Hospice Care

[97K15004WD]

So, anyone here had family members use hospice care?

The Hospice Hustle

Half of all Americans now die in hospice care. Easy money and a lack of regulation transformed a crusade to provide death with dignity into an industry rife with fraud and exploitation.

www.propublica.org

My dad did and while his experience was good, my mother did 10 years later and it was horrible. The article above is long, but is very interesting.

I had no idea no license was needed to start a hospice care unit.

 

[Touring5]

Yes.. Everyone I've met (including myself) seemed very thankful for what they provided.

 

[BMWTurboDzl]

Yes.. Everyone I've met (including myself) seemed very thankful for what they provided.

Same

 

[wings&wheels]

Same

Luckily, same here. With Dad two years ago, however he had hospice care in the hospital. He had lived with severe Parkinson's for ~13 years, but the end was relatively quick; trip to the hospital progressed to hospice and ended in about three weeks. The care was very good, he was kept clean and comfortable, but rather clinical and cold. A few in the family were upset, but I guess I understood the measure of detachment when providing that care...I couldn't do that work and assume many of those that do must have an ability to detach somewhat.

 

[javacontour]

So, anyone here had family members use hospice care?

The Hospice Hustle

Half of all Americans now die in hospice care. Easy money and a lack of regulation transformed a crusade to provide death with dignity into an industry rife with fraud and exploitation.

www.propublica.org

My dad did and while his experience was good, my mother did 10 years later and it was horrible. The article above is long, but is very interesting.

I had no idea no license was needed to start a hospice care unit.

We did this with my mother for her last days earlier this year.
She had lung cancer that was diagnosed August 2021 and she did chemo and immunotherapy from 9/21 to 1/22.
The tumor got smaller under the chemo, but I think the immunotherapy that continued when the chemo was paused did her in.

Long story short, she was down to ~75 pounds and we brought her home for hospice care.
My sister and I took turns as her oncologist thought she had two to six weeks left.
She passed on 3/14, almost 4 weeks from the time she came home.

I saw someone else had this going for months. I don't think we could have done it for months. But for that time period, we were able to manage.
We had twice weekly visits by the hospice nurse and a similar frequency for the home health aide.

I was glad we were able to give mom a death with dignity, surrounded by her family and in a familiar place.
I don't know what they charged Mom's insurance, but everything was provided for us to care for mom in her home.
I don't think out case was run by an outfit described in the story. The nurse was a high school classmate of mine, and someone who I wouldn't expect to be involved in a scam. The doctor was a fellow church member from the church I grew up in back in the day. She was given good care and seen 4 out of every 7 days by a trained professional.

 

[RitcheyRch]

My dad was under hospice care after being diagnosed with Alzheimer's and Parkinsons. I was grateful for the service they provided. My dad passed away on 26 oct 2022.

 

[joegreen]

My grandmother died this morning. She was on hospice. She was on hospice for a few months. They were fantastic and provided all the medical equipment and medication needed.

 

[JeffKeryk]

Hospice workers are angels on this earth.

 

[redhat]

Fortunately, here in NY, we are a Certificate of Need state, meaning you have to have supporting data that a facility is needed.

One big distinguishing factor is finding out if your area's hospice provider is for-profit or non-profit. Independent, non-profit hospice organizations will always provide the better care.

 

[PWMDMD]

It was a mixed bag with my FIL who was fine midway through October and passed by the first week of December. It was during CV-19 and it just depended on who they sent - some were great and others not so much. I know they were having a staffing shortage in my area.

 

[b4autodark]

My Mom died in 2012 from ALS, she was 87 and had a good life with the exception of the last three years. We had hospice care at home for her the last 4 months of her life and it was excellent. The hospice nurse herself was battling breast cancer and had lost all her hair from chemo treatments. It did not slow her down one bit. She was always on the ball and a real spirit lifter for my Mom.

I will always be grateful for hospice making my mothers last few weeks more comfortable.

 

[benjamming]

My mom worked in hospice as an RN. As with most things, the quality of the people vary, but good ones, i.e. caring and compassionate, are priceless.

 

[Boomer]

My mother-in-law, my father and my younger brother all passed away while under hiospice care. Everyone was grateful for the good services they provided. It may depend on where you live!

 

[demarpaint]

It was a mixed bag with my FIL who was fine midway through October and passed by the first week of December. It was during CV-19 and it just depended on who they sent - some were great and others not so much. I know they were having a staffing shortage in my area.

Mixed bag is a great way to describe it. Rather than going into a long winded rant, let me just say it sucked for my mother, and was OK for my father. I dealt with a for profit Hospice organization for my father which I felt was tacky and cold. Once he was moved from the hospital to the Hospice facility he was well cared for, he didn't last 24 hours there. My mother died, in her hospital room which they "called it a Hospice room" when it became apparent she was going to die shortly. Her end of life care sucked!!!!! I was scrambling to get the totally ****ty staff to do their job.

 

[Shannow]

My Wife has spent a large part of her life in aged and community care...need nursing quals (EN as a minimum), and lucky to get $25/hr is the typical experience ($21.38 is min wage)...physically had to quit the profession, as it's becoming more heavy lifting and cheap cleaning...her (congenital heart issue) stopped her, and then Cancer (successful treatment 'though) You drive yourself to your first contact, then claim mileage between contacts.

Can guarantee that these workers' hearts are in the right place.

She's now a qualified Death Doula, which she hopes to pursue after an internship, which was halted due to the virus controls, and the above issues.

That's a really interesting profession...

 

[Nick1994]

The article listed may as well have been about a pyramid scheme selling vitamin bars. It was 100% the opposite of my experience.

My grandfather came home from the hospital 9/2021 on Hospice. He was 100% bed-bound and I cared for him full time, he passed 6/2022. Hospice was wonderful. The RNs and CNAs were incredible. I can't thank them enough for what they did for him and my family. Truly angels.

 

[JimPghPA]

Hospice nurses and others in their group helped a lot in taking care of my mother from January 2022 until she passed away October 3, 2022. My siblings and I worked together to have someone with her at ALL TIMES. Mom never had to go to a nursing home and all of us worked together to give her the best posible care. She had a great life. It's hard to see someone you love pass, but it is comforting to know that she never had to go into a nursing home, and we gave her the best possible care.

 

[BigGeo]

My father is currently on hospice. He is comfortable, clean and in his own home(A high priority for me, similar to Jim in PA). The care, equipment and supplies from hospice have been 1st rate.

 

[chemman]

My aunt with Alzheimer's went into hospice about 5 months before she passed. The facility she was in tried pressuring me to use their preferred hospice provider, AseraCare, but I insisted on using the Volunteer Nurses of America (VNA) hospice service even as they threatened to discharge her to someplace else. I simply responded that I had already called the state's Health Department and was told that it was my choice and if they did not like it, they could talk to the Inspectors from the state's Health Department.

Anyway, the VNA hospice and personnel were wonderful. My aunt was visited by a hospice nurse almost every day and I was kept informed of my aunt's condition. My aunt was happy because she was able to drink as much Coca-Cola as she wanted!

If I ever need to use a hospice provider again, I will definitely try and use either VNA hospice or a locally owned hospice provider.

 

[97K15004WD]

As I mentioned before, my dad's experience was good with hospice. So, with a sample size of 1, we thought the experience would be similar for my mother. Not even close.

The workers came by twice a week, and brought a bag of meds they left in the refrigerator. Morphine, Tessalon Perles, and all other kinds of things. That was their version of "hospice care". Five minutes with her, five minutes with me, and they left. I had to feed my mom through her stomach tube, sponge bathe her, get her to the bathroom, etc. Then the diapers and everything else.

I called the hospice manager, was assured it would change. It didn't. We couldn't keep up with the level of care she required with four little kids in the house and had to admit her to the hospital. By the time I understood what was really going on, my mom passed in the hospital.

At the hospital, the nurses there told me what was most likely going on with the "hospice" care. Billing was for seven days, but they only came by for two. Me calling the manager gave them a heads up and bought them time - I believed the manager and was duped.

IMO, some things shouldn't be "for profit". Those "hospice" workers and their company made it a horrible experience for my mom and my family because of their greed and my misplaced trust. I learned an important lesson, but it cost my mom.

I still have the pain from it and always will. The pain my mother suffered, and all the tears we cried over that experience have given me memories that I hope no one else ever has.

The reason I posted that article was I don't want anyone to go through what my mom did. The care was ridiculously poor - and I suspect they were fully compensated for much better care than she received.

Taking advantage of people in bad circumstances (funerals, hospice, etc.) should be illegal, but in a lot of cases it's not.

It is just unethical and immoral - but doesn't break laws - and IMO that is wrong.

I get "buyer beware" and all that, but when emotionally compromised it is hard to make good, informed decisions - especially when there is a dearth of information or only one choice to begin with.