Terrie Lincoln works in the same building that hosts Not Dead Yet. She has an important story to share – and one that may bear similarity to other folks who have had “near-misses” with “end of life decisions.”
Today, Terrie shares her story on the blog at the Center for Disability Rights. I share the story in its entirety and will save my comments for tomorrow. For today, please read what Terrie has to say, without further editorial comment from me.
How I DIDN’T Die
Posted on June 16, 2009
By Terrie Lincoln, Systems Advocate
For several months, I’ve been polishing the story of my recovery from the accident that brought me into the world of disability. Until recently, I hadn’t talked much about this period of my life. The memories can still make me angry. The anger isn’t about my disability, though. The anger is about the doctors that didn’t think I would have a life worth living – and how hard my family had to fight to make sure I received the treatment I needed to survive.
Folks at CDR and Not Dead Yet (NDY) have been discussing how and when to best launch this story when an opportunity unexpectedly came up. Stephen Drake of NDY was contacted by someone from “How We Die,” a website and TV series devoted to “end of life” situations. After a discussion with Stephen, the representative from the show became convinced that stories like mine should be included – the stories of people who escaped death due to families that resisted unrelenting pressure from medical staff to disconnect life support technology.
Information on the website is included below. They want more stories like mine and I know they’re out there. Please submit your stories of “near death” experiences due to negative medical attitudes – to the website below, to me and to Stephen Drake at Not Dead Yet.
by Terrie Lincoln
If my family had listened to the doctors 12 years ago, I wouldn’t be able to tell you my story.
My name is Terrie Lincoln and I am a 31 year old quadriplegic. I live in Rochester, New York and work as a Systems Advocate at the Regional Center for Independent Living. I have a degree in social services and a bachelor’s degree in public administration. I am currently working on my master’s in social work.
At the age of 19, I had an automobile accident. They had to use the Jaws of Life to free me from the wreck and rush me to the hospital. After I got there, my family and friends learned I severed my spine and broke my neck. At that moment I had no idea what was wrong with me, since I was in shock and slipping in and out of a coma.
I was air-lifted to a nearby hospital in West Virginia a few hours later. The doctors then told my parents they were going to do emergency surgery on my neck — a neck fusion. They had to put a plate in my neck. The doctors also told my parents while I was being prepped that there was no way I could survive a broken neck. They said nobody lives with a broken neck. My Mom said: “We’ll see about that.”
The surgery turned out well and I started recuperating. While I was lying in the hospital bed that did not rotate because they did not want to injure me more, the doctors would come in and ask my mom if she was ready to pull the plug on me. “Why would I want to do that?” she would ask? The doctors answered, “What kind of life will she have— she won’t. She won’t be able to dance, walk, work, have a social life, or be independent.”
My mom, being the strong woman she is, asked the doctor if he would pull the plug on his own son/daughter. He walked out without answering. The next day when the doctor came in my dad was there with my mom. The doctor informed us that I was going to be in a veggie state for the rest of my life. First of all, who uses the word “veggie”? Anyway, my dad asked what veggie I was going to be because I hated green beans and would be mad if I was one.
The doctor said he didn’t find that funny and felt it was inappropriate. My mom said she felt he was being inappropriate by coming in every day and telling her to pull the plug on her daughter. The doctor responded that any good mother would pull the plug instead of seeing their baby suffer. At that moment, my mom leaped over my bed and started choking and attacking the doctor.
The doctors must have known they were fighting a battle they were not going to win. They knew they were killing me slowly with the lack of care I was receiving. Within fifteen days of being there, I had no bowel movement (they were scared to roll me), aspirated, had pneumonia, and collapsed lungs which they did not want to focus on at the moment. I was life flighted out on the fifteenth day.
Once I arrived in Columbus, OH we felt I was on my way to recovery. I had a new team of doctors who specialized in spinal cord injuries. The relationships with the doctors started off more positive than the last set until the first time I died, which was about 3 weeks after I arrived. I was a code blue and they resuscitated me but didn’t offer any suggestions on how to inflate my lungs or help me breathe.
Over the weeks I got worse and worse. Pneumonia was causing my lungs to fill and I was constantly flat lining (electrical time sequence measurement that shows no heart activity). The team of doctors asked: do you want to pull the plug? They said you could take her off her feeding tube and we could induce her into a coma and she won’t suffer.
It took my mom following one of the doctors around all day and to his car at the end of his shift to get him to open up and talk. She went into his office and grabbed a picture of his family and held it up to him and asked, “What would you do? Would you let them pull the plug on the one you loved without doing everything you could?”
My mom came back to my room and I remember seeing her cry for the first time. She held my hand, said a prayer, and promised me everything would be OK. She said she would fight to the end even if she had to tear the hospital apart.
The doctors came in the next morning earlier than usual and told us they were prepping me for surgery. My mom asked what kind. He said he couldn’t sleep the night before because of her and he was going to put me on a ventilator, which would breathe for me. When I got out of surgery they had a rotating bed waiting for me. The bed helped with weight shifts and shook — to help break up the stuff in my lungs.
After a matter of weeks, my health started improving. I had color back, no bed sores, regular bowel movements, and my pneumonia was improving. I got released after 3 months from the main hospital to a nursing home within the hospital. This section was for people who were in poor condition (not expected to make it) and those who had to live with a ventilator.
During the time I was there I shocked everyone. I refused to have my feeding tube, G-tube, and J-tube anymore. I was tired of being poked and going in and out of surgery for no reason. I felt safer and healthier having the tubes out instead of in.
We started working on goals and weaning off the ventilator. We knew my health was improving and we were thanking Jesus every day. I was spending hours a day off the ventilator and the doctors were still asking if I wanted to live the rest of my life with this condition. If I chose no, they would keep me off the ventilator and I would die. I could get injected with Morphine so I couldn’t feel it.
They’d work at my parents, saying things like: “Your daughter was so active before this accident and now she’s nothing. She’s just like Christopher Reeve, she will need help with everything, she won’t be able to push her own chair. She will have to use a sip and puff device.”
Then they’d work on me. Saying stuff like: “Are you sure this is something you can live with? Do you want to spend the rest of your life on a ventilator?”
These are all the things we heard every day even though my health was improving. What gives them the right to convince someone to end their life?
My respiratory therapist said when I get off the ventilator completely I could go to physical therapy. One Friday we did our daily disconnecting of the ventilator – but this time we never connected it back. I ended up staying off of the ventilator for good.
Weeks later I started therapy and eventually got discharged after 5 months of being in the hospital. When I returned for my follow-up appointment a year later I made it a priority to see that team of doctors. When I rolled into the offices pushing my own power chair, without a ventilator, and healthy as can be, their jaws dropped to the floor and their eyes began to fill with tears.
Through my journey, I could not have done it without my two biggest advocates—Jesus and my mommy. She never stopped fighting from day one and never took no for an answer.
TV Series and Website Seeking Stories on How We DieA new Website and TV series is looking for first-person stories from patients, their families, loved ones, and doctors about how personal experiences have shaped what we believe about death and dying, and about the decisions we make for ourselves, for loved ones, or for patients at the end of life. The website is: http://how-we-die.org/HowWeDie
The series, tentatively titled “Stories,” is being developed by Marc N. Weiss, creator of the long-running PBS series P.O.V. and Tom Yellin, a veteran network news and public affairs producer. The series will explore experiences that tested or challenged their values and beliefs about who decides when and how we die, and what role, if any, government and healthcare institutions should play in those decisions. Visit the site and submit your story!http://how-we-die.org/HowWeDie
That’s all for now. Part 2 (meaning my 2 cents) coming tomorrow. –Stephen Drake
Thank Stephen for sharing this story with us in this forum and encouraging Terrie to tell her story to others.
I fear, however, that the story’s impact will be lessened by a lack of details that make it verifiable such as names, dates, and places. It’s not that I doubt it’s veracity, but others probably will question it or dismiss it as exaggeration. Are there names attached to the doctors and hospitals in other accounts of this story?
Terrie Lincoln, well done. I love your mother.
Roger,
Believe me, I know the problem with withholding the identifying details. It’s a problem – hospitals and other medical entities are selective in their application of the “golden rule.” As I’ll go into later, there may have been a variation of the golden rule in operation with some of the medical people involved in urging Terrie Lincoln’s death (they wouldn’t want to live like that and didn’t think she should either).
When it comes to litigation, the golden rule goes out the window. Medical organizations have done everything in their power to prevent/hinder lawsuits directed at them – however, there have been several instances I know of where some have threatened action over “defamation.”
Solution: Get a sufficient number of people with stories like Terrie’s and then you can start naming names – because a sudden wave of mass retaliation will be very transparent and draw far too much attention on an aspect of medical care that hospitals, doctors and professional organizations really don’t want to shine a light on. –Stephen
I am not sure the details that Roger worries about are needed. The pattern is well established, specifically questioning the quality of life for people post SCI. Terrie’s story is not unique, has a long history, and sadly likely still exists.
Dad didn’t fare so well…
My dad was 93 but totally able to make his own life decisions.
Still living in his own home with only sporadic visits/help?? from anyone else [to bring a meal or maybe watch TV with him and such]
Had gone to do his taxes at the Senior Citizens Center that morning
Still could drive [with some limitations due to glaucoma]
Still personally paid all own bills and handled his own finances.
Still owned his own home.
Personally handled his health problems except for occasional rides to the Dr.s office, or pharmacy.
Had no known terminal health problems.
***Had ONE BRIEF blackout at home during lunch***
Woke up and summoned help on his help button by GETTING UP AND MOVING HIMSELF to his walker where the button was hanging
He was taken to ER by at least one of my 4 sisters
Admitted but at that time tests did NOT show stroke [except perhaps a TIA], and showed he did NOT have pneumonia
Dad did have heart arrhythmia but had been treated succesfully for years by his own PC.
Upon admittance or shortly thereafter, he was prescribed an ill reputed anti arrhythmic drug which article upon article online warns can do more harm than good and can destroy the lungs [I fought to get him off of this and finally did]
Within the next few weeks he consistently repeated he wanted to go home whenever doctors gave him the choice
2 of my sisters repeatedly talked him out of going home and ultimately talked him into agreeing to his ultimate untimely demise via euthanasia or assisted suicide.
Although the MANY doctors involved with dad’s hospitalizations consistently disagreed throughout this ordeal, some [not all] helped convince him this was the best way.
My sisters deliberately did this in my absence because they knew of my deep Christian pro-life beliefs and my ongoing fight for my own two sons’ lives and also knew I would fight this decision to end dad’s live tooth and nail.
All nutrition, all IV fluids, and all medication was taken away from dad [even that which he took prior to admittance for diabetes and glaucoma] and only IV morphine was administered until his systems failed and he died.
All this [from the blackout and admittance to his death] occurred in little over 2 months time!!!
I have a list of the medications he was taking at the time this horrible decision was made. Even his eye drops were denied him.
I had been back and forth to his bedside during this time [from my home in WV where I care for two totally disabled young men] and he had always told me he wanted to get well enough to go home and I fought my sisters when they finally convinced him [during a time when dad had rebounded and COULD have gone home]to go into a nursing facility to “get stronger”]
I intended to come back when he DID finally go home to take care of him until I could help him adjust to any therapies he might need either short or long term. Every one of my sisters was well aware of that plan.
Caring for my sons, I had learned to do many of the procedures dad might need at least at first, and had no qualms about helping dad learn to live with them as my sons have done for over 15 years during which time they have remained surprisingly healthy and happy despite their many ‘limitations’.
So many complications and in my opinion bad decisions by doctors created so many problems that didn’t exist upon dad’s admittance to the hospital. I had seen this happen with my sons as well during their numerous hospitalizations, but I knew nevertheless dad wanted to live and could live at least until it truly was time for him to die.
Dad was old, but he was NOT DEAD YET and should have been allowed to do what he REALLY wanted to do which was to return home to live, or even to die, if in fact that WAS what the outcome would turn out to be.
I believe my dad was murdered.
I have had no peace about this since.