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In home hospice for husband with prostate cancer concerns

Posted by allie9124 @allie9124, Dec 8, 2024

My husband is nearing the end of his prostate cancer journey. We were recommended two companies that provide in home hospice care. Both companies have low ratings in Medicare.gov. The reviews on line from unhappy clients are frankly terrifying about patients being in unbearable pain until the end with little response from the assigned team. My husband is already in pain and vomiting when he takes any opioids.

We have the initial appointment with one of the companies in two days. Has anyone faced this before and if so, any suggestions on how to best interact with the team to hopefully ensure adequate pain management? If they are not responsive, can you go to the ER?

These past couple of weeks have been very stressful, when I can’t get someone to help him when he is moaning and yelling from the pain.

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windyshores | @windyshores | Dec 8, 2024

The ER is safe from unwanted interventions if he has done the documents that say no resuscitation, no IV fluids or nutrition, no intubation and so on.

But I hope you can find one of the hospices to be better than the reviews. Make sure to find out how to best access a nurse during a pain crisis and how long the average wait is. But hospice provides pain meds and sedatives for you to give him yourself: morphine drops that get absorbed under the tongue at least in part, Ativan and other meds. For pain we added Ativan to the morphine.

One tip from my experience with my mother: make sure he eats something, even a few bites, before any opioids. I kept muffins and saltines around for that purpose.

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1 reply
jehjeh | @jehjeh | Dec 8, 2024

I'm so sorry you are going through this. I second the comments from windyshores.

When my mom had in home hospice we were given a kit with a lot of meds and if something wasn't working we called and spoke with a nurse within minutes. She would give us instructions about using another med or increasing meds. In the end, we were giving mom morphine drops in her mouth pretty frequently and she just slept. I believe there was also something to alleviate nausea and vomiting. Before she got to that point the bath aids and nurses were wonderful but my siblings and I provided all other care. Be sure to ask for more help if you need it. We never asked so I don't know what else might have been available.

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1 reply
allie9124 | @allie9124 | Dec 8, 2024
In reply to @windyshores "The ER is safe from unwanted interventions if he has done the documents that say no..." + (show)
@windyshores

The ER is safe from unwanted interventions if he has done the documents that say no resuscitation, no IV fluids or nutrition, no intubation and so on.

But I hope you can find one of the hospices to be better than the reviews. Make sure to find out how to best access a nurse during a pain crisis and how long the average wait is. But hospice provides pain meds and sedatives for you to give him yourself: morphine drops that get absorbed under the tongue at least in part, Ativan and other meds. For pain we added Ativan to the morphine.

One tip from my experience with my mother: make sure he eats something, even a few bites, before any opioids. I kept muffins and saltines around for that purpose.

Jump to this post

Thank you for your response. He will not eat prior to the pill nor take his anti nausea pill!

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allie9124 | @allie9124 | Dec 8, 2024
In reply to @jehjeh "I'm so sorry you are going through this. I second the comments from windyshores. When my..." + (show)
@jehjeh

I'm so sorry you are going through this. I second the comments from windyshores.

When my mom had in home hospice we were given a kit with a lot of meds and if something wasn't working we called and spoke with a nurse within minutes. She would give us instructions about using another med or increasing meds. In the end, we were giving mom morphine drops in her mouth pretty frequently and she just slept. I believe there was also something to alleviate nausea and vomiting. Before she got to that point the bath aids and nurses were wonderful but my siblings and I provided all other care. Be sure to ask for more help if you need it. We never asked so I don't know what else might have been available.

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Thanks for taking time to respond. I definitely don’t feel so alone now.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Dec 8, 2024

@allie9124 Oh, this is so hard for you. Do you have a support group around?
Ask a straight forward question when you interview. Such as “how would you handle a pain crisis?” Then be honest and tell them that you heard different. You don’t need to say who you heard it from, just say it was a previous hospice patient. Is it possible for you to be present when he gets his meds?
Would it be possible for you to ask to talk with a supervisor?

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1 reply
allie9124 | @allie9124 | Dec 8, 2024
In reply to @becsbuddy "@allie9124 Oh, this is so hard for you. Do you have a support group around? Ask..." + (show)
@becsbuddy

@allie9124 Oh, this is so hard for you. Do you have a support group around?
Ask a straight forward question when you interview. Such as “how would you handle a pain crisis?” Then be honest and tell them that you heard different. You don’t need to say who you heard it from, just say it was a previous hospice patient. Is it possible for you to be present when he gets his meds?
Would it be possible for you to ask to talk with a supervisor?

Jump to this post

I am taking notes for the meeting tomorrow with all these great suggestions.

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allie9124 | @allie9124 | Dec 9, 2024

Had our meeting and my husband doesn’t want hospice yet. They told him he would not be able to take his Regulix (spelling) hormone suppressor, Lipitor or Plavix. This really upset him. The nurse said he has all the pain medication they would give him from his regular doctor and to try again when he is ready. Have emailed his cancer doctor to see if she would talk to him, but nothing back yet.

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