My grandmother in hospice??

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    Hello all. I'm a relatively new RN and currently work in the NICU, so I don't know that much about end of life care. 3 weeks ago my very active, cognitively intact grandmother had a stroke. When I say active, I mean paddling a paddle boat daily, taking long walks with her dog every day, so this was very unexpected.

    To make a long story short: She actually was in the hospital for some dehydration issues and the doctor said they were going to rehydrate and probably send her home. The next morning however, as the doctor was about to discharge her, my aunt came to visit her and she was having obvious stroke symptoms (left side face droop, speech garbled, and couldn't raise left arm). Each day for 4 days it progressively got worse, failed the swallow study and the family had to decide to do a gtube or not. She was having a lot of pain all of the sudden and the doctor put her on a morphine and ativan gtt, she never woke back up after that. She was made hospice, for as the doctor said she would not come back from this and my family knew she wouldn't have wanted to live like this with a feeding tube and whatnot.

    My question is about hospice care. When my grandma was made hospice, she was in an ICU. We wanted home hospice the nurses said that she would require a procedure to put a PICC line in and they didn't think she was stable enough survive the procedure, so we were unable to take her home since she only had peripheral access. We asked to be moved to a hospice/oncology floor, but no beds were available. So we stayed on the ICU floor for the next 2 days. On the ICU floor, my grandmother wasn't turned for 2 days, no vitals taken, no assessments, didn't even scan her bladder (she did not have a foley in---why????)

    Almost two hours before my grandmother passed away, I asked if the nurse would take her vitals and scan her bladder just to have an idea of where she was. She had 820 mls!!!! The nurse couldn't believe it, i couldn't believe it and i was so upset. I had to travel far in order to get home, and I only got to spend the last 8 hrs or so with her and i couldn't believe she wasn't being made as comfortable as possible. The only time we saw the nurse was when she would pop her head in and say "does anyone need anything?" Is this the normal practice for hospice care in the ICU, does all patient care stop? Are you kept on 4.5L of oxygen, because that is what she was kept on, i thought anything about 2L was therapeutic. I honestly don't have much experience with this but am just looking for some other perspective. I wasn't aware that when you go hospice in the hospital (ICU especially) that even your basic nursing care ended. The whole experience was emotionally draining and horrible enough, but it left such a bad taste in mouth for "hospice" care. This was not the wonderful experience I had always heard about hospice, maybe the problem was we didn't have a hospice nurse taking care of her. Everytime my family would ask something about the dying process, we would get the response "well i'm not sure, we aren't hospice nurses".

    Sorry so long, just venting and looking for some insight and understanding. Thank you to all you hospice nurses that are wonderful and truly are angels to your patients and their families. Your job is so important to the family and I wish my grandmother could have recieved great hospice care like she deserved. Thanks.
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    Also, when the nurse scanned my grandmother's bladder and it had 820 mls, she said "that must have been so uncomfortable." how uncomfortable is that for someone on a morphine gtt at 6 mg/hr and ativan gtt at 6mg/hr? it is so upsetting to think she was so uncomfortable.
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    what did your grandmother need a picc line for?

    did the nurse put a foley in once she learned your grandmother was retaining?

    i guess i'm not understanding why she couldn't be discharged home w/peripheral access.

    and, it is true, that w/a mso4 and ativan gtt, that there's an excellent chance that she wasn't even aware of her full bladder.

    finally, some icu's are being trained in end of life care.
    yet there remains too many that haven't been.

    how long was she in the icu before she died?

    i'm sorry for everything...
    your loss, your/her experience and seemingly, some miscommunication?

    leslie
    HMP83 likes this.
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    I am SO sorry for your loss. We take patients like your grandmother home all of the time with hospice care at home and they do fine with sublingual morphine and ativan. Our hospice does not maintain a peripheral line at home, so if she was to need to go home on something continuous, we probably would have done it subcutaneous. I am very sorry that your grandmothers bladder was distended. It was really a blessing that you were there (the hospital nurses should have had the foresight.) Probably one positive in this whole ordeal is that your grandmothers quality of life was incredibly good up until this happened. It sounds like she really lived life to it's fullest so her short period of debility was probably a blessing for her.
    HMP83 likes this.
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    Thanks for your responses. I guess looking back and wondering what if doesn't help anything, but it's hard to see your loved one not get the care you would have hoped for. I also thought there were other alternatives other than central access to go home hospice. But the ICU nurse and the women that came to talk to my family from the hospice company said she would need a PICC, this only after sticking her 6 times to finally get her a second peripheral, because originally the ICU nurse said she would be able to go home for hospice but would need to be sure to have atleast 2 peripherals so they would always have one available if one went bad. I thought there were SL med options. Yes, and once she discovered the distended bladder, she put a foley in, my grandmother died an hour and a half later. She was in the ICU for 6 days, the last 48 hrs she was "hospice". Thank God it was relatively quick and she lived a full and active life up to that point.
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    I'm so sorry for your loss. She sounds like a great woman who you loved very much.
    HMP83 likes this.
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    Like someone else asked, where was this? rural or urban? Hospice is wonderful, and there's lots of really good hospice orgs. out there, but that doesn't mean there aren't ones that aren't good (or individual providers who are lacking) -- I've heard some horror stories about hospice which is tragic, not only for the individuals directly affected, but because then a whole group of people have a bad opinion of hospice in general.

    Most hospices use SQ delivery for meds so that you don't have to have any kind of IV access. It works quite well, the biggest drawback is that you are limited to 3-5 ml/hr for a flow rate (although I've both seen and done higher when necessary), which means as pain med needs go up, you have to either switch concentrations or medications. If there's a PICC available, great, otherwise there are alternatives (and with the use of hyaluronidase you can increase the SQ flow about 10 fold).

    While one would hope that an ICU would know how to provide "comfort care" to someone who there is no more active tx available/desired not every facility has things setup that way. The key word here is comfort. That means adequate pain control (not just setting a drip at a specific rate and leaving it there), paying attention to elimination, scrupulous attention to things like oral care, skin care, turning, (moderated by any thing, like bony mets that would mitigate turning as often), maybe adding some music, making the space as comfortable as possible for family/loved ones to visit, making sure that the patient is not left isolated and alone. Generally, VS are d/c'd but you also pay attention to the needs of the person -- i.e. a brittle diabetic who is getting steroids you may continue some glucose monitoring b/c too high BS can cause discomfort, checking a temp if you think there's a fever and then tx with antipyretics or at least cool cloths, dealing in a non-invasive way with secretions, etc.

    As I said, many hospitals have standing comfort orders, but usually that's been established by a palliative care team.

    I'm really sorry that you and your grandmother had a bad experience. Unfortunately, it's reflective of the state of hospital medicine today, esp. in the ICU unless there has been a determined effort for culture change. Please do not base your ideas of hospice on this experience, b/c what she got was not hospice!
    HMP83 likes this.
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    Thanks, yes this hospital was in a big city, in the midwest where I grew up. I don't have a negative opinion of hospice, in fact I was really at peace when I recieved the phone call from my dad saying that she would be going to hospice. I just wanted her comfortable and taken care of well, just like she had done all her life for everyone else. Instead, the whole experience made me feel horrible. I felt as if she would have gotten better care not going hospice, atleast she would have gotten basic nursing care such as emptying of her bladder, adjusting pain management per her symptoms, being changed regularly to be sure she is clean, and being turned atleast once every few hours. I think it is unacceptable to not be turned once in a 30 hr period, ICU or hospice. Like I said, I just wanted to thank all of you hospice nurses who are so wonderful, you really do make all the difference in the way the family and patient experience this very different time. I'm left feeling guilty that she didn't get the care she deserved.


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