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?
As nurses we can treat the holistic needs of the patient, including the spiritual ones. Spirituality is not depend on religious beliefs. It's about the questions "why am I here?" and "where am I going?".
Sometimes I think the family doesn't really understand what is going on in a "terminal" situation, and get confused about the difference in interventions that preserve the best quality of life that is remaining, and those interventions that only prolong suffering. I think hospice nurses and physicians can make such a difference if they take the time to educate the family, other wise, people torture themselve with second guessing their decisions. That can really complicate the grieving process later.
i agree with the holism including spiritual beliefs. however, i personally would feel mighty peeved if anyone began to tell me about any form of religion (excepting a chaplain, from whom i would expect it) as i would take it as a sign the other person is assuming i have no spiritual beliefs of my own or not enough brain cells to think of such things myself (as in i am quite capable of developing my own relationship with whatever god i choose and don't need another to tell me how to do it, especially as an adult has had quite a few years to think on such matters! and darn few in america have never heard of jesus so there's no point in yet another lesson). i am aware others may disagree--i just wanted to point out it's not best to assume anything about the patient. yes, people with depression can make decisions contrary to what they would normally make. but i think sometimes the depression dx is used to cover up the fact that *others* are not happy with that person's choices. for example, my father is in the terminal stages of leukemia. he says he's ready to die. is he depressed? of course! is his decision to give up due to depression? no--it's due to a long life of not much but hardships and constant struggle of one form or another and being in pain and plain old being tired of fighting everything all the time.... antidepressants may help, but life will still be a battle for him. why should he have to keep it up if he doesn't want to? and lord help the nurse who tells him he has to do it because it's god's plan...that was tried and after telling her to go to (ahem) "hades", he pointed out that he thinks 70 years of toughing it out to make god happy was enough and it's high time he (dad) had a chance to have his happiness/plans considered and that god can keep him alive another 50 years if he so chooses, with or without dad's help! since our family is entirely in the medical field, we now have him at home doing our own hospice care...for some reason he's "over" other nurses! the upshot of this post is that i think the patient's wishes, if not obviously a temporary abberation, should be respected...religion and death included--because very few take those matters lightly, especially concerning themselves.
I whole heartedly agree with the above post. These decisions are not made lightly by patients. Especially patients with long standing terminal illness. They generally are well aware that the treatment is not working long before their doctors and/or nurses tell them. I have had many indepth conversations with terminally ill people and they are so grateful to have someone with whom they can speak openly about this, that they tell me all of their thoughts. The best thing we can do for them is listen. Listen without judgement, fear, or flinching because many of the things they will tell you are emotionally painful to hear. Death is never easy to discuss. But they need to be heard, touched, and comforted by the fact that their healthcare providers are brave enough to face it with them.
It is amazing that posts have stated that patients will be taken to a second doctor who will deny the patient's stated or written wishes. What kind of ethics is that? And to know that someone is denied hospice support, information and wisdom just because Medicare was already being used to pay for the long term care is horrendous.:angryfire :angryfire Another reason to get our medical system changed.
I agree. I have personally been involved with this with my father-in-law very recently. He had Asbestosis and End Stage Heart Disease. Doctors had told him for over a year that there was not much else they could do to improve his condition and he was terminally ill. Two weeks before he died, he signed a living will and a DNR stating that he wanted to die at home without resuscitative efforts. He had a sudden MI and stopped breathing at home. My Mother-in law called his managed care physician who had been visiting them at home. Physician told her to call 911 even though his patient was a DNR. My father-in-law ended up on a ventilator, brain dead and had to be removed from the ventilator 12 hours later. This was three weeks ago and my Mother-in-law is still distraught because she did not do what he told her he wanted. But, she trusted her physician and when he told her to call 911 she did. The situation makes me sick to my stomach. The saving grace is that I truly believe he actually died at home before the paramedics got there because he was definitely not "alive" when I saw him in the ER. I am still very angry with their physician and unfortunately have to work with him as well. I don't believe that anyone has the right to override a person's wish to not be brought back. It causes constant conflict within the family and violates people's rights to self determination.
Thanks Cin for contributing your experience in witnessing what happens with a person removed from the vent. I was so afraid she would suffer from air hunger, and that being medicated, and unable to move, she wouldn't be able to ask for help. I pictured that even if she wanted to ask for more O2, or more medication, she would not be able to.
I learned yesterday that she spent another day with all of her family, and that it was very hard for them to visit her.
I guess she died a few hours after being taken off of the vent, but did die peacefully. I'm grateful to have heard this, I did want her to have her wish, and to not suffer either. I'm relieved this horrible time is over for her family and I hope they do feel they did everything they could do, and that she had her wishes met.
I agree. I have personally been involved with this with my father-in-law very recently. He had Asbestosis and End Stage Heart Disease. Doctors had told him for over a year that there was not much else they could do to improve his condition and he was terminally ill. Two weeks before he died, he signed a living will and a DNR stating that he wanted to die at home without resuscitative efforts. He had a sudden MI and stopped breathing at home. My Mother-in law called his managed care physician who had been visiting them at home. Physician told her to call 911 even though his patient was a DNR. My father-in-law ended up on a ventilator, brain dead and had to be removed from the ventilator 12 hours later. This was three weeks ago and my Mother-in-law is still distraught because she did not do what he told her he wanted. But, she trusted her physician and when he told her to call 911 she did. The situation makes me sick to my stomach. The saving grace is that I truly believe he actually died at home before the paramedics got there because he was definitely not "alive" when I saw him in the ER. I am still very angry with their physician and unfortunately have to work with him as well. I don't believe that anyone has the right to override a person's wish to not be brought back. It causes constant conflict within the family and violates people's rights to self determination.
The physician who was caring for him should have brought in Hospice. The act of calling 911 implies that you want emergency intervention. There should have been a plan in place to handle his death. She should be mad at the doctor who left her with no other option, than to call 911.
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 cannot believe such shallow judgement on a persons life especially from a health care professional. you are a pt advocate regardless of your own beliefs. in many cultures it is decision that is respected and considered honorable.
i sincerly hope when you are at work you leave the fire and brimstone talk at home. not everyone is christian and no one likes to be preached at.:angryfire :angryfire :angryfire :angryfire :angryfire
I have talked to the doctor and he said he believed my father-in-law had choked on food as my mother-in-law told him on the phone that he had just finished his lunch when he collapsed. The doctor was heartsick that he had not honored my father-in-law's wish to not be resuscitated. It is a sad circumstance and very tough for me as a hospice nurse to reconcile. The lesson for other nurses and their families here is make sure you have everything in place including hospice when it is time. ICU and ventilators are not for everybody.
If you have requested to die because of your illness because you can't do it youself, isent that the same as taking your own life..
I believe that the illness is taking her life, not her. She has made a decision that she no longer wishes to receive treatment, letting the illness take her. She doesn't have very good quality of life anymore, if any. If she wants to die with what little dignity she has left that is her choice.
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..
asking that life saving measures not be taken is in no way, shape or form killing yourself. my father made the decision to take my grandfather off of a venthilator, does that mean my father murdered him? i don't think so.
you are a pt advocate regardless of your own beliefs. in many cultures it is decision that is respected and considered honorable.
nhelkhound
79 Posts
As nurses we can treat the holistic needs of the patient, including the spiritual ones. Spirituality is not depend on religious beliefs. It's about the questions "why am I here?" and "where am I going?".