When is it ethical to make medication decisions for hospice patients with early dementia?
I know many of you are caring with dementia patients and probably have to administer meds that that are in your elders’ best interest without necessarily getting their approval.
My mom is in end stage pulmonary failure and has been on benzodiazepines for 18 months (well before being put on hospice) because her episodes of extreme breathlessness cause anxiety bordering on panic.
After 2 back to back month long rehab stays, and now being bedridden at home since August she is showing signs of dementia. She has asked a caregiver to come when another caregiver was scheduled (twice) and often gets dates, times, sequences of evens confused. The problem is she insists SHE is in charge of her own care, and it causes a lot of chaos.
Her pulmonologist told us it would not be unusual for her to be sleeping 17 hours a day at her stage of the disease. However SHE thinks that she is being “drugged” with the morphine and benzo. The hospice nurse told us the morphine dose she is on is the equivalent of half of a 5mg Percocet. The benzo is lowest dose available in pill form.
She will only take half the benzo dose and is becoming increasingly anxious and agitated. The other night she was so agitated I told the aid to go ahead and give her the other half of the dose, (as if she hadn’t taken the first half). This would have only brought her up to her minimal prescribed dose - it would not be giving her extra.
I discussed this with the hospice nurse who maintained that it has to be Mom’s decision to take the full dose or not because she hasn’t been declared incompetent. She doesn’t have to live with her, lol. I asked the pulmonologist and he said mom would be more comfortable and would breathe easier if she took the prescribed dose.
What would you all do?
My only experience with giving morphine and anxiety medication (I believe it was Ativan) was when my mom was actively dying and began suffering from oxygen starvation. When I started the "cocktail" she was mostly lucid, although clearly terrified because she was having such trouble breathing. The only thing I told her about the medication was "it's ok, mom, Hospice gave me medicine for you for this to make you feel better". I didn't tell her it was morphine and anti-anxiety meds; I didn't want to run the slightest risk of her refusing the medication because of the "stigma" that using those medications sometimes carries. I didn't feel it was unethical to keep this information from her, because the bottom line is she was dying, and I was doing what needed to be done to keep her comfortable, at peace and pain-free, which is, after all, the primary goal of hospice.
Tell the hospice nurse quite frankly while you understand mom is not "officially" incompetent, her refusal to take the prescribed and recommended dosage from her pulmonologist is causing her undue distress, which is the exact reason you placed mom on hospice, to prevent her from going through that. As long as mom's pulmonologist is on board and will continue to prescribe the medication, I think you should do what he's recommending, especially as you seem to agree with his assessment. Even if it means "tricking" mom into taking it.
(((hugs)))
Mom has been well aware since the beginning of the nature of her medications. And for someone who never drank alcohol or smoked a single cigarette in her life, it’s literally a hard pill to swallow. Today I was with her and she took the prescribed amount of medication. I think the suffering from the inability to breathe is becoming worse than her fear of the medication.
Mom did sleep quite a bit today. But she also was awake and alert for meals and we had time to chat. I rubbed lotion on her legs and feet. I think this is the best I can hope for. It’s one day at a time. I do not know how long this will last, or how hard it will be at the end. I am a little fearful, but I’m trying to stay in the day.
I don't like to think of the agitation she's experiencing as a result of her poor decision, because to me agitation=suffering. Difficulty with breathing also equals suffering. What would it take to get her declared incompetent?
Are you her MPOA?
If your mom is showing signs of agitation hospice usually prescribes different medications for that like Lorazepam, or Haldol(or both), so I would ask them to prescribe those instead as I'm sure the morphine does knock her out more even in a smaller dosage as everyone tolerates medication differently.
I also hope that your mom is on 24/7 oxygen if she's having trouble breathing. Hospice will supply the oxygen concentrator as well. And that should help your mom breath much better.
Wishing you well as you take this final journey with your mom.
She’s on 4L of O2 when resting and 8+ for activity.
I should have made it clear in my initial post that I’m not talking about cutting pills in half. Mom has orally disintegrating tablets (under the tongue) that are half the dose, and were meant to be taken as needed, in between the regular doses. The full dose is the same type of tablet that looks exactly the same.
We could easily give her the full dose and let her think she is taking the half dose. The hospice nurse implied that was unethical. Also, since mom is already accusing us of drugging her, I don’t want to be doing that. But I do hate to see her so anxious constantly when it it could be so easily remedied.
Re: competency test. Any transport of mom now has to be by ambulance. So we would have to go to court. Mom would (rightfully) be appointed her own lawyer, who would find that she in NOT incompetent. She is an insightful conversationalist, and I think she is still only at the very early stages. If she had full blown dementia I wouldn’t have any concerns about administering the meds as the doctor prescribed.
She bounced around from refusing anything for anxiety, to taking waaaay too much--it was a real learning curve, and as her dementia has increased (the kids refuse to see that she has some level of it, IDK why)--she is less likely to be even aware of if she's taken her meds or not.
Yes, mom would be more comfortable with the correct dose of meds. And that level of Morphine is pretty low. A lot of elders are so terrified of 'addiction' or the thought that their LO's (or the Hospice Co) is literally trying to kill them-I am never surprised when I hear that someone's elderly parent is accusing everyone of trying to kill them!
Maybe it's time to HAVE mom declared incompetent. Then this will not be an issue.
Also, the benzos come in all colors and doses. If a 'blue' pill is the right dose, but she refuses to take it, only takes a half--have the pharmacy change that out for a different colored 'correct dose'. (the benzo I take comes in yellow, blue, white, pink & green. All the same dose.)
As far as the Morphine--well, I think once she's calm, she may be less adverse to taking that. That also will help with her breathing.
I guess your real problem is that mom is still 'in charge' and really isn't capable of being so.
So--good luck. IDK if her pulmonologist can have her declared incompetent--but I'm sure someone in the loop can get you pointed in the right direction.
(Just a warning: when they took MIL to the dr for that 'test', she was so angry she about bit the poor dr's head off. It got ugly, I know. She was not declared incompetent, but rather 'unable to assess'. That was worse. Now she is in Hospice, she doesn't see any Drs anymore, so we really DON'T know what's going on inside her. Kidney failure? CHF?