Patient refusing Hospice

Specialties Hospice

Published

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.

JammycakesRN

Specializes in Psychiatry, geriatrics, hospice.

My 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

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Ok. 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.

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Specializes in PICU, NICU, L&D, Public Health, Hospice.

It is hard to guess a timeline based upon the info you have given, but it sounds as if he is clearly declining toward death.

I would caution you about visiting on your own time.

Many might consider that activity a boundary violation that puts both you and the patient at risk.

I do understand the desire to demonstrate that you are not abandoning them, but it seems you have done everything to empower this patient and family...it might be best for you, and for pt outcomes, if you step compassionately away.

This is not a criticsm, mind you, just a suggestion.

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I'm not really a fan of sticking around per se. But, seriously, if I tell him I won't ever see him again once he chooses hospice...he will NOT choose hospice. I discussed it with my director & she was okay with it. I don't think there will be much time for too many visits.

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This situation reminds me of a conversation I had with a patient's wife just yesterday. The patient and his wife refused the Physician's recommendation for Hospice and opted to have home health involved. Medically, this patient is very appropriate for hospice. I did not mention hospice to the wife but she shared with me that she and the patient refused hospice as it was against their moral beliefs. She stated that while she understood hospice's purpose, the choice of giving up of "the good fight" was like choosing to end your life. Now although as a Nursing Professional, I may not share this belief I am also a patient advocate and so I chose to support the patient and his family in the best manner I know how.

I see that they are willing to have a hospice and hopefully things will work out for the best. It sounds like you have done the right thing by clearing the visits with the director as well.

In review of the situation, I wonder if you have a MSW to consult regarding end of life/hospice info? Or since you are uncomfortable with end of life, perhaps there are some Nursing continuing ed in your area?

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Specializes in Hospice, home health, LTC.

You can't do anything. You have explained to them their option for hospice and they refused. They have the right to make decisions that none of us agree with but themselves. Love them, treat the patient as the caring home health nurse you are, and walk away. It's sad, it's nerve-wracking, but people have the right to make choices we don't like. I feel your pain - the exact same thing happened to me and the patient died in the hospital, with no family to support him, tubes everywhere, on Christmas Eve. It could have ended so differently. I left home health (loved it, though) and am now in hospice (love it more). Best of luck to you....don't let this stuff get to you.

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Specializes in PICU, NICU, L&D, Public Health, Hospice.
This situation reminds me of a conversation I had with a patient's wife just yesterday. The patient and his wife refused the Physician's recommendation for Hospice and opted to have home health involved. Medically, this patient is very appropriate for hospice. I did not mention hospice to the wife but she shared with me that she and the patient refused hospice as it was against their moral beliefs. She stated that while she understood hospice's purpose, the choice of giving up of "the good fight" was like choosing to end your life. Now although as a Nursing Professional, I may not share this belief I am also a patient advocate and so I chose to support the patient and his family in the best manner I know how.

I see that they are willing to have a hospice and hopefully things will work out for the best. It sounds like you have done the right thing by clearing the visits with the director as well.

In review of the situation, I wonder if you have a MSW to consult regarding end of life/hospice info? Or since you are uncomfortable with end of life, perhaps there are some Nursing continuing ed in your area?

I often ask why they believe that choosing hospice is giving up hope or "the good fight". Generally, these people are not given "better" options for care when they have a terminal diagnosis, they often have been told that there is "nothing more we can do for you" in the curative model of care. Sometimes just verbalizing their thoughts, fears, feelings about this topic will help them to discover their goals going forward.

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He passed tonight. Maybe he can finally get some rest.

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The wife was asking you for information, because she was scared and unsure and had developed a trusting relationship with you, but you just kept blowing her off by trying to send her to someone else to answer her questions because you were not sure what to tell her. You could have talked with your local hospice people and gotten yourself informed, then gone back and given her the information she was asking you for.

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Yeah, that's not even close to being the case. I went to every supervisor I had AND consulted with our sister hospice company. My supervisors told me that we could not provide the "hospice care" he required BECAUSE we have a sister hospice company & they needed to be referred to hospice. I was in no way " blowing her off".

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Specializes in Hospice, LTC, Rehab, Home Health.

Is your "sister hospice company" the only hospice provider in your area? and is the reason they are saying hospice care can not be provided is because it would be a conflict of interest in some way since the two companies are owned by the same "parent" company? Are they afraid of breaking some medicare reg or similiar law/reg? I guess I am not understanding the problem?

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Specializes in Hospice.

I'm sorry to hear your patient passed. But I hope that, like you said, he (and his wife) will be able to get some peace now. And I hope you will get some rest too! You put a lot of effort into the situation. As a nursing student, I can't really offer any advice. But it looks like you went above and beyond trying to care for this patient.

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