End of life delirium?

Whispera, MSN, RN · Jun 7, 2010

Your grandma's doctor needs to know about the hallucinations and delusions, if he doesn't already. There are medications that can help with that, and ease her restlessness.

I'm more familiar with the term "terminal restlessness." I don't have any references though. It's pretty common.

When re-orientation isn't possible, you can still talk to her, about anything she might be interested in. You can play her favorite music, and have nice scents in the room (gentle ones, though, because some people experience nausea in response to aromas). Show her pictures of loved ones.

leslie :-D · Jun 7, 2010

i suspect the cancer has spread to her brain, which is very common in breast cancer.

typical symptoms of brain mets, include headache, nausea/vomiting, weakness (gen'l or one-sided), gait disturbances, speech difficulty, seizures, confusion, behavioral changes, visual changes.

there isn't any gold standard of treatment.

it's going to depend on how the pt presents.

many docs will prescribe steroids and anti-seizure meds, as a prophylactic treatment.

we also administer haldol and anti-anxiety agents.

it's hard to say what is going on with your grandma, but if she isn't already, i strongly encourage hospice services.

my personal, heartfelt prayers to you and yours.

leslie

Keila · Jun 7, 2010

Thank you both so much for your replies. Your responses mean so much to me -- this is an extremely hard time in my life. The doctor has been made aware of the hallucinations/anxiety/delusions, and I think finally they are going to re-evaluate and prescribe some anti-anxiety meds for her. My mother, aunts, and uncles are also holding a family 'meeting' sometime this week, and I suspect they'll opt to begin hospice care for her.

Whispera -- I'm still learning, and trying to read everything I can, so if I'm mistaken please correct me! But is terminal restlessness mainly physical (like not being able to find a comfortable position?) Gran's is more of an emotional restlessness. In the last few months she has dealt with confusion, but we have always been able to re-orient her. Now, she is living in a world of her own, and she is worried sick about her mother (who died in 2005). She wants to get her mother's final business arrangements in order and make sure the burial is taken care of -- and that's been taken care of for years. But when you try to tell her that, it doesn't stick. She just keeps going back to it over and over; she also experiences hand/upper body tremors and tremendous anxiety over it. It's so odd, though -- she has moments or even hours of absolute clarity, and then, like flipping a switch, that clarity is gone.

Leslie -- you're right. Her MRI showed no mets to the brain, but the cancer is in her CSF. She is showing all of the symptoms of the brain mets, except for the speech difficulty, seizures, and gait disturbances. I am really hoping that hospice will be brought in soon; I honestly feel that is the best option for her now, and for us.

Again, thank you so much for responding!

leslie :-D · Jun 8, 2010

Leslie -- you're right. Her MRI showed no mets to the brain, but the cancer is in her CSF. She is showing all of the symptoms of the brain mets, except for the speech difficulty, seizures, and gait disturbances. I am really hoping that hospice will be brought in soon; I honestly feel that is the best option for her now, and for us.
Again, thank you so much for responding!

keila, terminal restlessness can be of physical/pathological or mental origins.

i'd be inclined to think it's from the mets to the csf, as your grandma seems to be responding with neuro s/s.

however, the physical often is exacerbated by the emotional, and vice-versa.

i think she, and all of you, will feel much better once hospice starts.

she'll be getting much-needed meds, which will control many of her symptoms.

keep in touch with us, here...ok?

leslie

Keila · Jun 8, 2010

Thanks Leslie - I think we'll all feel much better, too.

I've got a year left before I can take the NCLEX, so I have a little way to go... but I am the 'medical' person in the family. I'm the one that my family looks to for deciphering what the doctors are saying, etc... and at this point I know just enough to ask those who know more -- therefore, I am here :)

I am by no means in any position to make decisions regarding Gran's care - my aunt is her POA. But with the knowledge I have (and the capacity I have to seek out more knowledge), I just want to help as much as I can. I want to share what I can so hopefully we can, as a family, make the best decisions for Gran.

I really, really appreciate you guys taking the time to help me :)

Whispera, MSN, RN · Jun 9, 2010

I agree with Leslie that your grandma's cancer has probably metastasized to her brain.

Terminal restlessness, in my opinion, is both physical and emotional. They influence each other. The person can't do things and cognitively knows it, and may know death is coming. That leads to an emotional response sometimes, that they can't verbalize or do anything about. So, they become physically restless. And round and round it goes...

Hospice could be wonderful for your grandma and family. It's not a death sentence. All it is is the provision of comfort care to people who, in the opinion of their doctor, if their diagnosis is untreated for cure, would likely die within 6 months. Grandma could have visiting nurses and home health aides to help with her activities of daily living, as well as a social worker and spiritual person (chaplain, etc.) to help in those areas. There are also inpatient hospice facilities. I've known people to get better and go off of hospice. I've known people to stay in it for years. I also know that it provides alot that people need in the last months--comfort to the entire family.

Keila · Jun 10, 2010

Thanks for your response, Whispera.

My family has decided (thankfully) to begin hospice care for Gran. Since the diagnosis, they have supported Gran's decisions regarding her treatment, as long as she was reasonably sound-minded enough to make those decisions. They're realizing now that those days are behind us. My aunt called today, and we will have our first appointment with hospice next Monday.

I tend to agree with you -- I think the cancer has metastasized to her brain, but at the beginning of May a CT with contrast showed nothing. She wasn't able to do an MRI because the machine was down, so they did the CT instead. With the behavior she's exhibiting, though, I truly feel it's spread there.

I also think there are several co-morbidities and conditions adding to the agitation and restlessness. Her kidneys are beginning to fail (creatinine at beginning of May was 1.7 or 1.8), she's sleep apneic and doesn't wear the C-pap like she should (says that she feels like she's suffocating), she is a chronic COPDer with poor oxygenation, she is slightly dehydrated (and still taking Lasix with potassium supplement), she's having a flare-up of cellulitis, and she has a UTI. I feel like if we could maybe get somewhat of a handle on some of these conditions, that might ease the symptoms we're seeing, too. I know it won't completely eradicate them, but I don't think it would hurt.

I have a quick question for you guys regarding how hospice works. If this is an ignorant question, forgive me. As a family, we've talked about possibly seeing if the doctor will 'weed through' Gran's meds and maybe DC the ones that aren't absolutely essential. She's on 18 meds right now. I would expect them to continue things like insulin, Plavix (she has a 99% blockage of one carotid artery; she had an endarterectomy on the other in 2005), Isosorbide, and Lortab for cancer pain -- but some of the others seem kind of futile now. When her hospice care begins, is this something we can ask her doctor to do, or will she look at us like we're nuts?

Whispera, MSN, RN · Jun 10, 2010

You said Grandma has a UTI...that's a big piece of information. Elders with UTIs often are confused and sometimes even psychotic. That should be addressed.

In hospice patients typically get the meds they've taken before EXCEPT for those that are used to cure the diagnosis for which they're admitted to hospice. That isn't always true though. For instance, if a patient has cancer and was taking methotrexate, he/she might not be given it in hospice.

It's typical for doctors to simplify the medications a patient is taking, once admitted into hospice. All non-essentials that do nothing to provide comfort are often eliminated (such as vitamin and mineral supplements given just to boost health). You surely should talk to the doctor about this. It's not a an unusual thing to talk about. Hospice nurses regularly talk to doctors about it. So can you. You can talk to Grandma's nurses too, about it.

Keila · Jun 12, 2010

Thank you for the information!

We got her labs back from the doctor yesterday, and her UTI is gone, thank goodness. She's been sleeping better the last couple of nights, too, and a good portion of her agitation is gone for right now. It seems like we just have to take things day by day (and sometimes, minute by minute!).

We'll be touching base with hospice Monday.

heron, ASN, RN · Jun 12, 2010

Just an FYI, since the UTI seems to have been at least part of the problem ... drug effect is also a major cause of delirium, especially in elders. Opiates, steroids and benzodiazepines are all notorious for this.

Keila · Jun 13, 2010

Thanks for the reply, heron!

I agree with you, and am hoping that soon we can eliminate all but the most necessary meds for Gran's comfort. That list will still include an opiate for her cancer pain, and probably a benzo to help her sleep.... but I still think if we eliminate most of her meds maybe some of the delirium will improve. She's on 18 different meds now.