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There seems to be gallons of ink on here about the horrors of hospice. I fully respect all those people who have shared these experiences. It's a valid discussion and I don't doubt for one second the validity of these experiences, nor am I interested in starting some sort of competition. However just as we need to hear the negative should also talk about the positive.

I've been volunteering with a non profit hospice for a few months. I don't claim to be any kind of expert as I am fairly new to the work and my experience is limited. My impression so far of this particular organization is very good. I've heard that the for profit companies doing hospice is Not so good but that is purely anecdotal evidence. So, let's talk......

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My ex husband passed away from brain cancer. He had in home hospice care during the last few months. They took care of everything and were extremely kind and understanding. I have only good things to say about hospice
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Raising my hand!! Mom and I had a great experience with Hospice. I have zero bad things to say. Actually, I miss them and my mother of course.
(4)
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Mom died two weeks ago of kidney failure. She was fairly vital 'til the last two hospital admissions and was only on hospice a short time but our experience was completely positive.

They delivered everything within just a few hours of her hospital discharge, including a bed, an over-the-bed hospital table, all her oxygen needs, stacks of disposable underpads and incontinence supplies, refills of all her current medications plus a supply of the same meds and additional pain-killer in liquid form for 'later'. The hospice 'team', a chaplain, social worker, aides, and nurses all stopped in to introduce themselves, evaluate mom and address any needs or questions we had. Any additional meds were immediately called in to a local pharmacy and available within the hour for pick up.

I, too, miss the nurses and team members. The nurses would come by if they were in our area to 'check on her' even when mom wasn't on their list for the day. Two of them texted me regularly, asking how mom was, could they do anything for us. All of them either called or sent a heartfelt card after she passed. They were all truly kind and caring towards mom and the rest of the family.

All the workers we dealt with treated their jobs as a ministry, I felt. Nothing bad to say at all here.
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I was pretty happy with hospice that we had for my dad in the last couple of months of his life. I didn't know that in larger communities, you can choose between a number of different groups.

My dad died on a Friday night and the social worker wanted to come comfort me, which I didn't want or need. My dad was 92 (so he lived a good long life) and I wanted to grieve in private. It took me a while to convince her that she didn't have to ruin her Friday night to come console me, that I was fine, just weepy. Since my family isn't religious, they didn't have to do any spiritual comfort with us. I think we were pretty low maintenance overall. I wouldn't hesitate to bring in hospice again for my mom if needed.
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I cannot thank Hospice enough for the care they provided to my mother for over a year. Their assistance in providing medications and personal products allowed me to be a daughter again. The last two weeks were intense as her time to pass came near.

When Mother needed 24 hour care, the nurses appeared and the hospital bed arrived. The chaplains, social workers, and nurses were the best I have ever dealt with during the four years of intense caregiving.

My mother was in Assisted Living for four years, and with Hospice's assistance she did not have to move to a nursing home. There was no horrible moment. A week after Mother passed, her Chaplain called me to make sure that I was doing good.

Mother was almost 98 years old. The last week, she lost her eyesight and was already very hard of hearing. I was relieved that she had moved on to a better place. I miss her every day, because she was also my best friend.
(7)
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My mom had hospice in a SNF the last week of her life. Fairly large non-profit hospice group, that has patients in the SNF ongoing, so established relationships with the staff. Their case manager met with us on just a few hours notice, coordinated the transition from "rehab" to "palliative" which was a huge improvement for moms comfort. She came quite a bit out of her way a couple times to check mom and alleviate my concerns. They provided a grief counselor for my dad, who sadly refused to continue on past the first appointment that I made for him. They've sent follow-up support materials several times over the last year. My only complaint would be getting a couple of "beg letters" asking for donations, but that's minor and a normal part of dealing with a non-profit.

My aunt was on hospice for a much longer time, several years ago. A different non-profit, also very good care. She was in a small AL, and hospice added enough support to their offerings that she was able to stay out of snf (the one in her little town isn't good), despite being bedridden & advanced dementia the last several months.

The AL that I'm aiming Dad towards has a partnership with the local non-profit hospice, so hopefully we can have an equally good experience when the time comes.
(4)
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I'm in Ontario Canada and I've got to say I'm envious of the hospice model available in the USA. Our gov't give lots of lip service to aging in place and home care, but the front line troops seem almost dumbstruck that anyone would choose to keep their loved one out in the community rather than place them in a nursing home, more than once I have been advised to "get on with my life". Our gov't health insurance covers home care if you qualify and care is coordinated through a central agency. Our case manager visits twice a year and decides on the level of care needed, then orders home care through an approved agency. The problem is that each level of care is carried out by a separate agency and there is no cooperation or communication between them. I was amazed to discover that everything I have covered with our nurse is not automatically passed on to the doctor! I'm not confident that there will be enough support available to me as our needs increase. My hope is that my mom dies in her sleep and never reaches the point that she needs 24 hour nursing care, my backup plan is to call an ambulance and transfer her to hospital.

The care my brother received when diagnosed with terminal cancer was amazing and sounds similar to your hospice model. There was a coordinated team of doctor, nurses and psws as well as the many volunteers, which I suspect must have been coordinated by the Cancer Society. He chose to spend his last weeks in the hospice wing of a local hospital and the nurses were amazing and compassionate.
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Cwille , interesting post from the north country. I rember visiting my wife's sister in Toronto many years ago. Her 2 year old daughter was running a high fever, she called the local med service and a nice young doc showed up less than an hour later. there was no payment or bill. For Americans this was amazing. Has this level of service been eroded now in Canada?
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Windyridge, it is a matter of contention in the province that successive provincial governments to put too much focus on Toronto and environs (GTA) and the rest of us get to share their costs without enjoying the same level of service. I'm fortunate to live in the relatively populous southwest, god help those up in the boonies! That said, you will never hear me complain about universal healthcare, I shudder to think of where my family would be without it. Now complaining about the way it is run is a different matter...
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My experience has been quite limited. My sister's cancer had continued to metastasize to the point that she had a second respiratory collapse and had to be hospitalized. Dx tests confirmed the continued advance, like Napoleon's army, of the cancer to almost all organs. Doctors advised us of the grim outcome which we hoped never really would happen.

After I spoke with a few doctors who had previously treated my father, and who I knew to be aggressive and not quitters, and seeing my sister's more rapid deterioration, I spoke with the nursing staff about options going forward for the short time remaining.

The suggestion was to move her to ICU, which was done, then to a hospice area on one of the medical floors. No transfer out of the hospital was necessary.

That was a relief and comfort to us; my sister wasn't in any condition to be moved anywhere from one room to another.

We were given privacy, a comfortable room a few doors down for privacy if we needed to just get away. We discussed the medicine and from there were just left alone until her death occurred.

It was very professional, respectful, soothing to the point that any end of life situation can be.

I have had one other experience with hospice but the whole situation was manipulated by an emotionally unstable family member, and since it was so negative, and hopefully so unique, I won't even mention it, including the funeral which was orchestrated by the so-called hospice "minister" - it was an embarrassing farce.


CWillie, does the care manager actually select the home care therapy company? Does the family have any choice in the matter? I'm wondering as I'm thinking about some of the great therapists we've had, and some that weren't at all great and had to be replaced.
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GardenArtist, I was struggling to compose an answer to you but I'm going to go with a brief no, there is no choice, or at best limited choice.
Think of the province as a giant insurance provider that is shopping around for the best deal, care providers vie for contracts and many of the little players have been pushed aside when larger more politically connected companies set their sights on a desirable territory. There are private pay companies available for those who need extra care and can afford it, but if you want to take the gov't money you also have to accept the level of care they provide.
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I wouldn't know what to do with out my hospice team. My mom is going on 9 months now of being on hospice almost lost her twice COPD and heart failure has ravage her. they are even terrific with helping me with my caregiving burnout which has been more and more lately as time continues. I can't say enough good things about hospice.
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I can honestly say my experience with hospuce was wonderful. We had my gram on in home hospuce for about 6 weeks. They were wonderful but it was my first experience and I didn't call them enough with my concerns but would just wait until the nurse came. With my mom, also in home, i called anytime I was not comfortable. My mom was only on hospice for a little over 2 weeks. She had dementia however she died from a brain bleed. My mom was put on hospuce during a major snowstorm and although we were able to get all the equipment delivered before the snow the nurse didn't come until 4 days later but we were ok with that. My great experience was one day the nurse came and all was fine. Mirphine dose had been increased one time and we were giving it every 6 hrs. About 10pm that night moms breathing became very labored. I knew this was to be expected but I could not handle watching it. I wanted the something done asap. To Meir sounded like she was struggling to breathe. I called the hotline and they assured me mom was ok but they would send a nurse out. The nurse arrived about 11;00. He was a male nurse that i had never met before. Mom had a fever so he gave her a suppository. He was able to do without disturbing her or removing her clothes, I was impressed. He also called our doctor and had the MEDS increased. My daughter was there asking me if she should go to school the next day and this nurse said I am sorry to butt into your conversation but I think you should stay home. I asked were we close and he said he didn't think mom would pass that night but probably the next day. After about an hour moms breathing settled down. I said to the nurse that i was glad I called because I felt better that he was here. He asked if I minded that he hung around until the next dose to make sure the med schedule was ok and then he said I really want to stay to make sure you are comfortable. He said go lay with your mom (I had a bed beside my moms bed) I am just going to sit here for awhile. He heard me praying with my mom while he was there and gave me a rosary. He stayed for 3 more hours just sitting quietly on the sofa. To realize that hospuce was there for the family just as much as the patient was truly amazing to me. When someone is placed on hospice, everyone is involved in the caring process and not just the patient. My mom passed at noon the next day and my daughter was right there beside her Nan. I can't even write anymore because I can't see thru the tears 😢
(4)
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We had wonderful experience with hospice in Florida when my mom had cancer. We used their respite care as well as inpatient and home health. My mom chose to be at home when she passed, and I was able to be with her lying beside her in her hospital bed that they provided. (My dad couldn't handle being around much.) They made sure she was peaceful and in no pain. I couldn't have been more grateful to them!
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We had in home hospice care for my Dad, he had pancreatic cancer. Hospice was AMAZING. They helped with everything from medication, palliative care, and comfort for the family. If it wasn't for hospice, and good long term care insurance, we never would have been able to keep him at home, at at home is where he passed.
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Hospice care provides a special way of caring for family members and loved ones facing an end of life decision. Compassionate care professionals provide delicate care ensuring as much comfort as possible. I really appreciate the hospice care of granny nannies they really care my mom and we had good experience with them.
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Hello, I have worked in Hospice care for over 5 years, I was a little afraid at first, but I realized that it is a blessing to know that I was there for someone on their last days of life, the patient can become frustrated but I could imagine what's going through their mind. The youngest patient that I had was in her early 50's whatever she wanted I did for her, it's amazing to see the transition and feel Wonderful that you was apart of it. I always education ed the families in this difficult time because the patient is already prepared, it's tuff to see the families upset but I try my best to make them see the good out of this end of life process my main point was "that we should not be selfish only thinking of ourselves" because the patient is the one suffering because they know their is limited and we should learn to respect them. I really love hospice care, the only reason I stopped because it was home care and gas prices started to rise. I do work in patient health care and some of my patient still do go through hospice and I still get to take care of them but not as much. My great-grandmother told me before she passed away through hospice a short time. " Don't be afraid of the dying or death, be afraid of the living" and that's so true. I can go on and on about working in Hospice this will be a book, but it was a great experience and I would do it again. I exactly love it!!!
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Sweet, thank you for sharing your perspective from that of a hospice worker. You have a real understanding of the need for hospice and how it can help both family and the dying family member.
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Hospice was great for my mom. She was placed on hospice at home in October 2014 and they visited her almost every weekday for 6 months. She loved how they boosted her spirits. She eventually became "too healthy" for hospice and was taken off of it in April 2015. This October she came down with pneumonia and was hospitalized for a week then released to a care center where she is now. She turns 93 today, November 21st. She will be going back on Hospice as she has developed CHF and is declining fast.
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Lots of good ecperinces people are sharing. I would encourage people to consider volunteering with their local hospice organization. It's very rewarding, does take any particular tech or nursing skills. Volunteers do companionship visits, respite for caregivers, spiritual counciling, pet visits, and bereavement counciling. You can put as much or as little time into it as you wish. Sometimes just the smallest things can mean so much to patients and families going through the end of life phase. Visit, take the trash out, do some dishes, run an errand, read to the patient, or just be with someone when there is no one else.
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Meant to say.........Does not take any particular tech or nursing skills
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I have over 8 years of experience in Hospice. It can be stressful and tired some and draining, but there are a lot of positive points here. I feel so good when I can respect some of the patient's desires, the only reason I've stop working in the hospice field was that I was doing home care and gas prices had risen, but I work with hospice patients now but not everyday, and I actually had a lot of fun with my patients. Only one downside was I had to educate the families, because some were in denial and didn't understand that their loved one would not transition in peace if the family was so worried because the family wasn't ready to lose their love one, but it's out of our control, we have to leave it up to God. It really hurt ed me when my patients were young in age; some of the older population was a little to handle, because they was already prepared to transition. Would I do it again? Yes!
This is a very passionate field and you really have to have patience to deal with those kind of patients, you have to be sensitive to their needs. 👍
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Last week I received a call from the hospice which cares for mthr, and it was a volunteer offering to come sit with her while I went out to prepare for Thanksgiving. Mthr was in a care home just then so we were ok, but it just reminded me of all the good things out non profit is doing to serve people who are hurting.
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GardenArtist You are very welcome :-)
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During my Stepdad's last hospital stay in 2010 he decided to stop Chemo and signed himself up for Hospice. My Mom's Dementia had started and she could not be his caregiver with Hospice at home so he asked me. I agreed. He was discharged from hospital and within an hour of us arriving home Hospice showed up with a bed and all medical equipment. Hospice Social Worker arrived with papers and "Book". Nurse arrived with Meds. When everyone left my Stepdad asked who was going to sit with him and attend to his needs. I told him that would be me. He seemed to think Hospice would be in his home 24/7. Anyway...after the first few embarrasing moments we settled in. The difficult part was having my Mom the Dementia patient in the home as well. You can imagine. The aides came 3 times a week to bath him and change sheets etc. The Nurses brought Meds, were available 24/7 by phone and came to house anytime I basically needed them. The last night my Stepdad was agitated and refused meds. Nurse came and coached me through it. She told me to sit and talk to him and ask what was worrying him that sometimes that causes the agitation and patients hang on longer than they should. She left. I talked to Stepdad. He told me all he was worried about and I assured him I would take care of everything. He settled down, rested without meds and passed away a couple hours later. Fastforward to March 2015. Mom in nursing home. Got Hospice on board. Extra hands, help, and eyes at nursing home. Hospice was in 3 times a week to bathe her. Nurses in at least once a week and called me after each visit with their report. Mom was on Hospice 9 months and passed away in October. Both of my experiences were wonderful. I was given a folder "Book" to read concerning the transition that was mentioned in above post. I did read the "Book" and found it very helpful preparing myself for what was to happen and what I was going to be a part of.
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Hospice was wonderful. They helped and went out of their way to help. I'm not coping very well but they done great and handled everything well.
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My MIL died in NH under Hospice Care.. It was just the relief our family needed.. There was always a volunteer there just sitting there keeping her and us company.. It was sooo comforting to have them there... As MIL end near she quietly slipped away so we could have our final moments with MIL..

I would not hesitate to have them involved if needed again..
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My mother is now receiving hospice from Connecticut Hospice, the first hospice in the USA. They are a non-profit and are wonderful. If something is needed it happens fast! I am feeling confident that I can rely on them to have my mother's (and to a cettain degree my) best intetests in mind.
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Mthr had cancer surgery and refused chemo, and her dementia we hoped had just been from hypoxia got worse. Hospice came on board after 2 years of her getting worse and worse with what might also be ALZ. She was losing weight too and her belly over her cancer scar is sensitive though she won't admit it. The week I signed hospice papers, she broke her arm and they sent out a mobile x-ray. No more ER Visits! hooray!

She has gained weight (well, now edema too), gotten cleaner with a daily aide, and seems so much better now that she has attention. Unfortunately, she now has fluid in her lungs, but hospice caught that early and she can sleep well at night with the meds the prescribed for her. She is slipping away but hospice is making this easier for us all.
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I found a wonderful doctor for my mother who only treated the homebound. To say the least, she was a lifesaver! We had the pleasure of her treatment for 3 years. I found her thru a nurse from a hime health care group that had been treating my dad at the time. She took over renewing meds for all doctors mom saw and even gave her the cortisone shits for her knees. She spoke with each and everyone if moms doctors and would not hesitate to call them. My mom sounded contested to me do she sent a portable xray tech over to the house. Just like hospice, not having to run all over for doc appts was truly a blessing. When mom was ready to be placed on hospuce, she still continued to oversee her care. She told myself and hospuce to call her anytime with any questions. True to her words, when moms mirphine had to be increased at 2am, it was done in a matter if minutes and she always asked to speak to me after each call. This is what I loved most about hospuce, you could call at any hour of the day and no question was an imposition no matter how trivial. Thinking of my mom a lot tonight and the portable xray reminded me of this. Merry Christmas and God Bless. Our angels are looking down upon us! 😇
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