I was told that if my Mother (who has dementia and has just gotten out of the hospital for pneumonia) goes on Hospice (and she is in a skilled nursing facility) that everything would be the same except that she would have a person come out to feed her and another person to come out to sit with her. Besides all that would be done as usual, in the nursing facility. Is this true of Hospice now days? Years ago hospice was totally end of life. They told me it would be more help. Can anyone clue me in on the Hospice that they are doing in 2019.
In order to qualify for hospice, the patient has to be diagnosed as terminally ill, with a life expectancy of six months or less; however they can be renewed in hospice if they survive for the entire six months and are still diagnosed as terminal. Agreeing to hospice means that the patient declines to seek any treatment that would be life-saving and instead only receives treatment to relieve pain and maintain as much comfort as possible while the illness takes its course. So in that regard it is very much end of life care, but it is also very helpful—my mom had CNAs who came to bathe her weekly, she was prescribed very strong pain medication that was delivered to the front door, there were social workers who came to visit, a nurse came to see her once per week, and when she was in the facility, there were volunteers offering things like aromatherapy and reflexology or massage. I found it kind of ironic seeing the striking difference in the level of care from how she was treated in the hospital by doctors and nurses alike, and kind of felt like, okay so an old woman has to be dying to be worthy of high quality care?
My mom had never been officially diagnosed with cancer, but had a colon tumor that, although it biopsied as benign only a month earlier, the doctors decided must be malignant when I asked about hospice, and that was the diagnosis they used. That seemed questionable to me, but at the same time she was very clearly terminal, weighing under 70 lbs, constantly needing blood transfusions, unable to walk, etc. She spent only 2-3 weeks officially on hospice care before she passed away in August 2018.
Best of luck if you and she choose to pursue this. It’s an intense decision and time, and very hard to accept, but it is invaluable in terms of the level of care and the help transitioning.
It is Better Now, Yes, There are Facilities to take them to and Great Help.
My father had recurring uti's - almost one a month for his last year - the hospital felt his kidneys were being compromised - even tho there were no signs of such - and maybe I did not follow through but took their word for it - which to this day feel guilty about. The hospital suggested "end of life care" and offered hospice to come in.
My 98 year old father - who did not have anyhing else wrong with him - no high blood pressure - no high cholestrol - no diseases -no dementia - just a urinary tract infection once a month - had hospice come in.
Yes they took good care of him, answered all our questions but he just deteriorated within a month's time - stopped eating - would not get out of bed - and died in six weeks time !
I know you are saying - he was 98 - but he was a very well 98 - he got up every morning - had his coffee -ate breakfast - read the paper - sat out on his deck on nice sunny days -had lunch - watched the ballgames - took a nap - people would visit - ate his supper - went to bed ! My brother was there to take care of him - cook for him - watch tv with him - keep him company - he was fine!
Hospice - End of Life -
sorry for going on - it's only been a few months since he passed.
I hope this helps.
Typically, a patient needs a 6 month prognosis to have hospice covered by Medicare.
It’s not unusual for patients who are not actively dying to ‘graduate’ from hospice. Often, their multiple docs have them on so many meds that, once all the pointless meds are discontinued, they improve and their prognosis improves.
A person does have to have a Life limiting condition, be seeking no further treatment for that illness. Generally 6 months is a guideline but and this is a big BUT..
As long as there is a continued, documented decline a person can remain on Hospice. My Husband was on Hospice for 3 years.
With Hospice you and your Mom will have a Social Worker, a Chaplain if you want, a CNA that will bathe, dress and possibly feed your Mom. They will not be there all day but probably an hour or so a few times a week. (The bath that they get from Hospice CNA will be in place of the bath that the Nursing facility would have given they will not get more than the necessary baths)
You will also have the ability to request volunteers. Someone that can come in and visit, they can do no hands on help though. A variety or therapies can be requested like music, art, pet, massage (usually Reiki therapy)
Hospice is focused on Pain and symptom management so the entire goal will be to keep your Mom comfortable and to help you through what may be a difficult time.
If you know that name of the Hospice that will be helping your Mom go to their website and see what they are all about, see what they offer, see how they can help your Mom and your family.
I could not have done what I did for my Husband without the help, support, supplies, equipment and education that Hospice provided me.
Tammy Fox
Palliative care is one of the most important functions of Hospice. With the personal physician's knowledge, they are permitted to administer medications and drugs to alleviate the pain and discomfort many end-of-life patients experience that, by law, the regular physician is not.
It is always advisable to investigate each individual Hospice being considered as they are not all of the same caliber. The one I am associated with is 5-star rated in every aspect, and had I been aware of their services years ago when my mother was dying, I would certainly have enlisted their help.
Be mindful with every new admission to the hospital, a new DNR must be reordered, even if the nursing home has them DNR status. they are supposed to treat DNR patients in hospitals, but not intubate and shock--no cardiopulmonary resuscitation (CPR). BUT many doctors and nurses still believe DNR means just let them die without conservative treatment. You will be surprised.
I don't know if you mom can still swallow or tends to aspirate but think carefully when that option about feeding tube pops up. Feeding tubes have their own set of complications--they can get infected or pulled out. and they can still vomit if inserted in the stomach. If in the intestines they can get dumping syndrome which means diarrhea and more urinary tract infections (UTIs). Feeding tubes are a surgical operation and if pulled out she MUST go back to the ER and it must be reinserted within 24 hours or it will require another surgery. If she is on hospice they will frown on feeding tubes. Not sure if they will approve of that. Still, that's a hurdle you will have to face. Feeding tubes should only be considered as a last resort..but if she's at end stage is it worth putting her through all of that. that's something you have to think about and your family.
My mom is at end-stage Alzheimer's and I care for her at home..she's a living nightmare when she catches a cold. Near end of life they get frequent infections. The slightest cold will quickly become an upper respiratory infection (URI) and pneumonia. Chances are they will be on antibiotics every month or two for either an URI or UTI their immune system is so compromised. because she is on hospice I don't have to drive her to a doctor to get her routine medications ordered--right now she is so weak I cannot get her into the car. so this is the only way I can get her meds reordered. Now your mom is in a nursing home and they have their own doctors/nurse practitioners so getting routine meds ordered is no issue.
So think twice before going back to the nursing home with hospice. If on hospice they most likely will not send your mom to the hospital.
the nursing home is already providing doctors and nurses aides to care for her, so there is no advantage going on hospice just for that.
(This of course will change over time.) She resides in a NH that doubles as a skilled nursing facility. Hospice is still used for end of life care but it's also meant to help the staff at a NH keep an extra pair of eyes on the patient. Everything does stay the same, just with an extra pair of helping hands.
Be aware that some meds maybe stopped. She may not be sent to the hospital or go to doctors. Check this out.
They will come in an evaluate her after 3 months, or something like that. If there is anything that may look threatening, they will let the doctor know, and they will evaluate you mom. If they do graduate her, you can ask for palliative care.
My own mom received hospice only once, completed with her death; we could see her decline over 3 years in a well-regulated SNF and we knew she reached the end. Hospice told us there would be extra help for her and there was. Their care for our family was phenomenal after our mother died, with memorials monthly for those who'd passed, annually one year later, and numerous answered phone calls directly after the event. This was 2015.