Patient refusing Hospice - page 2

by jammycakesRN

8,802 Views | 36 Comments

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 temporary basis until they are... Read More


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    Talk to the patients medical provider and report your assessment and concerns. Request a referral for hospice information visit and possibly for a hospice consult if that is available in your area.

    The hospice team can provide valuable information for the patient and family so that they can make an informed decision. Ultimately, it is their choice.

    Sure, they can do it alone...lots of people do...that does not mean that hospice couldn't be helpful if their barriers can be overcome. My experience informs me that most people refuse because of an information deficit or a comprehension deficit. No other health care system can provide the type of support to families of dying patients than hospice can...period.

    It is difficult for lay person/family members can properly advocate for the symptom management of their loved one in the absence of hospice. Sure they can get meds, if they have a clue as to what meds are available, what symptoms they are seeing, what might be possible, how to give the meds, what route to use when their loved one can't swallow, what the side effects and interactions are with other meds, what meds it is safe and appropriate to hold/DC, etc, etc, etc. Additionally, families can choose to not have assistance with bathing or bed changes. They may choose to not have access to medical equipment in the homed. They may choose to purchase their own briefs and pads and continence supplies. They may choose to care for skin breakdown and ulcers with bandaids and OTC creams.

    They may choose all of that, and they may get by ok with a peaceful death of their loved one in the home. More typically, however, is that fear or lack of information causes people to reject hospice and then their loved one ends up in and out of the ED and has an enormous potential for hospitalization at time of death.

    "Hospice is not the end-all be-all of end of life care" Really? Hospice is the ONLY health specialty addressing death specifically. Hospice is the ONLY medical specialty that provides bereavement care for the survivors after a patient death for 13 months.
    MarcyRN, tnmarie, leslie :-D, and 5 others like this.
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    Jammycakes you did what you could. You could ask your supervisor to step in and then you have to let it go. Eventually an event will occur which will put other changes into place.
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    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.
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    I 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.
    CannondaleRN and tewdles like this.
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    Quote from needshaldol
    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.
    needshaldol has said a lot that, as a hospice RN of several years experience, I think needs to be clarified for the readers:

    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.
    MarcyRN, tnmarie, jeannepaul, and 4 others like this.
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    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.
    Last edit by needshaldol on Sep 13, '12 : Reason: missed
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    My 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.
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    Quote from needshaldol
    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.
    you are misunderstanding how hospice bills and is paid.
    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.
    Eva64 and Sun0408 like this.
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    Quote from modgoth1
    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.
    This 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.

    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.
    tewdles likes this.
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    There 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.
    jeannepaul, OldPhatMC, leslie :-D, and 1 other like this.


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