At least once a week we seem to read a post here claiming 'Hospice Killed My Mother'.
Let's never forget that Hospice is a CHOICE. They can be fired at any time. Just like taking a LO into a SNF for rehab; if you don't like the SNF, take your LO out of there, like I did in 2019 for my mother. I picked a dreadful SNF, as it turned out, so I got her OUT of there and into a very nice one in short order. I didn't 'have to' leave her in a dreadful place; I had the choice to take her out of there, same goes for Hospice: If I felt they were 'killing' either of my parents, I would have fired them & taken my parents to the hospital for diagnostic testing/treatment, which is always an option.
If hospice is 'killing your LO', WHY are you leaving them under hospice care???????????
I have an idea. Let's share POSITIVE Hospice experiences for a change! I'll start:
Dad was diagnosed with a growing brain tumor in 2015 that was killing him; he was given 3 months to live and hospice was suggested by the ER doctor. Their services began shortly thereafter at the ALF my folks lived at. I did not really like the first nurse assigned to dad's care; so I called the hospice main admin line and asked that she be replaced with someone else; we had a personality conflict. They said SURE and sent out someone else who was terrific. Dad was kept comfortable for the duration of his EOL experience, not 'overmedicated' or like a 'zombie', and passed away in peace & comfort.
My mother was accepted into hospice care on 12/21 even though the nurse was a bit leeriy if she was 'ready'. She was; I knew it so I was pushing for them to accept her; she was in way worse shape than SHE let on. She had a dramatic overnight decline on 2/15/22 and went into bed, in semi-comatose condition. Hospice called me, administered light doses of Ativan every 4 hours, morphine 5 mg a few days later (added to the Ativan) when she showed discomfort upon being moved, and never increased that dosage. The CNA came to bathe her 3x (bed bath) during the week she was bedbound; the nurse came daily; the chaplain 3x, the social worker 3x, and stayed in touch with me the whole time. The chaplain arranged for a Catholic priest to go see mom and administer Sacraments to her as well. Mom passed peacefully & quietly 7 days later. No pain or suffering, and with a peaceful look on her face. EACH time meds were administered to her, hospice conferred with her PCP BEFORE they were given.
Hospice provides an extra level of care to our elders that is worth its weight in gold. Plus, if WE do not want them medicated for their comfort, we simply say NO, and meds are not administered. It's that simple, in reality. But for me, I was more interested in having my parents comfortable than worrying about 5 mg of morphine doses, frankly.
In both cases, hospice was a Godsend to me and to my parents, and I am thankful for their services. They provided both parents with a hospital bed, specialized wheelchairs, cushions, incontinence supplies, medications, all free of charge & billable to Medicare.
What's YOUR positive hospice experience?
The support for my mom is wonderful. Edema of legs with break thru sores, addressed immediately, along with rashes etc. medications followed….a visit from the nurse weekly with a follow up call to me, CNA twice a week, a minister 3 times a month , a social worker monthly, social worker found a volunteer who comes 3 times a month just to visit. At a time when staffing is hard to find, my moms memory care staff had been working 16 hour shifts… this certainly is a relief that my mom is getting good care…
That same week I had a CNA call and schedule, the Nurse called.
For the next 2 years and 11 months I had the most wonderful Team of loving, caring, Angels help me care for the Love of my Life!
I learned how to change a bed with someone in it. I learned how to change a brief ("diaper") with him in bed. (It almost never looked as good as when the CNA did it but I did it) I learned how to use a Sit-to-Stand then a Hoyer Lift. I learned how to prevent pressure sores (he never had one!) As he declined I learned what to look for and listen for as his body began to give out. The morning he died Hospice was there to support me, the Nurse made the call to the Funeral Home and they waited for the Funeral Home to come.
The care, support, education that I got from the Hospice Team allowed me to SAFELY care for him in our home.
I honestly think that because of the help I got from Hospice he lived longer than he would have without them. And I know because of Hospice I remained sane.
They took excellent care of him and were a very good resource to us as well. Unfortunately, my father graduated out of hospice care because he improved enough to go back to the nursing home. He died shortly after.
I've been an in-home caregiver for a long time and will say that I have never seen a positive experience with hospice care at home.
Some people I'm sure have, myself personally no.
At a minimum accepting hospice requires admitting the obvious: not only (as we all know) does life end, but that end has now become immanent. Perhaps weeks or months, or perhaps a little more or less: but, it’s no longer an abstract “someday we’re all going to die,” but it’s become something that is here, right now.
And, yes, sometimes near-miracles happen: a spontaneous remission of cancer might be one-in-ten-million, but it’s not zero. And yet, even if something like this happens, by the time one is receiving hospice there are usually many underlying conditions, and so even if the most life-threatening one were to recede, for most life expectancy will remain short.
As for hospices, some organizations are better than others, and the quality of the people they employ can vary. I don’t doubt there are at least a few self-appointed “angels of mercy” who feel it is their duty to bring life to an end sooner rather than later. I expect this is very rare, but not totally unheard of. So if you’re not comfortable with someone, ask if you can have someone else.
The quality of hospice organizations can vary as well. A few may simply lack the capacity to provide adequate care (perhaps due to understaffing), but this has become rare. What has changed over the years is the nature of these organizations. When hospice first came to the USA most hospice organizations were tiny non-profits staffed by idealists, mostly people who’d come to realize that overtreatment at the end of life may, in its attempts to extend life, not only cause unnecessary pain or disability but all too often will actually shorten life as well.
It should be understood by all that hospice will not focus on extending life, as it's there to provide care when this is no longer a realistic goal.
Today’s hospice is nonetheless far from what it started out as: instead of small, idealistic organizations today’s hospices are giant bureaucracies, and not only must all of these live within the constraints of Medicare funding, but some do seem to put more effort into marketing and sales than the actual provision of care. If what you’re receiving seems deficient, you should at least bring your expectations in line with reality: a hospice may simply be unable to provide what you want due to these constraints; the world is what it is, and hospices, like the rest of us, must remain within their budgets.
But if you think they should be doing more, the place to start is with your phone: write down what you want to discuss with them, and then do it. And if you still can’t obtain satisfaction after explaining what you expect and their explaining what they can do, only then consider calling a different organization to perhaps see if you can obtain an evaluation.
The provision of end-of-life services day-after-day for years on end is just something very few can handle; people get burned out, or they just can’t take it anymore and they move on. But at a minimum, if you’re not getting what you expect from hospice the place to start will always be your phone: give them a call, talk to them and see what they’re willing and able to do.
Mom’s Hospice nurse and aide come to her MC. They are sweet, compassionate caregivers, who fiercely advocate for the best care possible. They are endlessly patient with her, which in my mind, makes them super-heroes. My mother is not an easy person to care for.
The nurse and the social worker consistently communicate with me. The chaplain also visits with Mom, and calls me after he does. A social worker visits frequently, and when she does, she calls and gives me a report.
I would recommend my hospice company, wholeheartedly. I am in the Central Florida region, in case anyone needs a referral.
I think that person is a pure troll. I honestly think most of us have had good experiences with hospice, and I believe we have posted them here. I think that people can come and ask and we can tell them, but we won't ever change the mind of someone who is just trolling us. I am so grateful your Mom had a good experience as your journey with her was a long one, and she deserved the care and the peace.
You asked, so here goes. My brother had sepsis. He had two years before been diagnosed with Lewy's but was quite with it when he died, and it had been his wish to beat down deaths door before Lewy's could get him. He did. When the sepsis was completely unresponsive to IV antibiotics, when he was nothing but dying slow of explosive (likely C Diff diarrhea) he begged me to get him home to his ALF rooms to die in peace with hospice. I had to fight the hospitalists tooth and nail as did he, but we did it.
It was such a relief that last week to have him in the gentle kind arms of hospice. Such was our experience before that with out Mom. We had literally to FIGHT the MD who said "I can't tell you she has only 6 months". He was right about that. She only had three weeks. Once we beat back the MDs hospice cared for those I loved, and helped them. My mom was in her 90s. My bro 85. I am 80 and I want to tattoo on my forehead "CALL HOSPICE NOW".
I thank goodness for Hospice. As a nurse. As a human being. As an aging elder who is READY.