Wednesday, February 11, 2015

Being Mortal: Demystifying Death with My Teen

As my children finished their homework at the kitchen table, I quickly reviewed my Twitter feed and immediately began tripping over #BeingMortal hashtags. A quick investigation led me to understand Being Mortal was actually a PBS Frontline presentation with the esteemed Dr. Atul Gawande and I publicly bemoaned not having a television set that I could tune in on.

Almost immediately, I received the following response to my tweet:

I clicked the link and was soon taken in by the words, “Often times what we say, as physicians, is NOT what the patient hears,” from a palliative physician.

My son had already scooted off to shower but my 13 year-old daughter sat across the table from me, within audio earshot but out of view of my laptop screen. Occasionally she glanced toward me and I would describe what was happening on screen. Within 15 minutes, she was standing over my shoulder as together we watched Bill Brooks say, “There has to be a third option.”

I moved us to the couch and she cuddled next to me.

For the remainder of the program, we exchanged commentary on doctor behaviors (lack of eye contact when giving bad news bothers me) and on patient conditions. I mentioned I was sad for the woman who wanted to take her grandchild to Disneyland and that I was really irritated that IV medications were the reason she was told she couldn’t die at home. She knows I am adamant about honoring patient wishes.

My daughter was taken by Jeff Schultz and she commented multiple times on the beauty of his farm.
I was impressed by Jeff’s ability to have the hard conversations and continue to make his wishes clear.

We were both shocked at the swiftness of his death after his last interview with the camera.

And we both agreed that his dying at home, surrounded by beauty with the opportunity to say goodbye to loved ones, was a good way to die.

I was 38 years old before I was able to view death as a natural end to a good life. I held the hand of my grandmother as she made her decision to die

Prior to that moment, and certainly as a teenager, I was afraid of anything related to death. I have a strong desire to help demystify the process for both of my children. Cancer has played a big role in our family’s last few years and those deaths seem to come more swiftly. I do not want my children to view death as a failure, I want them to see and I want them to understand that a good death is only a part of the whole story. Ultimately, it falls back to making the most of the time we have.

So why would I sit and watch a show about death with my young teenager?

I wouldn’t.

This program was not simply about death. It was, as it was aptly titled, about being mortal - on both the patient and the doctor side. And there were many layers to explore. I was happy to see her witness doctors who were unsure and questioning. I want her to know that her care provider is human, fallible and that the empathy and authenticity must run both ways. And I was thrilled to show her several patients who had a voice, who made their wishes known, who had the hard conversations and were therefore able to spend their final days in the best possible way, for them. To raise a generation of health-literate and empowered patients, we must start with the youth.

The program ended and I kissed her head and thanked her for sharing the time and the topic with me.

Unprompted, my daughter reminded me, as she had almost a year ago, that she was not afraid of death, she just had too much still to do

And she skipped off to the shower to get on with life.

My 12 year-old didn’t watch the show, he’s not very comfortable discussing or even hearing about death. I want to respect that and I understand that the death of loved ones and our own family cancer struggles are still too fresh in his young mind. And this education is nothing to force. Everyone has to find their own comfort zone. I’ll be here when he’s ready.

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