Let's share POSITIVE hospice experiences!

Lea,
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.

My mother qualified for hospice because she her body, despite eating 3 meals a day, and MANY snacks, continues to lose weight. She is listed as “malnourished”. She has stage 6 out of 7 dementia.

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 would prefer to discuss reasonable expectations for hospice.

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.

My father was under hospice care but in the hospital and they were absolutely wonderful.
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.

My dad received excellent care in his home with hospice services. They came regularly plus anytime I called. There was always a kind, knowledgeable voice on the phone when I called with questions. When the needs became intense they offered me a list of non employees, but people they knew and could vouch for who’d done exactly the kind of help we needed. I hired some excellent ladies to help in the final week. Dad had honest conversations with the nurse about what to expect and was well informed about his choice to receive hospice care. The nurse taught me to do meds the proper way for a terminal patient and advised me regularly on what to expect. Dad was peaceful throughout. It was an impossibly hard situation, sad beyond words, but filled with compassionate care and I remain grateful

Hi Lea, I haven’t posted for a while but this resonated with me. My wonderful MIL passed away in a hospice last year and her experience there was of great comfort to the family. She chose to forgo painful treatment that would have prolonged her life only minimally, and instead opted for end of life care in a hospice. Having made this decision and discussed this with her family, including those who felt she was making the wrong decision, she spent just over 2 weeks in the hospice. The staff were very kind and, despite the COVID restrictions, allowed family visits with appropriate precautions being taken. My husband was kept informed of how she was doing when he wasn’t actually with her, and when she died it was peaceful and pain free. I know this might not be the case for everyone, but my father opted to stay at home in his final weeks, and in hindsight I really wish he’d chosen a hospice. His illness was extremely painful for him, and I feel that had he been in a hospice, the pain relief would have been more readily available. In fact, after dad died, I and my husband agreed with each other that if either of us were terminally ill and unable to express our wishes, we both wanted a hospice for our end of life care.

I stopped in at the Hospice facility just to ask what the qualifications were. I talked to a Nurse and from my conversations she said that my husband would qualify.
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.

@Lealonnie1, The Hospice I used for care and the one I Volunteer for has Teams. Some Teams do only Facilities and some do only Homes and in the case of a Hospital In Patient Unit that would be a permanent assigned position. So in BurntCaregivers case there may have been two or even three teams as well. BUT within the Team there can be "good" employees as well as "bad" ones. If there is a problems with someone that you disagree with or do not get along with you can ask for someone else to be assigned so there should not be a problem.

My mom has recently been put on hospice..it scares me that she might be taken off… has had GI bleed / diarrhea that had her hemoglobin critical. It’s stopped … now hemoglobin is good… if anyone has insight about when hospice may not be needed due to the above corrected, please let me know.. my mom is 90 with hallucinations, diabetes, neuropathy, etc… it was the GI need that was the catalyst for hospice..

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…

Our experiences with daddy's hospice were nothing but wonderful and supportive. I played only a 'background' support, giving mom some much needed time off.

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.

My experience with hospice was excellent. I was a caregiver for my mother, with endstage colon cancer for 19 months. My house was built in 1947, end of row home, on the corner. The first level had a direct door right out to the side walk, a nice half bath, finished in old wide plank pine, and as Mom would say "So cozy" and it really was. There was just enough room there for her bed a small couch and her recliner and a nice book case. The side door was a god send, her friends, home care, social worker could pop in and out and not disturb the rest of the house. There were stairs from the kitchen to go down, so if I needed to check up on what was going on, could easily do so. I've described this in detail, to explain how well this worked out when hospice was the next option.
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.

Hospice was an excellent fit for my dad who benefited from care for 1 1/2 years. My personal experience was so profoundly positive that I am making a career change to join Hospice as a nurse.

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.

Hospice helped me when I knew it would be impossible to care for both my father and mother at home. My father was admitted to in-patient hospice and passed away two months later. He did have bed sores at the end. They were awful, but he had been refusing food and his muscles had contracted. They moved him, but there is only so much that can be done when the patient is immobile and not eating (we refused a feeding tube). He was clean at all times, he was even shaved, his hair was combed. The bed ALWAYS had clean linens. He was not in pain that I could perceive. There is no way I could have helped him transition. It was beyond my abilities. It was a drawn-out death for him, but it afforded me the ability to look after my mom and it afforded him a relatively painfree passing. Thank you to the caregivers of hospice.

Anyone who thinks hospice is killing their loved one clearly doesn’t understand what hospice is about. I’ve dealt with three different hospice companies, and even though I ended up firing one, even they didn’t end their first day without being absolutely sure I understood what hospice was and how it worked. I don’t believe any hospice organization doesn’t talk to the family and explain that.

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.

I was very naive about my grandmother's decline at 103yo. It's obvious to me now that hospice was the right choice for her, and should have been her care plan for months before it was implemented. I'm thankful for the kind and knowledgeable home hospice nurses, and for the medication that kept my grandmother more comfortable in her last weeks. Hospice care gave her more dignity in her last month, less pain and distress, and allowed me to have some peaceful moments with her as she was pre-active and then actively dying. No one should suffer unnecessarily once their body has determined it's the end stages. I would hope I get similar compassion when it's my time.

Thank you so much for posting this. Fed up with the negative hospice posts. A lot of people need to know about all the wonderful help, caring, expertise hospice affords to their patients and families.
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 was amazing for my mom. Nurse, aide, chaplain, social worker, all worked hard to make sure my mom was comfortable. They even sent a 3 woman choir to sing to her during her final days. I wish I'd gotten her out of SNF and on hospice way before I did. I just couldn't find a place to take her in her condition until I found an end of life home in my neighborhood where a care giver couple live. They were caring for only one other resident and had one other care giver. So peaceful. So kind.

Hospice was amazing for my Dad. He had no discomfort and we were able to visit anytime. The facility was beautiful and all of the staff supportive. I think many people have a negative experience with hospice because they don't want to accept their loved one is dying. They blame the staff rather than accepting that death is imminent and hospice is making the passing easier for their loved ones.

It flat out sucked. Doctor and Spiritual people were nice

Lea many times your words have been a life preserver thrown to me on this godawful journey. Condolences on the loss of your mom, glad she is at peace now, and hope you have some as well. I am glad to hear she/you had a good experience with hospice.

I've had two relatives in hospice. One experience was just a couple of days, in hospital only, and that didn't go as hoped (but that was due to hospital staff, not hospice). Another relative was in hospice care at my home for nearly 4 months. Hospice really made the difference -- I believe they prolonged her life, and they definitely made it better through compassionate care, regular attendance by doctor and nurse, and excellent medication management. Once a person is terminal, who cares if high doses of a drug damage the kidneys or cause addiction or anything like that; the doctor prescribed her painkillers, appetite stimulants, I don't know what else, to keep her not only pain-free but energetic. They gave me the support I needed to administer the regular doses and to know how to use the emergency supplies. My relative went from hardly eating or moving (after a last-option surgery) to walking with a walker all over the house and having a good appetite. She shopped like a demon and went out to eat frequently, and we had a fun summer of being tourists. She continued to lose weight because the disease was slowly winning, but I would say she truly had quality of life during those months. When the end came, it was very quick.

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.

Thank you for this truthful and accurate message. I’m a retired nurse and my husband is struggling with severe vascular dementia ( most likely Lewybody ) and when his time is near I will keep him comfortable with hospice care. He’s currently at a veterans health care facility receiving excellent care. I also want to say I’m SO sorry for your loss and I pray for your comfort and peace as you grieve your loved one.💜

My mother had her final brain bleed and was in Hosparus Care in the hospital in Louisville, KY. They were her angels. They took amazing care of her and kept her comfortable with Morphine & Ativan. If we had not elected the meds she would have been miserable. She passed in 7 days peacefully.

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!

I think it's important to share positive experiences and to understand we all struggle losing loved ones and sometimes we blame others when it's difficult to accept. That's human. Those who feel "hospice killed my loved one" need to understand that hospice is END OF LIFE care, your loved one is already dying. Hospice is there to help the loved one and the family through the process. I wish every family could feel supported and cared for properly but I realize things can happen to make someone feel differently. I didn't know anything about hospice until my Mom was diagnosed with terminal cancer, and she lived 650 miles away from me. Hospice was a godsend and truly our lifeline through my Mom's short journey. I drove from my state to Mom's 6 times in 5 weeks to care for her while I working. I was not sure of what to do or how I'd get through that time. I received more support from hospice than I did from family. They were there to keep me updated when I'd travel back home to work a few days before going back to care for Mom. They were absolutely amazing, so much so that I ended up working for 3 different hospice companies in the years since, just to be a part of helping other families through these difficult times. Unfortunately things can go wrong but I can honestly say, from my experience with being a family member and also working for hospice, the nurses, CNAs, social workers, chaplains, etc are truly amazing humans. This is not an easy field they've chosen, they connect with their patients and hurt too when they die. They form bonds with families too. As I've said I've worked for hospice myself, I've personally hugged and wiped the tears of hospice staff/coworkers who's hearts broke after losing a patient. Years pass and they will still remember patients who meant so much to them. How special is that to know someone else loved your family member and bonded so closely with them at the end of their life! What many people may not know, hospice staff have weekly meetings to discuss patients/family of patients, any medication changes needed, needs of families, complaints, ways to improve, they mention patients who passed that week and pray for them and their loved ones - and many also hold private memorials, monthly or quarterly, for the staff to also mourn your loved one. They truly do care about your family members. We may see something a certain way, but once we see the bigger picture, we can understand better. And not to be facetious but for anyone who still believes hospice"killed their loved one", they receive funds for keeping them alive and receive nothing after a patient dies, it's in hospice's best interest to have people live longer under their care. I will forever be grateful for our hospice experience, I have and will always recommend hospice to everyone when the time comes. I cannot imagine going through such a heartbreaking time without the care and support hospice provides. I wish everyone to have that comfort because it simply hurts so very much. My Mom has been gone for 15 years and I still miss her, cry, wish for one more hug or cup of coffee together. There is no end to grieving but time definitely helps ease the intensity. Besides recommending hospice, I recommend finding someone you trust to share your grief with, the challenges and pain. You may be surprised by who you can connect with in your sorrow, nearly everyone has experienced a loss. I wish everyone the very best through these difficult times, be gentle with yourself during grief and reach out to others, you are never alone. (My Mom is not the only family member cared for by hospice, she was just my first experience. We've had hospice service for several family members since)

I had positive experiences with hospice and it’s the best thing you can do if you are terminal. They don’t kill you, they just make the experience of dying more comfortable. Everyone I worked with in hospice, both for my husband who died from a brain tumor and for my dad who died from vascular dementia were very good. One lady in particular assigned to bathing my husband was especially excellent. Somehow as soon as she came in the door she brought peace and comfort with her. She wasn’t in charge the way the nurse was, but you could tell she had a lot of experience working with the dying. She gave me all kinds of tips and tricks to help my husband and she had a great effect on calming my anxiety. Truly an angel. She even stopped by after he passed to see how I was doing. If you have a terminal illness I have come to believe hospice is the best thing you can do. We all want to stay alive of course, but there is something very sacred about the process of dying and I’m not afraid of it because of what I’ve experienced helping my loved ones through it. I would recommend doing hospice as soon as it’s appropriate.

My husband was in Sunrise with dementia on their Memory care floor for just shy of 3 years.
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.

Thank you so much for this sharing! I will be starting soon as a Hospice Volunteer, and it is so good to hear these wonderful stories.

My family had a positive experience with hospice at home. My father had a devastating stroke and I asked the doctor about hospice. We used the hospice affiliated with the Catholic hospital he was in. We never had any problems with hospice. They were able to help us with administrating the comfort package and answering our questions. He was in hospice for 12 days before he died.

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.

In general terms, hospice is a wonderful service. In specific terms, you need to find the right hospice agency that understands your needs and is compassionate.

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.

Hospice has been a godsend for my mother. She is in a memory care facility, and also has a mass on her lung. She went to the ER when her oxygen levels dropped, and they sent her home with orders for a hospital bed and oxygen. The care facility and medical supply agency had trouble getting those for her. I think the oxygen was a supply chain issue, and Medicare just kept wanting more and more documentation for the hospital bed. This really concerned me, because when I was with her in the ER it became very clear to me that lying flat worsened the breathing problems. We brought in hospice. The next day she had a hospital bed, a reliable source of oxygen, and more!