Why Can't She Stay Here? Getting Kicked Out of Inpatient Hospice

[CeciBean, ASN, RN]

I worked in home health from 1990-97. When I first started, home health and hospice were together.  There was a pretty seamless transition if one of our patients was made a hospice patient; they had the same nurse, the same aides, everything. They just had a different level of care. It was much more comfortable for them and their families. We would also get some patients who were admitted directly as hospice patients. At the time, we had 7 nurses in our agency who had regular teams plus a weekend and an evening nurse who covered most visits that occurred during those times. That meant basically that every nurse with a team of patients usually had one or two hospice patients in their patient load. We received regular inservices on hospice topics as well as on other home health topics, and it worked well for all of us. I felt then, and I still feel, that the worst thing Medicare ever did was to make hospice a separate entity. Our patients did too. We had instances where patients would refuse hospice care because they didn't want to change nurses and I can absolutely understand that. As nurses, we would have group discussions about our patients, especially about those who were near death. Those discussions helped us handle our own emotions, because of course we were often pretty attached to patients we'd had for a long time. But also, I think, as home health nurses in those days, we recognized that death is a part of life. Most of us in that agency were experienced and were not young so that may have helped. 

With respect to my own family, my experience was mostly positive. Both my parents lived into their 90s. My dad had dementia and had been hospitalized with pneumonia right after Christmas just before his 91st birthday.  We made him DNI at that time but did allow aggressive antibiotic treatment. (Since then, my brother, an internist, and I have agreed that we probably should have gone with supportive care and just let things run their course, but hindsight &c.) He got better and was sent home, but a couple of days later he fell and the home care aide couldn't get him up. At that point his doc and my brother decided he should go into the hospital and be admitted to rehab. Well, rehab, at a wonderful veteran's rehab center/nursing home, lasted exactly 3 days until he informed the therapist he wasn't going to do it...and when Dad said he wasn't going to do it, that meant he wasn't. So he was moved to the nursing home wing. Mom and the dog visited frequently. The last picture I have is of him asleep with the dog curled up beside him. He was DNR and died about a week later. Mom was able to stay home with live in help who became like family to all of us and still are. She declined slowly,  went into multi-infarct dementia, and died at the age of 95, having been placed on home hospice about 3 months before her death. She had contracted some kind of viral respiratory thing and had stopped eating and drinking. I was not able to be there, but my daughter and her husband were with her. It was apparently very peaceful. That's how I would wish to go.

[jeastridge, BSN, RN]

Thank you for sharing your story. Joy

[Nightshade1972]

On 11/19/2016 at 6:04 PM, .4** said:

For Veterans there is an option called the Veterans Foster Home Program and the VA contributes 1788.00 per month to assist. Unfortunately as a former Hospice Nurse I witnessed the suckiest pardon the word) Hospice Organization I have ever seen. They are located in Orlando FL. And are called Cornerstone. I was invited to a free luncheon at a reputable facilty but when I was told Cornerstone was sponsoring it I refused.

I think Cornerstone was the place that kept pestering us when my inlaws had their final illnesses.  My inlaws knew they were reaching a point that they could no longer live independently.  At the time, my wife traveled a lot for work.  With my inlaws' blessing, we started looking at retirement homes that offered progressive levels of care.  One of them was very aggressive about calling my inlaws' landline, our landline, and my wife's cellphone, constantly.  Couldn't have happened at a worse time--within weeks of each other, both my inlaws became ill and were hospitalized, and my FIL ultimately passed away.  No matter how many times I told Cornerstone, when they called (multiple times a day) that now was not a good time, and we'd get a hold of them if/when we were interested, so please take our names off their calling list, they kept calling. 

I finally looked up their facility online, clicked the Contact Us box, and sent them a very detailed email asking them, for the umpteenth time, to please stop calling us.  I also told them that, if they didn't, they could expect to hear from our attorney when we filed charges against them for harassment, and intentional infliction of emotional distress.

That's what it took to finally make them stop.  The director of the facility responded personally to my email, and promised that no one from his facility would call us again.  Fortunately, he kept his word.

 

My FIL died in the hospital.  Many of my wife's cousins are nurses, and at least one is also married to a doctor.  After my FIL passed away, my MIL moved in with her sister, in a different city, where many of my wife's cousins also lived and practiced.  They were able to give her hospice care at her sister's house, until she passed away a few months later.