This entry is a little late.
Others have been writing about the battle over the guardianship of Dorothy Livadas, a battle that has life and death consequences. Both Wesley Smith and Thaddeus Pope have written about the messy situation surrounding Dorothy Livadas.
Interestingly, both Wesley and Pope have termed this case as one revolving “futility.”
I respectfully disagree.
Here’s the short version:
Dorothy Livadas has been in a coma for over five months. She signed a detailed living will that indicated she didn’t want ventilation or tube feeding if she was in a nonresponsive state and not expected to recover. On the other hand, she also named her daughter Ianthe as her medical durable power of attorney, specifically giving her the power to order withdrawal of “extraordinary” measures.
It’s pretty clear that the current situation is what the elder Livadas had in mind when she talked about setting limits to her care. The conflict in this case is that she chose someone to make decisions for her who is apparently going against the elder woman’s written wishes.
In the face of this conflict – and no doubt wanting to free up the hospital bed- the hospital went to court to remove Ianthe Livadas as her mother’s guardian.
On the face of it, this is not about “futility,” but about a case in which there is a real dilemma in regard to what the wishes of Dorothy Livadas would be about her fate. Which should primacy? – her written wishes or the judgments of her appointed decisionmaker?
That makes it all sound so rational and reasonable when I read it, but it really is messier than that. See, Dorothy Livadas is judged to be in a persistent vegetative state. So I was really surprised when I read the opening paragraphs of this August 11th article from the Rochester Democrat & Chronicle:
When Ianthe Livadas arrives at Strong Memorial Hospital, a trio of doctors is hunched over her 97-year-old mother, tapping tendons to check reflexes.
To the rhythm of the ventilator, Dorothy Livadas’ chest rises and falls. A tube stretches from the machine into her mouth.
After a few minutes, the neurological consultant tells Ianthe there’s no sign of brain activity. He asks if she’s familiar with the concept of brain death. (emphasis added)
Brain Death?! Where did that come from? A determination of “brain death” in this state carries legal weight – meaning you can’t demand medical treatment for someone who has been pronounced “brain dead.”
So that was the big issue on my mind when the local ABC affiliate called to interview me for NDY’s take on the Livadas case. You can view the video here, along with the obligatory introductory commercial.
Below is a transcript of the portion of the segment containing my interview by reporter Jane Flasch:
Flasch: Ianthe Livadas filed papers that indicate a physician at Strong made an error when he testified that Dorothy Livadas was brain dead on August 8th. The court papers also allege a week later more medical testing happened and the doctor reversed his decision, declaring she was not brain dead after all.
Now, advocates for Not Dead Yet – that’s an organization which helps patients fight for the right to receive life support care – says there is a very important difference between someone who is brain dead and someone who is in a persistent vegetative state.
Drake: Brain death is supposed to be a clear bright legal line and in fact there would be no court case in New York State if she in fact met the criteria for brain death. You can’t argue for maintaining the life support on somebody who basically has been declared dead. It is a definition of death. And yet here they are (the hospital) pushing that envelope.
Update: On August 2oth, the Appellate Division of the state Supreme Court removed all barriers to removal of life support from Dorothy Livadas. As of today, there is no word of any action being taken.
As I said, this case should be a little more straightforward – and both the local newspaper and the ABC affiliate have done a commendable job in trying to provide straight coverage on this case.
Just a few nagging things…
Has Strong Memorial Hospital ever gone to court to remove someone as a guardian when they were acting in a way that would remove life-saving measures even if it appeared to go against the individual’s written preferences?
Were some doctors playing word (and head) games with both Ianthe and reporters with their sloppy use of the term “brain death?”
If they wonder why Ianthe Livadas doesn’t trust them, they might start looking for explanations with the use – or misuse – of the term “brain dead” in regard to her mother. –Stephen Drake
The hospital claimed in legal proceedings that my mother was in a a “coma” and “persistent vegetative state” for months; that is not true. The hospital itself had put her in its vent weaning unit well after the beginning of the claimed time period, and she was weaning successfully, with nurses telling me she was doing great the first week and would be out of hospital and off to rehab in another week, when staff put stuff in her peg tube and sat her right up, causing aspiration pneumonia, and back she went to the i.c.u., where she had to battle staph and u.t.i. infections again. In March and April, her eyes were open, she was responsive, and she was looking around. In May, she was responsive as noted in an affidavit by the Reiki practitioner working with her. Asked whether she wanted to go on even if she had to be on a vent for the rest of her life, she indicated repeatedly and consistently in the affirmative. A doctor was shocked at her alertness and her vitamin intake was drastically reduced. Nurses asked me whether the doctors had told me that she could go home on a vent; she is on very low vent settings. That’s what she’d prefer if there were no beds available at the right vent weaning place. The ‘guardians’ have obstructed every chance she has had to leave the hospital. She may very well have thought, as many people do, that “persistent vegtetative state” means “brain death” when she signed the “living will” — if she was even aware she was signing it at the same time she signed five other documents prepared by an attorney (who testified, even, that it had not been her idea, but his, and was not in her own words) who also had her sign a power of attorney to himself (in addition to the power of attorney and health care proxy she was remaking to me at the time) which contained an obscure clause allowing him to gift himself with her money. She has never, ever told me that she had that “living will” or that those were her wishes; always, before and since her hospitalization, she has made it clear that her wishes are to the contrary. The “living will” says she would not want a peg tube; the hospital threatened me with “taking you to court to have your health care proxy set aside” when it told me in December that she would not live to the next week regardless, but that it had to give her the peg tube, and said that it did not understand or “like” her “living will” and had to read it again; I’d already approved the peg tube and was still waiting for the consent form. Again I was thus threatened when the hospital claimed at the end of December that all her organs were failing (none was) and she had to be taken off life support. When my mother, whose kidneys had taken a one-day break after being revived, heard this riff, she began to put out urine within minutes, and minutes after that, when hearing a vent tech say that it’s good when a certain number on the monitor is higher than the one beneath it, she made the number go up; she’s done the same several times since when hearing me discuss the number with a doctor or resident. This woman wants to live. When she was being wheeled into the peg tube procedure the first time, she was smiling with joy (who does that on the way in to a procedure? but the hospital had left her two weeks without nutrition, and the previous month had left her a week without nutrition), and when she could not receive it that day because her oxygen sat was temporarily too low, she CRIED. That’s how much she wants to follow the “living will.” The hospital spent the first two months she was there harassing me to change her status to DNR, which her “living will” indicates she does NOT want. If I’d given in, she wouldn’t have survived to be the victim of hospital negligence at the end of December, when she had to be revived (by i.v.); immediately on revival her expression was one she’d shown several times already — “Again with this hospital!” THAT’s my mother. The brain death fiasco has been reported upon; the hospital’s lawyer and the one the judge appointed to represent her (who did the opposite) don’t get paid unless she dies (the guardianship statute is unconstitutional, requiring the person deemed incapacitated to pay all parties’ legal fees; it costs the hospital nothing to bring these proceedings, which it says it does “only” 36 times a year (which is about every 10 days); if she dies, we can’t continue the appeal, for which there is sound basis, and they get their fees which mean more to them than my mother’s life. When we were winning on motions, they tried the “brain death” gambit; I wasn’t told testing was for that, though the law required I be told; hours after signing the affidavit the doctor called and told me he feared she “might” be brain dead and wanted to do more tests; he’s said all along that he believed a xenon test would show brain activity; they didn’t have to go further than the MRI to see it. But now based on the MRI and tests done based on it to look further, they say she has adenocarcinoma, perhaps also in the brain lining, which they say has been developing for quite some time. Nine months she’s been in that hospital and only now they find cancer? At which point the “guardians” asked me, “What if it’s cancer?” “What if she has a problem with further testing/diagnosis and treatment.” “We’re thinking of making her DNR.” The same “guardians” — brought in by the hospital, and it’s been a shell game (“It’s up to the guardians, everything has to go through the guardians” and “The doctors say it’s not safe” — e.g. vitamins, being transferred to another facility, etc. — even in the presence of the same doctors who had just told me it was safe) that’s made it impossible for my mother to get the help she needs, and caused her to weaken. That’s right — the hospital has read the “living will” variously according to its agenda at the time, then forced “guardians” on us “so that it would be honored,” and now the same “guardians” who insisted on “honoring her wishes by following the living will” want to violate it by making her DNR. It’s like being in a Kafka novel/funhouse. PLEASE — I fear for her life TODAY — the “guardians” are “meeting to decide what to do” — PLEASE — can anyone HELP? PLEASE! My mother has wanted to live all along; she’s a fighter; she needs to get out of that hospital to a place where she can receive the kind of help that she wants — treatment, with complementary medicine involved as well, logic, rationality, a positive approach. She has amazing baseline vitality (you should have seen how active and mentally sharp she was before she got there) suffered terribly in that hospital fighting every day to survive it; she doesn’t want the hospital to beat her and would rather die on the way out its door. She deserves better, and this mustn’t happen to anyone else. My email address is ianthelivadas@gmail.com and my cell phone number is (646)245-4827. THANK YOU.