gave out. Just like that, he was gone.
Looking back, I can see how lucky my dad was. His physicians knew that quality of life was more important than quantity. Thanks to science, they could keep a person’s heart beating and their lungs breathing almost indefinitely. But that doesn’t mean they’re living. They’re just existing.
Unfortunately, this approach to patient care is the exception, not the norm.
A Tale of Two Parents
My mother’s death could not have been more different.
Mom had been living with a chronic autoimmune condition for many years. She controlled it so well with medication that most of her friends had no idea. But over time, the medication became less and less effective. Her condition grew worse.
She started running out of options. Before long, she only had one option left. It involved a major surgery that was very risky, especially for a woman in her mid-70’s. It would involve up to eight hours on the operating table, and months of recovery.
My mom could think of only the best possible outcome, despite the odds. In her mind: she would qualify for this surgery. She would undergo it before it was too late. And she would make a full recovery. That was the only possibility she seemed willing to think about.
That was when I tried to have “The Talk” with my mom. I knew we needed to have it. But I had no idea where to begin. While my mom thought only of the best outcome, I couldn’t help but consider the worst. That she would undergo the surgery and make only a partial recovery. That she would never regain the quality of life she was hoping for. That it would bring her only needless pain and suffering. That she would have been better off focused on spending with her loved ones whatever time she had left.
But Mom didn’t want to think about that possibility, much less talk about it. Worse yet, I didn’t even consider asking her what I should do if she ever couldn’t speak for herself. How would I know what decisions to make on her behalf? What did she think made life worth living?
As it turned out, those questions would have been more important than whether to have the surgery. She might have also been more open to them. After all, they wouldn’t have directly threatened her vision for a complete and total recovery.
Two days after my failed attempt at “The Talk”, my mom went to the emergency room with extreme weakness. They admitted her for treatment and observation. Feeling a hunch that she shouldn’t be alone, I decided to spend the night with her in the hospital.
A little after midnight, I had what would turn out be my last conversation with my mom. After that, her body went haywire and all heck broke loose. I’ll spare you the gory details, but what happened next felt like being on the set of a medical TV drama. Monitor alarms blaring. Announcements over the intercom. People in scrubs rushing in and out of the room. A doctor explaining the emergency procedure they were proposing. Someone handing me a clipboard and a pen. My hand shaking as I signed the authorization form.
The next few days were a physical roller coaster for my mom and an emotional one for us “kids”. It seemed like all that the doctors could do was play whack-a-mole. Heart rate too fast, then too slow. Electrolytes too high, then too low. Fixing one problem seemed to only cause another. Yet doctors offered only the next procedure, the next medication adjustment, to address the latest crisis.
After a lot of discussion and soul-searching, we “kids” concluded on our own that it was time to shift our focus. We would do our best to keep Mom comfortable and give loved ones time to say goodbye. We would allow her to pass away naturally and with her remaining dignity intact. No more procedures. No more tubes. No more blaring monitors.
When I shared this with the attending physician, he replied immediately and without hesitation: “I think that’s the right decision.”
Reflecting on it later, this exchange baffled me. Clearly, he had given it some thought and came to the same conclusion on his own. And if he had, then some of his colleagues must have as well. Why, then, had no one proposed it to us?
As soon as it was practical, Mom was released from the ICU into a private room in a quiet wing of the hospital. Though she never spoke or opened her eyes again, we’re certain she could hear us the entire time. She got to listen to each of her grandkids’ voices again. We took turns sitting with her, talking and singing to her, praying over her. Mom passed away peacefully and surrounded by love.
I struggled for a long time after my mom’s death. In my mind, I replayed all the events leading up to her passing. All the forks in the road, all the decisions we made along the way. I questioned each one and wondered what could have been, if only we’d done something different along the way.
A friend suggested I read Being Mortal by Atul Gawande. That book helped so
“We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs… operate… put in a feeding tube if a person can’t eat: there’s always something. We want choices. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Fix Something.”
I also asked a physician friend for her opinion on what we’d gone through. Why didn’t any of Mom’s doctors initiate end-of-life discussions with us?
Her response: fear of lawsuits. As a doctor, bringing up the possibility of stopping treatment can lead families to believe that you’ve “given up”. That you won’t give their loved one the best possible care. Then when death inevitably arrives, the family blames the doctor who could’ve done more.
Renowned blogger Physician On Fire also offers a fascinating, behind the scenes look at how this plays out. In his post We Were Promised Death Panels, he writes: “We healthcare providers frequently do ‘everything possible’ to sustain life for patients with dismal odds of survival, let alone any sort of meaningful life if the patient does indeed survive.” They do this not because they think it’s the right thing to do, but because their hands are tied.
Financial and Ecological Impacts
This is where we must tread carefully. Because at no point should people make end-of-life decisions based on financial or environmental concerns. We should always strive to preserve a meaningful life for as long as possible. And what constitutes “meaningful” varies from person to person.
That said: all too often, decisions are made to maintain a person’s breathing and heartbeat well past the point where their life has any meaning. This not only prolongs their suffering; it’s also incredibly expensive. Consider these average costs:
- 1 ambulance ride: $400 – $1,200
- 1 day in an Intensive Care Unit: $4,004
- 1 month in a nursing home: $8,121
- 1 heart bypass surgery: $123,000
In a best-case scenario, insurance fully covers all these costs. Worst case, one spouse passes away, and the other is left with bills for “treatments” that did more harm than good. The surviving spouse winds up not only
The ecological cost is similarly staggering. Medical procedures have large waste and water footprints due to infection prevention measures. Normally the benefit exceeds this cost. Of
One day I may write a separate blog post on medical waste and how to reduce it. But until then, just know that there is a LOT of it. And when it’s generated while providing unnecessary treatments, that’s doubly wasteful.
It’s Up to Us
Here are some startling statistics from The Conversation Project:
When is the Right Time?
Pop Quiz: Who should have an Advance Directive in place and on file with their primary healthcare provider? Keep reading to learn the answer…
The best time to plant a tree was 20 years ago. The second best time is now. — Chinese proverb
Think of what originally came to mind when you read the phrase “The Talk”. Now consider: when is the right time to discuss sex and reproduction with your kids?
The best time is before
Still, having “The Talk” at that point is better than not having it at all. Put it off too long, and your dear sweet child could wind up as a teen parent with an STD.
And when is the right time to broach end-of-life discussions with a parent or loved one?
The best time is before they’re diagnosed with a serious, high mortality illness. At that point, conversations about death and dying are purely hypothetical. But after such diagnosis, it’s personal – for everyone involved. After all, no one wants to suggest that their loved one can’t beat the odds.
Still, having “The Talk” at that point is better than not having it at all. Put it off too long, and you could wind up like I did: guessing what your loved one would’ve wanted, while never feeling certain that you’ve made the right choices.
Which brings us to our Pop Quiz: Who needs an Advance Directive? The answer: All adults. YOU. Yes, YOU need written instructions on what decisions you’d want made if you’re unable to decide for yourself. And it doesn’t do any good sitting in a drawer or even filed away at the lawyer’s office. No one will know where to find it if you’re incapacitated. It needs to be on file with your primary healthcare provider.
“But I’m healthy. I don’t need one.”
Tell that to the man who had a stroke at age 41, out of the blue. Or the woman who suffered massive head trauma in a freak snowmobile accident. In the wise words of Lin-Manuel Miranda, “Death doesn’t discriminate”.
“Okay Jade, you’ve convinced me. What do I do?”
These are my two favorite resources for people who want to have “The Talk” with their loved ones.
- The Conversation Project – dedicated to helping people talk about their wishes for end-of-life care. It offers a free Conversation Starter Kit, tips on when and where to have the conversation, ideas on how to break the ice, and more.
- Five Wishes – goes even more in-depth. It includes not only who can make decisions on your behalf and what decisions you’d want
made. It also addresses spiritual concerns such as forgiveness, prayer, and funeral planning. Its documents are also legally recognized in 42 states.
Either one of these will help make the experience a lot less uncomfortable and awkward. In fact, having “The Talk” can bring you even closer to your loved ones. You will learn things about them you’ve never known before. What they find most important in life may surprise you.
Go ahead! Before you close this window, open your calendar. Identify a couple of dates when you can have an uninterrupted conversation with your loved ones. Then contact them and find out which date works best. Once you mentally commit to doing this and put it on your calendar, you’re halfway to making it happen.
Comment below and let me know how it goes!
And one more request…
If your mom and dad are still around, please give them a hug for me.
Thanks for reading, and for taking the next step to becoming SuperGreener!
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