I have had limited occational contact with a 50 yo patient who has been brought to the facility with ALS or Lou Gerhigs disease. She is ventilaor dependent. She communicates by writing on a board, very slowly and hard to read. My heart goes out to this woman. Her mind is perfect, but she is trapped in this body and is 5 years with this disease. She was brought to this facility because no one else in her area would take a ventilator patient. So she is an hour away from her family, who comes on the weekend. She says she was put on the ventilator without her permission, the family insisted. She has decided to end her life. She told me she'd be gone in two weeks.
I've questioned the two Respiratory Therapists who work with her. One explained that the wheels to begin this process have begun. she and her family will need visits from social workers and hospice. Then she'll be transfered to an ICU closer to her family and sedated with MS and taken off of the ventilator. One says she will be snowed and completely comfortable and have an easy death. The other said it doesn't always come easily, the MS helps some but not entirely.
The patient and I had a limited conversation about this and it left me rattled. I found I had trouble talking with her about her death. She obviously is having trouble with her decision. She said her family says she owes her grandchildren to stay here. I responded that I was so sorry she has this terrible disease and was so rattled I don't know what else I said. She cried and I hugged her. I had to leave, I'd already spent so much time, communication from her is very slow.
I don't know that religious counsel has been in, or if she even wants it. I worry that this lady isn't recieving the emotional attention she needs (from myself or anyone else). I would think that hospice would be coming every day to start this process but I've not seen anyone visit her yet.
I feel guilty that I've had her as my patient 4-5 times but spent my time with her concentrating on tubefeeds, meds, ventilator, treatments, and haven't taken the time to be there for her emotionally.
I'll see her again later this week, dont' know if I'll be assigned to her, but wondered if you could help me with a few thoughts on how to do a better job this time? It might be my last time to see her. How do I say goodbye?
Saddest thing I ever saw was on 20/20. Doctor Kevorkian helped an ALS patient to commit suicide with fumes from his own van. It showed the man crying and saying his goodbyes to his partner and baby daughter, and his partner said the hardest thing she has ever done is wheel him in his wheelchair down to that van one last time.
I will never forget that. Worst disease I can imagine.
I will agree with you that ALS is a terible disease but I must stop there. There is a BIG difference in withholding life support and assisting with suicide. In the situation that you mention I see it as murder because the family actually caused the death, in the posters situation nature is allowed to take its course.... a MAJOR difference.
I will agree with you that ALS is a terible disease but I must stop there. There is a BIG difference in withholding life support and assisting with suicide. In the situation that you mention I see it as murder because the family actually caused the death, in the posters situation nature is allowed to take its course.... a MAJOR difference.
Sorry,burn out ,but I disagree. What Kev. did was barbaric because it was an uncomfortable and undignified way to die. Knowing what I know about the medical-industrial complex, I can assure you that I'd prefer to take a month's supply of Ambien before I got to the stage where family would have to decide to withold life support. I don't want to leave a pile of bills and months or years of debilitating stress for my husband. Much better to go in one's own bed surrounded by pets and fresh air. Is it too much to ask fellow humans or the state to allow ME to dictate the circumstances of my own death?
she was put on the ventilator against her will.. can anyone tell me why this happened..? if she was meant to die, then she would have died.. i'm just saying that if it's not your time to die and you decide to end it before your time, it's the same as killing yourself.. if you kill yourself, then you will not go to a better place..
i think that she is not asking them to do anything that would cause her death, but rather to remove something that is prolonging her life. she is not asking for a lethal injection, only to allow the natural process of dying to proceed.
i do think a psyche evalutation is called for at this time. it is important to know her mental status.
She will be transfered to a Hospice, supported by an Ambu bag, they'll admit her, medicate her and stop Ambu-ing. What she has chosen is called terminal weaning. Get this. Hospice can't/won't take her as a patient while she is on the vent. So they have taken a preliminary history (probably by phone/fax) but she is not allowed daily visits by them.
with terminal weaning, it's only a matter of minutes that she'll survive. she has total respiratory insufficiency. probably the hospice/palliative care director will administer lg doses of opioids and benzos to ensure she sleeps through this process. it's next to impossible to monitor a stress response since she cannot grimace, and any tachycardia could be r/t hypoxia or maybe, a scope patch. and since the last thing anyone wants is air hunger combined w/an inability to monitor distress, they're typically much more generous in their dosages. there is no standard in relation to terminal weaning. every doctor will do it differently with the bonding commonality being, the pt's comfort.
i'm glad you got to speak with her and say your good-byes.
Get this. Hospice can't/won't take her as a patient while she is on the vent. So they have taken a preliminary history (probably by phone/fax) but she is not allowed daily visits by them. I didn't ask why, I bet I know why. Their visits are nonreimbursable if she is on life support. If you think this isn't true, ask any hospice approved by Medicare/Medicaid, I think they'll tell you. Why would they send an employee to visit her if they won't be paid? While she is in the nursing home Medicaid is paying for her care, and they won't pay for two agencies to care at the same time, it's one or the other. Medicaid and Insurances (I think) are the same, doesn't matter. It's considered double billing, am I right?
We have a local hospice that accepts vent pts. when weaning is planned, so don't generalize and say that all hospices refuse vent pts. In one instance, it took two weeks til the pt was weaned d/t family issues, etc., but the pt. was transferred to in-pt hospice and on the vent.
Some hospices will choose to "eat" the bill and will send staff to see the pt. when the goal is to wean the pt. off the vent.
You're making some very unkind and uninformed assumptions about the hospice agency for this pt. You don't know for a fact that the intake was done by phone/fax; again, most of the hospices I'm familiar with do an intake/admission visit in this sort of case in person, just like any other admission.
And yeah, hospice can't bill if the NH is going to bill as skilled. That doesn't make the hospice agency greedy or the "bad guy." If you had any idea how much money goes to charity care, you might be a little less judgemental. You really should understand all of the ins and outs of dealing with reimbursement before making such statements. Fraud is very serious, and Medicare/Medicaid doesn't care if it was intentional or accidental. And if you lose your Medicare certification, you're basically finished.
I think some of you need to go back to basics. First, of all as a nurse we have no opinion, make the patient as comfortable as possible, listen and acknowledge them, offer support, or assistance then refer to a social worker, if this option is available. The ventilator was put in place against her will, did the patient lose her rights somewhere along the way? I also feel for this patient but we must not lose sight of the care of the patient and the right to refuse any treatment, no matter how sad the situation may be. I would rather die with dignity, than to be belittled, as though I have no right to refuse treatment and be in constant unbearable pain. Remember that we want the patient to have quality, not quanity of life. In the end God makes the final decision. We can not play God! If it is not her time then this to will be shown, without any heroric measures.
Just an update to this thread. Thanks for the thought provoking opinions! The students discussed this at length too. One said this woman's condition hadn't declined enough, if this was her mother, and still able to communicate like this lady could, she would never allow her to be taken off the vent yet. I couldn't help but feel myself agreeing a little with her. When I 'personalized' this, and imagined myself in this situation, it became harder for me. Yet, the woman didn't agree with her family and got her wish on Monday. I heard that she died a few hours later.
cdk, you need to research this disease process before you so blantantly profess your morals. It is probabley one of the worst nightmares out there, and that patient legally, and ethically had a right to refuse life support. I am absolutely appalled that they would not honor her request. I am sure at the time of resuscitation she was not able to protest, and now after the fact it is a liability the hospital is hopefully jumping on to rectify. But, cognition all there, there should be no question, period.
I agree with you 100%. This situation reminds me of my grandmothers passing. She wanted to die naturally, without artificial life support, and my father supported her decision to let go. My cousin (her grandson), accused my dad of killing her (as he was the one who signed the paper). It was a horrible,ugly time in our family. My dad still suffers with guilt.
I think that if anyone should feel guilty it should be the womans family for putting her on the ventilator in the beginning when she didn't want it. I would hate to see my parent suffer because of my selfishness and then turn the tables on them. I hope she has everything in order now and can go in peace and with dignity.
It is far easier for "us" to be able to say that, because we are on the inside and we know what the score is. Unfortunately, those outside of this profession have probably had little experience in dealing with this type of situation. Many family members do not want to be looked upon as being responsible for their loved one's death. When I have a patient that the entire medical staff knows in no uncertain terms will die, regardless of what measures are taken, yet the family members want everything done, I gently ask them if they are basing their decisions on what they want, rather than on what the patient wants. Sometimes the thought that "we did everything we could" is more acceptable to them than deciding to withhold heroic measures. I believe that if we encouraged more families to openly discuss this topic with each other before tragedy strikes, they will be more comfortable with the decision making process. Then they would be able to say "this is what ________ would have wanted."
As a hospice nurse for 11 years, let me say that I feel very sad for everyone involved here. ALS is a horrible disease and families are put into positions to make very tough decisions with very young family members. It is a rock and a hard place to put it mildly. However, quality of life and dignity are personal issues. This patient obviously feels that she has no quality of life. She did not choose to be on a ventilator and living this way, her family and the medical profession did. Ventilators are a treatment OPTION. Just as tube feedings and resuscitation are treatment options. Patients have the right to opt out of treatment. If she is in her right mind and desires to opt out of treatment, her medical professionals including nurses have a moral and ethical obligation to honor her wishes. That said, I have seen many patients removed from ventilatory support and normally they arre given Morphine and Valium or Ativan IV so that they are asleep before the vent is turned off. The length of time they live afterwards varies as there is really no way to know how much they can breathe on their own. But most are gone within an hour or so. It is painless and they do not struggle. Let her be at peace.
burn out
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I will agree with you that ALS is a terible disease but I must stop there. There is a BIG difference in withholding life support and assisting with suicide. In the situation that you mention I see it as murder because the family actually caused the death, in the posters situation nature is allowed to take its course.... a MAJOR difference.