... when getting home feels like a matter of life and death.
A friend texted the other morning out of the blue. Most of her family has had and recovered from covid, and her elderly father had died three days before. She was exquisitely and beautifully coming apart and did not know how she would find the breath to push across her tongue in order to shape words when she went later that day to stand by his grave. We got around to that part, but first she told me about his recovery from contagious-covid, but with residual lung damage that bounced him back to the hospital, then home again, then back. At the end of his last hospital stay she got a call from him, he had gently removed his IV and would she please call him an ambulance. He was not going to die in that hospital room. Within hours they set up a hospital bed and commode in the living room and he came home to her house. The hospice nurse visited. His wife, his daughter and her husband, and his adult grandson shared caring for him, and he died where he wanted to be. He had embraced and expressed his agency to spend his last hours in peace.
Getting out of the hospital at the right moment can be so tricky. It requires the will of the patient and at least one other person who is willing to accept responsibility for their care. I was once in a position of making an end of life decision for a loved one. I did not understand the scope of what I was being asked by doctors two thousand miles away. As a result this person's suffering was extended. The communication issues, economics, and politics of this 'right moment' are often insurmountable obstacles. For all the people who could not navigate these shoals safely, you have my deepest condolences.
My last good deed for my dad was to set in motion the wheels of his hospital release so it would happen in time for him to die at home. He had been in the hospital for a second week, my brother had visited from California during the first. He had no circulation to one foot and his heart was not stable enough for surgery. There was a moment. Something in his voice, something about the situation. I understood there was not going to be a recovery and I dreaded a hospital death for him. I could see we had just enough time to open a window of opportunity. I made a call to his close friend who I knew would help my stepmother push to bring him home with hospice care. This was Thursday. They got him home Saturday morning. I visited with him on Sunday and he died that evening. "I'm on my way out," he told me. "I know," I replied, "how does it feel?" He looked at me and grinned, squeezing my hand with surprising strength. "Floaty..." This is not what he would have said in the hospital.
So why the photo of the al fresco commode?
The first spark for this thought exercise rose from my personal friction around how to spring yourself from the hospital when getting home feels like a matter of life and death. And if you are not dying, and have just had major surgery, the facet of the getting-home rubric that the patient has most agency over is bowel movement. Prove you can poop and they'll let you go home. I'd had a spine procedure that had not gone as well as planned and presented residual disabling complications. I desperately wanted to get out of that hospital. The en suite bathroom, in an ironic twist, could not accommodate a walker. For safety they brought me a commode. I was in the midst of using it when my surgeon came into the room on rounds. His assistant politely bowed out but he stayed and proceeded to share important details about the surgery he'd presided over, two days before. What had gone awry, the predicament of my situation being beyond anyone's scope of knowledge (to this day). Etc..
The room smelled of poop. I was stuck on the seat and profoundly embarrassed (but so cheered up because now I'd be able to leave the next day!). I asked if he had any practical advice and he said, "Well, seriously, don't fall, and don't push too hard to poop."
** (psssst: this next paragraph is graphic, surgically, skip to the next to avoid)...
Setting aside for a moment all the ways the residual absurdity of this conversation plays into my medical ptsd, I wish I had been taking notes! From our pre-surgical consultations this doctor understood that I nurture an unusual curiosity about what it looks like inside my body. I was keen to hear about the condition of my spinal cord, discs, and vertebrae. He knew that to support healing I am the kind of patient that needs the nitty gritty details. He described for me how they had cut through skin and flesh and clamped muscles out of the way and then gone about chipping away and lifting off unexpected layers of calcified ligament and bone, for hours, until they came to where the dura mater should be and found arachnoid instead, the layer beneath the dura. They do not know where my dura has gone. They made a glue patch seeded with epithelial cells to protect the fragile arachnoid and put back in place what they could.
They sewed me up, kept me laying flat for 48 excruciating hours, and crossed their fingers that I'd be able to stand again. This is what he told me as I sat on the commode, needing the information he was taking the time to share with me but also desperately hoping he would leave the room.
I couldn't push too hard but I also had to keep pushing gently enough to get home, sooner. I sat on that commode and imagined it, and I, were some place else. Now, when I recall that conversation with the surgeon I don't see myself perched on a plastic toilet bucket, wearing a hospital johnny with my naked knees pressed together and an 8 inch incision exposed along my lumbar spine. I see myself resplendent on this throne in the picture! How to spring yourself from the hospital when getting home feels like a matter of life and death? Know who to call for help. Be fierce, express your agency any way you can, push gently but know your moments and PUSH until you get where you want to be! Even if all you are pushing with is the power of your imagination.
I try to pay enough attention to living and dying so that I notice valuable insights when I encounter them. One true thing is that we are most vulnerable while navigating transitions, and in the midst of this vulnerability our power to throw open a window of opportunity and 'make things so' can be vast. So vast that we can sashay through the eye of the needle. Safe home. Even facing life's most radical transition, death, we can't always get what we want, and if we PUSH, "some times, you just might find, you get what you need". Oh yeah. ;-)
~ ~ ~
PS: before I get in trouble, and to be abundantly clear, I am not advocating for patients to leave the hospital against medical advice (AMA). These decisions have to be made carefully, with insight, resources in place, and sufficient support. Do ask for a palliative care consult if this is available so that you have the best information to clarify goals of care and treatment plans. And if you are nearing end of life please consider hospice and/or doula care, so that the folks supporting you at home also have support.
... 'nuff said, I hope. May you be graced with the blessing of enough.
Dina Stander / dinastander15@gmail.com
I'm a poet, End-of-life Navigator, nondenominational Celebrant, and maker of *burial shrouds. I reside in western Massachusetts where I am blessed with a diverse creative community. My writing is offered as a contribution to keeping our lanterns of encouragement steady and bright.