Patient refusing Hospice - page 2
I have been a home care nurse for the past two years, prior to that I worked in the clinic setting. I am not, nor ever have been a hospice nurse. In my area, we come in and help the patient on a... Read More
2Sep 13, '12 by westieluvI don't understand why you were stuck with a bill for the hospice service at all. Medicare has a hospice benefit for all members and I have never heard of a hospice that charges more than what Medicare pays, which is currently around $140 a day, unless it has changed recently. Sometimes there is a problem where a patient is in a nursing home and Medicare will pay either their room and board (but only for a short time unless they are there for some type of curative therapy, which hospice appropriate patients rarely are) or pay for the hospice benefit but not both concurrently. That I know of, though, there is no Medicare benefit for assisted living, so your mom's hospice care should have been completely covered. I have only worked for non-profit hospices though, and their policy is to accept whatever Medicare pays and cover the rest with donations. Maybe it is different with for profit hospice companies, but I hope not.
Seriously, even the most basic in-home hospice care would easily exceed $140 a day in this day and age, since hospice covers nursing visits, social work visits, aide visits, chaplain visits, medications, and most supplies. But because of the universal hospice benefit for Medicare members, there is not normally any out of pocket expense, unless the two hospice companies that I have worked for are unique.
I'm sorry to hear that you had a negative hospice experience. Most families don't have to pay out of pocket and are glad that they got hospice involved when they did and have a positive experience with it, but I know that cases like yours do happen, and it's too bad.
7Sep 13, '12 by OldPhatMC, ADN, RNQuote from needshaldolneedshaldol has said a lot that, as a hospice RN of several years experience, I think needs to be clarified for the readers:Tewdles I disagree. Yes I do agree that Hospice has great teaching, etc. But there are families that are devoted and with help from home health nurse, MD's, and others, it can be done fine without Hospice.
I had to fire hospice twice on both my parents which I do not want to get into at this point. I did get them involved 3 years later (yes 3 when they told me mom was dying). Yes they were kind. But mom was in a very expensive assisted living with extra help and I was told by hospice that they would come in to bathe her also. I told them that the bathing was already factored into the assisted living and they said they preferred to do it. Well, when mom died.........I received a detailed bill from medicare and guess what? Hospice billed $140 each time they bathed my mom. When a RN came in to see her (there were RN's at assisted living doing a great job but they did not want them involved) medicare was charged over $250. So medicare was billed over 14K. Yes Hospice is good but........it is a huge business. My mom did not need a lot of what they provided and that I paid for and then they went and made money off my mom. Not a pleasant reminder. I had no clue.
The medicare billing: Medicare gets billed at a standard rate. They pay at a much smaller standard rate. Currently a patient on routine care is paid at $168 dollars a day. That is all nursing, all assistance care, continence supplies, medications related to the hospice diagnosis, durable medical equipment, and of course the hospice medical director, social worker, and spiritual care visits.
Assisted living: Yes some of this may seem to duplicate the care provided by an assisted living facility, but it's a rare ALF that has an RN on more than one shift. I will also state that NONE of the Assisted Living Facilities I've ever worked with were truly capable at end of life care. This is a bold statement, but when you consider that in almost every state a medication technician cannot assess a patient, cannot give a narcotic, nor can they even change a complex dressing, then it makes a lot of sense. Also, it does take experience, training, and resources to be effective at end of life care. In that most assisted living and even skilled facilities have no specific mission to assist in a dignified, peaceful death -- in fact, state laws may limiit what they can do for dying patients, and force the facility to treat the dying patient as a failure for paperwork purposes -- it becomes the hospice team's job to educate the staff and to make sure that the appropriate medications and assessments are done. I have found that I can build a strong, caring partnership with a facility team and the patient's care is excellent. But I know that if I wasn't their, the patient would get get lesser symptom management. I'm sure I'd see actively dying patients force fed and aspirating.
Hospice educated physicians: Most facility attending physicians won't cough up oxycodone tablet orders. They're afraid of the DEA. A patient may need flexible dosing schedules of morphine suspension, or a PCA pump, or medication for terminal agitation. The physician needs to understand that the dying patient metabolizes differently. Sometimes a narcotic is the wrong drug to use. Cancer patients do well with dexamethasone. A hospice physician will use steroid therapy where a non-hospice physician may pull back. Not all doctors are equally well trained in end of life care and I can say that I"m proud to know each and every hospice MD I've ever met.
What everyone needs to know: hospice is not a trip to the vet. We neither speed the end of life nor hold it back. Sometimes hospice care is so effective that the patient can remain on service for years. We don't go "oh hell, your six months are up, off you go!"
If a patient ceases to decline, we can discharge them back to regular Medicare. All patients have the right to revoke the election of hospice care. Bluntly, if they find a treatment they'd like to try then I encourage them to revoke, but thoughtfully.
People don't die they way we see on television. The natural death process takes a few days to a few weeks. There are documented waypoints that mark patient transitions and they certainly help in anticipating death. But the exact death of a patient? Never predictable. Morphine sometimes will extend life by slowing the rate of energy consumption, but its the natural shift of the body metabolism as kidneys and liver fail that causes the patient to shut down.
I haven't gotten into the benefits of having social work and spiritual care available. But it's important that the entire family get appropriate care, good preparation, and ongoing support. Seeing a five year old boy hug his daddy that last time, or fighting siblings set aside their issues to give mom a peaceful last week, well.. it keeps me doing this.
Granted, it may be possible to die well without hospice, but everyone should have the opportunity. We're good at removing surprises. We're great at providing comfort.
Thanks for considering my viewpoint.
TL;DR your loss if you didn't read this, not mine.
0Sep 13, '12 by needshaldolOught to have been more clear sorry. I was not billed anything. I just for some reason got the bill that was sent to Medicare so I saw what they were billed. What I find is that there was no reason to come in to bathe my mom as she was bathed every morning by CNA's. This was a very high class expensive assisted living. It was like being on a cruise ship! So hospice bathed her and charged medicare when it was not necessary at all. I am not dogging Hospice; I am clearly stating that it is not always for everyone. My mom needed it (not the expensive bathing as I already paid for that) as I could not be with her 100%. If she had been at my home then I would not have needed hospice at all as I truly believe family, if able, can take care of certain type patients.Last edit by needshaldol on Sep 13, '12 : Reason: missed
0Sep 13, '12 by modgoth1, BSNMy grandmother spent her last year living at my mother's home and received hospice care. My grandmother suffered from end stage dementia, among other things, and the hospice nurse was fabulous. If my grandmother had been in her right mind she would have certainly refused hospice care. I understand that the patient is refusing hospice care and that is within his rights. You can at least educate the wife on end of life care. Perhaps you can provide her with informational brochures and/or reliable websites that she can read and investigate further.
2Sep 14, '12 by tewdlesQuote from needshaldolyou are misunderstanding how hospice bills and is paid.Ought to have been more clear sorry. I was not billed anything. I just for some reason got the bill that was sent to Medicare so I saw what they were billed. What I find is that there was no reason to come in to bathe my mom as she was bathed every morning by CNA's. This was a very high class expensive assisted living. It was like being on a cruise ship! So hospice bathed her and charged medicare when it was not necessary at all. I am not dogging Hospice; I am clearly stating that it is not always for everyone. My mom needed it (not the expensive bathing as I already paid for that) as I could not be with her 100%. If she had been at my home then I would not have needed hospice at all as I truly believe family, if able, can take care of certain type patients.
Hospice is paid a flat rate daily...a per diem benefit...regardless of who visits or how long they stay. If the aide visits 5 times per week the reimbursement is the same as if there is no aide visits.
Hospice likes to have our aides bath at least once a week to provide the hospice team with a skin and functional assessment. It is not always easy to get good information from the cna staff in those facilities.
You feel that you did not require the oversight of a professional expressly trained in palliation of symptoms and family support at end of life...fine. The reality is that MOST people do need that and it DOES improve quality of life and it DOES reduce the potential for agressive treatment or hospitalization when the patient is actively dying.
I am glad that all went well for you. I pray that you do not discourage people from accepting the assistance of hospice professionals when they are faced with similar challenges.
1Sep 14, '12 by jammycakesRNQuote from modgoth1This was the reason for my original post. I'm not a hospice nurse & don't really know the info she needs for end of life care or about available resources. For me, in the home health field, calling in Hospice IS our "end of life resource" for our patients. I make the referral & viola' I'm done. And an awesome hospice nurse takes over to do a wonderful job.I understand that the patient is refusing hospice care and that is within his rights. You can at least educate the wife on end of life care. Perhaps you can provide her with informational brochures and/or reliable websites that she can read and investigate further.
At the visit today the wife provided a new DNR order. At least I'm not going to have to break his ribs with CPR.
4Sep 18, '12 by tewdlesThere were just 2 deaths in our small community recently...one with cancer and hospice and one with cancer without hospice. The hospice patient was visited by an RN everyday during the 7 days he was on service. The other patient was visited by home health once per the POC.
The hospice patient had emergency comfort meds in the home which allowed quick effective treatment of new and exacerbated symptoms. The family were able to medicate appropriately prior to nurse arrival after receiving instruction over the phone. The patient died peacefully in his bed with family at bedside before the nurse arrived.
The home care patient had no anticipatory drugs in the home. When the patient experienced new and increased symptoms (commonly anticipated like terminal congestion, tachypnea, and restlessness, with pain) there was NO relief of symptoms until after the nurse contacted the MD, received proper orders, conveyed the orders to the pharmacy, picked up and then delivered the meds to the patient home. That process took hours during which time the patient suffered and then died shortly after arrival of the nurse.
Having worked home care myself, I know that it is not easy to get hospice orders from community physicians when the patient is not on hospice. The notion that the needs of a hospice patient and his family can be met by home care or family members alone without assist from hospice professionals is naive. Heck, even hospice can't manage the symptom management of a patient in the home setting sometimes...the failure rate in a non-hospice setting is tremendous. Even when nurses are the family member providing the care.
2Sep 19, '12 by Health&JusticeThis discussion has been interesting for me to read as a new hospice volunteer (non-RN, just a respite volunteer). I haven't done it for that long, and by definition everyone I've seen has accepted hospice care, but I do see a range in how people approach the end of life, from frank "I'm dying soon" to seemingly acting as "normal" as possible.
jammycakesRN: Maybe the DNR order is a sign of the patient being more accepting of death and the need for support (if not for him than for his wife). I hope the situation improves. You're being a good advocate for your patient.
3Sep 19, '12 by CannondaleRNAlmost everyone with a terminal illness will benefit from hospice services. Death cannot be stopped but hospice can improve the quality of life that is left.
2Sep 19, '12 by FranEMTnurse, LPN, EMT-I ProIf this would be of any help, I was in hospice care once, and lived in a hospice house. I did get better and eventually moved to where I live now. I just need a few hours of daily home care now.
2Sep 19, '12 by sheilamarie, CNA, EMT-BQuote from jammycakesRN------Sounds to me like he is having some MAJOR denial issue's with his situations, he is experiencing anger towards his situation which in turn is making his wife miserable. Is it a possibility that she could meet w/a Hospice team outside the home away from her husband? She is in dire need of answer's, a piece of mind, and rest from all of what she is doing. I too feel bad for her as her husband is being stuborn, which I too have seen in my career. Offer the wife phone numbers of resourse's that she herself can get ahold of w/o him knowing. Her husband is being selfish as well. These behaviors are NOT uncommon with people in his position and will "lash out" at those that they love because just maybe they are not ready to die yet. This is just my personal opinion as I have witnessed this behavior, but everyone is different. Sometimes you have to set your position aside in order to do whats best for those that need help....follow what is in your heart for his wife and not was has been taught per se.I don't think I'm trying to force him to be on hospice, it's just that I know his wife is struggling & I do not have the resources (or know what resources) she needs that are available. I know she needs more help than I can provide. I am only there for an hour every other day. That's a lot of hours she is there alone with him. She is doing a great job at caring for him, but she has admitted that she doesn't know what to do when he passes.
I told her she can call me, BUT he doesn't have a DNR order, so I have to consider him a full code & send him to the hospital and possibly even do chest compressions. He probably weighs less than 100 pounds now & the last time I tried to send him to the hospital, he refused. I'm just so out of my zone here, I have no idea what to do. I DID make a hospice referral, that's who he refused. His wife told me that he has already admitted to her that he doesn't have much time left, I just can't figure out why he doesnt want her to have some assistance.
If you haven't already expierenced these type of pt's you will. Just keep in mind in order to help those in "dire straiaghts" its best to "step out of the box" just for that short time. I hope that this helps you jimmycakesRN and that it makes sense to you as well. People are different and have extrememly different ways of dealing/coping with life's situations.
1Sep 19, '12 by smalltownLVNMy suggestion is to visit with a few hospice companies yourself for info and present it to the pt and family so they can make an informed decision. Let them know it's hard to think about going that direction but as a nurse who has the pts well being as top priority, it is something they should explore before out right refusing.
I'm sure every hospice is not the same but the company I am an RN with has the ability to see them as often as needed as well as aides that go to the homes to care for the pt's ADLs as often as needed. The one thing I always tell people is that Hospice doesn't mean we sit and watch you die. We give antibiotics as needed, wound care, medical equipment, and medications for situations that arise during end of life. I have had patients and families who hated the fact that they had to go on hospice but they are always so grateful for the services once they start.
Again, I don't think you should attempt to influence them in any way but let them know they should have all the info before turning it down. This has been the most rewarding job in my life and I hate that more people don't get to experience having a calm, well trained end of life nurse to ensure the journey is as peaceful, comfortable transition. Feel free to message me if I can help in any way. Good luck
0Sep 20, '12 by jammycakesRNOk. Here's an update. He has agreed to have hospice come talk to him tomorrow. I hope he will agree to let them help him. He said he wasn't going to like it if I wasn't going to be his nurse. His wife agreed & I explained that they can't have home care & hospice, but if they want me to, i would continue to visit them on my own time. I don't want them to feel like I'm abandoning them & I don't want him to refuse hospice just so I'll keep coming.
Physically he continues to decline. I'm not familiar with the timeline of these kinds of things, but last week I noticed his teeth look like they're thinning or something, they almost look transparent on the edges. His skin around his eyes look really dark & his temples are very sunk in. Earlier this week he began to not be able to control his bladder. Today he seemed very confused and wasn't able to answer questions correctly.
Do any of you experienced hospice nurses know about how long he has, based on those signs? It breaks my heart to see him go thru this, but I'm going to continue to be there for them.