I'm surprised no one has brought this up........
Florida House authorizes Bush to intervene in coma case
My wife and I have talked about this more than a few times. We both work with patients on life support and see this sort of thing first hand. This is such a huge issue, with many arguements to be had on both sides. Some for pushing science to the max and doing everything we can do, and others say allow the person to die the way God intended.
All to often a person is kept alive with a ventilator breathing for him, and tube feeding eating for them. Many times the person has been through a long struggle. One case that sticks out in my mind is an unfortunate woman who had a coronary artery bipass surgery.. open heart surgery. The poor girl ended up getting a staph infection.. and necrotizing facaitis... known as flesh eating bacteria. This woman spent 6 months on life support literally being eaten away... we could not wean her from life support.. she developed a pshychotic confused state.. she suffered. What makes this story REALLY sad is that before she became disoriented and confused she asked to be taken off support and allowed to die. So we did just as she asked. Unfortunately her husband couldn't envision life without her.. and quite frankly was to simple to understand that no matter what we did this woman would suffer and eventually die. So when she couldn't speak for herself he insisted she be put back on the ventilator. All this is extremely sad. The hospital bill excedes 1/2 a million dollars ( I know this because the husband confided this information to me) our hospital will "eat" most of the bill.
There are so many more different types of people on life support. We have ALS (Lou Gehrags(sp) Disease), we have spinal cord injury, ect. Many a trauma victim has lived to see a better day because of life support.. so in my opinion there is a time and place for it.
My wife has told me she doesn't want life support.. period. I told her tough sh!t... we'd see if she had a reasonable chance of pulling through first. I hope I am never in that position. Who's to say that my greif wouldn't put me in such a state of denial that I wouldn't be able to comply with her wishes? I personally want life support... but only if there is a reasonable chance of recovery.
This is a tough one...
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benzocaine
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Gene DeMambro
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This case illustrates the prime reason why everyone, 18 years or older, should see a competant estate planning atorney to draw up a will, power of attorney, a living will, a health care proxy and advanced directives regarding end of life care. Make your exact wishes known to your family and your doctor so that no one is fighting over you, either before or after you pass on.
Tough case, but this is what makes us human....
Gene
Tough case, but this is what makes us human....
Gene
Yes, this is a very tough decision...
(Let's see... devil's horns: check... asbestos suit: check... tongue partially planted in cheek: check...)
Do I chose to be taken off of life support and let my wife get the lucrative windfall from my life insurance policy (With my previous wife, the answer would have been "Hell NO!", but I know my current wife doesn't care about that money for many reasons, but mainly 'cause she doesn't even know she'd be set for life if I passed)
OR
Do I figure that I've paid all this money for health insurance and they deserve to pay some of it back! So... keep me alive as much as possible, no matter what, and bill the rip-off insurance company for everything! (yeah, I know, they'd find a way not to pay...
)
(Let's see... devil's horns: check... asbestos suit: check... tongue partially planted in cheek: check...)
Do I chose to be taken off of life support and let my wife get the lucrative windfall from my life insurance policy (With my previous wife, the answer would have been "Hell NO!", but I know my current wife doesn't care about that money for many reasons, but mainly 'cause she doesn't even know she'd be set for life if I passed)
OR
Do I figure that I've paid all this money for health insurance and they deserve to pay some of it back! So... keep me alive as much as possible, no matter what, and bill the rip-off insurance company for everything! (yeah, I know, they'd find a way not to pay...
)
Last edited by Deep Sea on Sat Oct 25, 2003 12:59 am, edited 2 times in total.
A living will is always a good idea, but the best thing is a proxy who is level headed, not too close to you to make the hard decisions, who understands that he or she is NOT responsible for what they decide because they are only to act as your voice, not a separate decision maker. And no matter what your living will says... make sure that proxy and everyone else who might be asked knows what you want. (this can be set up sans lawyer).
The most important point for many older americans or those with medical problems: it is not a decision about whether you want to live or die. Obviously ewveryone wants to live. The question is: what is the likelihood of return to an acceptable quality of life? If you are 80, no matter how spry, and you are coded, the odds are about 1% or worse that anything good will happen and 99% that you will suffer and die or just die in what looks like a football pileup of crazed medical professionals. Go Gentle. DNR / DNI, no feeding tube. Tell your loved ones.
My big question here: what business of it is Jeb's? Piss off--the husband is the appropriate decision maker.
Here's something I finished writing just yesterday, as a coincidence; feeding tubes (PEGs) and code status (full = do everything, DNI = no breathing machine, DNR = no shocks, chest compressions, IR = interventional radiology; ALS = Lou Gherigs, fatal degenerative neurologic disease) feature prominently.
"I first met Jane when she "finally" agreed to accept a nasogastric tube at the tail end of my co-intern's post-call day. This was just a few months into the year, before I knew to use scopolamine to quiet a death rattle, before I knew on a fundamental level that you don't put a PEG tube in someone with days to live. Steve signed out at 7 after tracking me down in the nurses' station.
"I just can't put in an NG tube now." He dropped heavily into one of the swivel chairs, grimacing at the nighttime skyline visible from the fifth floor windows. "I'm beat. Do you mind?"
I said I didn't. "What's it for?"
"It's freakish. She's 36, been getting weaker, falling, slurred speech for a *year*, finally comes in to see a doctor 5 days ago and guess what, she's got end stage ALS. She's in for a PEG by IR and needs NG decompression overnight. She can barely manage any secretions. Oh, and she's full code."
"Full?" I asked skeptically. "Why?"
"Can't let go," Steve said. "Family heavily involved. I really have to go see *my* family for once. Thanks for doing the tube." He rose and trudged off the ward.
I went to see her shortly after. Her mother, brother, and sister sat on her bed, essentially cheerleading each labored breath. Cachexia outlined the bones of her skull in a cruel reminder of what lay ahead for her, but she still had fight in her eyes. The tube had already been explained to her so I briefly reviewed it, then lifted the lubricated tip to a nostril and began to insert it. Her face contorted and turned away and she lifted a stick of a forearm with more strength than the family had seen that week.
"You need this if you want the PEG." She nodded. "But you don't have to have the PEG."
"I want it. I have to get the PEG. So I can get my strength back." My concealed reaction was something like the stomach's rebellion to the first dip of a roller coaster. She was in full denial, with her family, and doctors, complicit. I tried again, and again her body refused, and so I gave up for the night.
------
My second and last night with Jane came 96 hours later. Scott signed her out thusly: "She got the PEG. Looks real bad though. She's DNI now. But otherwise she's full. Wants CPR. Family still wants everything."
I looked up from orders I was writing on my latest admission. There was another waiting for me, a third on her way from the ER. "You mean you want me to watch her have a respiratory arrest, wait until she cardiac arrests, then shock her for no reason?" He nodded. "Why??"
"Like I said, no one's letting go."
"But it doesn't make any sense. Who's idea is it?"
"Hers. I'm not saying it's a good idea."
My mouth started to form a rebuttal, then stopped. Steve trotted off, and I got one of his pages--from Jane's nurse--before he even made it to the stairs.
"She doesn't look well." She had the unsettled tone of a nurse who knows the treatment plan is a disaster in wait.
"What's that mean exactly?" I asked.
"For starters, her heart rate is 160, and she's minimally reactive."
"I'll be right down."
Two minutes later I peered though a thick crowd of tearful family members at Jane's wasted body. She was sinking into her bed, pale, with beads of sweat on her forehead, as restless as her weakening body would allow. Failing accessory muscles pulled with each breath. A listen from 10 feet away assured me she was aspirating continuously. Her brother squeezed her hand firmly, and a sick shiver ran through her, but her sunken eyes opened only a second. The nurse whispered: "Her blood pressure is 95. This is her EKG."
It was sinus tach, the fastest I had seen, or have seen to date. I motioned the family outside and we shut the door. They looked up at me through tears, the nurse as if ready to spring into action. They asked me to be honest.
"She's inhaling all of her secretions. I think we can all hear that." They nodded. Before I could continue, her sister blurted out, "I think she needs the breathing tube," and choked. The assembled family nodded in agreement.
"Remember, she asked us not to do that. She said she only wanted life support for her heart." They understood this, but months of denial had left them no time to say goodbye. I took a deep breath and continued. "I'm worried this is her last night. I think it's important that all of you stay with her. And I think it's time we start thinking about what would make her most comfortable." Tears broke into sobs and a group hug. This was obviously a secret from no one, not from the four-month intern, not from the family, not from Jane. I suspected no one who knew Jane and had watched her decline, and been caught up in the inertia of trying to reverse it, had yet broken the taboo against mentioning comfort.
"We're not talking comfort until her mother gets back," her brother managed.
That was fine with me. "I have to see another patient now but I will be back soon. You have to make a decision SOON. Call me if she, or any of you, need anything."
Prerenal azotemia. Diabetic foot ulcer with cellulitis. COPD flare. 3 patients later the mother returned at 9:45 pm. She was not ready to talk about death, which was ok because my other patients were only half-tucked. At 10:00 pm Jane technically ceased to be my patient because the night float had arrived, but I couldn't rationalize handing off the care of a dying patient's last hours, nor could I stand the thought of hearing Jane had been intubated because I went to take a nap. At 12:30 I managed to corral the family in the ironic, saturating dark of the solarium to tell them nothing could stop her disease and that we should make her dying as peaceful as possible. I answered questions. Yes, we can give her antibiotics, but she will still aspirate and die. No, a breathing machine won't do anything but prolong her dying. No, there's nothing experimental to reverse this. No, shocking her heart won't help because at most it will bring her back to as sick as she is now. Yes, she could be uncomfortable, but we can stop that. Yes, we will make sure.
They were unwilling to budge. They restated their wishes for a full code and hinted they would hold the hospital responsible if those wishes weren't followed. I didn't know what deadline we faced, but I imagine I would have refused to call a code if she arrested. She had already long ago passed the threshold for needing intubation.
We talked again at 3:30 am. They agreed to comfort measures. Because they had resisted to the last minute, I was almost afraid to proceed. I wrote out a progress note detailing the plan and five of them signed it. By the time it got to the chart drying tears had warped it. Morphine was initiated. We gathered around her bed.
"Can she hear us?"
"She might. Talk to her."
"Does it hurt?"
"No. She'll never suffer again." As I quietly snuck out, they huddled close as if the warmth from their assembled bodies might sustain her for a few extra minutes.
She died at 4:30 AM. I came to examine her but the family was crying like a single organism, shuddering and sobbing in a mass on the lower half of the bed. Propped up, her gaunt, grey face presided over them, still defiant but finally at rest.
At 5:30 I was allowed to pronouce her, write her death note, learn where they kept death certificates, learn how to fill out a death certificate, fill out her death certificate, carry it to the admission's office. By the time I was done, and trudged to my call room for the first time, it was 6:30 AM. It made more sense to simply begain prerounding, although walking away from that bed took all of my strength. That horrible and wonderful night had left me utterly exhausted. My mind was both dulled and distracted by images of my last moments with Jane, documenting the lack of cranial reflexes, my eyes raw from lack of sleep and shared tears.
I never saw Jane's family again. I learned nothing about Jane from my interactions with her except she had a powerful will to live. But seeing how difficult parting with her was for her family, I know she must have been an amazing person, just as one can envision the career of a star just by witnessing the drama of its passing via telescope. My memories of her death and that horrible and wonderful night have echoed through the 2 years that have passed since. In the same way, I know that wrongs done to the dying echo for decades because there is no way to right them, whether they are wrongs of comission, or omission. I don't know how many physicians participated in the plan to insert a PEG tube into Jane's stomach when she was obviously at the very end of her life. The fact that it happened is testament to the awful power generated by her cruel illness and her family's grief, capable of rendering her doctors as well as her, too weak to speak of futility.
They said in medical school that doctors once forced their decisions on families and patients, but now we understand those calls were theirs to make. So we should tell them what "DNR / DNI" means and let them decide. Since then I've seen dozens of patients abandoned to agonize over difficult decisions in a sick triumph of autonomy over compassion, many of them wondering what their doctors thought was best. So I learned first that if you know heroic measures will not help a patient, you are obligated to tell them so. Then I learned that even if they opt for aggressive care, if it will do more harm than good, you are not required to deliver it. As one doctor explained, "They can ask for a kidney transplant and brain surgery too, but that doesn't make it appropriate care." Eventually I learned that you don't even have to discuss heroic measures when they aren't indicated: I watched one attending gently explain to a terminally and acutely ill patient--and friend--of ten years that nothing could slow the disease and it was time to focus on comfort. I have never seen a more peaceful transition of the goals of care. I remember thinking my eyes must have gone wide, trying to take it all in, thinking, "*so that's how you do it.*"
After all, when death is inevitable, we are not bodyguards, and death is not failure. Patients know we are not Gods, and acknowledging that cure is beyond our power does not diminish us in their eyes. Because of our vows and the importance of our task, we are not mere employees, or witnesses. We are guides. Our task is to ease pains of the body and of the mind and to ensure they do not make their journey alone or afraid. Hasn't this been known since well before each of us was born?
"So live, that when thy summons comes to join
The innumerable caravan which moves 1
To that mysterious realm where each shall take
His chamber in the silent halls of death,
Thou go not, like the quarry-slave at night,
Scourged to his dungeon, but sustained and soothed
By an unfaltering trust, approach thy grave
Like one that wraps the drapery of his couch
About him, and lies down to pleasant dreams."
William Cullen Bryant, Thanatopsis, 1821.
The most important point for many older americans or those with medical problems: it is not a decision about whether you want to live or die. Obviously ewveryone wants to live. The question is: what is the likelihood of return to an acceptable quality of life? If you are 80, no matter how spry, and you are coded, the odds are about 1% or worse that anything good will happen and 99% that you will suffer and die or just die in what looks like a football pileup of crazed medical professionals. Go Gentle. DNR / DNI, no feeding tube. Tell your loved ones.
My big question here: what business of it is Jeb's? Piss off--the husband is the appropriate decision maker.
Here's something I finished writing just yesterday, as a coincidence; feeding tubes (PEGs) and code status (full = do everything, DNI = no breathing machine, DNR = no shocks, chest compressions, IR = interventional radiology; ALS = Lou Gherigs, fatal degenerative neurologic disease) feature prominently.
"I first met Jane when she "finally" agreed to accept a nasogastric tube at the tail end of my co-intern's post-call day. This was just a few months into the year, before I knew to use scopolamine to quiet a death rattle, before I knew on a fundamental level that you don't put a PEG tube in someone with days to live. Steve signed out at 7 after tracking me down in the nurses' station.
"I just can't put in an NG tube now." He dropped heavily into one of the swivel chairs, grimacing at the nighttime skyline visible from the fifth floor windows. "I'm beat. Do you mind?"
I said I didn't. "What's it for?"
"It's freakish. She's 36, been getting weaker, falling, slurred speech for a *year*, finally comes in to see a doctor 5 days ago and guess what, she's got end stage ALS. She's in for a PEG by IR and needs NG decompression overnight. She can barely manage any secretions. Oh, and she's full code."
"Full?" I asked skeptically. "Why?"
"Can't let go," Steve said. "Family heavily involved. I really have to go see *my* family for once. Thanks for doing the tube." He rose and trudged off the ward.
I went to see her shortly after. Her mother, brother, and sister sat on her bed, essentially cheerleading each labored breath. Cachexia outlined the bones of her skull in a cruel reminder of what lay ahead for her, but she still had fight in her eyes. The tube had already been explained to her so I briefly reviewed it, then lifted the lubricated tip to a nostril and began to insert it. Her face contorted and turned away and she lifted a stick of a forearm with more strength than the family had seen that week.
"You need this if you want the PEG." She nodded. "But you don't have to have the PEG."
"I want it. I have to get the PEG. So I can get my strength back." My concealed reaction was something like the stomach's rebellion to the first dip of a roller coaster. She was in full denial, with her family, and doctors, complicit. I tried again, and again her body refused, and so I gave up for the night.
------
My second and last night with Jane came 96 hours later. Scott signed her out thusly: "She got the PEG. Looks real bad though. She's DNI now. But otherwise she's full. Wants CPR. Family still wants everything."
I looked up from orders I was writing on my latest admission. There was another waiting for me, a third on her way from the ER. "You mean you want me to watch her have a respiratory arrest, wait until she cardiac arrests, then shock her for no reason?" He nodded. "Why??"
"Like I said, no one's letting go."
"But it doesn't make any sense. Who's idea is it?"
"Hers. I'm not saying it's a good idea."
My mouth started to form a rebuttal, then stopped. Steve trotted off, and I got one of his pages--from Jane's nurse--before he even made it to the stairs.
"She doesn't look well." She had the unsettled tone of a nurse who knows the treatment plan is a disaster in wait.
"What's that mean exactly?" I asked.
"For starters, her heart rate is 160, and she's minimally reactive."
"I'll be right down."
Two minutes later I peered though a thick crowd of tearful family members at Jane's wasted body. She was sinking into her bed, pale, with beads of sweat on her forehead, as restless as her weakening body would allow. Failing accessory muscles pulled with each breath. A listen from 10 feet away assured me she was aspirating continuously. Her brother squeezed her hand firmly, and a sick shiver ran through her, but her sunken eyes opened only a second. The nurse whispered: "Her blood pressure is 95. This is her EKG."
It was sinus tach, the fastest I had seen, or have seen to date. I motioned the family outside and we shut the door. They looked up at me through tears, the nurse as if ready to spring into action. They asked me to be honest.
"She's inhaling all of her secretions. I think we can all hear that." They nodded. Before I could continue, her sister blurted out, "I think she needs the breathing tube," and choked. The assembled family nodded in agreement.
"Remember, she asked us not to do that. She said she only wanted life support for her heart." They understood this, but months of denial had left them no time to say goodbye. I took a deep breath and continued. "I'm worried this is her last night. I think it's important that all of you stay with her. And I think it's time we start thinking about what would make her most comfortable." Tears broke into sobs and a group hug. This was obviously a secret from no one, not from the four-month intern, not from the family, not from Jane. I suspected no one who knew Jane and had watched her decline, and been caught up in the inertia of trying to reverse it, had yet broken the taboo against mentioning comfort.
"We're not talking comfort until her mother gets back," her brother managed.
That was fine with me. "I have to see another patient now but I will be back soon. You have to make a decision SOON. Call me if she, or any of you, need anything."
Prerenal azotemia. Diabetic foot ulcer with cellulitis. COPD flare. 3 patients later the mother returned at 9:45 pm. She was not ready to talk about death, which was ok because my other patients were only half-tucked. At 10:00 pm Jane technically ceased to be my patient because the night float had arrived, but I couldn't rationalize handing off the care of a dying patient's last hours, nor could I stand the thought of hearing Jane had been intubated because I went to take a nap. At 12:30 I managed to corral the family in the ironic, saturating dark of the solarium to tell them nothing could stop her disease and that we should make her dying as peaceful as possible. I answered questions. Yes, we can give her antibiotics, but she will still aspirate and die. No, a breathing machine won't do anything but prolong her dying. No, there's nothing experimental to reverse this. No, shocking her heart won't help because at most it will bring her back to as sick as she is now. Yes, she could be uncomfortable, but we can stop that. Yes, we will make sure.
They were unwilling to budge. They restated their wishes for a full code and hinted they would hold the hospital responsible if those wishes weren't followed. I didn't know what deadline we faced, but I imagine I would have refused to call a code if she arrested. She had already long ago passed the threshold for needing intubation.
We talked again at 3:30 am. They agreed to comfort measures. Because they had resisted to the last minute, I was almost afraid to proceed. I wrote out a progress note detailing the plan and five of them signed it. By the time it got to the chart drying tears had warped it. Morphine was initiated. We gathered around her bed.
"Can she hear us?"
"She might. Talk to her."
"Does it hurt?"
"No. She'll never suffer again." As I quietly snuck out, they huddled close as if the warmth from their assembled bodies might sustain her for a few extra minutes.
She died at 4:30 AM. I came to examine her but the family was crying like a single organism, shuddering and sobbing in a mass on the lower half of the bed. Propped up, her gaunt, grey face presided over them, still defiant but finally at rest.
At 5:30 I was allowed to pronouce her, write her death note, learn where they kept death certificates, learn how to fill out a death certificate, fill out her death certificate, carry it to the admission's office. By the time I was done, and trudged to my call room for the first time, it was 6:30 AM. It made more sense to simply begain prerounding, although walking away from that bed took all of my strength. That horrible and wonderful night had left me utterly exhausted. My mind was both dulled and distracted by images of my last moments with Jane, documenting the lack of cranial reflexes, my eyes raw from lack of sleep and shared tears.
I never saw Jane's family again. I learned nothing about Jane from my interactions with her except she had a powerful will to live. But seeing how difficult parting with her was for her family, I know she must have been an amazing person, just as one can envision the career of a star just by witnessing the drama of its passing via telescope. My memories of her death and that horrible and wonderful night have echoed through the 2 years that have passed since. In the same way, I know that wrongs done to the dying echo for decades because there is no way to right them, whether they are wrongs of comission, or omission. I don't know how many physicians participated in the plan to insert a PEG tube into Jane's stomach when she was obviously at the very end of her life. The fact that it happened is testament to the awful power generated by her cruel illness and her family's grief, capable of rendering her doctors as well as her, too weak to speak of futility.
They said in medical school that doctors once forced their decisions on families and patients, but now we understand those calls were theirs to make. So we should tell them what "DNR / DNI" means and let them decide. Since then I've seen dozens of patients abandoned to agonize over difficult decisions in a sick triumph of autonomy over compassion, many of them wondering what their doctors thought was best. So I learned first that if you know heroic measures will not help a patient, you are obligated to tell them so. Then I learned that even if they opt for aggressive care, if it will do more harm than good, you are not required to deliver it. As one doctor explained, "They can ask for a kidney transplant and brain surgery too, but that doesn't make it appropriate care." Eventually I learned that you don't even have to discuss heroic measures when they aren't indicated: I watched one attending gently explain to a terminally and acutely ill patient--and friend--of ten years that nothing could slow the disease and it was time to focus on comfort. I have never seen a more peaceful transition of the goals of care. I remember thinking my eyes must have gone wide, trying to take it all in, thinking, "*so that's how you do it.*"
After all, when death is inevitable, we are not bodyguards, and death is not failure. Patients know we are not Gods, and acknowledging that cure is beyond our power does not diminish us in their eyes. Because of our vows and the importance of our task, we are not mere employees, or witnesses. We are guides. Our task is to ease pains of the body and of the mind and to ensure they do not make their journey alone or afraid. Hasn't this been known since well before each of us was born?
"So live, that when thy summons comes to join
The innumerable caravan which moves 1
To that mysterious realm where each shall take
His chamber in the silent halls of death,
Thou go not, like the quarry-slave at night,
Scourged to his dungeon, but sustained and soothed
By an unfaltering trust, approach thy grave
Like one that wraps the drapery of his couch
About him, and lies down to pleasant dreams."
William Cullen Bryant, Thanatopsis, 1821.
--Ian
