“Our medical judgment is that Tinslee should be allowed to pass naturally and peacefully rather than artificially kept alive by painful treatments. Even with the most extraordinary measures the medical team is taking, Tinslee continues to suffer. To keep her alive, doctors and nurses must keep her on a constant stream of painkillers, sedatives, and paralytics.”
The statement continued, “As a result, Tinslee is paralyzed at all times. She currently is suffering from severe sepsis, not uncommon when patients require deep sedation and chemical paralysis to maintain organ function. Even with medication and support, Tinslee has ‘dying events’ 2-3 times per day. When she is in distress, Tinslee crashes and aggressive medical intervention is immediately necessary, which causes even more pain.”
Her mother is obviously mentally ill. What kind of sick mind could put a child through that with no hope of recovery.
“””””Her mother is obviously mentally ill. What kind of sick mind could put a child through that with no hope of recovery.”””””
I can’t speak to this situation. I’m not there so I don’t know what the right thing to do is. I can understand the Mom not wanting to give up.
Two years ago my adult son was on life support. We were told he was the most critical patient in the hospital and had basically no chance to come out of it. He survived that episode. He survived a number of bad situations since then and has stunned many doctors.
But shortly before Christmas they told us his tumor has started to spread rapidly and now there is no hope for survival. They talked about hospice care and other things a parent never wants to hear.
You have heard President Trump at his rallies talking about the Right to Try law he signed. That gave my son a final chance and he is now on a very experimental drug. There is not much chance but it gives him a tiny bit of hope because he does not want to give up. Maybe it will help further the research so patients in the future with the same rare cancer will be helped
As I saw and read from a statement from one of her NICU nurses saying to the effect: “even something as simple as changing her diaper or rolling her from side to side to prevent bed sores will send her into respiratory and or cardiac distress if not full out arrest, a “dying” event that happens 2-3 times a day - Tinslee crashes and aggressive medical intervention is immediately necessary (I’m guessing this means cardiac resuscitation of some type), which causes even more pain, and us administering more pain killers and sedation.”
Since her birth in February, she’s had had seven surgeries and three open heart operations so this is not a case where the doctors or the hospital haven been writing her off or refusing to care for her. But there is nothing more surgically or clinically to be done for her. She is dying and will die. The question at hand is how long to keep her on life support and enduring painful interventions before that happens.
People need to understand that there is a limit to what even our most advanced medical care can do. Some see the doctors and the hospital as heartless and the mother as heroic in her quest to keep her baby alive on life support while hoping for some sort of miracle. But I see this case as the opposite.
And this is not an issue of the cost or who is paying or going to pay for it. It is a question of medical ethics. Just because we “can” keep a person “alive” by artificial means, if that person is without question as in this case, not going to recover, should we, especially when that extension is causing even more pain than their condition or what they would experience if removed from life support? Some will say that it is the parent’s call or the families call, but the doctors also are supposed to follow a creed that says “first, do no harm”.
And to what point do we expect doctors and hospitals to follow the directives of the family against all medical advice? If Tinslee’s mom told the doctors to do another open heart surgery and the doctors said there are no more surgical procedures possible or any that would not help, that any such attempt at surgery would surely kill her but which also would cause the poor baby much pain, does that mean the doctors have to do it anyway? What if the mother insisted on herbal remedies or chakras or healing crystals or homeopathy or some voodoo exorcism rite, does the mother’s wishes get to dictate that care too?
And in this case it is not a question of maybe there is another treatment or surgery that could save her or that some other doctor or hospital could do something more or try something else, even an alternative treatment, and the hospital has been talking with the family for months over the child’s eventual outcome and working with the family for months, yes months, to find, a facility, any facility that will take her. They haven’t found any because there likely aren’t any. With her fragile condition where even moving her to change a diaper or prevent bed sores causes her to crash, how is she supposed to even be moved? And it seems that no other hospital can provide better care than this one has.
I understand the pain and the difficulty of letting go. In a span of a year and a half I sat at the beside of both of my parents as they were removed from life support.
In both cases - with my mom’s acute idiopathic pancreatitis that left her both in a coma and with cascading organ failures including both her liver and her kidney’s, intestines, stomach, the acids from her pancreas having pretty much liquefied her internal organs and the resulting sepsis having gone through her blood stream and into her brain causing irreversible brain damage, and with no hope of recovery, and with my dad who had acute bacterial pneumonia resistant to treatment and that was slowly drowning him, I knew and understood that the doctors and nurses in both cases had done everything medically and humanly possible.
In my father’s case, after 8 weeks in the ICU and on life support, unresponsive and getting worse by the day, the intubation becoming more and more difficult as they couldn’t keep up with the fluids in his lungs and one cardiac arrest and no antibiotics in their arsenal helping, I was the one to first bring up if it was time to remove the life support but it was his team of doctors at John’s Hopkins who keep saying, “lets try another antibiotic, another treatment, let’s give this a bit more time” so they were not pushing me to “pull the plug”. Until one day they called for a family meeting and went over in great detail, all that had been done or could be done and conceded that they had failed. It was the same in the case of my mother.
The doctors were baffled by my mother’s case as her pancreatitis came on so suddenly and she didn’t drink, didn’t smoke, there were no signs of cancer or gall stones – nothing in her medical history that would put her at risk. It was just as if one day her “pancreas just went crazy” as one doctor told me. But again, the doctors and the nurses in the Johns Hopkins ICU did everything they could and were so kind and compassionate and supportive and kept us informed all the long the way.
In my mom’s case after two weeks of her in the ICU, they called a family meeting and went into great detail of my mother’s condition. They told us that while it might be possible to remove her pancreas, it was unlikely as it, along with her other organs had somewhat liquefied because her pancreas was along with her stomach were pumping digestive acids into and all throughout her abdomen, and if even if they were able to remove it, she would never get off dialysis as her kidneys were no longer functioning and never would and that she would never come off of a ventilator, would for the rest of her days be on a feeding tube, and even that would be a challenge because a large part of her stomach had been damaged, that she’d have to be given insulin and monitored closely, along with a big cocktail of meds and hormones, but most of all, she would in their opinion, she’d never leave the ICU or regain consciousness and even if they did all of these things, at best she might live a few more weeks or months. They gave us, her family a choice but it was obvious to us, her family that the only real and compassionate thing to do was to remove her life support and to let her go. One of her ICU doctors at this meeting at the end, he cried and he came up to me and hugged me. I truly felt the deep compassion he had for my mother and for our family and how much he regretted that he couldn’t do more, couldn’t save her.
And FWIW my parents and my older brother were all traditionalist Catholics and very pro-life. They consulted with their traditionalist priest who agreed with the doctor’s on removing life support in both my mother’s and my father’s case. And this priest gave both my father and my mother Last Rites and they both had Catholic burials.
My dad and my brother couldn’t bear to be with my mom as she was removed from life support so I was the only one to be with her. The ICU nurse who I had by now had gotten to know quite well and had become friends with, told me they would give my mom some morphine to ease any respiratory distress she might have but warned me that it could still happen, she might gasp or convulse or appear to turn red or blue. But this was not the case. When they removed the respirator, as I was holding her hand and stroking her forehead and telling her that I loved her with all my heart, she didn’t even try to take a single breath on her own, there was no struggle or any signs of pain or of distress, she simply died in less than two minutes as evident of her cardiac monitor as it flat lined. But I would swear that in her last seconds before she flat lined, a faint smile crossed her face. I’d like to believe she was seeing the face of God.
With my dad it was a bit different but not all that much. He breathed faintly and shallowly on his own for about ten minutes but he didn’t struggle at all, it just became slower over those ten minutes and then stopped and as with my mom, I was the only one there and I held his hand tightly and told him he’d soon see my mother. He breathed but less and less and finally just stopped. And once again he seemed to smile in that last minute and to be at peace.
But this mother is unwilling to accept the truth and is desperate to see her baby live. But I would bet however that the doctors and nurse at this hospital are just as compassionate and as caring and also as truthful as my parents care givers were in my parent’s cases as they are about Tinslee.
I in my experience would like to tell this mother that letting go and being with your loved one or your child in their last very last moments can be the most life affirming and beautiful experience. That letting go and letting God takeover is sometimes the most compassionate thing we can do if we really love someone.