It would have been morally wrong for me to override all reason and insist on tortuously prolonging her dying process as long as possible.
And in Mother's case, she was dying, but not dead.
I’m so very sorry. It is one of the most difficult decisions any one can face. But I understand. I went through a similar situation with my mother in 1996 and then my father a year and a half later.
In my mother’s case, she was admitted to the hospital, the coronary intensive care unit (CICU) on the morning of December 30th 1995 for what was at first thought to be a heart attack because of her chest pains and history of angina, although it didn’t at first seem very serious. My father and I spent that day and the next with her and I went back to the hospital New Year’s Eve evening, left at about 9:00 PM. Her last conscious words to me were “please pray for me”. A little after 11:30 PM I got a call from the hospital (Johns Hopkins) telling me that she was in extreme respiratory distress and asking me to give them permission to put her on a ventilator. Of course I said yes, then I called my father, called my brother asking him to pick up my father – my dad wasn’t in the best of health at the time and wasn’t able to drive at the time, and called my nieces and nephew and drove straight to the hospital. I still remember seeing the New Year’s Eve fireworks as I drove through the city. I didn’t get any sleep for the next 48 hours.
The moved her from the CICU to the medical ICU. She had had a very mild heart attack but that wasn’t the real problem, she had acute pancreatitis. Things went from bad to worse over the next few days as the doctors tried everything to treat, support and stabilizer her. She never regained consciousness. Her kidneys shut down and she was put on dialysis. She became very swollen with fluids and her skin started turing yellow as her liver was also failing. We had almost daily conferences with the doctors, who I will say along with the nursing staff, were extremely compassionate and more than willing to fight for her life. They performed many tests and scans, gave her antibiotics and other medications including insulin since her pancreas had ceased functioning.
After two weeks in ICU, the doctors, several of them including the chief of gastroenterology and neurology told us that my mother’s pancreas had in their words “gone haywire”. This puzzled them as my mother did not drink, smoke, had no indications of gallbladder disease or gall stones, any history of cancer, had been in good health, nothing that would explain why she suddenly became so sick. What they told us was that her pancreas was pumping out toxins; digestive enzymes all through her blood and throughout her body and that her pancreas was basically liquefying and digesting its self along with her other internal organs. Her last EEG also showed that while she was not “brain dead”, there was still blood flow and some electrical activity, her brain was shutting down as well, the poisons her own body was producing was slowly killing her brain cells. They told us that in very rare cases, a person could have their pancreas removed and live but not without massive amounts of medications but with her kidney and liver also failing and her condition and the brain damage, that she’d never survive such a surgery, and even if in the extremely unlikelihood she could, she very likely would never get off a respirator, dialysis or ever regain consciousness. The doctors recommended that she be removed from life support although we never felt pressured to do so. They told us that keeping her on life support and dialysis would only keep her body functioning for at best a few more weeks before catastrophic organ failure and complete brain death but told us that if we wanted to keep her on life support until then, that was our call.
We, especially my father (my parents would have celebrated their 50th anniversary that June) agonized over what to do. I also remember my mother and I talking about the Karan Ann Quinlan case when I was a teenager, mostly to warn me about the dangers of drugs but also about the right to life and end of life issues. While she was a devout Catholic, a very traditionalist Catholic and she didn’t think that a person in a coma should be removed from life support as they had a chance of recovery, no matter how slim, but she also differentiated that with the use of extraordinary measures and artificial means to keep someone alive when artificial means was the only thing keeping them alive and when it was cruel and futile to do so. My father, brother and SIL who are also devote Catholics and after talking to their priest, agreed that that it was time to say goodbye and let her go. The priest came in and gave her Last Rites. My father didn’t want to be present when the respirator was removed so I stayed with him in the hospital cafeteria. My brother and SIL were present. They told us that after the respirator was removed, there was no spontaneous breathing, no gasping for breath as we were warned could happen, she just quietly slipped away, her heart stopped beating within minutes. She was 71 years old. I miss her every day.
And the doctors asked our permission to perform an autopsy which we granted after they explained how puzzling her case was and how perhaps they might learn something that might save someone in her condition in the future. The result of the autopsy was that her pancreas had become a gelatinous mass but there was no cancer, no gallbladder or gall stones, we reiterated that she was not a drinker or a smoker and her PCP confirmed this and that she wasn’t on any meds that could cause pancreatitis; it was as they told us idiopathic, meaning that there was no explanation for what happened and why.
A year and a half later my father was admitted to the same ICU for bacterial pneumonia. He’d had many, many health issues since he had bacterial meningitis and almost died in 1992 and spent over two months in the hospital. After my mother died, he had a living will and advanced directives done. He told me many times that if there was no hope; that he didn’t want to be kept alive by artificial means.
When he was first admitted to the hospital in 97, it seemed that he might pull through but a few days later had to be put on a respirator. He couldn’t talk but he kept pointing to the vent and shaking his head and finger at me and mouthing the word “No”. He even tried to pull it out at one point and had to have his hands restrained. I kept telling him what the doctors kept telling me, that he would recover. But after nearly 8 weeks in ICU (every day of which I was at the hospital) and on a vent, then given a tracheotomy, tubes put into his chest and lungs to drain fluids and 2 weeks in, losing conciseness and slipping into a deep and unresponsive coma, it became increasingly evident to me that he wasn’t going to pull through.
But one again and to their credit, the doctors and Johns Hopkins weren’t willing to give up right away, even with his living will and advanced directives. They kept trying new cocktails of antibiotics and various respiratory therapies. Many of the same doctors and ICU nurses remembered me and had treated my mother and “visiting hours” rules and such were ignored, I came and went as I pleased and at any time of day or night and for as long as I wanted and because I treated them with respect and asked calm and intelligent questions and listened to what they said, they did the same for me. Since Johns Hopkins is a teaching hospital, I learned that the best time to find out what was going on was to be there for daily rounds. Typically visitors aren’t allowed during rounds but since I had such a good rapport with the staff, they never prevented me from coming in and never asked me to leave and I would quietly sit and listen and take notes, sometimes researching and later ask the primary ICU doc on duty questions to which she or she was always amazed and several times asked me if I was a medical professional, one time one of the docs telling me that I should be as I had a very good grasp and understanding of medical terminology and physiology and asked very good questions.
A rather funny story: one day I was standing at my father’s bedside, looking that the monitors, his blood ox, BP, heart rate and looking at his chart; when a tech came in to deliver a pint of blood. He handed me the bag of blood, to which I said, “Thanks but what am I supposed to do with this?” He said, “Aren’t’ you a doctor?” “No” I said, “I’m his daughter.” “Oh I’m so sorry, it’s just that I see you here all the time, and you seem to know what you’re looking at, I hmm, I just, hmm, I’m so sorry I thought you were one of his doctors”. “That’s OK.” I said as I was holding a cold bag of blood, “I’ll ring the Sara, the RN on duty and she’ll know what to do with this”.
But near the end of the 8th week, I finally asked chief of ICU, “How long do we keep doing this?” He said, “I’m so sorry, we’ve reached the end of all we can do. He’s slowly downing in his own lungs and nothing we’ve done or can do now is reversing this course. If you are telling me you want him removed from life support, I would medically, ethically and morally support that decision.” After talking to my brother, we agreed on removing him from life support. My father was not brain dead and after the respirator was removed, it took several hours for him to pass, every minute of which I was holding his hand and stroking his head and talking to him. He never responded to my hand or to my voice. His respiration slowly got shallower, his heart rate and blood pressure slowly decreased until he peacefully passed.
I was rather surprised that a week after my father’s funeral I came home from work to find a bouquet of flowers and sympathy card sitting at my front door. It was from several of the nurses and one of the doctors from the ICU.
I don’t think in either my mother’s or my father’s case, that we as a family or their doctors made the wrong or in any sense an immoral decision.
Like you, I am confident that everybody in the hospital was acting with genuine skill, caring and good faith. (Years later, there was one resident we encountered who had a "Why treat him, he's got nothing to live for" attitude toward my father, but that's a different, longer story.)
Anyhow, it must be pretty wretched when the deceased, like this Jahi, is very young, her death was unexpected, and you're not at all confident in the doctors' judgment.