In August of 2019, my family set out on a two or 3-night mini-vacation. Eighteen days later, we returned, only I was carrying my husband in a black cardboard box. This is my story and what it feels like to remove life support.
I chose the day Chris died.
My husband was on life supporting measures for thirteen days, his condition improving in some aspects and then slowly declining in others. The shred of hope was found waiting for day eleven post-chemotherapy, the day his strength would begin to return, and his body could rebound. Each day when the doctors approached me, I expected to have “the talk,” but each day, I was told there was a slight improvement in one area, or there was something else to try. The doctor would say to me, “at this time, I would not feel comfortable removing life supports.”
Late afternoon of day eleven, this phrase changed.
To authorize the death of another person, when their wishes are unclear, is a gruelling decision. I sought the opinions of every nurse and doctor as they came on shift, some more hopeful than others, but all of them honest. The scenarios play over and over in your head. There appear to be two choices, black and white, perhaps if I think hard enough, a third option will present itself, but it doesn’t.
This is what it feels like to remove life support:
I knew it was time; I realized that even if his body could recover enough to regain consciousness, what remained of his life would be very different. But even though I knew this truth down to my very core, knowing this truth in your heart and your mind is very different than saying the words out loud. To say those words out loud, and to the person set to action them, is without a doubt, the worst thing that I have ever done in my life. I hope you never find yourself in this position, but if you are, I am so sorry.
The moment is embedded in my heart with a pain never forgotten.
A deluge of anger, enough to punch a wall, yet the anger becomes truncated by collapsing defeat and overcomes. Fight mode so intensely activated for months on end, without a pause, grinds to a halt and the adrenaline drains from my body. There is nothing left but to accept failure, it’s over.
I removed the opportunity, albeit a slim chance, for Chris to say good-bye to his children. There was nothing more important to him, and I believe he would have sacrificed all quality of life to have the moment. Selfishly, there are so many things unsaid to me that I wish I heard.
I eliminated all potential for Chris to complete his “list.”
There are no letters to the children, no “For Sale” ad on his motorcycle, no passwords written down or final instructions. I took all of this away with finality. We knew he was sick; it just wasn’t supposed to happen the way it did.
Hope was grasped for and found repeatedly in the smallest places. Now there is no hope, and that is a difficult concept to accept.
Chris died at 2:07 pm, everyone else left the room, I lay across his chest for a while, I pulled up a chair and sat next to him, I held his hand.
When this stopped feeling comforting, I picked up my phone and wrote.
“Thursday, Aug 29 at 2:23 pm
I’m sitting beside Chris. He has now passed.
I’ve spent 13 days coming to this hospital room.
It’s quiet now.
No machines, no ventilator, no drip pumps.
Silent and quiet.
When I walk out of this room, my life, that has changed forever, begins.
Everything was different the second the diagnosis came, but the moment I leave this room, I step into a scary, unknown, new life.
For now, I will sit.”
I chose the day Chris died. August 29th didn’t hold a significant place in my heart until it became the day that Chris’ life was officially over.
Making a difficult decision
Was your experience similar? Please let me know how you and your family dealt with this situation if you had to face it.
Making these types of decisions are difficult and complex. Considerations can stretch beyond the patient and into the family dynamic. Emotions are running at full throttle (and then some), and if there are differences of opinions, it can be challenging to navigate.
The concluding call of removing life supporting measures comes down to the next of kin, and that can also be a heavy responsibility to bear on your shoulders.
Canadian Virtual Hospice offers some good advice on working through the process of coming to this final decision.
If you liked this post, pin for later.
Your sharing is so beautiful. I feel I’m in the room with you.
Thank you, that means a lot.
This is so touching Janice. Your explanation is so vivid. Hugs!
Thank you for sharing. No one talks about how hard and the psychological effects it has on you when you have to make that decision. Also when you wrote about knowing he was sick but it wasn’t supposed to happen this way was such an accurate theme to my husband’s passing. Thank you again!
Thank you for your comment, it is nice to know there are people out there who also understand. I am so sorry you have lost your husband as well.
My first husband Randy passed away on December 22 1998 at 7:37pm and I too had to make the painful decision to remove him from life support. He was born with a congenital heart defect and nearly didn’t survive his childhood, but as he grew his body adapted to his heart condition and he had a normal life. We dated for 7 years before we married, and had two daughters together. After 9 years of marriage, he took a fall at work one day and that seemed to aggravate his condition to where he had to seek out a doctor. The doctors decided that they could now fix his heart which they couldn’t have done 38 years ago. We chose his surgery date, November 30, 1998 because according to all the optimism surrounding his case, he’d be home and recovering for Christmas. The last interaction we had before his surgery was a long hug and him telling me that he really was afraid to do this. The surgery began at 1pm and by 10pm that night we hadn’t heard a word. About midnight his surgeon finally came out to us and said that things were going terribly wrong and they could lose him. By 2am he was stable enough to come out of the operating room. The following 3 weeks were a foggy nightmare of constant emergency trips back to the ER, keeping him sedated 99% of the time, and by the 3rd week he was placed on life support and the top of the heart/lung transplant list. The organs never came. As you stated, even if he had survived, his life would have been very different from when he went in. Anti-rejection drugs the rest of his life, and an amputation of his leg for sure. Then his organs started to shut down,and finally on December 22, a CT scan revealed his brain had undergone irreparable damage now and he had to be taken off the transplant list. There was nothing else to do but let him go. I remember talking to his doctor, both of us in tears at this outcome that neither of us ever expected. It was 3 days before Christmas. I had 6 and 4 year old daughters who hadn’t seen their daddy since November 30. They would never see him again; they were too young for that and I made the decision as their mother not to traumatize them and have their last memory of their daddy the way he was right now. He hadn’t been conscious in days, so there was no communication from him whatsoever. As other family members came in and said their final goodbyes to him, it finally was time and about 5pm that day the doctors disconnected his life supports. In the movies when they do that, it seems like it’s almost instantly the person flatlines and they’re gone. It doesn’t happen like that in real life. I sat with Randy holding his hand and talking to him, with my Dad by my side, as slowly over the next 2.5 hours his heart rate slowed, his breathing slowed and everything slowly shut down. I sat there with him for about 45 minutes after he passed, and then thought, “now what”… I had been at the hospital for 3 weeks straight almost, and it was almost Christmas. When I left that night, that was the last time I saw him. He was cremated on Christmas Eve, which was the same day that we arranged his funeral for December 28th. I had his ashes back for the funeral, and then he was placed in a columbarium in a cemetery close to our house. In the space of a month my husband was gone, and I was a widow with 2 young children at the age of 30. It was the hardest thing I’ve ever had to do also, stop life support and let him go.
That’s not the end of my story. A year later, I met and married my second husband, Russell. It may have been too fast, but he helped me greatly and understood my grief over Randy and was my rock and support all these years when all those anniversaries and birthdays came up. We built a wonderful life together, and had a daughter who is now almost 19. My oldest two daughters loved Russell not as a stepdad but as their dad also, and he was an important part of their lives. We were a true, loving family. In early 2015 at age 48, he almost died from stage 3 colon cancer. He had surgery to remove the tumor and then began a round of chemotherapy. By the end of that year he was declared cancer free and we celebrated . By March 2016 he was doing his second round of chemotherapy, the cancer had metasticized to his liver and lungs. For three more years he had countless surgeries, chemotherapy, scans, and procedures until on April 11, 2019 he passed out and collapsed due to a huge pulmonary embolism that was pressing on his heart. The next day he was life flighted to a larger hospital and spent the next few days in ICU trying desperate life saving measures. We had the hard conversations, which I hadn’t had with Randy, and I knew that he didn’t want any other measures after the ICU. He kept going in and out of a very confused and foggy state of mind, slurred speech and disorientation, due to the toxins entering his blood that his liver wasn’t filtering out. Although he wasn’t on life support per say, it felt like taking him out of the ICU and off the monitoring machines and extreme measures, was just taking him to a hospital room to die. Which is what finally happened on Good Friday last year, April 19, 2019 at the age of 52 years. It has been a difficult year, and with the coronavirus pandemic it has not made it any easier; haven’t been able to go to church, visit friends etc that help with the grief. Even my grief support hasn’t been possible for months. My girls are grown now and they are a tremendous support, our 18 year old just finished her freshman year in college and still lives at home with me, thank goodness.
At 51 I was a widow two times. I just realized how long this has become, and I apologize for the length, but hope you understand that this has been so therapeutic for me, reading about your own experience and writing down mine. Thank you. Much love and prayers.
Janice –
God bless your courage & grace. I found this “pin” this evening, less than a week before the 1 year anniversary of my husband, Joe, untimely and unexpected death. We were on vacation last year this week in North Carolina at the beach. My 12 year old son, Will, his father and I had a fabulous time at the beach. Life was good. We returned on July 27, 2019 to Northern Kentucky and spent a normal Sunday at home before the work week was to start. Monday, July 29, 2019 was my father’s 83rd Birthday. It also was the day I had to “call” my husband’s time of death – 12:15PM (which is also the date of my birthday, December 15.) Joe was 54, 11 months older than I. Our son was turning 13 years old in October and becoming a 7th grader at a Catholic Elementary School my husband went to growing up. I am from Indianapolis. I had adjusted to my new world and was settling in with neighbors, friends, getting ready a new school year for Will. Then the unexpected happened. Joe had chest pains at work. He co-owned a family business. The company and family is well known in this part of NKY. Joe was having back & knee issues for 8 months, seeing an ortho doc, our family doc, and chiropractor. So the chest pain was a new thing. He called & was a little scared, but was going by ambulance to the ER. The pain started in his chest and went to his nose. This started at 7:30AM. The EMT’s did an EKG and it showed NO HEART ATTACK. YAY! or so we thought. Will was going over to my sister-in-law’s house for a pool party with the cousins, this was preplanned. My other sister in law was going to pick Will up and take him over for me since I was at the hospital. I told Will that “everything was going to be fine.” Those words haunt me to this day.
At the hospital, they did various blood draws, the while Joe was his comedic self making jokes, but in unbearable pain, morphine didn’t even touch the pain. They did 2 more EKG’s and everything looked fine, but they decided to keep him over night for observation. That NEVER happened. Will did get to speak to Joe around 10AM. Which I am forever grateful for. Will said he knew it was going to be all right. I’m skipping through time, but he had pain off and on from 7:30AM until 11:45AM. Around 11:15 AM the did an ECHO then took him to CT Scan. When Joe can back from CT, he was on his back and was so uncomfortable the entire time him asking me to sit him up was no different than the 3 hours prior. As I sat him up, he said, “I’m foggy, talk to me Stephanie…” I got up out of the chair I was sitting in across from him and said what wrong honey, then went around the bed from his right to his left side behind him to readjust the heart monitor cord, and all of a sudden, he passed out, so I thought, but no. The ER nurse had just came in the room to re-assess his vitals, and she said, “maybe he veg…..” her voice trailed off and in my head it was “vegal out…..” but instead she started calling for everyone to come in, the cut off his clothes, I helped bc he is a “big guy” & the one nurse couldn’t remove his pants and get him set for compressions. Yes, compressions…yes, I removed his pants as they told me to stop. I said “no” (maybe an expletive came out) and told them to move and let’s get this done. Joe had his gallbladder removed, he had high blood pressure, taking meds, following pour doctor’s order about getting his weigh down.Later our doctor said that he wanted to be around for me and our son.
At this point, I was in shock. They were performing COMPRESSIONS on my husband. HE WAS NOT RESPONDING. WTF???? Wait! WHAT???!!??? What is happing? He wasn’t diagnosed with anything yet…..He did not have a heart attack, where is the crash pad, paddles, why is the monitor going frenetically crazy, no “flat line” no heart beat, what the heck was going on, I called for Joe to come back to me, bc I knew logically, that he was slipping away….After 2 rounds of compressions, the had to intabate him. WTF??? WHY???? I went up to him while they were working on him yelling in his ear to come back, but to no avail. He was gone. My life was no longer going to be the same for Will and I…..The Cardiac Nurse Practitioner knew Joe. He went on a Canadian fishing trip with our brother in-law so many years ago. So Luke knew if Joe was Bs’ing about his pain levels. I felt grounded with Luke being in the ER helping my husband. However, at 20 – 25 minutes in to the compressions, Luke pulled me aside and said, it is not helping him, you are going to have to “call it” (at least that is what my memory is telling me.) WHAT?????WAIT!!! WHAT???? NO….I need to wait for Joe’s brother to arrive before I can…..I called my husband’s death at 12:15 PM on Monday, July 29, 2019. WHAT DO I DO NOW? MY rock, my love of my life, my best friend and father of our child is GONE!
Talk about getting hit with a 2 X 4 across the side of the head, the rug pulled out from under you…..He died from an Abdominal Aortic Aneurysm Dissection. His Aortic valve wall was weak and had stretch and then ruptured and he bled out internally. It was not his heart, not a heart attack. THE TRIPLE AAA. The blessing was we did not know. Joe & I did not have any time to think about him dying. He was not scared or had time to be scared. He just died. How is the possible???? What just happened.
It got worse from there….I wish no one, not even my worse enemy, go through this horrible devastating experience. Then having to tell your child his fathered died. It is unbearable. They were buddies. They did a lot of things together. Deer camp this fall was on the horizon and all the prep to get the farm ready for the fall was a big deal. Now what is going to happen.
Besides donating his organs, eyes, corneas, soft tissue, and skin off his back, the generosity of people were amazing. The outreach from the school and parish was unwavering. It was inspiring.
But then grief got in the way…..who knew that I wasn’t allowed to post on FaceBook my grieving processes? Yep. Joe’s sister told me to STOP posting on Facebook. Wait, what? I never interfered with her sobriety recovery & told her what to do, but yet she told me to stop posting my thoughts about the grieving process. WOW! It still seems as if it was only a week ago that happened. I stopped posting. I instead used photography and Instagram as my outlet of grieving. I don’t have to deal with FB and the drama. Joe’s sister made me angry. Why and where did she have the right to tell me to stop. Grief an interesting bed fellow in life. It does not play well with others. It will cause the most sane person to become the most hypocritical person on earth. Grief is ugly. Grief causes grown men to run. God & Grace has saved me. The moon became my muse. Fear & Perceptions was my theme for the year. I did a social experiment. Do people “leave” after 6 & 7 weeks? The answer is yes. Life goes on. even for your husband’s family members, but if they weren’t there before, you can’t expected them to be like your husband and “do what needs doin'”. I need to learn not to expect so much from people and I won’t be disappointed.
See grief caused me grief and blessings. My husband wanted to be in heaven & he was going to drag me there with him. I knew he was safe. He was with God in heaven. He did not have to face being scared going to surgery knowing he might die on the operating table or worse make it through surgery, never wake up and linger for 3 days and I would have to face the unbearable deed of removing life support. He left this world loved. he left this world not afraid and not alone. I was with him. He went in an instant but, went in peace.
Janice, you are right regarding the pandemic, I’m not afraid, but for my child, I am. I worried for my parents. You see Joe’s parents are another story. His mom is 86 and his father was 88. He passed away April 17, 2020.
With Joe passing in July 2019, August 29, I was told to stop posting my grief on Facebook, then I broke my ankle September 19, 2019, I had to then evicted our tenants then rehab my rental house to get it ready to sell, Joe’s birthday was January 15, 2020, then sold the rental, then COVID happened, then NTI homeschooling started, no spring break to Chicago, then my father in law passed away on April 17, 2020, Canadian border is closed and no summer vacation to Sauble Beach, Ontario with my parents, my house is leaking(brick & block), my car needs more freon for the AC & a catalytic convertor, and life keeps coming with the restart of school in early August with Covid restriction in place and my son is going to be an 8th grader this coming school semester. I’m tapped out.
I commend you on writing and telling your story. You are not alone in this fight. God & I have you. A few of my friends have told me that I have grit & I inspire them. I am blessed to have them as my friends. I have learn grief does not erase resentment nor disappointment, and I’m not talking about my husband dying and the loss of our future lives together, I talking about family members who shock you bc you had thought they would be one way and ending up something completely different. My stupid self with expectations again. Talk about burning one’s self. You can lead a horse to water, but you can’t make it drink. I have learned that this grief game is far from over when others are involved. It’s exhausting. Then my parents are deathly afraid of Covid and they live out state. They haven’t been to my house since Thanksgiving 2019 and they are coming on July 29th to visit the gravesite. Talk about a risk for the love of their daughter, grandson and deceased son-in-law. They want to be here for Will, I and Joe. I have more grief stories, but this will have to do for now. Thank you for letting me tell my story. On July 29th, Joe can tell his.
I hope you told your sister-in-law yo mind her own business. 😡😡