This is sort of a followup. In brief, if you don't read the background at the above thread--she is 82, has metastatic breast cancer and has recovered from several crises in the past 20 years. I don't know if she'll recover this time, but she is fighting. We've given up in the past & she's recovered, so although she has become cachectic, and is using O2 X 2 months now, she seems to have a very strong constitution.
First my questions, then background:
1) fentanyl patch: how is it usually tapered down? Is it feasible to taper from 25 by putting on a 12.5, then putting on a second 12.5 if the first is not adequate? If not, then how is it usually done?
2) is fentanyl used as morphine is, for dyspnea? We are concerned because of the sedative effect of the fentanyl. Some shorter acting medication might be preferable?
What led to this: She did have a pleural tap about 10 days ago, hospice was revoked and then she started hospice again after the procedure. She was d/c to home yesterday. Pain has never been an issue, but of course she needed pain relief after the chest tube, and is now on fentanyl 25 mcg, with OxyFast for breakthrough pain. Initially, because she still had some pain on the 25 mcg patch, the pulmonologist had upped it to 50. My dad appealed to me to intervene because she was oversedated then, and the doctor refused to listen to his concerns, said, "I'm the doctor and you don't know anything about this." I've had to step up to the plate like this before with doctors or nurses in the past, unfortunately, so I did intervene. We were able to get the regimen changed to the present one. Now we are wondering when and how the fentanyl can be taped off and stopped, as a quality of life issue. And, we suspect the hospice folks want her to stay on it. We really don't want to have a conflict with them over it.
THis is how she is today: On fentanyl 25, she is still drowsy and is unsteady on her feet. She falls asleep while watching TV, but her appetite is still good, and if you talk to her, she converses normally, then falls asleep again. Knowing her baseline, it's very hard for us to figure out if this is advancing disease, or the opioid, but we tend to believe it's the latter. She has, and has for several years, had dyspnea, due to lung involvement and some CHF. She is having no pain and has not needed the Oxyfast for at least the past 2 days.
Is there some school of thought in hospice that the person should spend indefinite periods of time on powerful opiates? Are there some hospice nurses who think the patient is better off on Cloud 9, or is that just my impression? From what my dad is reporting I am wondering if the hospice nurses are lumping my mother in with people who have chronic cancer pain, and are reluctant to consider tapering off the opioids. My dad is frustrated and concerned that he is being cut out of the loop: the hospice nurse says she will only discuss my mom's care with my mom. He has no concerns about addiction and does want her medicated if she has pain, but once the pain is over, he doesn't want her on the patch anymore.
He now wants me to go there and intervene with the hospice nurse when she visits tomorrow. I would like to be able to speak to her with a little more knowledge than I now have.
Hi, I am the one who originally posted the question about my Mom.
Thank you to everyone who commented since this is helping me get a balanced view of the situation.
I wanted to update and ask for some feedback.
Just a note on the patch outcome: On Mother's Dad the hospice nurse visited. She asked Mom if she wanted the patch on & Mom asked her to remove it, so it was removed. Mom was fine without pain for several days. 6 days later I was there & she c/o pain near the old chest tube site (tube was removed about 2 weeks previously). We gave her OxyFast q2hr prn & it worked really great. She is using it still, prn. Dad only let me give it because he trusts me (he thinks the hospice nurse wants to snow Mom. I wonder myself).
I spoke with the hospice nurse on Mother's Day, and I'm afraid I was not very impressed with her. I found her authoritarian, and she didn't seem like a seasoned hospice nurse to me--30 years in a NICU and 18 months hospice experience might mean she is still on the learning curve. I didn't like our family being stereotyped as putting our own interests ahead of the patient's. She seemed to want to pit my Mom and Dad against each other. I think it was just ineptness, not intentional.
Here is my latest question: Why would the hospice threaten to discharge/refuse to further care for my mother should she revoke hospice one more time? Is this just a reflection of a policy they are permitted to set? Or is it untrue? If they refuse, is there any reason she cannot start a new election period with another hospice provider? Do they make more money in the first 2 90 day periods? (I know this sounds cynical. I am aware I could be off base, but I just don't know enough. Her first election period started late March and ran for about 1 month until she went into the hospital for the chest tube. The second 90 day period started about May 10. )
I am very interested in comments various of you have made to this and my previous question, they confirm my impression that the pleural taps are symptom relief and within the mission of hospice. That means that the hospice had the option to facilitate her pleural tap instead of her having to revoke.
This particular agency was displeased when my Mom revoked hospice to get the pleural fluid (2000 ml) drained, even now when she is returning to her prior baseline. All they intended to do was comfort measures and "medications" (probably Ativan and opioids) when she was having her acute resp. distress. My family is appalled that they apparently expected my dad to hold her hand and watch her suffocate to death (sorry if that sounds a little dramatic) and that they seemed to have decided she had lived long enough. Not to bore, but she is alert and oriented, asks for food when she's hungry, watches TV and listens to public radio as usual, and wants very much to live at this point. My family & I are resigned to the fact that she probably will not go on very long, but the time for her to die doesn't seem terriby imminent at this point.
Again, thank you so much for your previous and future comments.
I didn't like our family being stereotyped as putting our own interests ahead of the patient's. She seemed to want to pit my Mom and Dad against each other. I think it was just ineptness, not intentional.
Here is my latest question: Why would the hospice threaten to discharge/refuse to further care for my mother should she revoke hospice one more time? Is this just a reflection of a policy they are permitted to set? Or is it untrue? If they refuse, is there any reason she cannot start a new election period with another hospice provider? Do they make more money in the first 2 90 day periods? (I know this sounds cynical. I am aware I could be off base, but I just don't know enough. Her first election period started late March and ran for about 1 month until she went into the hospital for the chest tube. The second 90 day period started about May 10. )
I am very interested in comments various of you have made to this and my previous question, they confirm my impression that the pleural taps are symptom relief and within the mission of hospice. That means that the hospice had the option to facilitate her pleural tap instead of her having to revoke.
This particular agency was displeased when my Mom revoked hospice to get the pleural fluid (2000 ml) drained, even now when she is returning to her prior baseline. All they intended to do was comfort measures and "medications" (probably Ativan and opioids) when she was having her acute resp. distress. My family is appalled that they apparently expected my dad to hold her hand and watch her suffocate to death (sorry if that sounds a little dramatic) and that they seemed to have decided she had lived long enough. Not to bore, but she is alert and oriented, asks for food when she's hungry, watches TV and listens to public radio as usual, and wants very much to live at this point. My family & I are resigned to the fact that she probably will not go on very long, but the time for her to die doesn't seem terriby imminent at this point.
Please accept my sympathies on your situation.
First of all, many people behave differently when their loved one is this ill. There are issues with the stages of grief.
That said, I find that sometimes there is a gap between what the family wants and what the patient wants. And it is to hospice to facilitate what the patient wants. Sometimes that offends family members, who see what they want as "best for the patient". It is not the nurse trying to drive wedges, but trying to ascertain and fulfill the PATIENT'S needs/desires first.
It is also not part of "hospice care" to do pleural taps in most cases. They do not have the ability to do them in many cases or ability to facilitate. This does vary from place to place. As I noted, use of pleurx tubes may facilitate this, but they are fairly new.
When people choose certain procedures to be done, they often require intervention with surgical procedures. Depending on the MD, the DNR order may be/usually is temporarily held or revoked for the procedure and recovery period - this is because the MD is "artificially" interfering w/the patient's homeostasis and they reserve the right to "fix" things during that period. That often violates certain tenets of hospice.
Many hospices allow pts to opt out of hospice "temporarily" and then back in, so that they may have such procedures. But after several "opt outs", it gets problematic with some insurances/UR to opt back in.
And if people are repeatedly opting out, for procedures, insurance and utilization review is going to have issues as whether the patient is ready for hospice care. Thus it is rarily hospice, but usually insurance regs, etc. that is the problem.
While you can elect to go with another hospice, many will have more or less the same issues. If you opt out a lot, there will be problems. Again, insurance regs have issues with paying for hospice AND hospital care.
Hospice's job is symptom management. It is not curative or corrective measures in most cases. While a pleural tap is in some cases, a comfort measure - in many cases, it is a medical procedure than often prolongs suffering. And that is where the problem lies.
For the utilization question: the insurance is Medicare in this case. How can I find out what rules govern utilization? The Medicare patient info publication implies that people can go in and out of hospice as they need to with the stipulation that they can't revoke more than once in an election period. That means once within the first 90 days, once within the second 90 days, then a succession of 60-day periods. We're talking one revocation so far.
Again, as family, we are only supporting our mother in her decisions. She wanted to go to the hospital last month because she could not breathe. (Hospice solution would have been tantamount to euthanasia at that point. What is wrong with this picture???) Her latest decision was to request the hospice assign a different nurse. She had told the authoritarian one not to come, the last 2 times the nurse called to arrange a visit. She was depriving herself of an important service in refusing the nurse, so I was relieved she made this decision. Hopefully the second nurse will have a little more sensitivity.
Mom will not discuss her diagnosis or prognosis and if anyone mentions it, she becomes anxious and tells them to change the subject (that includes us if WE mention it). This is what she's like, has been for years & she will not likely change. On several occasions the hospice people have disregarded this and seemed to be insisting she talk about the subject even though it upsets her ("Of course you feel tired, you have metastatic cancer!" is one example of a statement that would be acceptable in some cases but not in this case). These efforts to make her change, instead of adjusting to the reality of where she is, are obvious blunders and have contributed to the communication breakdown with this hospice. All you have to do is look at the face of the person you're talking to and their expression will tell you if you've said the wrong thing. You shouldn't need a family member to tell you. Also, a good intake should have elicited some of these issues. All patients are unique individuals. Yes, I'm a family member, but I'm also a health professional, and I've taught nursing assessment for a local BSN program. I can tell when a good history has not been done and when professionalism is lacking.
It is very hard to see a parent wasting away and dying. Right now she looks like a concentration camp victim. A few of us have tried to "give her permission" to leave ("if anything happens to you, we'll be OK, we'll take care of Dad," whatever it is she seems to be waiting to hear). Still, she is obviously not ready to give up. She has a DNR but it is obviously easier to implement a DNR on a person who is comatose, who actually needs to be resuscitated, and is not asking for help.
As far as utilazation goes, the patient who revokes loses the rest of that benefit period, which is fairly meaningless since there is no limit on numbers of benefit periods. You have to find a good fit with your team, it is your mothers' death, she gets to say what she wants.
Well, different hospices vary but any treatment for the qualifying disease process should be covered by the hospice. Some of the hospices in our area do just that, have the patient disselect to go in the hospital, get a tap, etc. We do not unless the care is aggressive, life prolonging care ,not palliative care to address symptoms.
In this situation, the pleural taps are pallative, and Hospice needs to
step forward. Your mother needs to be supported throughout, but issues
need to be addressed and resolved, denial/avoidance isn't an option.
God Speed!
While taps often are palliative, most hospices are not in a position to provide them. Most lack the ability to provide that level of care,.
Much like one can argue that use of drugs like Tarceva are palliative, but few to no hospices can possible afford to provide them and the research backing the use of such drugs for palliation is very limited. One can also argue the palliative issues of doing pericardial windows/extensive chemo/extensive antibiotics for comfort in some cases - it does not fall within most hospices wherewithall to provide such. And if the pt leaves hospice repeatedly for medicine/procedures, hospice is within its rights to question the appropriateness of hospice, and that continued medical care is more appropriate.
EmptytheBoat
96 Posts
Duragesic came out with a 12 mcg patch, I understand they are
expensive, relative to higher strengths, but gives another tool
when titrating medications.