Advocating for My Dying Grandma
December 14, 2022 8:43 PM   Subscribe

My grandma is dying. She is in comfort care at the hospital. How can I best advocate for her pain, anxiety, meds, and care during her final days?

My grandma is dying. She is in the hospital in comfort care. She is suffering from severe pain. I have advocated with the nurses to get her oxycodone dosage increased to 7.5 mg every 2 hours. She is also suffering from repeated feelings/nightmares/fears of falling into a hole and her bed turning upside down. I've asked that they give her an anti-anxiety med, and they started her on 0.5 mg of Ativan every 2 hours.

The nurses have been compliant with my asks, but they are not offering these meds proactively--only after I've brought up the asks. My grandmother is a bit too out of it and weak to truly advocate for herself.

In the coming days, what should I be asking them to do for her? I knew about the possibility of my grandma receiving a benzo based on a friend's experience with their father passing. I like to plan ahead. I would like to make these asks well before they make the offer. I feel like by that point, my grandma will have gone through unnecessary hurt. I realize this is my attempt to exercise some measure of control in taking care of my grandma, whom I love dearly.

I am doing my best to be polite and patient, take excellent notes of her meds and pain responses, and make open-ended requests of the hospital staff. (Example: Could my grandma receive a med to help her with her anxiety of falling into a hole? Rather than, Give her Ativan NOW!) If you have any advice on how to best work with the doctors, nurses, and hospital staff, I would also appreciate this.

Thank you in advance for your stories and experience.
posted by cursed to Health & Fitness (18 answers total) 9 users marked this as a favorite
Best answer: Can you be there when the doctor rounds, usually in the morning, and raise this issue? Can you ask if the hospital has a social worker/patient advocate/hospice specialist you can connect with? I've had more luck in the past starting at a higher level than the nurses (who are angels! but who must generally ask for approval after you ask them for something).

Alternately, if there's a nurse you vibe with you, can ask them -- "What do I need to be doing proactively to ensure my grandmother isn't in pain/agitated?" "Is there a different way I should be approaching this?" Etc.

The final days are hard. I'm sorry for you and for your grandmother.
posted by BlahLaLa at 8:55 PM on December 14, 2022 [13 favorites]

Best answer: BlahLaLa's nailed it, and I'd add that if she's getting any nutritional supplements that she doesn't have much of an appetite for, you can request that her medical team (RN, RD, or MD may be able to do this depending on your location) reduce or stop bringing them; the general consensus at the moment is that, counterintuitively, if she doesn't want to eat or drink it's okay and that forcing it may cause her pain or discomfort.

Holding you both in my thoughts, and wishing your grandmother peace.
posted by OhHaieThere at 9:10 PM on December 14, 2022 [6 favorites]

Best answer: My mother received hospice care at the assisted living place where she had lived for several years, not in the hospital. So, things might be different in a hospital setting but here are some things that were helpful for us:

Another option for pain management is long-term fentanyl patches. They get applied to the skin and only need to be changed every three days. This can give her a good level of base pain managment that will help protect against meds being delivered late.

If they are giving her any meds by mouth, crushing them into a very small amount of applesauce can make them much easier to swallow. There is also liquid morphine and ativan available. When we first tried the syringe would freak out my mother so we kept with ground pills until she stopped being bothered by the syringes.

Also be aware of the possibility of constipation - it is very common with pain meds and can be very uncomfortable.

Another conversation might be timing her meds to help her sleep during the night and to have her be more alert during day.

She might benefit from a special lotion/chapstick for her lips, they can get very dry - the hospital will have some if you ask. Also, if she has trouble swallowing, a wet sponge "lollypop" will let her suck in enough water to wet her mouth without having to swallow.

And as OhHaleThere said, we viewed food and drink as a comfort issue - if she felt hungry then she was uncomfortable and she got food. If she wasn't hungry, we didn't push it on her. It was such a relief not have to be constantly trying to coax her eat!
posted by metahawk at 9:14 PM on December 14, 2022 [6 favorites]

Best answer: Advocate for her to get a scopolamine patch to help with the nausea she may be feeling, especially once she stops taking food, as the pain meds are tough on the system even while being super helpful and necessary. "Scopolamine transdermal patch is used to prevent nausea and vomiting after anesthesia, narcotic pain medicines, and surgery."-From WebMD. The patch goes behind the ear and is changed every 3 days.
posted by erattacorrige at 9:34 PM on December 14, 2022 [1 favorite]

Best answer: In our area (Yours may be different), the hospital social worker helped us contact a local hospice organization. The hospice folks, once you agree to it (a minimum of paperwork if I recall), then become the interface between the hospital team and the patient, with a focus on palliative and comfort care. They can explain it better than I can, but that's the gist. If you have a hospice group where you live, I'd suggest reaching out - for information, at least.
posted by TimHare at 9:45 PM on December 14, 2022 [2 favorites]

Best answer: Hospice care is covered by Medicare btw, it is free, but it is not comprehensive care jsyk.
posted by erattacorrige at 10:18 PM on December 14, 2022

Best answer: I just finished reading Every Deep-Drawn Breath by Wes Ely MD about changing the narrative in ICU care. He has quite a high media profile, if you haven't the spoons to read a book. "A2F Bundle" is his mnemonic for treatment vs PADIS standard ICU care. The F in A2F is Family engagement: that's you, you're doing good: talk to your grandma and hold her hand, the nurses wont have time for that.

On Ely's watch, they use non-benzodiazepine sedatives (either propofol or dexmedetomidine) because benzodiazepines like midazolam over-calm the physiological and mental state. Calming the circulatory system excessively deprives the brain of oxygen, so it malfunctions and ICU delirium becomes common if not standard in benzo-treated patients. Obvs, it's more complicated.
posted by BobTheScientist at 10:29 PM on December 14, 2022 [4 favorites]

Best answer: If you haven't already, bring some sweets or have them delivered for the nurses' lounge. Cookies, donuts, cupcakes, pastries, something like that. When you're talking with a nurse you haven't talked with since before the food arrived, you can say "by the way, there are cookies in the lounge, have you had a chance to get one?" and they will be able to infer that you are the cause of the cookies.
posted by brainwane at 4:22 AM on December 15, 2022 [2 favorites]

Best answer: When you say "comfort care," do you mean hospice is involved? As noted by erattacorrige, hospice is a Medicare benefit (and many private insurance plans as well) but can be delivered anywhere -- in a hospital, in a special hospice facility similar to a skilled nursing facility, at home. Absolutely ask to meet with the hospice/palliative team or social worker; they are the experts in guiding patients and families through this transitional phase of life/death. If she is in the hospital-hospital, as opposed to some kind of other facility, ask the nurse when the team rounds (usually in the morning in most places) and try to be present for that.

My guess is that most of her meds are ordered "as needed," which does require her or you to ask for them. This exists for a reason, because proactively giving opioid pain meds to "stay on top of the pain" (for instance) hastens death. One way around this is a patient-controlled analgesic pump (PCA), but that does require her to be more aware than it sounds like she currently is.

Agree on the comments about food/nutrition, as well as the importance of keeping her lips and tongue moist for comfort.

One thing to keep in mind, if you are not aware, is that when people are in the active phase of dying (and it sounds like your grandmother may be close?), they will develop a rasping/gasping sound at the back of the throat. That's where the term death rattle comes from. It can be quite loud and sounds terrifying to hear if you are not expecting it. But it's not painful or distressing to the dying person; it just means they have lost the gag reflex, which is a normal part of the dying process. This is different from "air hunger," which is distressing to the patient, and for which yes opioids and benzos are a good thing. (Ativan is a benzodiazepine, for instance.)

Also, the "active phase of dying" can last anywhere from minutes to days. It's not like it looks in movies, where people are talking lucidly and then suddenly their eyes glaze over and they are DEAD.
posted by basalganglia at 4:27 AM on December 15, 2022 [4 favorites]

Best answer: I am a nurse. I was a med/surg nurse who provided hospice care. I was a hospice nurse who provided hospice care. I was an ER nurse who provided hospice care. I was a LTC nurse who provided hospice care.

Is your grandmother on a med/surg floor? Is the discharge plan to get her home, or to a facility? I understand this is direct but it can be hard to gauge the amount of time people have left. Hospice at home or at a hospice center is a great option for lots of people. Is it an option for you?

If she is staying in the hospital - is her care being managed by a palliative care physician or a hospitalist? Sounds like the nurses were quickly able to give her the meds you wanted which makes me think she has some PRN hospice med orders already. I’ve found in the hospital that providers don’t always communicate the non-med aspects of hospice care and it’s left to the nurses to figure out. Have they dc’d all oral intake? Any IVs still in place? Are they turning her q 2 hrs?

I just saw that she is still on Oxycodone which makes me think her Ativan is a pill too - is she still on any other non-hospice meds? Liquid morphine and Ativan can be given at close intervals and massaged into the cheek.

You are a good granddaughter. If you want more specific advice feel free to memail.
posted by pintapicasso at 4:33 AM on December 15, 2022 [7 favorites]

Best answer: My spouse had end-of-life care in a hospice in-patient clinic at the end because the pills didn't work and he needed intravenous meds. I found that even there, I had to use the call-button regularly because his medication would run out and he would become agitated, even though he wasn't conscious. Staff isn't there to see the patient change the way we are, so that was my job, to push the call-button when he needed more. They steadily adjusted his meds upward and installed a pump partly as a result of my advocacy. I'm not faulting them - they were there to make him comfortable. They just couldn't spend the whole time in his room the way I could.

As someone else has said, though, dying with good palliative care doesn't mean you die like in movies, so donn't have expectations about how long it's going to take.
posted by Peach at 6:19 AM on December 15, 2022 [2 favorites]

Best answer: Nurses in a hospital on a general floor are busy. Make them your allies. Keep treats and fruit in her room, and offer them often. Bring in cookies, maybe a pound of flavored coffee, but do this often and for each shift. Ask each nurse how to best advocate for Grandma's comfort, and make sure she gets some sort of treatment for constipation - stool softener or something. Bring in pictures of family and of young grandma, personalizing her will promote better care. Is this how it should be? who cares, it's grandma. Pintapicasso's advice and all the advice here is great.

Hospice at home or at a hospice center - would be a great option if possible. My brother came home, my sister, a hospice nurse practitioner, was there, hospice staff visited, it was loving and peaceful. My cousin was in a hospice center, they were fantastic, it was also a loving and peaceful end.

It's okay to gently tell her that it's okay to go, that she had a beautiful, meaningful life. No one really knows what she can actually hear, but talking to her conveys love, and it helps you with your own emotions. Thanks for taking loving care of her; it's a true gift.
posted by theora55 at 6:54 AM on December 15, 2022 [3 favorites]

Best answer: Is she actually on hospice? Consider asking for GIP (inpatient) hospice today (If you are inside the US). With our without hospice, I suggest asking to speak to the doctor today. They order the meds, then the nurse carries out the order. Here's a script to talk to the doctor:

"My grandmother is clearly very anxious and in pain. Can we make a new plan for scheduled pain and anxiety medications today? And then what will you be prescribing for breakthrough pain or anxiety?"

Then just be direct and factual with nursing staff: "My grandmother is due for her morphine at 9:00" or "My grandmother looks uncomfortable. She got the morphine at 9 but I think she needs her [whatever is prescribed for as needed additional meds] now"

Best to you, and bless you for being there for her.
posted by latkes at 9:05 AM on December 15, 2022 [2 favorites]

Best answer: Tangentially, she may be having actual inner-ear/vestibular or neurological vertigo, so be really explicit about the cause for your requests, not just "she's anxious about falling in a hole". She FEELS like she's flipping around/falling in holes, it's extremely common and it is a real sensation her nervous system is transmitting. (I also get this as part of some other weird sleep stuff. It sucks.)

Don't be afraid to ask the nurses who you should be coordinating with. They may not know you don't know. There's a hierarchy, there's a system, it's okay for you to find out what it is and work your way up it until you find the person whose job it is to gather decisions made and turn them into patient directives and liaison requests.

Also ask a nurse directly if they have to pay for their own coffee, and if so find out what product they have come to a mutual agreement to buy jointly, and then get them a shitload of that.

I have a lot of really strong feelings against home hospice, as "dying at home" is often a pretty myth and in reality deeply traumatic, poorly-assisted, and sometimes physically damages the home in question. Hospice centers (and some hospitals) have care-assistance equipment like bathing lifts, your grandma's house likely does not. The one upside of in-home hospice is that at least one nurse (depends on if you get to see one more than once a week - don't count on Medicare hospice being good in any imaginable way) will take you aside and tell you in painful detail what constitutes a morphine overdose. This will be framed as a warning, but is actually instructions.

Advocate vigorously, but also understand that dying cannot be 100% controlled. Even when pretty peaceful, the body is full of stuff that does things and when they begin to stop doing them there are consequences. There may be pain that we don't have any great way to manage without inducing a coma, and the brain sometimes suffers from the resulting backup of toxins and deprivation of various functional chemicals.

I agree with pushing to get their clinical explanation for her care state, as there can be fine lines between palliative care, comfort care, and hospice care. What do they mean by "comfort care" and what other levels of care are there and what distinctions are made between them? Understanding those differences may help you understand why things are being done some specific way and whether you need to actually speak up to move to a less-recoverable form of care.
posted by Lyn Never at 9:12 AM on December 15, 2022 [6 favorites]

Best answer: I want to second the suggestion for getting the facility social workers involved. They can really make a difference for how you approach the final days, and can recommend things to help you as an affected person as well as your grandmother. Also, they will know if there is in-patient hospice available, or any other resources that can ease the last days/weeks.

The more you can stay on the good side of the nursing staff, the better, but do advocate for comfort care vigorously. It matters more that your g'mother is comfortable than that the nurses like you. I was regarded as quite the b*tch by some of my mother's nursing staff because they wanted to treat her as a dying 80yo and I wanted them to treat her as someone gravely ill who was going home from the hospital after she recovered. She lived another 4 years after that incident. Your situation is a bit different, but being a persistent advocate for someone who cannot advocate for themselves can make some hospital staff edgy. I'm sorry you are faced with this, but you are doing a mitzvah and it will help you feel better when all of this over.
posted by drossdragon at 9:27 AM on December 15, 2022 [2 favorites]

Response by poster: Thank you to everyone for your advice and compassion. It is much appreciated.
posted by cursed at 1:44 PM on December 15, 2022 [3 favorites]

Best answer: I hope you have gotten all the advice you need. I am linking to an update on my dad's situation nearly three years ago. He was at a nursing home and had an unprofessional hospice nurse from an outside hospice service. The problem was that I did not understand that the nurse was unprofessional; I had never been in the situation before. Thanks to advice here on the green, I called the hospice manager, explained the situation, and a new nurse was sent over. This nurse did not experience my dad as a burden and made his last two days alive much easier. Thank you for being an advocate for your grandmother. It is not easy work but it is important work, as you know.
posted by Bella Donna at 7:59 AM on December 16, 2022 [1 favorite]

Hey, sorry, we have just gone through something very much like this. I just want to make sure, are you the medical power of attorney? Absent a living will / health care power of attorney document the responsibility would normally fall to your grandma's children or siblings before a grandchild. If you don't have the formal power that could explain part of your difficulties. Not that there's any excuse, you would hope someone on comfort care to get any medications they need to address symptoms, regardless of whether they have the effect of hastening death. I really feel the best gift anyone can give is a set of clear written preferences on end of life, because anytime you can reference those, it should have immediate effect. If not try to get any family members on board, conflicting requests from family are going to make any care less effective.

The nurses are in a pretty tough spot, though. If they give too many meds, there can be side effects, and someone can sue. They are massively overworked because there depending on the facility there may be almost no legal requirements for staffing. As far as I can tell, everyone working anywhere in health care is one really bad experience away from letting forth a primal scream and walking out the door forever. The staffing agencies pay way more than the facilities, so there is a revolving door of staff and they don't have the time to get to know their patients before they get switched to a new set somewhere else. Not that you are responsible for any of this. But I do recommend finding out who the person who informally runs the floor is. Not the head of nursing for the whole facility, not the regular nurses or care aides, the person who is nominally at the desk but in practice is running from room to room supervising everybody. Often it is a charge nurse. Ask them about the care, and really listen. If that doesn't work, see if there is a social worker.

Also familiarize yourself with the schedules if you can. Almost always there are busier and less busy times. During rounds and meals you're going to have a hard time getting attention and good judgement out of people.
posted by wnissen at 9:47 AM on December 16, 2022 [1 favorite]

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