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Jerry's home health nurse practitioner just left. She immediately recognized in Jerry what I have suspected; she recommended palliative care. The nurse practitioner also said that hospice would also be appropriate, because she does not expect Jerry to live longer than another six months.
Jerry knows none of this and neither does his sister or his estranged daughter. Does anyone have experience with palliative care?

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Couldn't this be summarized by saying that palliative care is simply a type of care that seeks to reduce/eliminate pain and provide comfort instead of a cure, and the term itself has nothing to do with whether the patient has a terminal condition or not, or a limited life expectancy? Hospice is a specialized service system that is designed to provide palliative care specifically for patients who are not expected to live more than six months, and hospice care may be provided at home, or in an institutional setting either specifically dedicated to this kind of care or one providing other functions (such as a nursing home that can provide many kinds of care).
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Rabanette Feb 17, 2020
Well done. Thank you for defining the terms. Usually that's the best place to start.
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Mom lived 2 years on hospice, and I used them as a home clinic. I made them do routine labs and reorder her routine medications which was just her insulin and lopressor, and lactulose for bowel movements. She had end stage Alzheimer's though; mom always qualified for hospice due to decline but I really took care of mom big time and she lasted years longer. I fired two hospices, but the last one I liked. I made mom a DNR from the very beginning, but that still means you CAN have them treated. I took mom to the Emergency Room many times for UTIs under hospice. I got mom treated for everything EXCEPT I did not want her resuscitated if she goes down like her heart stops.
LET ME EMPHASIZE IN BOLD LETTERS--DNR STILL MEANS YOU TREAT THE PATIENT. IT DOES NOT MEAN DO NOT TREAT. For some reason people think it means "do nothing let them die" even doctors and nurses.. It means no CPR. That's all it means. So don't let "DNR" scare you. But you have to make sure the doctors and nurses know what DNR means because a lot of them don't. Even under hospice you can STILL TREAT.
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anonymous951699 Feb 17, 2020
Thanks for the emphasis.
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Going by what I've read palliative care follows more or less the same general principles as hospice without the funding, so the services and equipment provided by Hospice would be superior. Given his prognosis why are you hesitant to opt for hospice?
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Vivian711 Feb 13, 2020
I was not given hospice as an option.
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Have the evaluation done for Hospice. If he qualifies for Hospice ..great. You will get a LOT of help and equipment and supplies. If he does not yet qualify for Hospice accept Palliative. You will have help and some limited services compared to Hospice but the staff will be observing for signs of decline that would enable them to change the status to Hospice eligible and then you would get all the help and services that Hospice can provide.
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Judysai422 Feb 17, 2020
Great plan suggested. When they do the eval, get specifics as to how services differ. In AZ, palliative care meant I still had to take my mom to all of her doctors appointments and her PCP was still in charge. With hospice, the Hospice doctor became her PCP and I no longer took her to her cardiologist, pulmonologist, urologist, PCP and even dermatologist. The hospice nurse came one or more times per week, managed her meds, got her access some pain meds for her joint pain that her PCP would not prescribe, took her off some meds. They provided her oxygen, nebulizer and other supplies, including meds, free of cost. They gave her a shower twice a week and were far better at doing so than the AL staff. They also come to her within an hour if she is sick to assess. My mom has dementia and severe aortic stenosis, the latter was what qualified her for hospice. She has been on hospice for about 6 mo. and shows no sign of dying any time soon, but the attention she gets and the support the family gets is very helpful. For me, not dragging her to multiple doctors has been a godsend and reduced the stress on me and my father enormously. Now when she gets sick, we call the hospice nurse instead of rushing to urgent care or the ER.
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It was kind of a continuum for us. Palliative care, as I understood it, was the medical side of prescriptions and medications. Fortunately, my mother made the decision herself to go on palliative care. This meant that she was taken off all her maintenance medications (high blood pressure, statins, blood thinners... whatever). She could receive as much medicine to keep her comfortable that she wanted.

I suppose she could have returned home in palliative care, but her condition deteriorated so rapidly once she went on palliative care, the hospital suggested she come home on hospice. By that time, she was non-verbal and has slipped into a coma-like state. We could have had as much hospice nursing as we wanted, but we had family, so we could really do for her what the hospice nurses did. They came by three times a day to see how we were holding up. I can’t say enough about how the hospital personnel and the hospice personnel treated us during this time. From the time Mom went on palliative to the time she passed away, it was a matter of six days.

So... palliative care is the medical side of keeping your mother comfortable... mom has a catheter, as much oxygen as she wanted, pain killers, any good she would have taken in. She did not have IVs. She could have decided to stop palliative if she wanted anytime and had any medical intervention she chose. But she chose to quietly slip away. Hospice was the part that kept her clean, gave her (and us) the emotional support we needed, let us know if she was in pain, monitored her vitals. But none of that beeping, noisy, clamor of being infused with a bunch of medical interventions that were just going to keep her around but never let her live... if you know what I mean.
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RedVanAnnie Feb 17, 2020
You had some great care if Hospice (or Palliative Care?) came by three times a day! Our Hospice service was a nurse for about 1/2 hour 2 times a week and an aide another 1-2 times a week, if needed. I could have used more help, esp when things got critical, but that was it, The rest was me.
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I have seen so much benefit from calling hospice in.

If Jerry isn't seeking treatment for what ails him then hospice would help you care for him and provide medical equipment for his comfort, like oxygen, hospital bed, bath aides, skin ointments and other things. He will be able to continue any medications that he is on and if he decides that he wants heroic measures then you fire hospice and go to the hospital. You still have choices.

Some people end up getting better because they are getting the rest and care they need. It doesn't necessarily mean a death sentence, but it is intended to help people that have been diagnosed with 6 months or less to live.

I think palliative care and hospice care are the same thing in some areas. Just taking the fear out of the verbiage used I suppose.
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Vivian711 Feb 14, 2020
I do love your name. Thank you for the sound advice.
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It may be that your NP isn’t in a position to recommend Hospice because she can’t do the 6 month assessment herself. She’s pointed you in that direction.
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Vivian711 Feb 13, 2020
I didn't know that! Thanks! I am afraid if hospice is even mentioned, Jerry would balk.
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Palliative care is a step away from hospice care. One would choose it when they no longer want invasive testing and surgical interventions but do not meet the criteria for hospice admission. As cwillie said, hospice service and support is far superior. Hospice can be a tough decision but everyone I’ve spoken with says they wish they had started it sooner. Good luck with whatever direction you take.
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So far as I know, in the international medical community, hospice and palliative care are the same thing. The USA has the 6 month life expectancy requirement for hospice, which seems to be much better funded. Palliative care is the same thing without the time component. For example I have turned down late-years surgery for my back, but I get help from painkillers and occasional sleeping tablets. That’s one type of palliative care, as they help but won’t ‘cure’ me, and I don’t expect to die any time soon. Here end-of-life care is usually called palliative, not hospice, and there is no time limit rule. It’s just words.
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worriedinCali Feb 14, 2020
In the US, it is not a requirement that life expectancy be 6 months.
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I thought home health nurse was palliative care. Palliative care will provide a nurse practitioner to come in and take vitals, check the person for anything, and write it down, once a week or every other week, and report to doctor. They will also provide medical supplies as needed. Basically, you do not have to take patient to doctor, they will come to you. This helps especially if they are wheelchair bound.

Hospice, "end of life", will provide a nurse practitioner, a team of people to come in every week, one to bathe the person once or twice a week, a nurse every week, and a religious person of their faith to come in if you want. Hospice is not only for the patient; they are there for the family, you, the caretaker, too. . They will listen and talk as long as you need.

This also means, that they will evaluate the patient every 30 days or so to see if the patient still needs these services.. They can graduate out of these services.. Mom did 2 times, the last time, she went "home".

Mom was on hospice: aunt is on palliative care.

DOCTOR SHOULD REQUEST HOSPICE. THEY WILL EVALUATE AFTER 30 DAYS.
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anonymous1010889 Feb 14, 2020
That’s interesting. It sounds like there can be considerable differences amongst palliative care programs across the US. Our palliative program required we go to their office for medical/pain monitoring every 2 weeks. We opted for hospice so we could have them come to the house instead. It’s been a good experience so far, one year later.
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