Hospice Opinions

[WEDWDW]

For anyone who has experience with this service,would you recommend it to others?

Any negatives for the patient and/or patient's family?

 

[Suger Mag]

I found hospice was a great help and enabled a lot of services once my parents started it. It made the dying process a lot easier for each of my parents when the time came and for me as their caregiver. Some things you cannot prevent no matter how much you want to, and having that service was a comfort and huge assistance.

 

[FreeTime]

We found it helpful. They were able to provide resources as well for things we would have been lost with on our own.

 

[AussieFan8]

1. Hospice varies by hospital. Make sure the hospital and their hospice meets your needs/expectations.
2. Ask a lot of questions about what you can expect and how often hospice will come in to the home before the patient leaves the hospital (assuming the hospice is at home).
3. Again, if done at home, make sure the intake is done the same day, as soon after the patient comes home as possible.
4. Talk to them about the patient's ongoing medications and how/whether they'll be continued at home.
5. Look into hospital at home programs to see if that would be an option. It is my understanding that far more in care is provided in these programs.

If I think of more, I will post again. We unfortunately had a rough experience with hospice earlier this year which has made me think a lot about what we could have done differently to make it go smoother.

ETA: If at home, have an understanding of how much lifting and things of that nature will be needed, and think realistically about whether the caregiver(s) will be able to physically handle it.

 

[Marrila]

Just to note, in the US many hospice programs are not directly under just one particular hospital. They may work with hospitals and physicians in an area, but the hospice itself is often an independent provider.

 

[Marrila]

We found it helpful. They were able to provide resources as well for things we would have been lost with on our own.

This describes our experience. I will always be thankful for the thoughtful care my mother received.

 

[flyingdumbo127]

My Dad and I found Hospice a comfort during my beloved Grandma's transition. Hug to all in need of this care.

 

[Threehearts]

There were so many good things about hospice for my father. Two nurses came to the house several times a week for dressing changes, pain meds etc. This went on for several months and they became tremendous supports. My parents considered them friends.They were great. Unfortunately for us, three weeks before my father died, one of the nurses went on a cruise which we were so happy about. She sure deserved a vacation. That nurse said that there would be a substitute nurse along with the other regular hospice nurse and she'd see my father soon. We never saw the nurse again who went on vacation and her partner whom we loved, rarely showed up for planned nursing care. It was kind of a mess.

My father fell in the bathroom at home and it was clear that he was actively dying. We had no choice but to put him in a nursing home because all the hospice facilities were full and we couldn't get home care. The home hospice nurses just never returned our calls and we never saw them again. It was strange. A nursing home is what the hospice company said was our only choice. My father was taken in an ambulance and when he got into his room, a social worker came by and asked him if he liked movies, or going to the solarium for music performances and said that she read in his chart that he liked golf and does he still play. It wasn't the best place for soon dying person in agonizing pain but they meant well.

I got my father pain meds and anti-anxiety medication. After 48 hours of him crying and writhing in pain but unable to speak, I suggested that maybe something more needed to be done. To be blunt, stronger medication. My father was a Ranger, Airborne and a POW during the Korean War. He was burned from the waist down and was dying from inoperable gangrene in those burns. I only cared that he was calm and not afraid when he died and he was.

Despite the glitches, I could not believe how fantastic the regular hospice nurses were. I am a currently licensed RN although I've been out of the ICU for some time. What I did pales in comparison to the nurses we had. These nurses were so compassionate, so expert in the medical needs of a patient and were incredible advocates. I highly recommend hospice with the caveat that the agency you use may get overwhelmed with other patients and the end of life plan you decided upon may need to become more flexible.

 

[PrincessShmoo]

Any negatives for the patient and/or patient's family?

My only experience was when my mother was at the end. My sister was her primary caregiver (lived in same house). Since she was still working, they got hospice for my mother. They were supposed to come on weekdays when my sister was working. Did they actually come every day? - Mostly. One issue we had with them was they changed out who came about every 3-4 weeks. My mother never really got comfortable with any of them.

Biggest issue we had - their plan only supplied hospice for 6 months. Well, sorry to say, my mother didn't die on schedule. They cut off the hospice a month and a half before we had to put her in the hospital and that's where she died.

 

[disykat]

I wrote about a big post and decided to delete because sometimes less info is better! I've had 3 parents on Hospice in the last 5 years, with mixed experiences. (((Threehearts))) I can totally relate!!!

At any rate, I still have a favorable view of Hospice overall. The idea of being able to die peacefully in their home, surrounded by family, without pain, is ideal IMO. In my MIL's case we met all those goals, and we got the ideal Hospice situation. She was in her home and we (her two children and me with support from some of our adult children) cared for her there. Even with 3 of us rotating shifts and extra help, it was 3 weeks of really intense caregiving, but also a beautiful time. When she was sent home from the hospital they thought she'd be gone in 3 days, but I think she was having such a good time with family she held on!

My parents passings didn't go so smoothly, getting them qualified before the pain of organ shut down set it was tricky because they both had Alzheimer's, they were both in facilities so the nursing aides had limitations, (they were wonderful but were not allowed to give pain meds on demand, only on a schedule and we had difficulty getting prompt Hospice help on demand due to staffing issues - one due to Covid and one due to Holidays) but I still feel strongly that Hospice is the way to go. (When at home, you can give pain meds on demand.)

Definitely ask questions about ON DEMAND pain relief. That is key to the hospice experience.

 

[Pea-n-Me]

First, each patient situation, and each hospice, will be unique. No two experiences will ever be exactly alike.

Where I am, hospice is for people who are no longer seeking treatment and are not expected to live past six months or so. (If still in active treatment, Palliative care is recommended instead.)

Both of DH’s parents had hospice services at home, with FIL eventually going to a hospice house when his needs exceeded what could be provided by family (basically he was becoming confused and combative to caregivers). He passed within one day of being there - they do not hold back on giving medications.

I was closest to the situation of my own mother receiving hospice care in our home. They stressed upon intake interview that this was our experience and we could make it what we wanted. We had two nurses at home, myself and my daughter, and others to help, so we did almost all of her care ourselves. They came to take vital signs, assess her, and count medications. Dressings were already changed, she was cleaned and sitting up in bed well taken care of. We didn’t even have aides come in to wash her up because they could not be scheduled at regular times, and I needed to know when someone was coming for my work schedule. (As it was there were some days that nurses were very late coming, like, a couple of hours, but I knew that they were tied up somewhere else, as our nurse was the day Mom died when she stayed with us for three hours getting the paperwork done, counting meds, calling our family doctor, waiting for the funeral home, and supporting us, etc. I really appreciated that. But I imagine that not everyone would be so patient, understanding that people often have things to do outside of the stress of caring for a dying loved one at home.)

The two most helpful things that hospice did for us was provide equipment like a hospital bed, a lift, a suction machine (which was delivered at midnight one night), all supplies for her wound cleansing and dressings, urinary catheters, and medications, etc. They also provided a pamphlet that was very helpful to me that described the stages of dying and what could be expected to happen at each. I relied on that quite a bit at the end, even though I’d taken care of many dying patients myself in the hospital, this was different being at home and the primary care providers 24/7. Things I found unhelpful were what I already described about changes in scheduling and delays in care, a system I wasn’t used to as far as medicating people, a few disagreements with the doctor about treating illnesses like pneumonia or UTI, and one time a nurse not even on the hospice team came in for a wound consult and offered an unsolicited opinion I didn’t appreciate. (I asked that she not return.)

I hope that’s helpful. It’s a hard thing to go through but hopefully, with good people and support, it can be a mostly positive experience. I’m glad overall my mother was comfortable and well cared for. In the days before she passed she was happily talking about seeing things “upstairs” that were “fantastic” and “beautiful”. I did feel supported for the most part.

 

[PollyannaMom]

We had hospice for my mom. It was quite a long time ago, so I'm sure some things are different now, but they were really wonderful.

 

[DCLMP]

For anyone who has experience with this service,would you recommend it to others?

Any negatives for the patient and/or patient's family?

Yes it's a good service, but you need to be committed to not receiving treatment. The hospice agency may revoke services if family member is admitted to the hospital. It really depends on why they were admitted. Medicare pays for hospice to keep people out of the hospital. You can't do both.
The only negative thing I can think of regarding hospices agencies is the fraud. They admit people that don't qualify. If you google hospice fraud you'll find plenty of cases. That being said it probably does not affect the care your family member will receive. Just do your research. My mom was on hospice. My brother fired the first agency, but the second one was fine.

 

[kanne323]

Full disclosure, I work in hospice (but on the grief side of things.) My family has had some amazing experiences with different hospice organizations, as well. Every hospice agency is different. You are able to choose which hospice you'd like to use, as long as your person is in their coverage area and they take their insurance/Medicare. I highly suggest a Medicare-certified nonprofit over a for-profit hospice.

I would always recommend hospice if the patient and family are ready for it, but there are some important things to know. Hospice does not mean 24/7 care. It does include an entire care team- usually a nurse, aide, social worker, chaplain- who do make regular visits (generally once a week for nursing care, the others may differ and are dependent on what the patient wants and needs.) Nursing visits may become more frequent once a patient is transitioning. All medications and DME related to the hospice care and qualifying diagnosis are covered. Depending on the organization, things outside of that may or may not be covered (like blood transfusions, antibiotics, etc.) I think it can also be important to know that hospice cannot guarantee a pain-free death. They can do everything they can to alleviate pain, but sometimes, all the medication in the world isn't enough.

My only experience was when my mother was at the end. My sister was her primary caregiver (lived in same house). Since she was still working, they got hospice for my mother. They were supposed to come on weekdays when my sister was working. Did they actually come every day? - Mostly. One issue we had with them was they changed out who came about every 3-4 weeks. My mother never really got comfortable with any of them.

Biggest issue we had - their plan only supplied hospice for 6 months. Well, sorry to say, my mother didn't die on schedule. They cut off the hospice a month and a half before we had to put her in the hospital and that's where she died.

Many hospice patients do not die in that six month period- many people actually do a little better on hospice for a while because there's more access to pain and symptom management. What generally happens, though, is that patients recertify for hospice services. That means that the care team's documentation is used to determine whether or not that patient is still qualifying, which is essentially the certifying physician saying that they would not be surprised if that patient dies in six months. The benefit should not be cut off if someone still qualifies. Some people are on hospice for years- we have people who have been on for over three years now, and they continue to qualify every time they come up for recertification. Are you saying that your mother's insurance plan did not cover longer than six months, or the hospice itself did not? I'm so sorry you had that experience. If this was a Medicare-certified hospice and your mother qualified for services, this was completely against the rules and should not have happened (I can't speak for for profits that only take private insurance.)

I will say it is highly unusual for hospice to come daily. At the most, our aides might go 2-3 times a week. Nurses might go daily in the last days of life.

I wrote about a big post and decided to delete because sometimes less info is better! I've had 3 parents on Hospice in the last 5 years, with mixed experiences. (((Threehearts))) I can totally relate!!!

At any rate, I still have a favorable view of Hospice overall. The idea of being able to die peacefully in their home, surrounded by family, without pain, is ideal IMO. In my MIL's case we met all those goals, and we got the ideal Hospice situation. She was in her home and we (her two children and me with support from some of our adult children) cared for her there. Even with 3 of us rotating shifts and extra help, it was 3 weeks of really intense caregiving, but also a beautiful time. When she was sent home from the hospital they thought she'd be gone in 3 days, but I think she was having such a good time with family she held on!

My parents passings didn't go so smoothly, they were both in facilities so the nursing aides had limitations, (they were wonderful but were not allowed to give pain meds on demand, only on a schedule and we had difficulty getting prompt Hospice help on demand due to staffing issues - one due to Covid and one due to Holidays) but I still feel strongly that Hospice is the way to go.

Definitely ask questions about ON DEMAND pain relief. That is key to the hospice experience.

It can be challenging anf frustrating for family when the patient is in a facility and you're managing both the facility and the outside hospice organization. That's really hard! Sometimes it feels like the organizations aren't communicating well.

 

[kanne323]

Yes it's a good service, but you need to be committed to not receiving treatment. The hospice agency may revoke services if family member is admitted to the hospital. It really depends on why they were admitted. Medicare pays for hospice to keep people out of the hospital. You can't do both.
The only negative thing I can think of regarding hospices agencies is the fraud. They admit people that don't qualify. If you google hospice fraud you'll find plenty of cases. That being said it probably does not affect the care your family member will receive. Just do your research. My mom was on hospice. My brother fired the first agency, but the second one was fine.

It's not uncommon to revoke for even two hours for a scan and come right back on service with no interruption, or to revoke for a few weeks or months to try a treatment. It's true that hospice does mean the focus has changed from curative care to comfort care, but a good hospice revokes for treatment or testing so that it's covered by Medicare or private insurance, not because they don't want to care for the patient.

Any sort of health care fraud is alarming and obviously wrong. I'm not sure there's any more existence of fraud in hospice compared to other forms of health care. For every fraudulent agency, there are many more that are not fraudulent.

I do strongly suggest people do their research- ask people you know for the experiences with local hospices, read reviews, check rankings. And I will stand by my earlier comment that I recommend non-profit, Medicare-certified hospices. We have to document everything and we follow very, very strict guidelines for everything. We have regular surveys and have to prove we are following regulations. However, I will also acknowledge that it can be hard to dive into this research when you're faced with this decision- it's often an emotionally-charged, time-crunched experience starting hospice services, unfortunately.

 

[DCLMP]

It's not uncommon to revoke for even two hours for a scan and come right back on service with no interruption, or to revoke for a few weeks or months to try a treatment. It's true that hospice does mean the focus has changed from curative care to comfort care, but a good hospice revokes for treatment or testing so that it's covered by Medicare or private insurance, not because they don't want to care for the patient.

Any sort of health care fraud is alarming and obviously wrong. I'm not sure there's any more existence of fraud in hospice compared to other forms of health care. For every fraudulent agency, there are many more that are not fraudulent.

I do strongly suggest people do their research- ask people you know for the experiences with local hospices, read reviews, check rankings. And I will stand by my earlier comment that I recommend non-profit, Medicare-certified hospices. We have to document everything and we follow very, very strict guidelines for everything. We have regular surveys and have to prove we are following regulations. However, I will also acknowledge that it can be hard to dive into this research when you're faced with this decision- it's often an emotionally-charged, time-crunched experience starting hospice services, unfortunately.

I understand that, but I think you knew what I was referring to. Like I said it depends on why you’re going to the hospital and what the treatment is Having a pacer changed okay. Having a bypass or chemo not okay. I never stated they revoked because they don’t want to care for the patient.

 

[kanne323]

I understand that, but I think you knew what I was referring to. Like I said it depends on why you’re going to the hospital and what the treatment is Having a pacer changed okay. Having a bypass or chemo not okay. I never stated they revoked because they don’t want to care for the patient.

No, I guess I did not understand what you were referring to. To me, it sounded like you were saying that would be the end of the hospice service, and I wanted to clarify that many people who revoke go right back on service. I apologize if I misunderstood you.