Patient refusing Hospice

  1. 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 back on their feet. During the certification time for this patient he has steadily had a decline in health. I mentioned hospice to his wife several months ago and she was not receptive at all. He continues to get worse and now is pretty much bed bound. Last week his wife began asking me for details about end of life. I explained to her that this is not my area of expertise & asked again about hospice. She declined. This week she finally said she was ready because she had questions & needed help. When she mentioned it to him, he was adamant that he was NOT going on hospice.

    What do I do? I don't have a clue how to help her with end of life situations. I feel bad for them, but I can't force him to accept hospice. I won't leave them stranded, but I honestly feel I am way out of my comfort zone here.
  2. Visit jammycakesRN profile page

    About jammycakesRN

    Joined: Mar '11; Posts: 25; Likes: 9


  3. by   cayenne06
    Is the family hooked up with a palliative care team?
  4. by   jammycakesRN
    No. Just me! He got so upset that she won't even discuss any other disciplines.
  5. by   akulahawkRN
    A hospice team may have some resources for them... even if the patient doesn't accept it. They're very good at providing for comfort care and other end of life issues. The patient may never accept being on hospice as he may view it as "giving up" on life and he probably doesn't want to do that. They may benefit from the info though, about how to get some of his affairs in order instead of just leaving it all to his wife to figure out after he's gone. It's pre-planning, not giving up.
  6. by   westieluv
    This happens a lot. As long as the patient has his full faculties, he has the right to make all of his own healthcare decisions, including the decision of whether or not accept hospice care. I have seen quite a few people die without the benefit of hospice because they felt like it was signing their own death certificate, and in a lot of cases, there's not a lot that you can do, so don't beat yourself up, you have done what you can do at this point. I do agree with the PP that there may still be resources that they can benefit from without actually signing on to hospice, but a lot of times if the patient gets of whiff of "end of life", whether it be funeral planning, writing a living will, etc. they will refuse or force their spouse or family member to refuse. It goes along with people not fully understanding hospice and being fearful and in denial about their own mortality. I can remember getting a phone call from a patient's family member because their mother/father, etc. was just diagnosed with a terminal disease and the doctor recommended hospice but when a member of our staff would go out to do an informational visit, the patient would flat out refuse, regardless of their diagnosis. Then, within a short period of time, we would see their obituary in the local paper. It's sad, but it happens.
  7. by   Sun0408
    Can you get a hospice consult for the family and pt. He may not except but at least she will have the information needed. Many fear the word hospice alone, many don't understand what it really means and the benefits it brings to the pt and family.
  8. by   needshaldol
    Perhaps this person does not need Hospice? Perhaps some of us think that Hospice is the "only" way to go at the end? Not true for all. If the person is No Code and is comfortable at home with family or other help and cared for what is the point of Hospice? Hospice will give out meds in liquid form for example. One can get that liquid form as a Rx and take care of pain issues if needed or anxiety.
    Not every patient needs Hospice at the end of life.
  9. by   NurseDirtyBird
    Quote from needshaldol
    Perhaps this person does not need Hospice? Perhaps some of us think that Hospice is the "only" way to go at the end? Not true for all. If the person is No Code and is comfortable at home with family or other help and cared for what is the point of Hospice? Hospice will give out meds in liquid form for example. One can get that liquid form as a Rx and take care of pain issues if needed or anxiety.
    Not every patient needs Hospice at the end of life.
    That is an excellent point. Hospice is not the end-all be-all of end of life care. However, it sounds like they could benefit from education with someone with end of life expertise. I agree that a consult with at least their MD about the pt's decline and inevitable end is in order.
  10. by   edmia
    I would make the hospice referral anyway. Often, people are unaware of what hospice is and have preconceived notions about it. Hospice nurses are able to counsel and educate in a way that those outside of the specialty can't. Let the family know that end of life care is outside of your expertise and you'd like them to have better information and hopefully, the right resources for their loved one can be found. As someone else mentioned, they don't need to accept hospice, but there are other resources that may be helpful.

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  11. by   jammycakesRN
    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.
  12. by   tewdles
    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.
  13. by   needshaldol
    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.
  14. by   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 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.