Hospice has doped my dad!

Published

Specializes in cardiac/education.

No disrespect by the title of this thread, but I must say I am rather frustrated with what is going on.

My dad has hx of alcoholism (and addictions of other nature as well). When he first got terminal lung ca the doctors told him how addiction is not a concern now, only pain control. Well, I believe he either never really fully understood the pain scale or he manipulated to get strong opiods to medicate anxiety (he has Xanax, but I think he prefers the completely out of it state of Oxy--until he became completely "gone".). Anyway, he is now sitting at 600 mg Oxycontin per day when you combine SR with IR. He is so out of it that he nods out in from of the fridge for 3 hours!!! It has gone from bad to worse! Every time hospice comes my dad says his pain is between a 6 and 8 on the pain scale but will tell us earlier that day that the PHYSICAL pain in his chest is only a 3 but his MENTAL pain is off the charts. We try to explain that Xanax is for mental pain, Oxycontin for physical pain, but no matter what, every time he has some anxiety (which is all the time) he reaches for that IR! Well, because of that every time they come they are upping his drugs. Last time, he couldn't even talk with the nurse for the assessment w/o his head falling and she wanted to DOUBLE the whole freaking dose! My dad will even say he doesn't like how his mind feels, how doped he is, but he doesn't speak up. I know he is just too afraid of what is too come.:o

It is frustrating cuz on one hand my Dad will say he thinks he is too doped up, that we are right he did not understand the pain scale, but then when the nurse comes he is like mums the word! Last time she visited we all were there (my siblings) and everyone ended up in this big fight :argue: , speaking for my Dad. Finally I spoke up (I could tell the nurse was frustrated) and said, "Excuse me, but shouldn't my father be able to speak for himself..I mean, is he still ABLE to speak for himself?" The nurse said, "Yes". So I said, "well, ask him then!" (regarding whether he wanted the medication doubled). We were so very concerned because now he has become incontinent of bowel and urine at night, and most recently, has developed tremors. The nurse also said that putting him inpatient for one week and getting him on Methadone was another option. WHAT?? Jeez, we don't want to do that....He had one month to live one month ago, the last thing we want to do is put him in a facility to "detox" from Oxycontin. Jeez.

I don't know if we are all fighting a losing battle anyway. His appetite is close to nothing (don't know if that is influenced by the Oxy). He has tremors now and they did decrease the Oxy because of that. He can't hold his bowels. And according to him, pre Oxy, the only pain he had was in his chest!! I don't know if it is just the drugs causing all these symptoms. He is taking something like 50 pills a day!!!! You know, senna, colace, xanax, mediclophan (nausea creme), Oxy SR and IR. He can't even remember what day it is and DEFINITLY can't figure out when he gets more pain meds. I don't even know how he even can remember he is in pain!!!

he was supposed to have only "weeks to months" according to the doc back on St Patty's Day. with his SCLC, the tumor near his heart is the big prob, but now he has a visible mass on his back near his kidney. We want my Dad to lead a pretty OK quality of life while his pain isn't so bad, but now, because of these drugs, he has lost almost all dignity. Am I wrong to assume this? Is this just the end, like it or not? I just wish these drugs were never started cuz now we will never know how he really would have felt!:crying2: :crying2: :crying2:

If you have any suggestions on how to deal with this situation, I would like them..anything that has not already been suggested.....

Thanks everyone!!!:flowersfo

Up Vote Up Vote ×
Specializes in Utilization Management.

((((Thrash))))) So sorry you and your family are going through this.

My advice: Just love him as much as you can while you have him, whatever his level of function is.

Up Vote Up Vote ×
Specializes in Utilization Management.

Let me add:

My Dad was on Hospice and because of the Roxanol, he didn't recognize me very well. I also suspect that the Roxanol might've had some other side effects that diminished his level of function.

I didn't really care that he couldn't recognize me, because he needed the pain control. We had a good time even though he was a two-person lift into the car, he had a Foley, and I had to feed him.

He passed away at the end of March.

Up Vote Up Vote ×

sadly, it does sound like your dad suffering alot of mental anguish and is using the meds to comfort him. i'm not sure if you're exactly comfortable in your relationship w/the hospice nurse. she should be treating your family as well as your dad (with dad being #1 of course).

what does she say when you relay conversations of dad's concerns, i.e., re much of the pain being mental? perhaps you need to speak with the nm/cm of the hospice agcy?

your dad does sound doped up but not at peace. the goal is to get him in a good place. doubling his meds doesn't seem appropriate.....not if he's getting the pain down to a 3. he needs to try a xanax for his anxieties.

i can't advise a whole lot....but it doesn't seem he wants to be alert. and we usually do oblige to a pt's wishes. some do want to be alert and will sacrifice being in pain to achieve a level of mental acuity. but since your dad has had problems with addictions in the past, it sounds this is the way he chooses to be. in summary, he needs to try some xanax but know, that being sedated/doped up is how he wants to be. as it stands, he's doped up but still suffering mentally.

at this point, being realistic about how your dad would prefer to die, is something that should be honored; and is consistent with past behaviors. you can still preserve his dignity: keep him in an attends, keep him clean, keep him covered.

it sounds like you need to have a 1:1 conversation (again?) with the hospice nurse re: what your dad had shared with you. i would hope one of her goals would be to address his unresolved anxieties as well as monitor for developing and/or unresolved physical pain. in the meantime, love him unconditionally. it's so difficult, i know. and i'm so sorry. pm me anytime.

leslie

Up Vote Up Vote ×

Frankly, I'd let him stay stoned. What's he gonna do, raise himself from his bed and knock off a 7-11 for drug money?

Let him die in comfort and without fear, thrash. I know you love him very much and are worried about him but really, the die is cast.

I wish you and yours peace, and him an easy passing.

:(

Up Vote Up Vote ×
Specializes in Med-Surg, ER, ICU, Hospice.

A couple of things seem to be going on here….

First, you father is terminal and his physical condition will deteriorate, so it is not entirely the drugs.

Second, dying process is resolutional in nature. The more issues a person has left unresolved during the course of his/her life, the more issues they will have to resolve during their dying process. Individuals who substitute addictions (whether they be drugs, alcohol, work, religiosity, sex, etc., ad nauseum) for resolving their personal life issues generally wind up with a lot of unresolved life issues. The probability of your father being able to resolve an accumulated life-time worth of unresolved issues in a few days or weeks while physically dying and on pain medications is, to be frank, rather slim. On the other hand, resolving just one is better than resolving none at all. I would suggest that either you or a member of the hospice team or both spend time talking with him about his anxiety in depth. I would also recommend a member of the family be with him 24/7 and dispense his meds to him. He does not have much time left.

Up Vote Up Vote ×
Specializes in Med-Surg.

I'm sorry that you're going through this.

Honestly, the process is dying isn't pretty. There are periods of being "out of it", incontinence, loss of appetite, etc.

As Leslie will tell you, hospice nurses have to continually adjust patients medications based on what their assessments reveal at that moment. If the nurses are getting mixed messages "he's so out if it", "detox him? Are you crazy?", "his pain is 8/10" "he's on too much medication and he doesn't like it", it's hard for them to do a good assessment.

Be there for you dad and find out what makes him the most comfortable. It's not an exact science and it changes from day to day.

If he spent his life self-medicating with an addiction, he's probably going to want to cope with his dying in the same way. Whatever makes him the most comfortable is where you and you family need to go. That's the hospice way.

Honestly, I'm drug free but probably would need to take advantage of current medications to help me cope as well.

Best wishes.

Up Vote Up Vote ×
Specializes in Home health, Med/Surg.

Sorry about your Dad.

When my Mom was on Hospice (colon cancer spread to the liver) she was on liquid morphine and Duragesic patches. I couldn't tell at the end whether her ALOC was because of the meds or the spread of the cancer. She also became incontinent and would doze off mid-sentence. I just wanted her to be pain free. It was really hard because she was never "ready" to die, she was only 44. It is hard to balance pain control, the mental anguish of the dying process and wanting to spend as much time as possible with your family. I don't know if there is a good way to do this. Each person has to decide for themself if they want to be "snowed" if terminally ill. Get some emotional support for yourself. I went to an MFCC for grief counseling and it was the best thing I could have done for myself. I can't imagine the complication of dealing with an addictive personality on top of being terminally ill. I hope you and your family find a balance. Your Dad is lucky to have his family around him.

God bless the Hospice nurses who cared for my Mom, they taught me a lot and helped my family through the worst time in our lives.

Up Vote Up Vote ×
Specializes in cardiac/education.

Thank you all for your replies and I am truly sorry for all the losses you have suffered. You all are a wonderful resource for me.

I understand what all of you are saying and am really starting to see that it really doesn't matter much anymore. If he is "snowed" he is not going to remember much and maybe that is the best thing that could happen now... They did titrate the Oxy down because of tremors and yesterday at our Easter function he was much more alert, albeit he said he had more pain in his chest (from the med drop?). He is currently living with my brother (he wants it that way) who is addicted to drugs, unfortunately (obviously he is not the best caregiver, my sister comes over on days I cannot and has been a lifesaver). I offered several weeks ago for him to stay with me full time but he said I lived too far away. I told him anytime, he could come. Yesterday, he made a comment about "maybe staying with me" but then again said how far it was. I drive to see him almost every day (it is only about 30 miles). I think he may be very uncomfortable dying with my brother because I think he fears my brother will break down/freak out. I am going to have to have a heart to heart with him on where he wants to die. He looked at inpatient facilities and seemed to like one OK, but truth is, I don't think he wants to die in a facility. My parents broke up several years back so he has no SO.

Oh well, I'll talk with him today.

Thanks again all and I will let you know about any changes that come. :mad:

Up Vote Up Vote ×
Specializes in cardiac/education.

BTW.....the hospice nurse really has been great. Like one poster said, hard to do assessments with a bunch of people putting in their two cents, which is what happens. My family is very dysfunctional so that comes out in the visits, lol. We are trying to do our best, but our best maybe isn't too functional, lol. We all care very much and want the best. Some of us are having some denial issues (brother) and really can't deal. If we could get rid of bro, we would be better off, but this is his fight too....:uhoh3:

Our hospice nurse probably leaves everyday saying, "Man, what did I get myself into here?":lol2:

You guys have any patients like that, where the family (and/or the pt) is just nutso!!! I can't even imagine, cuz under stress people don't get better!!:lol2:

I guess that is 99.9% of all families though, eh?

Up Vote Up Vote ×
Specializes in Med-Surg, ER, ICU, Hospice.

As John Bradshaw says; All American families are dysfunctional, it is only a question of degree. (I recommend his books or better yet, his first 10 hour serious for PBS.)

Don't feel so all alone. Earth was not set aside for the 'perfect' people.

Up Vote Up Vote ×

:yeahthat:

If you have a family, it's dysfunctional.

It sounds, though, that as dysfunctional as your family is, you're all loving and close, and pulling together in this stressful and sad time.

Up Vote Up Vote ×
+ Join the Discussion