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?
He began spending more time in bed, was quite weak. Though he had been to the Dr. several times, he couldn't (or wouldn't) tell me what the Dr. had told him except that his previous prostate cancer wasn't the problem. From the treatment he had received, and his history as a heavy social drinker, my guess was sclerosis of the liver ( I was an RN).
He was never admitted to the hospital, but when he finally was too difficult for his wife to care for, someone called Hospice. This was not "in-patient" hospice, but a care-giver and visiting nurse provided in his home.
I had not realized how sick he really was! His poor wife was so grateful for the help. He was dying. She wasn't prepared in any way. The hospice nurse explained the treatment he had received, told her (possibly for the first time) that he was dying. She explained the symptoms she saw of his later impending death, the medication (Morphine, I think, mainly) he was being given and the reason for it, helpful techniques to position him for comfort as well as suggestions of what he might eat or drink.
I didn't know of all this until he finally passed away and I got the phone call. My sister-in-law expressed nothing but gratitude for hospice. She hadn't known of it before (and I didn't realize, myself, how ill he was). She said she felt so helpless and afraid before the hospice people came. She kept saying, "I don't know how I could have made it through this without them!"
I am so sorry to hear that people have the experience that leaves them thinking that hospice killed someone they love. How terrible.
The first thing my mama’s hospice nurse (she’s Catholic) did was show us the little bottle of morphine and declared emphatically that, “You cannot kill your mother with this even if you give her the entire bottle!” She went on to explain the letting go process for the patient and how it’s going to take however long it takes. The morphine is there to help them be comfortable and let go but we weren’t getting lethal doses by any means.
We received a lot of education about how hospice works and found them to be responsive to our every request. We got to know our primary nurse and a few others who would fill in, the chaplain, and the aid who would help with baths very well. My mama thrived under hospice care and we would joke about taking her off but she didn’t want to go to the hospital anymore.
We only gave mama ativan or morphine at night if she struggled with anxiety to sleep. At the very end we did give her morphine frequently since she was dying from respiratory failure and it helped calm her. I gave mama the last does of morphine before she passed and I don’t feel like I killed her.
We have recommended our hospice provider to anyone seeking hospice help and will call them when the time comes for my partner’s parents living with us now.
I have heard stories not as successful as ours so I highly recommend learning as much as possible about what to expect from hospice.
And I totally agree with you on calling the doctor or hospital if you feel it’s important. It’s OK to drop out of hospice to get care then return when necessary. My cousin has COPD and lives in a rural area where hospice is not as efficient as it is here in Atlanta so she and her doctors agreed that her DNR was sufficient in not prolonging her life while she still goes to the hospital for stabilizing care.
Without home hospice we would have had so much more weight on us navigating what to do when. We’re so very grateful they guided us through the entire experience and were there for us all. We even got a year of grief counseling and a special church service for their patients who pass.
We were asked by the hospice company’s physician to participate in a program training medical students at our nearby medical college (a major research university) on end of life care. It was a two pronged approach covering both the patient’s and the family’s perspective. Every week over the course of the entire medical school term, the same medical student came and interviewed us and my dad. She learned about the joys and challenges of life with a family member in hospice. It was the first time the university had tried this program. Apparently, the presentations made by the students for their final grade in the class were so profound that the medical school decided to make this a required class for graduation. This is how much hospice companies care about our loved ones.
I am also encouraged to talk with the nurse about any concerns I have for myself while walking this difficult Alzheimer's road.
While Hospice is usually known only as "end of life" care, it is so much more than that. I will always be grateful for having them as part of our care team.
Karen
glad they helped and gave another opinion besides the Nursing home .
When he arrived at the new facility, he spoke very little and wasn't pleasant to be around. Hospice asked me what his interests were and I told them just playing his guitar. They brought in a local musician who played classic acoustic rock for him. My brother started opening up, talking, smiling and laughing and tapping his hand to the music. Everyone was so surprised and it even brought tears to his hospice nurse's eyes. The next time his daughter brought his guitar so he could play along. Not that it was terrific but he got to be a musician--they had his playlists from the band so they could play familiar songs. They had several "gigs" over the summer and fall. A couple of times hospice took him and his daughter to a pizza pub where the musician had a gig. I bought him an Alexa so he could listen to the Beatles, AC/DC, whatever. Music made him so much more comfortable and happy. We wouldn't have known this if hadn't been for hospice. In February they threw a birthday party for him, with a big cake, cards and a couple of cool rock oriented presents. Plus they got the musicians in to play for him. The party really touched him--I don't think he ever had a birthday party with so much love.
The hospice nurse comes twice a week but more when his condition worsened for a while. She's kept me up to date on him, the drugs she prescribed for him and why, and she's reached out to my niece--particularly when there was bad news. She prescribed a bed that was harder to fall out of since his brain says he can walk but his legs can't. I can contact her with my questions. There's no doubt in my and my niece's mind that hospice and a great facility prolonged his life.
The staff at this nursing facility are wonderful. I can tell they really care about him. He has been in hospice for nine months now--way longer than we ever would have imagined--and I think he was happy at times. In the last month he has taken a serious turn for the worst. But even when he's resting you can tell he's listening and enjoying music from Alexa.
It's sad that people think that hospice is just for the end. If you wait til the end that feeds that perception. Our hospice created so many great memories for us with my brother and that's what hospice is about today--making the best of the time left to live.
My husband is in hospice and it’s been a wonderful experience. It’s another layer of support I need. I recommend asking friends, neighbors, or on here for a good agency. Don’t rely solely on online reviews.
Lastly, Medicare pays for everything.
My four adult children came to be with their Grampy. They wanted to help me in caring for Grampy. They told me to go sleep at night and they would take care of him.
One daughter is an occupational therapist and was able to help with medical and care side.
One son brought his keyboard because my dad wanted to hear "Clair de Lune." He spent hours playing classical music outside my dad's bedroom.
One son would pray the rosary to calm my dad in the middle of the night. Sometimes he would pray 2 rosaries to calm my dad.
One daughter would stay with my dad to keep an eye on him and make sure he was safe.
They were team Grampy. They were there for dad's mind, body and soul. I couldn't have done it without their help.
I called in to visit him on a Sunday afternoon in September. 2021. When I arrived, they wanted to put him in the hospital. He was in bed, trying to communicate, was agitated and upset, but unable to say why. I calmed him and said he wasn't going anywhere. I asked the nurse that if they thought he should go to the hospital, perhaps they should call hospice who would take care of his medical needs that Sunrise could not, but the aides would take better care of him because of the shortage of nurses. I thought that hospice would be medically needed for a few days while he recovered.
Monday morning, the doctor approved hospice. That afternoon, the hospice nurse was there to examine him. After the exam, she told me and one of my sons that my husband was in the last stages of life. We were shocked. His body was shutting down. By that evening there was a hospital bed, oxygen and what ever else he needed to make him as comfortable as possible.
Tuesday morning there was a team of hospice people administering to my husband, me and my son. Nurses, Minister, Social worker, and team coordinator from Somerset Co., NJ, were wonderful, caring and compassionate.
My husband died, Thursday morning.
During these past 5 months and as recent as one day this week, I would get calls from one or another of the team, mostly the minister, checking up on me and asking if there is anything I need or what they can do for me. She suggested people who can help make phone calls or run errands.
Since the death was totally unexpected, and quick, the team has been exemplary.
They have been an invaluable source of kindness and reassurance for her while she is going through this. They don't just treat the patient, they also make sure the spouse/family is doing ok.
Now my father is on Hosparus care at home. He has congestive heart failure and has been in their care for a year. Nurses, Doctors, Volunteers, Chaplain. He has lots of activity. I dont worry about him as much since I live 3 hours away. So thankful for all these heroes!
Hospice also supported me as a caregiver. I had a private counseling session during the time I was being a caregiver and again after it was all over, both of which were helpful.
I hope the positive postings will continue for awhile, just to shine a bright light against the predictable, trolling, negativity of those who think it's clever to do so here.
Considering that hospice is still an option, which means that it works for a lot of people. If it is as "evil" as described, it would not still be here. Of course nothing is perfect, non of us are, there can be problems with anything in life, yet-for me, hospice was great.
hospice absolutely does not kill anyone. They focus on the quality of life, not the quality of life, but they also do not hasten anyone’s death. I fired the one hospice organization that I started with for my dad, because I had the audacity to ask if they had support services for the family. The social worker told me “This is not about you,” and that was my final straw with them. (They also did not return calls promptly.)
otherwise, my experiences with the second hospice company I hired for dad and the one I hired last year for my mom were 100% positive experiences. I am full of admiration for anyone -- especially the nurses -- who works for hospice, because it takes a lot of emotional fortitude to do that job day in and day out and continue to be upbeat, cheerful, and always supportive to both patient and family. They're truly angels on earth.
We enrolled dad in Hospice-at-Home during COVID (ugh); there were staff/volunteer shortages and some program cuts, but that did not affect the quality of care, frequency of visits, or the compassion that dad received. I was dad's 24/7 caregiver & healthcare advocate for 4 1/2 years. Hospice provided me with the resources, education, and support I needed to make dad's end-of-life transition easier. Dad had physician oversight, weekly RN visits, monthly social worker, daily CNA (bathing & dressing), and a chaplain (which gave Dad comfort). I relied on the 24/7 nurse 'hotline' when needed and those consultations were a godsend. Respite care was available if I needed a break. Volunteers called to check on dad and the family. Medicare picked up the cost of medical equipment, a hospital bed, wound care, personal care items, medication.
Sadly, just 4 weeks after dad passed away, my mom required her own urgent admission. She was in Hospice-at-Home care for just 3 days. The Hospice team performed at the top of their game to get her situated quickly, bring medical equipment, and assign the team for at-home visits. I'm grateful that we were assigned the same team who cared for my father. I could depend on them to provide the best care and guidance - every step of the way.
A one point she was breifly in hospice, but managed to get well enough to opt out. Which, apparantly is not all that uncommon. That initial version of hospice was mostly the nurse visiting her more often, a hospice nurse and not much else. So, she leaves hospice. Then is not qualified for more chemo, due to the blood work results, the cancer is winning. Ok...after more blood work, evaulations, discussions with her care team, it's time again for hospice. We wanted Mom to be at home. Hospice now takes over, only hospice nurses come over, pain management is discussed, end of life changes explained to us, pallititive care, too. Every single person involved was excellent, kind, compassionate, hard working, and a credit to their profession. I did not feel left out of the hospice caregiving loop, had phone numbers to call for help, really liked every single person who ever showed up too. My Mother wanted to die at home, it was a real comfort for her there. Hospice made that happen perfectly. Granting my mother the solace of her choice of where she would want to die.
My mother's decline lasted about 6 weeks, the last week or so she slept most of the time. She always was kept neat and clean by the hospice staff, she never seemed to be in any distress. Sometimes when she was awake, she would be talking to other people (invisible to me) in the room, or smiling. She was on a morphine patch, with injectable option (in my fridge) if the pain became too much. Never needed it.
As the described symptoms of death nearing became apparant, I'd keep checking on her, generally every two hours or so. She passed inbetween that two hour check-quietly, and as she wanted to.
Hospice workers are my heroes, I don't know how they do it, but Mom's care team was amazing. All of this was done through Fox Chase Cancer Center.
Dad was kept comfortable and out of pain. That's all he wanted. It was, for me, anyway, a truly spiritual experience, to watch him slowly transition from this world to the next. My little sister struggled as she was not on great terms with daddy when he was dying and he wasn't aware enough of things to have carried on a real conversation.
I find that people who are generally calm and accepting of the inevitable do better with a LO in Hospice. People who are anxious and scared may struggle with what Hospice provides.
For our family? It was a blessing and made dad's passing very sweet and peaceful. For that, I am eternally grateful.