How much should you actually medicate on hospice at end of life?

Lilli,

I just read your profile. I also live in Louisiana. You’re in the northern part of our state though. I am in the southern part, New Orleans.

Your post made me tear up. You are so very young and kind to be caring for your grandmother with breast cancer.

I am glad that your grandmother is on hospice. My mom was on hospice too, except as she neared the end of her life she was able to move into an ‘end of life’ hospice care home? Is that an option for you?

I know that this is very difficult for you. It’s heartbreaking to see our loved ones near the end.

My heart breaks for you doing this by yourself, or do you have other family helping you care for your grandmother?

At the end of my mom’s life she was completely bed bound like your grandmother. Hospice kept her comfortable. Mom had Parkinson’s disease and dementia. She was on morphine for pain, Ativan and Seroquel to keep her calm.

Speak to the hospice nurse to see if she wishes for your grandmother to continue with the morphine and lorazepam at her current dose she is taking now or if she recommends a different dose or drug.

Please do not deny her medication for pain or anxiety. You are not ‘drugging’ her as some people believe. Hospice is about ‘comfort’ care.

Do not worry about having your grandmother’s consent. She has shown you that she is upset, possibly afraid too and needs calming meds.

Do as her hospice nurse says to do so she won’t suffer or be afraid.

Hospice provides a social worker for the patient and the family. Please contact them for assistance and comfort. They also provide clergy.

Wishing you peace as you continue on during this difficult time.

My dad was on home hospice care. He was last able to get out of bed, with help, five days before he died. And it was not a good experience for him or us, he was scared once up, didn’t feel secure, and soon wanted back in the bed. Your grandmother likely needs to stay put, though her mind may be telling her to get up, that’s a lifelong habit she’s responding to, not a present need. The meds of hospice are designed to keep patients comfortable, free from pain and agitation. They are NOT lethal. I gave them to my dad, guided by advice from his wise hospice nurse during his final days. It calmed him and made it peaceful. If it caused drowsiness, so what, who among us wouldn’t welcome sleep in such circumstances? He didn’t eat at all his last four days, stopped drinking his last three days (at the encouragement of a hospice nurse I made ice chips from his favorite drink and spooned them into his mouth, this kept him hydrated and he enjoyed the flavor) and stopped all talking the day before he died. Speak to your hospice nurse about agitation and the best way to help with it. Don’t worry about using the meds, they are there to help, even if you need to use a syringe to slip them into her mouth at times. I wish you peace in this, knowing it’s so very hard. Your grandmother will pass exactly when and how she’s meant to, the best you can do now is frequently hold her hand and assure her of your love and care

Here is a link to a community chat forum specifically geared to folks dealing with hospice matters:

https://www.smartpatients.com/communities/hospice

Dear Lilli, I’d suggest that you tell your grandmother that ‘the doctor’ has given you strict instructions about what to do, and please please will she help as otherwise you will be in trouble. Make it her challenge to help you, not to follow her own wishes. Thank her and tell her again and again you are so grateful for her help.

You probably know already, but the easiest way to toilet is to make sure she can roll to one side. Fold the exposed bit of the used diaper close to her back, clean her, and replace the old diaper with a new one, also folded next to her back. Then roll her the other way, clean a bit more, take out the dirty diaper and bring the new one under her as she lies on her back again (or use a second diaper if it's easier). Talk gently all the time it's happening, so she knows what is going on. You can change the bottom bed sheet in much the same way. A flat sheet is easier than one with elastic.

Put a blocker of cushions or something firm at the end of the bed so that she can’t scoot down – also doctor’s instructions. As others have said, don’t worry much about food but keep her lips and mouth moist. Ice chips, lightly frozen juice, a wipe of sweet custard on her lips that she might like to lick. Get an eye dropper, and give the liquid medications with it, slipped into the far edge of her mouth so that she need not open her mouth for a spoon. It will help both of you.

Have courage, and remember that the only important thing is to keep her comfortable. When someone is dying, there is nothing you can do wrong. If she sleeps on and off, make yourself comfortable close by and sleep yourself whenever you can. It can be a long journey, and you need to sleep yourself.

Lots of love, and great respect to you both, Margaret

Offer the medication at the prescribed intervals but do not give it if she declines it.

This is basic stuff, and the nurse needs to re-read her organisation's medications policy. Good Lord. Her advice is - whether it's her intention or not - pretty flagrantly aimed at achieving a quiet life for the care team regardless of the patient's wishes. Morphine works quickly, so at any point you can ask your grandmother if she's in pain and if she says yes you can provide relief fast. Just keep strict records about how much you're giving and at what time.

I'm very sorry for what you're going through. With only a few days left to you, this is the time to talk to your grandmother about her life and your shared family. If she wants to get up and it isn't a good idea, explain and reassure, ask if there is anything you can fetch for her, and try to get her to engage in quiet conversation.

I hope you have a profiling bed and a slide/glide sheet? It's good that she's able to help position herself, but with that basic equipment you can help her be seated or lying in virtually any position that is comfortable for her.

PS What your grandmother says doesn't have to make much sense in the ordinary way. Just prompt and listen and make encouraging noises. There could be a load of things she'd like to get off her mind.

Bandy, you say “a straight diet of morphine and lorazepam? This would be my worst nightmare! Absolute torture and hell on earth in my opinion!”.

It sounds very much to me that you have never been for hours with someone who is dying. Continuing support can be very helpful.

You believe that “God takes people when it's their time”, so God can do that whatever meds they are taking.

Telling a carer that following hospice instructions is “absolute torture and hell on earth” is a truly dreadful thing to say. Pray for forgiveness.

Wow i wish i had joined this forum months ago!! I know its for the best that she stay in bed because the last two times we tried to get up it was very uncomfortable for her and she also wanted back in bed almost immediately, but any time she is awake her efforts are fully put towards scooting down in the bed to try to get up. I tell her she needs to stay in bed but it does nothing to stop her. I know the meds keep her comfortable, but she just absolutely doesn’t want to take them. She closes her lips together or will say something like “no you’re not.” There have been a couple of times that i just go ahead and give it to her and she doesn’t seem to get too upset. Its just me alone caring for her so its just hard to not have anyone else to confer with besides the nurses that come twice a week. She still drinks water in decent amounts and i have been able to get her to eat a small bite/sip of something almost every day. The social worker just came by and is going to have her nurse call me about these issues! It feels great to know other people have gone through these same things :)

If she is restless, if there is any sign of discomfort, she should be medicated. Hospice is end of life care. It is recognized that the end of life is here, and that the last days are about comfort and freedom from pain. Should so much medication is given that death is hastened by some few moments, hours, even days that is of little import compared to the importance of freedom from pain.
Ask your hospice to tell you the signs that death is near. There will be differences in breathing, in the color and temperature of the extremities.
I am so sorry you are facing this loss and so grateful that you can be there for her now, this last loving act that does her and you honor.

Lillian,

Thinking of you. Everyone knows that you are doing your best with caring for your grandmother.

Many hugs sent your way.

Please know that you aren’t ‘drugging’ your grandmother. Most of us on this forum actually hate that expression.

Medication prescribed by your hospice nurse is necessary. It’s all about comfort during her final days.

Lillian, click on Care Topics at the top right of the screen. Then click on E for End of Life. There’s lots of information there, including expert articles. You should find something medical there, more useful at the moment than religion or amateur psychology. I hope that you are both still coping OK. Love, Margaret.