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If that was my child I would with draw life support. I was a Respiratory Therapist for 25 years. I've seen the suffering and I know intimately what goes on in the day to day life of people on life support. Prolonging the agony of a baby would not be my first choice. Reproduction is an imperfect process. I lost my 5 year old cat last month because his heart was gone. None of us is guaranteed a long life when that egg develops.
May I ask you from a medical stance (respiratory wise) what are the risks in sustaining someone on life support. Particularly the infants or elders? My mom was on life support and every medical doctor insisted each day that she stayed on it weakened her recovery chances. It took two days of constant bickering amongst her kids to finally decide to remove her life support. She came out of her coma that evenIng. .and they then said. ..let's trachea her!. We fought again ..and this time my mom uttered .. NO!
Curious on the deterrents in keeping a person on life support...?
End of life decisions are a tricky thing. My Mother had an advanced directive, I knew it, the hospital knew it but no one could find it when a decision needed to be made. Everyone looked and could not find it. I spent a week in the hospital with my Mother on life support. The doctors would try to get me to agree to remove life support and I cried and cried through all the conversations. I could not do it without the paper. After a week her body gave up naturally.
She had arrived at the hospital in an ambulance and when they intubated her they put her clothes and belongings paper bag in a locker. They had gone through her purse looking for her advanced directive, I had looked all around her home. When they gave me her clothing in a paper sack after she passed away I found the advanced directive in the inside pocket of the jacket she was wearing that day. Her instructions were on her body and we didn't know.
Until you are in that situation you don't know what you would do. I was in angst and agony, my Mother was only in her mid-60s and I wanted her to live. I did not want to make that decision even though her quality of life wasn't going to be there. I just could not remove life support, 15 years later reading this post I remember the indecision I felt. I would still do things the same way. If I had the AD in my hand I would have said yes, without it I could not say yes.
Unless you are in that situation you just do not know. You can say if it were me I would do XYZ, until you are standing in a hospital with a beloved family member on life support you do not even know what XYZ is.
I was in almost the exact same situation. My mother had just turned 65 and was diagnosed with colon cancer that had spread into her liver, she was terminal. After a few weeks of chemo she was hospitalized with septicemia and quickly went into a coma. The doctors told my father and I that she probably could recover from the septicemia with aggressive treatment. My father said no, let her go and I was in complete agreement, I felt no indecision at all. She never regained consciousness and passed away two days later.
Did I want my mother to live? Of course I did. But, with her prognosis, another six months of pain and suffering until the cancer would finally kill her, no, just no.
With this little girl there in no hope of recovery and multiple doctors have said she is in pain.....I would not hesitate to let her go in peace rather than drag out her suffering.
This is a very sad case where nobody is a winner- not the family, not the hospital and its caregivers, and most of all, not the patient. She has a congenital condition which is fatal, and the hospital's position is that she is suffering and most of the actions where the infant appears to be responsive and aware are, in fact, a response to pain and other uncomfortable stimuli.
Cook Children's is a good facility, and they've already reached out to many other large children's hospitals seeking a transfer of this patient, but thus far, no institution is willing to do so. Also, if I'm not mistaken, this is not Cook's first time to invoke this law. I seem to recall a thread about another case a couple of years ago......but I could be wrong.
I certainly understand the family's desperation in this situation. I truly feel for all involved.
I hate Cooks. When my 2 week old got RSV and had to go there, one doctor allowed us to be discharged early and my baby almost died that night. Terrible people
I was in almost the exact same situation. My mother had just turned 65 and was diagnosed with colon cancer that had spread into her liver, she was terminal. After a few weeks of chemo she was hospitalized with septicemia and quickly went into a coma. The doctors told my father and I that she probably could recover from the septicemia with aggressive treatment. My father said no, let her go and I was in complete agreement, I felt no indecision at all. She never regained consciousness and passed away two days later.
Did I want my mother to live? Of course I did. But, with her prognosis, another six months of pain and suffering until the cancer would finally kill her, no, just no.
With this little girl there in no hope of recovery and multiple doctors have said she is in pain.....I would not hesitate to let her go in peace rather than drag out her suffering.
But the doctor said she could recover and you let her die? Hmmm you didn't even want to try? Do you regret it?
But the doctor said she could recover and you let her die? Hmmm you didn't even want to try? Do you regret it?
She could possibly have recovered from the septicemia, not the cancer. She was terminal and at the most had 4 or 5 months left.
No, I do not regret letting her go.
In 2014 a close friend of mine died from colon cancer that had spread into his liver. He was also terminal and chose to forgo chemo. The last months of his life were filled with pain and suffering. By the time he died he looked like a skeleton with yellow hued skin stretched over his bones. The cancer slowly starved him to death as his body could no longer process any form of nutrition and he was in pain everyday. He kept praying to God to hurry up and take him.
And yes, watching him die made me think of my mother and I was thankful she was spared having to endure that horror.
My mother was lucky that she got septicemia that took her quickly and that we let her go.
You're right, it was a Thursday. They should have given it to her on a Monday
Quote:
Originally Posted by Annie53
She could possibly have recovered from the septicemia, not the cancer. She was terminal and at the most had 4 or 5 months left.
No, I do not regret letting her go.
In 2014 a close friend of mine died from colon cancer that had spread into his liver. He was also terminal and chose to forgo chemo. The last months of his life were filled with pain and suffering. By the time he died he looked like a skeleton with yellow hued skin stretched over his bones. The cancer slowly starved him to death as his body could no longer process any form of nutrition and he was in pain everyday. He kept praying to God to hurry up and take him.
And yes, watching him die made me think of my mother and I was thankful she was spared having to endure that horror.
My mother was lucky that she got septicemia that took her quickly and that we let her go.
No regret, not even a little bit.
Sorry for your loss. I'm actually surprised that the doctors even suggested aggressively treating the septicemia since she was terminal.
My dad was diagnosed with terminal AML Leukemia the end of June 2005. He had done a radical chemo trial which put the cancer into a short remission. Remission wasn't explained to us and that it could mean no evidence of cancer for a week so we were both thrown for a loop when they said it returned. It wasn't meant to be, it came back a month later.
At one point he was in the hospital to get a stem cell transplant. He had gotten very depressed due to family drama with my 2 siblings. He refused to sit up or get out of bed to walk. At one point he had fluid in his lungs; the doctor ended up draining it. I missed visiting him a total of 3 days in the 9 weeks he was admitted. It was one day that I hadn't gone to see him because my daughter had a doctor appointment. The doctor called me that night, wanting to see me the next day to tell me he refused to do anything like that to my dad again because he was terminal. After that, they found his cancer had spread into his gut. The doctors couldn't do many kinds of testing because he would have bled to death. When it's spread to the gut, it's only a matter of time.
You and your dad allowed your mom to go with some dignity. Who knows what her last months could have been like. It's very possible you and your dad saved your mom a lot of suffering. With my dad he felt worthless a lot. There were times he had no quality of life. The chemo did a number on his body (he couldn't hold his bowels) which was embarrassing for a man his age (69).
Last year, my MIL (age 85) was diagnosed with stage 4 breast cancer. It was the worst kind of breast cancer to have, they knew it was already in her lungs. Long story short, 2 years before they refused to give her chemo due to her age but were now pushing chemo; my opinion is because she was relatively healthy, they wanted her to do it to add her case as a statistic because people were living longer. She did one chemo and ended up in the ER. She went straight to hospice where she laid in bed waiting to die for 2+ months. It was a horrible time too because she couldn't even get up to walk. I'm thankful I wasn't able to travel to see her because I saw photos of what the cancer did to her body. Her whole torso was black and blue from the cancer. That's how they knew what organs were involved. I'm sad that she didn't have an infection like your mom that would have ended her suffering.
Quote:
Originally Posted by Annie53
She could possibly have recovered from the septicemia, not the cancer. She was terminal and at the most had 4 or 5 months left.
No, I do not regret letting her go.
In 2014 a close friend of mine died from colon cancer that had spread into his liver. He was also terminal and chose to forgo chemo. The last months of his life were filled with pain and suffering. By the time he died he looked like a skeleton with yellow hued skin stretched over his bones. The cancer slowly starved him to death as his body could no longer process any form of nutrition and he was in pain everyday. He kept praying to God to hurry up and take him.
And yes, watching him die made me think of my mother and I was thankful she was spared having to endure that horror.
My mother was lucky that she got septicemia that took her quickly and that we let her go.
No regret, not even a little bit.
Agree, you and your dad have nothing to regret. It takes a brave person to say enough
If it was my child I would remove the life support. I have lost a child so yes I know the pain involved. It is absolutely devastating to lose a child but it's pure selfishness to allow someone to suffer long term with no hope of a decent quality of life. Remove the life support and allow nature to take its course.
Plenty of people live on ventilators for longer than a week with no supposed 'hope' & they disagree.
They live in fear of going to the hospital because of the ableist views expressed here of ethics & 'worth'. Excerpts from an article on
'NOT DEAD YET; a national, grassroots disability rights group that opposes the legalization of assisted suicide and euthanasia as deadly forms of discrimination':
How many babies have been diagnosed while in utero as having 'unsurvivable' disorders who were not aborted & are living happy, healthy, love-filled lives now? Many.
Do you know there are people alive today that had to hear 'professionals' urging their families to pull their plug while they were in a coma?
Does anyone even realize how many medical errors are committed every day? How much of 'the good old boy' network is alive & well in medicine? Has no one here experienced more difficulty recently finding a physician who would listen to them or obtaining a second opinion than they would have 30 years ago?
Is this not foreboding?
Thankfully, I found that NOT DEAD YET has already heard of this little girl & they have swung into action. From their wheelchairs, from their hospital beds & some while hooked to ventilators, while all of us non-disabled people sit here & speculate on her 'quality' of life & the 'ethics' of continuing a life that we didn't bring to life in the first place.
This is about MONEY. The amount of money it will cost to keep her alive & the amount of money they could make from her organs. As the mom of a disabled child, I hope I live forever before they come for him next.
Not all of these decisions are made because of money.
I wish we knew what surgeries she's had. Hard to know much when the info is just not there
Thanks for the link. I found this FB page from their bit about her. Very interesting that they did tell her on a Friday, so the reality would be they gave her 5 work days to deal with it. She's very lucky she has a few organizations standing with her.
Support during stressful hospitalizations is so very important for families! We continue to work to see if treatment options are available across the county and empower Tinslee’s family to help advocate for her best interests.
When a friend was at the hospital yesterday to potentially give little Tinslee’s mother a break from the bedside, not only was she not allowed in, but she was also escorted out of the waiting room while attempting to to give this balloon and little stuffed animal to Trinity, Tinslee’s mother. It is essential for Trinity’s support system to stand with her during these difficult days and have access to Tinslee to allow Trinity breaks. Please join us in prayer that that will again resume like before the TRO was issued.
Also look for PTFK leadership to weigh in on the 10 day law that is effecting baby Tinslee and her family today at 5pm on CBS DFW channel 11 in Dallas Fort Worth
I found a new article that was linked on the Protect TX Fragile Kids FB page. I agree with them, it should be 10 business days, not 10 days period. 4 of those 10 days are weekend days that the mother and/or the advocate groups helping her can't do anything those days, leaving 6 days for them to try to make arrangements. My question, why did they tell her on a Thursday and not a Monday? Things like this should be done on Mondays and given 10 business days.
I wonder how they're making out finding a new place to take her and if she's eligible for a heart transplant. I hate to see them pull the plug if she can get a heart transplant. This little girl isn't brain dead; but I'm sure they'd want her mother to donate organs...
“This is part of what makes this the most draconian statute of its kind in the nation. You’ve got ten days – not even business days – and it’s inherently inadequate,” said attorney for Texas Right to Life, Kassi Marks. “It’s a terrible, terrible law. We would hope that it would be repealed or declared unconstitutional and otherwise not utilized against vulnerable people like 9-month-old Tinslee.”
Earlier during the 2019 legislative session, a bill to extend the 10-day rule to 45 days was proposed – but didn’t pass.
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