Elderly woman restrained to Bipap. Pls advise!

I have an elderly friend from Italy, who has no family here, doesn't speak English well, and is in a hospital because she never recovered well from hip surgery nearly three months ago, losing so much weight she is nearly a skeleton. I can go into more detail about her case, but I want to get to the essential point here:

Her Sa02 went too low about a week ago, and they took her into ICU and put her on BiPap. The pressure is 18 and 8 around the clock. (Sorry, I don't know the terminology for the BiPap pressures, but I think that gives enough info.) That seems incredibly high to me!!! She is a weakened shell with three terrible infections raging in and on her body now, and they have this pressure up so high. The thing that really is horrifying to me is that they have her restrained because she kept trying to take off the mask! This now-75-pound woman's hands are tied to the bedrails so she can't take off this super high pressured bipap. She is surely a dying woman, and this seems utterly barbaric.

While I try to get the responsible party to consider having them free her and letting her go to hospice care, I could use some ideas about this BiPap pressure. To me, who gets aerophagia and chokey-feeling at anything over 8 (admittedly wimpy, but I'm working on it), 18 seems like it must be torture for a frail, dying old woman, especially if she can't do anything about it. No wonder she tries to rip off the mask! I talked to the respiratory therapist, but she said it's the pressure she needs, and it's not that bad. If anyone here can provide me with info on this, I would like to pass this along to the responsible party as well so this dear woman can have comfort in her last days.

Thank you.

That does sound pretty bad. Can she make her own decisions about her health care... who is responsible for her care? I think that's where you would want to start.

How "elderly"? Does she have her faculties?


Den

She's not that old. Only 78, but she has had many physical problems her whole life, starting with polio...But before all this weight loss, she absolutely had all her faculties and then some. However, she signed a paper, as it turns out, stating that she wants life-saving measures. I just read it the other day, and I can see how she would have NO idea that it could lead to a nightmare like this. (Tubes in every conceivable place, too.) She is what the hospital calls a "full code." That means if her heart fails, they have to bring her back via those shock paddles or whatever they can. I know she wouldn't want this. Her friend, 74, who is from Italy, is the responsible party, and she doesn't know what to do. The doc doesn't give her very helpful "prognosis" information, apparently. My friend now seems almost entirely unable to speak, and before they restrained her she was refusing all meds, trying to pull out her pic line, not letting nurses touch her, etc. It seemed like she wanted to go, because despite some confusion, she seemed like she was still "in there."

I did think those pressures were pretty high, but I didn't know for sure if they correlated to CPAP pressures.

san_fran_gal wrote:She's not that old. Only 78, but she has had many physical problems her whole life, starting with polio...But before all this weight loss, she absolutely had all her faculties and then some. However, she signed a paper, as it turns out, stating that she wants life-saving measures. I just read it the other day, and I can see how she would have NO idea that it could lead to a nightmare like this. (Tubes in every conceivable place, too.) She is what the hospital calls a "full code." That means if her heart fails, they have to bring her back via those shock paddles or whatever they can. I know she wouldn't want this. Her friend, 74, who is from Italy, is the responsible party, and she doesn't know what to do. The doc doesn't give her very helpful "prognosis" information, apparently. My friend now seems almost entirely unable to speak, and before they restrained her she was refusing all meds, trying to pull out her pic line, not letting nurses touch her, etc. It seemed like she wanted to go, because despite some confusion, she seemed like she was still "in there."

I did think those pressures were pretty high, but I didn't know for sure if they correlated to CPAP pressures.

Is she on a bilevel or variable pressure machine? That's my first observation. If bilevel (BiPAP), then those pressures are set EPAP/IPAP. If it's a variable pressure machine (VPAP) then that's the range the machine is set at to capture apneas & hypopneas and may not be blowing hard continuously.

The resp therapist says it's BiPap, and when I expressed concern about the strong pressure, she didn't mitigate her replay with anything about it being variable. And sadly, it's not just for sleeping. It's all the time. She is starting to get sores on her face now from the FFM, and they're trying to move her to one of those monster-sized full face masks (that cover her entire face!) but I don't think that has happened yet.

I'm so glad you brought this to the forum! I know very little about bipaps but lots of people here do so I'm sure you will get some help, or at least some reasurance for you, about this poor lady!

As I said to you, how fortunate she is to have you!

Thanks, Hawthorne. I wish I could do more for her.

If anyone has info on if this pressure (18 in, 8 out), I'd love to hear your thoughts.

san_fran_gal wrote:Thanks, Hawthorne. I wish I could do more for her.

If anyone has info on if this pressure (18 in, 8 out), I'd love to hear your thoughts.

That's the way the Bi-Level pressures are set.......the higher pressure being the INHALE (IPAP) pressure and the lower pressure being for EXHALE (EPAP). Her exhale pressure isn't all that bad, but the inhale pressure is pretty high. It seems to me that the only way they would have had to determine those pressures would have been to have a sleep study with bi-level titration. Without one, they're just "guessing".

Does she have any "legal council"? If not, I think it would be time to get some.

Den

No, she definitely had no such study.

Hmm, legal counsel. Her friend has the ability to decide to release her from all this torment, but I'm not sure she is ready to do this yet. As for legal counsel, I wonder if that would be pricey. My friend has no money or assets, and I'm quite tapped out. Maybe there's a website out there where lawyers answer these kinds of questions. I can check around. Thanks Wulfman.

san_fran_gal wrote:No, she definitely had no such study.

Hmm, legal counsel. Her friend has the ability to decide to release her from all this torment, but I'm not sure she is ready to do this yet. As for legal counsel, I wonder if that would be pricey. My friend has no money or assets, and I'm quite tapped out. Maybe there's a website out there where lawyers answer these kinds of questions. I can check around. Thanks Wulfman.

SOMEWHERE, there should be/have been a prescription for her use of the (Bi-level) machine with prescribed pressures.....just like we received from our doctors before we were able to get our machines. If there is no prescription along with how those pressures were determined, they could be on shaky legal ground.

This may not be on par with "water-boarding", but for an unsuspecting elderly person, it could be close to feeling like "torture".


Den

I am sorry about what your friend is going through but let me assure you that these are actually very normal and somewhat low normal BiPAP settings for an ICU. When we use a BiPAP in an ICU setting, it is used to ventilate people in a non-invasive manner. That is, to breathe for them without intubating them with a endotracheal tube and placing them on a standard ventilator. BiPAPs are used to prevent intubation, to avoid re-intubation after a patient has been extubated and is not doing so well and as a method of long term ventilation for patients with certain degenerative disorders. I have infant patients who are on BiPAP settings of an IPAP of 30 and an EPAP of 10-14 and pediatric patients on settings of IPAPs of 34-40 . The Respironics Vision, which is the standard BiPAP machine used in US hospitals goes to a IPAP setting of 40 cm H20 so you can see 18cm H20 is quite low. The IPAP pressure is set to assist the inspired volume or to fully take over breathing and create the inspired volume. The settings are adjusted by blood gases,chest rise, measured tidal volume, patient condition and chest x-ray.

Patients that are in the ICU are often very confused and combative. Their illnesses, along with medications can make them very unaware of what is going on. It may seem to you that she wants things stopped but on the other hand, she may have no idea of what is going on. I have spoken to countless patients that have gone through horrible, prolonged ICU ordeals and many of them state afterwards that they have no recollection of the time, even though they seemed purposely combative, etc. The difficulty is, that she had complete control of her faculties before her illness and she asked for full support in the event of an illness. Physicians and hospitals must abide by those wishes even if it appears futile. it is not our decision, it was hers and a court of law would agree.

I would suggest that you speak to the friend who is responsible for making medical decisions and ask her to speak to a social worker and request a care conference ASAP. The hospital will get all her physicians, specialists, a social worker, the RT, the bedside nurse, chaplain , etc in a meeting, all at the same time, with the family friend and other family to discuss her care, her prognosis, short and long term goals, etc. This type of meeting is the best way to get all the involved individuals together and hopefully formulate a plan that best serves the interest of your friend, while abiding by her wishes. I hope only the best for her. She is lucky to have a friend like you.

I agree with everything Pekoepup said. In addition most hospitals now have patient advocates. These advocates will work with the friends of the ill when no family is available. They can get you needed information for medical decisions. They will also help you understand the info and the reasoning behind certain treatments.

Brenda

Pekoepup, that was an excellent, very helpful description. It's just why I posted here, for this kind of insight. I wasn't sure if BiPap went above 20 or not. To think of those little babies with a pressure of 30 makes me realize the pressure may not be as horrendous as it sounds. (I had thought 20 might be the max, as it is with CPAP.) I will try to help coordinate a meeting like you suggested for the responsible party, and if I can get off work long enough, I would like to attend. If there was decent hope that our friend could come out of this and be OK, I could see the rationale for helping her get through this terrible time.

Thank you, and everyone else, who responded to this post.

I'm saddened to report that I just got news that my friend passed away about an hour ago. I only wish I'd been able to make her more comfortable, at least for a little while before she died. But she is free of everything now. Please think some good thoughts/say a nice prayer for my friend Giuliana Arrigo.