Sunday 19th February 2017,
The Liz Army

Hacking the hospital death

Names have been removed from this post to respect the family of the deceased.

Last Thursday I lost a friend and mentor. J was a brilliant journalist and communicator, and a fantastic father. I am lucky he was part of my life for seven years.

I can also say I am honored to have been with him when he died.

Heath conditions are a topic on which J and I bonded over in 2011 when he was diagnosed with transverse myelitis, an immune disorder of the central nervous system.

J also knows how passionate I am about empowering people to explore and express their preferences for medical treatment when they are seriously ill or at the end of life.

Spoiler alert: we are all going to die

One thing I have noticed as an “empowered patient” is that most people don’t talk about death and dying. We might think about it, but we don’t plan in advance or communicate what we would want if we ever were put in a position where we could not speak for ourselves. I understand. It is an uncomfortable topic.

According to a 2012 report by the California Health Care Foundation, 82% of Californian’s think it is important to put your end of life wishes in writing, yet only 23% have done so. Why is this important?

For one thing, doctors are trained to save people, and without a medical order or an advance directive, a medical team will, by default, try to save your life by all methods possible.

As a relatively healthy 36-year-old, saving my life by all methods possible actually sounds like a good idea! But if I was dying, say from an advanced brain cancer, there is no amount of CPR in the world that is going to cure me of cancer. In that case, I say “no machines for me, please,” sign me up for hospice, and take me home to die with a purring cat on my lap.

When you can’t die at home

Unfortunately, J was not in a position to die at home with a purring feline at his side.

After suffering through a litany of health issues over the last few months, include a minor stoke just four weeks prior, J suffered a major stroke that cut off the oxygen to his brain, leaving him unresponsive and unable to breathe on his own. After arriving at the hospital J was placed on life support.

Fortunately, J had conversations with his girlfriend, A, about what he would want if he were ever in this position. He had appointed A as his medical decision maker, and thanks to these conversations she knew he would not want to remain on life support.

Knowing the wishes of your loved one is one thing, but following through with those wishes is a whole other matter.

Early on Thursday afternoon I was contacted by A’s friend who was with her at the hospital. She said A was very distressed. They knew from the doctor that J was never going to wake up. They knew he could not breathe on his own. They knew what J would want. But discontinuing life support was a big deal. A needed support and they asked me, and anyone else who could make it, to come to the hospital and be there when the time came.

This is what I observed upon arriving in J’s hospital room:

  • The room was dark.
  • The room was noisy with hisses, bleeps and bloops from machines.
  • J looked more machine than man.

Everything in me screamed: This sucks! I wouldn’t want to die like this! But I knew there were limitations in a hospital. For one thing, I didn’t think we could easily find a purring cat.

Thinking outside of the hospital

At the risk of appearing pushy (because I don’t want to be a douche who pushes my personal preferences on the health care experience of others), I asked A if she would be open to us “improving the experience” of J’s death.

The next thing I know, we (meaning me, A, and all of the friends in the room) started brainstorming about what we thought J would like. These ideas included:

  • Fresh air
  • Sunlight
  • Being outside
  • Music
  • Dancing (J absolutely loved to dance, and often joked that he danced better than he could walk)

Inspired, a friend immediately rushed down to her car to get speakers for an iPod. Another friend started scrolling through J’s music to find a good playlist.

We tracked down a nurse and said we’d like to take J outside after he was taken off of life support.

“Um, I don’t think anyone has ever asked us to do that before,” said the nurse. “But I will check into it.”

It never hurts to ask, right?

Within a few minutes we were told there were liability risks of putting a patient out in the courtyard while they were still in a hospital bed. So then we asked if we could push him out in a wheelchair. The medical staff explained to us death-newbies that his body would slump out of the chair–and we got a picture of what a disaster that would be.

I will neither confirm nor deny this, but at that point I may have said, “No offense, but dying in a hospital is the worst. We don’t have time to get him home, so what else can we do to make this a better experience?”

Then A got an inspired idea. “What about a better room? Is there a room with more sunlight?”

“Oh yes,” said a nurse. “We are cleaning out the best room right now–it has windows, and you can open the door to get fresh air.”

Perfect.

After J’s nephew arrived we were ready to put the plan into action and all of the friends knew what was to happen next.

The beginning of the end

The medical team gave J medication to take away any pain he may experience. They removed his breathing tube, and unhooked all machines except for the one monitoring his heart beat. Quickly, his bed was moved to the sunny room where his friends, including myself, were waiting outside by the window.

As soon as the medical team cleared out we poured in. One person set up the speakers. Another friend was ready with the iPod. The door to the medical area was closed. The rest of us swarmed in around him: hands placed on his hands, his legs, his feet. The room was small, so some hovered around the perimeter and in the doorway to the open air.

We fell silent and the first song began.

Nearly every other song on J’s iPod was a Christmas song, so I wasn’t surprised when “I’ll Be Home For Christmas” started playing through the speakers. For decades, J gifted friends with his mix CDs of obscure Christmas songs he had spent the previous year curating. This is perfect, I thought, while I cried and laughed at the same time.

Unburdened by machines his body began sinking into the bed. As the body shifted and settled I said, “This is natural,” mostly to remind myself that what I was witnessing was part of the cycle of life, much like a baby crying when born.

By the end of the first song his heart rate had gone from 90 bpm to 52 bpm.

I started paying attention to heart monitor. I was constantly shifting my focus from J’s face to the monitor, and he went from 50 bpm to 30 bpm during the second song.

And then the last and final song began.

A friend said “Orange Sky” held a lot of meaning for J. I had never heard this song, but now I will never forget it. I watched J’s heart rate decrease during the first two-thirds of the song, from the low 30s to zero. The monitor began to ding. A friend pushed a button, silencing the sounds. I held J’s feet.

We listened through the end of the song, with our faces on J’s, tears pouring out of our eyes. I was sobbing. We were devastated.

No one danced.

When the song ended there was silence.

Then the scene from a movie played out: A doctor wearing a white coat walked into the room. He donned a stethoscope and raised the end to J’s chest. His hand moved to various areas of our friend’s chest, and down and around to his stomach. He raised each of J’s eyelids to shine a flashlight into the pupils looking to see if they would constrict. The pupils did not move. The doctor looked at the clock and said, “It is 6:11. Take as long as you need.” He exited the room. End scene.

We all stood looking at J for a long time. Then the music began again… “We Could Be Heroes,” by David Bowie.

The end

The best way to capture your healthcare preferences is by having a conversation with your loved ones, appointing a medical decision maker, and then documenting your preferences in an advance healthcare directive. You can find an expansive list of resources on advance care planning, including guides on how to talk with your loved ones, from the Coalition for Compassionate Care of California.

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  • alex behr

    “Spoiler alert”? Really? Is that the best you can do? People are actually grieving. His family is shattered. Would his teenage daughter want to read this? Don’t you think there’s a reason she was in school that day? Her emotional wellbeing, perhaps? You guys are posting photos of him dead and dying (on Facebook) and using this as a forum for literary musings on his death when his family is suffering. You have some primary background facts wrong in the essay, too. Why post it so soon? Keep it in your diary. Why can’t you put his family’s self-interest ahead of your own?

    • Anne Snider

      Alex is right …. I am Jimmys cousin, and this would be extremely difficult for any of his relatives to read, not to mention his teenaged daughter. Jimmy was very close to my mother who is a very computer-literate 90 year old…this horrifies her. Liz, I understand what you are trying to do and respect your position on this. However Please respect the grief and privacy of Jimmy’s Family and at least make this anonymous

    • Liz

      Hi Alex, I am sorry for you loss. I know you loved Jim and I appreciate the memories you are sharing of him on Facebook.

      Just so you know, it was not me who shared photos of Jim’s hands while he was still on life-support in the ICU, and I agree–it is tacky.

      One of the many things Jim and I bonded over was the importance of storytelling. For me, it is important to share my story of being a person living with brain cancer, and all of things I take more notice of as a person living with this disease.

      After being diagnosed with transverse myelitis in 2011, Jim turned to me and asked for help setting up a blog so he too could publicly share his journey about living with a rare disease.

      I was lucky enough to be one of the few people who found out Jim was in skilled nursing just three days before he had his second stroke. When I visited him he was chatty and I expected a great recovery from him!

      I didn’t say this in this blog post–because I feared it would come off as bragging–but when I saw him the Sunday before he died, Jim told me he looked to me as role model for how he would deal with the latest blows to his health.

      Jim said he was planning to write a long blog post to let everyone know what was going on, but he was too tired. I asked him if he wanted me to share what was happening with a few people, and he said yes, please tell some people. With his blessing, I started a Facebook Group consisting of 14 people.

      When Jim’s health took a turn for the worse, more people got added to the Group–and now his “fan club” has over 200 members. (He is so loved!)

      As I said before, I was honored to be with Jim when he passed. I know he would have loved to have had more of his east coast friends and family members with him, but I am glad that he did not pass alone, and that his wishes were respected and honored.

      I wrote this post on my own personal blog because I see this as a teachable moment for many others who are dealing with long-term or serious illnesses.

      I purposely did not share this post on Jim’s Facebook page or in his “fan club” group on Facebook. I did not tag him in any posts about this.

      Out of respect for your fears that his daughter may be offended by this post, I removed Jim’s name and links to articles about him in the Sacramento Bee and The Chronicle. If she ever wonders what happened that day, you can always send her the link to this remembrance.

      Again, I am sorry for your loss.

  • Kale Elledge

    This was a beautiful read, especially if you knew Jim. I think we need to remember that Jim was a storyteller. Not because he made a living doing it, but because he loved doing it. This post was a beautiful tribute to Jim and his final moments. As my own opinion, I would be honored to know that I have left such an impact on so many around me. If I was forced from this world too soon, I could only hope that my daughter could look back on a tribute like this to remember that her dad was loved – in such a way that Jim was. Liz, thank you for allowing us to be close to our friend through all this. You have brought together a community around Jim that I would never had known existed. Keep writing…

    • alex behr

      Well then she should keep it, print it, take down the blog post, and ask HEATHER if it’s appropriate to give to the daughter. Their daughter is a minor and this is very descriptive — like a play by play — about the worst event in her life. Remember, Heather chose to have the daughter say goodbye the day before he was taken off life support. I can’t believe the needs of a writer come before the needs of a minor child. As someone who’s aunt died of a brain tumor leaving three sons behind — who are STILL traumatized decades later — you’d think she’d have more compassion as to the appropriate forum.

  • alex behr

    His immediate family is requesting that you take down the blog post. His immediate family is very upset. Do it as an act of grace for his teenaged daughter, who would not want to read this information now. Save it for a year. Save it for two years. Change the name. Change the details. You’re not serving anyone who actually loved him with this post. It sounds like you were taking notes while he was dying. It’s fine that you helped him set up a blog, but it doesn’t mean you need to comment on his death in so much detail, with a lot of factual errors concerning why the machines were still working (in fact, so ERIK could arrive) and who was in charge of the medical decisions (in fact, HEATHER). With your blog posts and the photos from others in the room it’s like you made his death into a reality TV episode. I get it — I’m a writer — but please, take it down! I met him when I was 16! Please put your needs second.

  • alex behr

    In fact, Jimmy was VERY secretive about his medical conditions at the time they were starting, especially his first stroke, so I don’t think you can conflate your needs to share your medical story — or his blog about a disease he overcame — with his death. There’s not really a comparison. You just don’t know. He did have a lot of secrets, actually, which you would know if you were his girlfriend or wife or close friend or family member.

  • Erik Herron

    Liz, please respond to my private Facebook message. If anyone finds this objectionable, please do not discuss it in a public forum. It just draws more attention.

  • kellimeador

    Liz. Thank you for sharing. Went ahead and listened to Orange Sky while closing my eyes and thought of JZ. He sure was an amazing man and I sure am happy he had you by his side telling his last story. Much love to you!

  • Frank Jansen

    Liz, thank you for sharing and the great blog that you have. I just saw you on the Show and wanted to be sure to follow.

    It’s wonderful to hear that you got to be with J during this important time.

    Be well,

    Frank

  • alexis samson

    Hey ! I Appreciate the specifics – Does someone know if my company could possibly get a template a form form to fill out ?

    • Mariella Dube1

      Hello alexis samson. my friend got a blank IRS W-3 copy here http://goo.gl/jtIShg

  • linna zhang

    Liz, you are so brave, and I really admire your honesty!

    On a separate note, did you hear about the Polio discovery at Duke? The article is “FDA fast-tracks treatment that uses polio virus to fight brain cancer” check it out!

  • James Leonard Park

    Yes, it is always the right of the patient-and-family to remove life-supports when they no longer do any good: http://www.tc.umn.edu/~parkx032/CY-PLUG.html.

  • KC

    This article sheds a different light on a very difficult topic to think about (never mind talk about). It changed my perspective more than anything else I’ve read. Thank you…