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
- Being outside
- 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.”
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 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.