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My uncle is dying and is on Medicaid and hospice care. I just realized that he is now in the "active dying phase." It all happened rather quickly and very unexpectedly.


His daughter refused oxygen and refused having nurses stay there to adjust meds and monitor pain. They seemed to accept that and not push. That's the opposite experience from what I had with my other uncle. Hospice was very insistent (but not overly pushy) about having nurses stay around the clock. We allowed this for two days and two nights until his pain and vocalizations were stabilized. I'm not sure what the point of oxygen is.


Could someone please provide info on this matter. We both want to make sure uncle is pain free, but I don't think she is equipped to handle this. For the record, she doesn't mind me butting in like this, she appreciates my concern.

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I was told on the 6th of this month that my husband was "actively dying" and would be dead in 3 days. I was told by his Hospice nurse that he would now qualify for continuous care, but their agency wasn't offering that right now. When I called the supervisor to find out why it wasn't being offered, I was told it was because they(Hospice) were too short handed, and couldn't staff the required hours.
Upon further research on my part, I learned that it is a Medicare mandate that all Hospice agencies offer continuous care to their patients when needed. And if they are short handed, they must subcontract out to a Home Health Agency to be able to fulfill their duties.
It is now the 27th of this month and my husband is still hanging on. Hasn't eaten in 23 days and has stopped taking sips of his drink 4 days ago. He layed in excruciating pain from the 5th of Aug. through the 24th, which was horrific to witness, and his Hospice nurses only came out once a day for a half hour to change his pain pump, leaving me to tend to him for the rest of the 23 1/2 hours. Sadly I learned about continuous care too late into the process for my husband and when I emailed the "quality services" person at my husbands Hospice Agency this past Sunday, sharing my concerns, she responded, saying she would look into it and get back with me. Well, she has yet to get back to me, but she did have a nurse here the 24th first thing in the morning and again for the over night hours. However, they brought no more pain relief for my husband,(so I denied their services for future days, as I thought that was the reason they were coming was to relieve his pain) and I was later told by the supervisor that the only way for my husband to receive more heavy drugs was for me to have him taken to their facility, where he could be monitored by the Dr's and nurses there, That however is not an option for us, as my husband always said that he wanted to die at home, so I am honoring his wishes. Thankfully the excruciating pain stopped on the 25th, and now he just has a lot of congestion in his throat, even with the patch and drops hospice has given me to use for him. I'm grateful the pain has stopped as I just want my husband to die in peace.

And just FYI, the types of symptoms that might require continuous care at home (according to the Hospice Patients Alliance) include, severe pain, unrelenting nausea and vomiting, severe bowel impaction/intestinal blockage, acute "terminal restlessness", psychosis, or agitation, bleeding, acute respiratory distress, and many other symptoms, so don't be afraid to insist your loved one gets the services he deserves, if he needs them. And sometimes you have to go further up the chain of command to get things done the way they are supposed to be. And like it says in the article from the Hospice Patient Alliance, "remember, it's the squeaky wheel that gets the grease."
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Kate - I am referencing the information provided by the vast majority who have posted here on this forum over the years I been a member, in fact although I have read much praise for Hospice in general I can't remember a single person having mentioned the level of support you received with your uncle. I've got to say it would be wonderful if that truly is the way it works for the majority.
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Please let the family there, the POA in the family, the next of kin work with hospice and medical to make the best decisions they can. At the end it is truly difficult to have continual input from too many quarters coming in. Hospice will decide upon pain medications, working with the POA (I am assuming that is the daughter) to keep the patient as comfortable as they can. The pain medication need not be administered by hospice. Generally, if not in-hospice care (where they might be an MS drip), the medication is delivered sublingual, to a degree that there is comfort, not much air comfort if possible, and no anxiety or restlessness to the degree possible. If I am not mistaken, you have concerns about this particular hospice for some reasons you explained. But they are there and you are nearing the end. It is important for family to stick together, to ask that the patient be as comfortable as possible. I am so sorry for the grief of all, but it sounds like a loving family. O2 is given because to the degree possible comfort measures for breathing are a priority.
There is a tendency to try to address the small things (02 at this point is a "small thing" in that it is unlikely to help a whole lot but definitely cannot hurt) in order not to have to think about the BIG elephant in the room which is that you all are now losing a beloved elder. Let the decisions in the hands as much as you are able. I would say that the time to scream and yell alla Shirley McLaine in that movie where she was losing her daughter, is when you see pain or struggle. Best advice I can give anyone at the bedside and anyone rendering care is "Please don't let him struggle or be in pain. Please let him be at peace insofar as you are able". They aren't ALWAYS able. Dying involves air hunger, inability to handle secretions, uncomfortable noises and groaning and picking at covers.
When the end is near it will be visible in shallow respirations, in cheyne-stokes breathing which is breathing, full stop for some seconds, breathing again. In changes to the extremities. The feet and lower legs get cool, change color to bluish.
I am so sorry for the pain and grief.
I would kill to have hospice nurses round the clock with my elder. Most of the times this is covered by medicare when ordered in the end days, but hospice can be consulted about that.
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Are you talking about now with COVID-19 or just in general (before COVID)?

My other uncle received continuous care from LPNs for two days before he was stable enough for me to take over the last three days. There was a day nurse and night nurse and each worked a 12 hr shift. This was last December. I had the same day nurse both days, but different night nurses.

They had to adjust his morphine and lorazepam doses numerous times because he was distressed and in pain (what they call "crisis state'). He was fighting to stay alive though, he had told me he wasn't ready to die.

I guess we were lucky then. I felt so much better once the day nurse explained what exactly her job was. I wish more nurses were like her. She pointed out the signs of pain that I had no clue about. She explained what I should expect and everything. Makes me want to look her up on Facebook and thank her.
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Everything I've read here on the forum about Hospice implies that while nurses might be just a phone call away it is very rare that there would be any offer of 24/7 in home support, people are given tools (medications) and instructions but essentially left pretty much on their own.
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cher2830 Aug 28, 2020
My mom has had Hospice care since June when she came to live with us. But on Aug 11,2020 it was decided she was ready for continuous care, she just passed away Aug. 27th all that time we have had the best most caring medical staff day and night caring for her and taking the pressure off from us by giving her a quality of care we couldn't. Mom got to leave on her terms and without pain and we could still be involved as much as we wanted . They are a great service.
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Hospice can instruct a family member how to administer medication to ensure the patient is not in pain.
Some Hospice will have a nurse stay if the patient is in distress, in pain. They also have volunteers that will sit Vigil for someone that might otherwise be alone, or if there is just one other family member or caregiver. BUT due to COVID some Hospice may find it more difficult to get a trained volunteer that will sit with someone. And due to COVID many Hospice are short staffed and the Nurses particularly are spread a bit thin with increasing caseloads.
Administering Morphine or other pain medication is just like administering any other medication. Once a person is taught to properly dose the medication Morphine is typically liquid given under the tongue or along the cheek just inside the mouth. And unless there is a gross miscalculation of the medication it is difficult to overdose someone to the point of killing them (with the amount left by Hospice)
I do not understand the reason she would refuse oxygen. Is it possible she is a smoker or your uncle is a smoker. You can not smoke when oxygen is in use.
And if his oxygen levels are normal then oxygen is not going to really do much.
The goal is to keep him comfortable.
If his daughter can not handle this she could ask to have him brought to the Hospice In Patient Unit. They can monitor him, manage pain and administer medications. This is part of Hospice and it is offered to manage pain, manage symptoms and provide some relief for family. (Hospice can provide Respite as part of what Medicare pays for)
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KateH2 Aug 26, 2020
Thanks for responding.

According to the daughter, when she asked about it, the hospice nurse said the oxygen would make no difference in anything. That's why she refused - because it would make no difference. She called with an update right after I posted the question.

I temporarily forgot about COVID, so that part makes sense. My other uncle was vocalizing a lot when they wanted to do continuous care, so that may be the reason why they were so insistent with us. He was having obvious distress and pain requiring both morphine and lorazepam. This uncle now is just mumbling (or making mouth sounds - bbbBBbb) so I don't know what that is. Although I believe I've heard him make those sounds in the past, before all this started.
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