April 16 is National Healthcare Decision Day (NHDD) here in the United States. According to the NHDD website, the day exists to, “inspire, educate and empower the public and providers about the importance of advance care planning.” Everyone can benefit from talking about their healthcare choices and what they would like to have happen if they are not able to speak for themselves.
I have written before about my own experiences with advance care planning. I have been very vocal with those close to me about my wishes should I ever become unable to speak for myself. My first advance directives were written when I was twenty five. I have updated my health care proxy more than once since then. I am so grateful I took the time to have these difficult discussions at what many consider a young age.
In 2013, I entered the hospital for what was meant to be a routine outpatient surgery to remove my gallbladder. When the surgeon was unable to visualize the offending organ laparoscopically, he completed an open procedure. I knew this was the plan if laparoscopy did not work. I woke in the recovery room to learn I would be spending a few days in the hospital. My surgeon stood over me, telling me I had done very well during the procedure – as if I had done anything more taxing than sleep in an anesthesia-induced stupor!
That is the last memory I have from the seven days to follow. I was conscious for the next two days. I argued with the nurses about using a bedpan (I refused, and demanded a bedside commode), suggested my roommate try lamaze breathing for her constant pain, sent email and text messages and called family and friends. I even spent time on Facebook. But I don’t remember any of it.
I have no recollection of the thunderstorm which knocked out power and caused a flood in my room near the wall of windows. I can’t remember having discussions about discharge home and the extra personal assistance I would require. I only know what happened because I’ve read the hospital records and spoken with those who were there.
The surgery was on a Monday. Discharge was planned for Thursday. Sometime early in the morning on Thursday, as I was sleeping, I removed the Bi-Pap machine I wear at night. This machine is a non-invasive form of therapy which helps me maintain respiration at night while I am sleeping. My respiratory muscles are diminished so this machine makes sure I maintain adequate oxygen levels throughout the night.
When the nurse found me on her rounds, I was not breathing. I was unresponsive but still had a pulse. The medical professionals went to work quickly but I was unable to maintain respiration.
My sister Sandy is my health care agent, which means at some level she knows the first call made by doctors in any medical emergency will be to her phone. Knowing it and then receiving the call are two different things. She was an hour away from me when her phone rang that early morning in May and told the doctors to keep me alive until she could get there.
I spent the next four days in a coma in the Intensive Care Unit. My family members who had already spent too many hours in hospital rooms watching loved ones the prior year now spent hours at my bedside. Sandy had to make several difficult decisions.
Would she let them ventilate me to provide a stable airway?
Would she allow a nasogastric feeding tube to provide nutrition?
Would she agree to a central line in my neck to administer medication?
Sandy knew my wishes about all of those questions and acted exactly as I would have wanted her to. However, knowing my wishes did not make it easier for anyone to watch me lying in a bed with tubes and hoses attached to me in various places.
I woke from my coma late Sunday to see my beautiful sisters smiling down at me. They rushed to tell me not to talk, to explain the ventilator. I immediately indicated I wanted to write a message. We spent the next few hours attempting to communicate using a crude alphabet board. I was extubated the following day and probably haven’t stopped talking since.
The next day, I made the physical therapy staff assess me for transferring out of bed. I also begged the nurses to remove the foley catheter from my bladder. The central line in my neck came out the following day and on Thursday, a week after my original discharge date, I went home.
During my coma, my family consistently had to encourage medical staff to ignore the empty wheelchair in the corner and treat me as the otherwise healthy, active, independent woman I am. They would tell the doctors and nurses about my life, my accomplishments and my abilities. They were able to articulate my preferred positions, and repeatedly reminded the staff about the muscle contractures which make it impossible for me to lie comfortably flat on my back with my legs extended.
I am alive today because those I trust knew how to advocate for me when I was unable to speak for myself. Yes, medical treatment and antibiotics helped. But I know if I had not had a team of loved ones intervening and making certain my wishes were followed, things may have ended differently.
Discussions about disability and end of life can be uncomfortable. They remind us of our fragility and mortality. No one wants to think about losing their abilities. However, life happens to everyone and none of us can predict when we will find ourselves on a hospital gurney, staring at the ceiling and hoping someone will come to our aid.
Right now, while you are healthy and independent, you have power. You can control who will get that call, who will be tasked with making those decisions. Exercise your power now. Start the conversation.
Because when you are lying on that gurney, it’s too late.