anonymous761984 Asked January 2018

Patient reevaluation?

My 88 year old mother is in Hospice care. She has been prescribed a pain medication. One side effect (said the Hospice Nurse) had caused my mother to feel that she is in more pain than she actually is (hallucination). She had gotten too much of the said pain medication built up into her system (not an actual overdose) and since then she has been in worst pain than before. The Hospice nurse since then prescribed a stronger long-lasting pain medication, a sedative, and another medication to perk her up during the day and continues using the same pain medication that caused her hallucination. I'm left with the impression that she may not be in as much pain as she thinks she is and the medications are causing her to be in a worse state than she actually is. Is it possible that they are mistaken and making her condition worse via the medications? Because a week and a half ago she was able to use her commode with assistance. Now she cannot bare being turned in bed. Before she could have a coherent conversation. Now she is in a dream-like state and muttering. I can only imagine that the only way to find out what her real status is is to find another medical program that would reevaluate her condition. This would be difficult to do wouldn't it? Or are they doing the right thing? Or perhaps I am not willing to admit to myself that my mother is dying and there is nothing that can be done about it? Also, it is hard for me to believe/understand that her condition is deteriorating this rapidly. ***I did not know if it was necessary/appropriate to include specific details of mother's illness and medications being administered.

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i am going to suggest that your current hospice nurse does not have any idea what she is talking about. You can talk about this to the Social worker and she will talk to the rest of the Hospice team, or call the Nursing supervisor and express your concerns and request a different nurse. You have every right to do this.

Your description of your mother's symptoms do suggest that she is approaching the end of her life.
At this time i would her to eat or drink very little and sleep most of the time.

Bone cancer is very very painful and any movement is very uncomfortable. If you can give a dose of medication half an hour before moving her.
Methadone dosage is very difficult to get right which is why liquid morphine is usually used in combination with a long acting narcotic.
Dilaudid is a good pain reliever but not often used these days. My personal choice and I emphases personal would be a fentynal Patch and Roxanne (liquid morphine) for breakthrough pain. It itially fentynal patches take about 24 hours to start working and they are changed every72 hours so there is no break in pain relief. There are chart for calculating doses based on previous use of similar meds.

Would you rather that mom was sleepy and pain free most of the time rather than being kept awake with an amphetamine?

You have every right to refuse any drugs or treatment you feel is not helping Mom.
I would address these concerns with the Hospice staff first thing tomorrow morning when all the proper people are available.

You have two of you providing care so you should be able to manage this care Many people do it alone which is too much. Hospice should be sending someone in 2-3 times a week or more often to assist with things like bathing. make sure you both have somewhere quite to sleep during your down time.

If all else fails change Hospice providers if there is a choice in your area.

Helpful Answer (8)

Mw - my mil became ill while in NH, then hospitalized and then moved into a freestanding in-unit Hospice. Septic & Extremely frail with preexisting CHD. The majority of patients in the Hospice were cancer patients & many younger & not at all the NH elderly population. All on very serious back box warning type of pain medications & some face mask upon entry as well. We were told that finding the right recipe to balance pain & keep cognitive would be difficult and to expect her to express that her pain was beyond a 10 as there’s a lag time. Took abt a week. She was best on Fentanyl lollipops, it’s a beyond scary drug but for some types of pain nothing works like it. The in unit Hospice nursing staff were most excellent, very knowledgeable. Let them know your questions and concerns.

My mom was on hospice at her NH. Hospice coming in 3 days a week type of situation & augmenting the care already provided by the NH. Very different Hospice than the in unit experience with MIL. Mom on Hospice 18 long, long months; MIL 3 weeks. Very different paths to death. Hospice is an amazing resource for the patient and thier family. If this is Medicare benefit Hospice, bereavement counseling is available for you later on should you want it.

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The *very* least I would expect of a hospice nurse is that he or she is a reassuring presence both for the patient and for the patient's family and caregivers, able to explain what is happening and what is to be expected clearly and accurately. A firm, authoritative personality can be a good thing in this, but not if it leads her to be dismissive of your concerns, inflexible in her approach to your mother, or, worst of all, slow to ask for more support from her co-workers and superiors.

If you and your brother don't have confidence in yours, speak to hospice and ask for someone to visit or at least call you to go through any questions you have. Make a list of questions, if you like. Don't hesitate - you're not complaining or arguing, you're just asking perfectly reasonable questions and you have every right to considered answers.

Helpful Answer (6)

I want to emphasize what CM is saying. If you don't understand an explanation, ask them for a different explanation.

" do you think that there might be a combination of pain meds that would allow mom to be comfortable AND coherent, or is her disease so advanced that we can no longer hope for an alert state? ".

" Is this the right combination of meds? If Dilaudid is causing hallucinations of worse pain, should we consider weaning her off that and using something different?"

I understand the sort of incoherence that comes with watching a loved one die. I was mostly mute with dread, watching my mom in hospice, except for wanting to strangle my SIL, who is sweet and wonderful, when she'd ask what I thought of as bizarre questions of the nurses. It's not easy, and I had complete confidence in what the nurses were doing. Please try asking your questions. You have a right to be without doubts.

Helpful Answer (6)

I'm concerned that you think you have no say in asking for a different hospice nurse. You should be completely comfortable with the person explaining these things to you, and you are not. You can change hospice organizations if this crew is not cooperative and not explaining things well. Please remember that YOU are driving the bus on your mom's behalf, not hospice.

I have been told that when cancer matastesjzes to the bones, the pain is awful but I have no direct experience. I'll let others weigh in.

I'm so sorry that your family is going through this.

Helpful Answer (5)

I'd like to point out something about the "6 months to live" statement the dr gave you. Somewhere in Dr. Atul Gwande's book, Being Mortal, he shares a study that shows that drs overestimate a life expectancy by serious amounts - doubling or tripling it would be completely normal. They don't want to give up hope because they see death as their own defeat. Don't be mad with the dr - he wanted her to live much longer and was kind to suggest hospice

From what you describe, she knew she was in pain and was slipping away. I'd do what Barb & Veronica suggests above and make her as comfortable as possible on her journey. Hugs.

Helpful Answer (5)

Mwb you're entitled to keep as much detail private as you think best, of course; but it's very difficult for people to share their own relevant experience of, for example, various types of pain relief if they don't know what is being given to your mother.

You shouldn't post any information that would *identify* your mother, but it's fine to be specific (as specific as you're comfortable with, anyway) about her illness and treatment.

Helpful Answer (4)

Spot on Surprise about the 6 months to live statement.

Helpful Answer (4)

BarbBrooklyn. Well, the good news is that the new nurse is perfect. And we found a Home Care agency right in our neighborhood to assist us. The down side is my mothers condition is further along than we had known or expected. She may have as little as a week or two now. No point in moving her away from her home now. She will remain here.

Thank you everyone!

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