If a patient and her doctor agree that hospice is the right choice, you can help her choose a hospice agency. Her doctor or a hospital or nursing facility discharge planner may recommend one. If the patient lives in a senior residence or an assisted living or long-term care facility, the facility can recommend one or more hospice agencies. You can also check our local guide to find out about all nearby hospice agencies or by contacting your state's hospice association; you can get the number from the Hospice Association of America.
- Once a patient chooses a hospice agency, she must formally enroll in it. The agency handles all the paperwork. If she isn't physically or mentally able to give consent, enrollment must be made by the person who has power of attorney or other authority over the patient's healthcare decisions.
- The hospice agency begins by setting up a care plan. This includes discussions with the patient and with any family members or others who will be regularly providing her with full-time care. It also involves a visit wherever she'll be staying. There's usually a flurry of activity when the hospice agency first gets involved, with various hospice staff visiting the patient and assessing her needs. Then a regular routine is established, with one or more aides visiting on a schedule. This schedule changes as the patient's needs change.
- It's important to speak up about things you like and don't like about the care a patient is receiving, including asking the agency to send (or not send) one aide or another if the patient develops a strong preference. You may even switch to another agency altogether if you or the person you're caring for isn't satisfied with the hospice care she's receiving.
- A patient's need for hospice is evaluated after 90 days to determine if it's still appropriate. It's evaluated again at the end of another 90 days and can be continued in 60-day segments after that. Although intended only for a six-month period, hospice often lasts longer than that because many people live longer than the original six-month prognosis.
Thank you for pointing out that choosing hospice care is other than 'giving' up. You still receive 'palliative' care (comfort care). This is what I will choose when my time comes, and it is in all my paperwork as well.
The comments are also very good.
Very informative. Thanks!
There is Hospice and there is Hospice! In between ther is Palliative care all of it depending on where you are in terms of your health and ability to care for your self. If you are doing better Palliative care where ever you want it can be available but it is intended to monitor and identify in advance any new problem. The "team" provides a tremendous amount of in sight and direction for thr family and the patient. If he gets worse for a while and with the hope they can keep him out of the hospital Hospice can be the next step but not the final step because that "team" is working to improve the patients well being. People need to become aware of the differences in Hospice and the benefits if you qualify. It too is paid for.
Thanks for the article....I only knew that hospice was for the dying...no details. Thanks again. Your articles are certainly helpful. s
Yes,I had no insight about hospice care other than it was for the dying. Thank you!
Hi the kingbird, Thank you for your comment. Sorry to hear that we weren't able to answer your question in this article. If you'd like, you can post your question in our Ask & Answer section, here: ( http://www.caring.com/ask ). I hope that helps. Take care -- Emily | Community Manager
I still did not get an answer as to whether Hospice could turn down a patient due to the cost of the patient's mantenance medications. Without my Lovenox blood thinner, I would be comitting suicide to intentionally try to live without it. That would be the same as just quitting taking all medications at all. Luckily, I have found a primary physician that is on the board of the local Hospice to care for me. He uses the best available practices of normal care, gets me a pain medication that is sufficient for now, and trys to manage the other problems as they come up. I still think that surgery to take the massive fluid packs out of my abdomen would make me more comfortable, but the surgeons won't touch me for fear that I would not survive the surgery. It would be a lot more humane to try to take them out than my having to live with them from day to day. They currently have my urianry system in such a pressure that I have to have a drain line 24-7 from now on, and movement of my bowells is a terriable pain that is barely tolerable!These "packs" are like tumors taki9ng up space in my abdomen so much that they are clearly visable to the outside of my abdomen.
I agree with the lackluster experience of home hospice. My mother passed away three years ago of pancreatic cancer. We were so unprepared for what was facing us, giving the medications, baths, etc. Now my dad has been told he has pancreatic cancer and we are facing the same situation. We are urgently looking for a hospice facility in our area but there's not very many and the hospital is pushing their vendor of choice which is an in home hospice. I guess we are wimps but we can't go through this again.
I had read about how great hospice was and what a great experience everyone had. Our experience was lackluster to say the least. Mom was put into hospice while I was out of town..little did we know she would decline so rapidly. As a result the nurse would come to the apt and fill the "sticks" of morphine but it was my best friend who had to administer them. Something she never expected when i asked her to come and check up on Mom. And when Mom came up out of her morphine coma... the hospice nurse, on the phone, told us we were crazy, my Mother was in a coma...like H she was, she was looking me straight in the eyes, up on her elbows, choking on her own fluids and asking for help. Luckily the nurse from her independent living facility was in and ran to her side and administered the proper increase in morphine Mom needed. Hospice for my family was incompetent at best. They left a group of unskilled family and friends to tend to Mom, Mom's morphine was running out and we called at 5 AM, by 9 AM we had heard nothing back, by 10 we were out of Morphine and FINALLY at 11 the hospice nurse arrived.... it was one of the most traumatic events I had to face over the last 2 1/2 years of Mom's non-smokers lung cancer.
As a Hospice volunteer, for a number of years, I have experienced the wonderful care both the patient and the families have received. One lady had just had major surgery, I asked her daughter to speak to her general practitioner about Mom's illness and instead of more surger the next day she went home to her loving family. A grand daughter involved Her in the planning of her wedding and she enjoyed all the attention by family members. Later, her other, who was an RN became the director of the Hospice. At the end of our lives many people want this type of interaction, whereas for others they want the steral atmosphere of the hospital. My job as a Discharge Manager & Social Services Manager brought me even more understanding of Hospice. The patient had advanced CA, was moved to a the hospital close to his home for Hospice care. While speaking to his wife she told me this was the first time she would be living in their home alone. I suggested Life Line which would contact a neighbor if she needed help.
Hi the kingbird, Great question! If you'd like, you can post your question in our Ask & Answer section, located here: ( http://www.caring.com/ask ). Take care -- Emily | Community Manager
This is really a question to the finances of Hospice. I am terminal with congestive heart failure. My organs have begun to slow toward stopping working. I take a med. called Lovenox (a blood thinner) and when they came upon this medication in my list of meds., they all of a suddent couldn't take me into Hospice because they thought I would last longer than 6 months. In truth, the biggest drawback to my getting into Hospice, was the cost of that medication (over $1500 per month). I understand that Hospice has to pay for all medicines while in Hospice. Is this correct? Are they allowed to pick and choose their patients like that?:
My husband is in Hospice care now in a memory support unit. He is receiving excellent care and it has been a great relief to me. It has also caused the staff in the facility to step up their efforts now that hospice workers are in and out at odd times. He has a terminal illness, Lewy Body Alzheimer's. He probably will not die in the the 90 day period but the Lewy Body makes the physical decline very rapid. After a hospital visit and two emergercy room visits, where after 4 hours each they found nothing, I did not want him to go through that again. I just wanted him to live out the rest of his life in as much peace as possible.
That comment is correct. Aides cannot administer medications. They can however remind pts to take their oral meds. Also, in regards to how long hospice continues, patients sign up for six months at a time. If the pt needs to continue longer they can sign up again. In some cases pts can be on hospice services for several years. On the counseling services, hospice will normally assist the family, namely the spouse or significant other for 13 months following the death of the patient. They contact family on special occasions such as holidays, birthdays anniversaries etc. This is the time when the family need extra emotional support.
On page 2, under Aides, you are WRONG that aides will administer pain and/or other medications, or else they are violating the law !! In any state, only licensed nurses are allowed to administer/prepare/give any medication, especially pain medication. PLEASE correct this !!