sukichaz

Hi Carol, Thanks for your response. 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.

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.

Tencat, thank you for taking the trouble and care to respond, but I have to point out to you that I originally stated that addiction is not a concern we have. Alsok, it may seem to you like 82 is extremely old, but age in years and level of functioning have little relationship. There are people in their 90's who live at home and function independently.

Thanks NRSKarenRN, Actually, my mom has had no pain at all prior to having the pleural tap. Her problem was solely dyspnea. I guess that is unusual, but there's no reason patients have to fit into a preconceived pattern. My mother is quite lucid and keeps up with current events better than I do. She speaks for herself and definitely makes her own decisions about her care. My father and I both questioned using fentanyl transdermal since it is not indicated for postsurgical pain and or in opiate-naive patients, since we were in a position to read the prescribing information and mom was not. The family doctor started her on the patch, not a pain specialist, and this is a doctor I privately consider mediocre in her practice, from many past experiences. From what you have said, I think it is quite likely that the hospice providers are assuming that she is having cancer pain because they have made an assumption that every breast cancer patient has cancer pain. This explains why, from the inception of hospice services in March, the nurse would ask about pain at every visit. This had my parents bewildered and understandably led my father and me to wonder if this nurse was truly in touch with the situation. From what another person said to me as a response to my question, there are obviously some hospice nurses who must think that because a person has lived a long life, that it's fine for them to die. However, my mom has made it very plain that she wants to stick around for as long as possible, and she was doing housework and had independent ADLs until going in for the pleural tap 10 days ago. In light of this, when nurses have said to my dad things to the effect that: "what do you expect, she has metastatic cancer" it comes across as shockingly insensitive and out of touch. So yes, we do have concerns about powerful narcotic drugs, and with hospice nurses who seem to be eager to administer them and at the same time have written my mother off, it's no wonder my dad calls the visiting hospice nurse the "angel of death." I'm old enough to remember terminally ill patients being deliberately "snowed" in inpatient units. I am starting to wonder if this is still going on under the guise of symptom management. So I do appreciate your suggestions about tapering. We want to take things a day at a time, respect my mom's wishes, and act according to the situation.

Dear hospice nurses, Some of you were very helpful to me about 6 weeks ago when I posted a question about my mother being able to get a pleural tap while receiving hospice services. (That thread is at: https://allnurses.com/forums/f25/question-about-dyspnea-215167-new-post.html) 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. Any thoughts? Thanks, Stephanie

Thanks--from the bottom of my heart--to everyone who replied. I have a much better sense of what hospice can do in this situation for symptom relief and comfort meaures. I shared this information with my father. He is going to ask the hospice nurse coordinator about some of the other treatments mentioned. I think with a diplomatic approach we might not have to think about changing hospice providers. I was wrong, I guess, to think the Combivent would not be helpful, since last night Mom found a Combivent inhaler her pulmonologist gave her last year and tried it and found it helpful. Today my dad reported to me that she had a good night's sleep and today put on her street clothes and spent some time without her O2. It's such a relief that there is at least for the time being, a treatment that is making a difference.

Hi, First thing, I admit I am not a hospice nurse. I'm a nurse practitioner and I'm trying to help my 82 year old mother and 85 year old father, and I would appreciate some feedback from you. I don't know any nurses who do hospice that I could call up to sound them out, so I'll try here. . . I have a few questions at the end of my post. My mom has metastatic breast cancer & she also has heart failure. They recently started with hospice services--it was what one sister & I proposed. They live about 2 hrs. from me but I make it down a few X/wk. A paragraph of hx--at 62 had lumpectomy & radiation, at 73 had ICU/on vent X 1 wk, more than 1000cc pleural effusion drained & she did great--discharged to home & resumed usual ADLs, but it was lung mets--had lite chemo and remained active & healthy enough. At 80 had pleural & pericardial centesis and after 3 weeks in hosp, rebounded to better than her old baseline. 2 times now we have thought she was not going to survive, but she is like the cat with 9 lives. This time, a tumor shows up in upper neck/chest in November, on CT scan, when she developed dysphagia & voice cord paralysis. Since November she is only able to take fluids and carefully so as not to choke. My sibs & I started dealing with anticipatory grieving, but she is not ready to give up. She had radiation and then as many chemos as she could manage when her CBC permitted. She is a very plucky woman. We asked for a hospice referral a few wks. ago when she was in hospital & had pleural fluid drained; started continuous O2 via nasal prongs. Now she's home on O2, pretty much maintaining her weight, wants to eat her 1-1/2 meals a day she can manage. I have cared for dying patients in acute care settings but with no hospice experience I am puzzled because she is not cachectic, apathetic or wanting to sleep all the time. She is not obtunded, listens to NPR and watches TV all day and knows more about current events than I do. She isn't doing housework any more but it's due to dyspnea. It may be that she has more time left than we thought. She wants to maintain a hopeful attitude & talk about dying upsets her. My Dad is taking one day at a time. But he is puzzled because the hospice visitors keep asking her what she is doing about her pain--she has never had a pain issue. She IS having dyspnea at rest and when I saw her 2 days ago her resp rate was 32. All she is on is Lasix. I was uneasy but I went home & tried not to worry becz the hospice nurse was to visit the next day. Today I talked to my Dad--85 years old but still teaches science in secondary school as a sub teacher--both my parents are very sharp and very independent. He is having a hard time understanding why they seem so concerned about pain, and not at all concerned with her struggling to breathe. Possibly her heart failure meds need adjusting. Because she had some PND last night, she was very tired today. I thought her cardiologist should see her, but she was too tired out today for Dad to consider taking her anywhere. Questions: 1--Is there anything like a nursing care plan to cover symptom relief? 2--Is this some sort of euthanasia, to ignore dyspnea? (the nurse who visited listened to her heart, Dad said, and then spent the rest of the visit chatting and talking about herself. They learned she has a son going to camp and she is a single mother. I don't think they especially enjoyed this visit. This conversation with a woman who can barely talk in a whisper and for no more than a few sentences at a time(her voice will never come back for however long she has to live). 3--I called the nurse coordinator to ask her if the pleural effusion were to develop to a significant extent & Mom was still status quo, if it would be possible for her to have a therapeutic pleural tap. She got very testy with me and said that was an aggressive procedure and hospice was not about aggressive procedures. I guess we are living in two different realities. I don't know if I am making a mistake in thinking this would be a palliative measure. My mom may be much sicker than I am thinking. I know there are few options, but I just don't see where it is merciful or caring to let someone suffocate like that. Of course, she will die of something and I guess it is up to her when she is going to stop fighting, but I picture her refusing a treatment offered. She did refuse a Combivent nebulizer suggested by the pulmonologist, but I would not expect Combivent to be helpful anyway. Can someone from among you please enlighten me as to what the priorities should be here? Do you have any suggestions for me? Thanks so much.