Medication - when is it ethical to stop providing medication

CanyonGal

The facility crushes my mother's medication and mixes it with pudding. My mother began to  spit out her high blood pressure medications, along with some others. The result was she became unresponsive and the hospice nurse labeled her as imminent. We drove down to see her on her supposed death bed only to find her up walking, eating, and taking her medication. A couple of days later, the left side of her face drooped, and we suspected her of having a stroke. I had her sent to the ER when it was determined she had a UTI, acute kidney injury (AKI) and a hypertension crisis (extremely high blood pressure readings). She was in the hospital a week before they had adjusted her medication to control the uncontrolled blood pressure and bring her kidney GRE back to baseline.

Since she was in the hospital for over a week, she became very weak in her legs, wasn't eating well (they noted that she should be watched for swallowing issues and aspiration), and had altered mental status (dementia, hallucinations, delirium). She was also evaluated again for hospice care.

She is back at her facility and is pretty much bedridden because she is weak. They tried to put her in the wheelchair, but she didn't have the strength to sit up for long. They try placing her in her recliner as well, but she needs help with transferring from bed to chair. She sleeps much of her day/night, but when she is awake, she can have conversations, as in answer in sentences, not one or two words.

Her hospice nurse called this week (one week after the hospitalization) and asked to take her off all her medications. She said she spit out her medication (although she couldn't answer which ones) and so, she doesn't think my mother should have anything but comfort meds. WE JUST GOT HER BLOOD PRESSURE REGULATED and now, if she removes the blood pressure medications, we will probably return to the uncontrolled blood pressure, risking stroke or other complications. 

I am not seeing signs that she is unresponsive, or unable to swallow (she doesn't like the taste is likely the reason for spitting them out), she eats but does have a decreased appetite, and I just feel like the timing of removing all medication is wrong. We are stage 6 vascular dementia. She may only have weeks left but this seems premature.

I understand that eventually she won't be able to swallow food/meds, eventually her kidneys may not work (stage 3b now), or her heart may give out, but we are not there yet. I am really frustrated at this nurse, who actually said I was trying to "fix" my mother, and she shouldn't be on hospice. TO ME, palliative care or hospice doesn't begin the week before death. 

Advice? Am I in denial because I think she should have her BP medication?

Michael Ellenbogen

What was her wishes?

M1

Such a fine line CG.  You and the hospice nurse are probably both a little right.  Very hard for you to give up wanting to control her blood pressure--but really, she probably doesn't have as much time as you may naturally want to think she has.  What the nurse was trying to convey--and there probably isn't a way to do this that doesn't come across as harsh--is that really, the only question that matters now is whether she is comfortable or not.  You have to give up wanting to know what her blood pressure is, what her kidney function is--because truly, it doesn't matter at this point.  To you, it probably seems like it matters, because if it makes a difference of a few days in how long she lives, it matters to you, of course.  But in the grand scheme of things, if she is aspirating and spitting out pills, she is probably closer to the end than you think.  

You won't go wrong if you focus on comfort, though.  You can always ask and answer that question-is she comfortable?  If yes, then great.  If not, what can we do to make her more comfortable?  That single question continues to matter. 

I'm sorry, it's a hard, hard journey and this is a hard, hard part of it.  

CanyonGal

She doesn't wish to die and avoids any discussion of funeral arrangements. She is still talking about going shopping and getting out of Memory Care and moving back to Assisted Living. She just wants a doctor to "fix" her. Because of her dementia state, discussions about medical or anything else is limited in scope. 

She is in denial about her dementia but does recognize that her memory is failing.

Michael Ellenbogen

So it sounds like you did not have the discussion until she had the dementia.  Knowing what you knew about her before the dementia,  would she still want to go thru all this or not.

CanyonGal

She isn't aspirating or choking yet, but she is under watch to see if that becomes a problem. She is on a soft food diet. (She ate part of a muffin, a couple of bites of scrambled eggs, and a bit of sausage for breakfast. Not a lot, but some food.) Eventually, swallowing will become an issue and I can accept that when it happens.

I guess my opinion there are some serious consequences to no medication and some medication should be tapered off, not cold turkey. And there is a part of me that says, is if she spits her pills out, that's on her, but if she's not even given the opportunity to take them, then that is on the nurse.

I am trying to get things back in order after this last hospitalization, and if she goes off medication, it's like having to relive these last several weeks. The emotional toil of the nurse telling me she's imminent, then she was obviously not, then she fell twice hitting her head, they thought she had a stroke (possible brain bleed from fall. Trip to the ER  who said nothing to indicate it in the CT scan, but they picked up the UTI, hypertensive crisis and AKI.  And now,  just take her off the meds so she actually will be imminent, is drastically hard on the family. 

CanyonGal

Michael Ellenbogen wrote:

So it sounds like you did not have the discussion until she had the dementia.  Knowing what you knew about her before the dementia,  would she still want to go thru all this or not.

She's always been one to stick her head in the sand and avoid discussions about dying and death. She was shopping for her husband's breakfast after the nurse told her multiple times he had 3 days left. Denial, denial, denial...

Would she still want to go through all of it? It would not cross her mind because she would not even think something like this could happen to her. However, last year her surgeon gave her the choice of repairing the endoleak of the stent from her abdominal aorta aneurysm or bleeding out (death) and she said "I want to live, I am not ready to die." So they did the repair, but she had several setbacks. She developed urosepsis because rehab didn't catch the UTI in time, and then she stopped eating, and lost 25 lbs, and I requested a hospice evaluation last July.

So, we have been on hospice since July, and she got better, she began to eat, she started walking, but the mind still traveled down the dementia road, from stage 5 to stage 6. This hospice nurse is new, been on my mom's case for the last 6 weeks. I trusted the prior nurse, who had 10 years' experience with dementia patients.

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Ed1937

I'm sorry this is so hard. Whatever you decide, do your best to keep her comfortable. I wouldn't want to tell you that you should or shouldn't take her meds away. The choice is yours, and nobody else's, as long as you have POA. Whatever you do, I wish you well.

towhee

Canyongal, there is a previous post in 2018 which I feel would be helpful to you. It contains a post by Jo C. about why different meds are continued or not in hospice. I can't give you the link, but if you search (search button is top middle of page) in the caregiver forum, use all words, and use the keywords-   blood pressure medication hospice   - you will see a post with the title "questions about hospice" . Scroll down till you see Jo Cs post. Sorry for the hassle, but I think it will be worth it.

Just occasionally, stopping meds is more about the staff having trouble giving them, and not about whether they are necessary. Are her meds still being crushed, and might she take them better in a different, possibly sweeter food?

BassetHoundAnn

Hi, CanyonGal, 

I would consider blood pressure meds comfort meds, no matter what the hospice nurse says. I have a 90-year-old aunt (no dementia) who gets pretty uncomfortable when her BP starts rocketing around. It can lead to falls, contusions that require staples and stitches, broken bones, ER visits and hospitalization, and that's certainly no fun for anyone, especially someone at the end of life. The BP meds are keeping her safe. They are also helping with her caregiving. 

My mom is where your mom is right now. Back in November hospice told me she had only days to live. That was five months ago. Since then she's rallied considerably, eating well, talking up a storm, laughing and smiling. Sometimes she spits out her pills like your mom, because she doesn't like the way they taste crushed in the pudding. Or because she doesn't believe she should be taking any medication. 

Every medication decision requires that balancing act and a discussion with the memory care and hospice nurse about how best to keep her safe and happy. She contracted a UTI, and we gave her antibiotics. She got covid but we decided against giving her an anti-viral medication because that meant we'd have had to stop her anti-anxiety meds for 10 days and we had just gotten that drug dosage properly adjusted. No sense in putting her through a withdrawal and the possibility that the anti-anxiety meds wouldn't work when they were restarted. She got through the covid just fine. 

With the discussions I always ask the nurses what they would do if she were their parents, and then I make the decision that to me seems to be the most sensible and responsible. And the deciding factor is how best to keep her safe and happy. 

So that's my take. I would not discontinue the BP meds. Good luck! It's a hard road. 

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alzsarah2

Dear CG,

If you were in her position, what would you want? Is this quality of life? Did you and your mother ever talk about what her preferences would be as she progressed? I would not want to be kept alive if I don’t have any quality of life. If going off medicines would hasten my death, I would want that and that is what I would tell my family in advance of a dementia progression to later stages. It’s hard to let go of someone you love. I feel your angst. Best wishes.

Alzsarah

BassetHoundAnn

Victoria2020 wrote:

towhee wrote:

Canyongal, there is a previous post in 2018 which I feel would be helpful to you. It contains a post by Jo C. about why different meds are continued or not in hospice. I can't give you the link,

ADDED

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147541530

 

Thank you so much for posting that link Victoria! Once again Jo's posts are *excellent* and worthwhile reading for everyone. Thank you, Jo and Victoria! 

  

tll3

CanyonGal,

As the family of a LO in hospice care, it is your right and duty to advocate for them. Hospice care is as much for the family as it is for the patient. Family's need to be comfortable with end of life decisions for their LO. If you need more help navigating the decisions, consider speaking to the hospice social worker. Explain your concerns. The SW is the advocate for patients and families. They should be trained in helping you with the delicate balance between the medical and emotional ramifications of these decisions. If you still cannot find satisfaction, speak with their superior or seek another agency for care. 

Jo C's post was a worthwhile read, well done. 

towhee

Victoria, thank you for the link!

CanyonGal

Thank you for the link! JoC nailed it! "Stopping necessary meds without being actively dying is considered "euthanasia," or the hastening of death, and is not considered appropriate.  (The operant word in that sentence, is "necessary.") "

This nurse has some year of experience but is new to hospice at a facility. She is over medicating and the doctors at the hospital noted it. They stated my mother was on too many sedating medications, which can contribute to her having falls. The discharge papers have tapered it back and noted that my mother was communicating better with the lower dose.

Removing her blood pressure medication will create a tailspin of symptoms and until she is actively dying, she should have them. I have seen the transition to actively dying twice in my lifetime, with the last time being last month. I agree with removing medication in the actively dying stage, but she's not in the actively dying phase. She is talking, able to maneuver in the bed, but is weak from being in a hospital bed. (There is also something wrong with the arm that had the IV in it.)

The spitting out of the crushed meds has happened before; she doesn't like the taste of some of the medication and chocolate pudding doesn't always mask it. Who knows how much remains in the mouth and gets swallowed.

I am not saying my mother is not declining, she is, but it is not the dementia (yet) that is the issue of the decline. Put me in the hospital for over a week and I am not going to bounce back quickly either. 

harshedbuzz

Canyon-

If pudding isn't enough to mask her medication flavor, other options to try are grape jelly or Hershey's chocolate syrup on a spoon. 

HB

CanyonGal

harshedbuzz wrote:

Canyon-

If pudding isn't enough to mask her medication flavor, other options to try are grape jelly or Hershey's chocolate syrup on a spoon. 

HB

We did purchase Hershey's chocolate syrup as another option. I had not thought of the grape jelly and will pass that idea along. 

I have a PCP virtual meeting this Wednesday, and although Hospice has the primary role, he is still involved in her care, especially when she is admitted to a hospital. Hospice wants to take her off all medications, but I said no, not at this stage, but I am going to discuss with him removing some medications (at least for a bit, "a pill vacation") to see if that helps ease the amount of medication. 

That said, she did take her medication and has been eating (with assistance). She even requested someone take her to the bathroom to do her business over the depends disposable underwear, and actually had a shower earlier in the week. Granted we are using transfers from bed to wheelchair to toilet, but that is using some mobility over just being bedridden. 

BassetHoundAnn

Several different aids at my mom's memory care told me on several different occasions that the particular hospice service from which my mom is receiving care have taken residents off all their medications and they died a week later. 

One aid also told me how when she was in charge of her grandmother's care, she was often coming into conflict with the hospice over what she thought was appropriate for her grandmother as a long-time memory-care CNA and what they wanted to do. Medication was often a point of contention.