When Is It Time to Call Hospice?

Samira K. Beckwith, LCSW, FACHE, President and CEO, Hope Hospice Updated
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Does in-home hospice care require a caregiver? I live in an independent living facility.
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Does hospice require that a person have a caregiver to start hospice services? My sister can still perform activities of daily living right now. She is in an independent living facility.
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I used the at-home service provided by The Connecticut Hospice for the last year of my mother's life. Not only did her nurse come regularly once a week but also whenever I needed him to come because of a question or something happening. They also provided 2 hours a day of CNA care and a social worker came about weekly to talk to me. They also had a wellness program for both care recipients and caregivers at their on site facility. My only complaint is that their bereavement department is not very good and was not very responsive to my grief. No place is perfect but they are awesome for what I needed them to be - my mother's hospice.

(As an aside, I actually called a different hospice not quite as local to me when I really needed someone to talk to and that person told me I could call whenever I needed to.)
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My husband is 82 and has COPD. I invited Hospice to come as much for me as for him. As things stand now, he enjoys a high quality of life. His last flare up was over a year ago. As his chief cook and bottle washer I want to make sure he stays as well as possible for as long as possible. I was concerned as much for myself as for him; I feel I need support in looking after him. The RN who came was delighted with our situation and praised us for being proactive. When my sisters in law received draconian diagnoses no one thought it was important to have Hospice, including the health professionals around us. I insisted on having Hospice care and they were with us through thick and thin. I am eternally grateful for their help and care. We got kudos for having an entry ramp into our home, for having accessibility to the walk in shower, an air filter and no rugs to trip us. We got extra points for making sure my husband has clean, filtered drinking water, eats a vegetable rich diet, gets adequate sleep and activity. I felt immense relief for having engaged these folks early on because I have confidence that they will be my partner as his disease progresses. In my mind, it's the patient and the family who will know when it is time to engage the help Hospice can be.
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My brother was put in hospice. his son said that two doctors had gotten together and suggested it was time for him to go to hospice, but come to find out it wasn't a doctor it was a nurse practitioner can they make that decision?
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GA Hospice has been a lifesaver for me. Helping my Husband with great care and treatment during his illness.
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Thank you BritChris. I feel that I let my father down. I let those vultures of that death-driven hospice suck me into their deceptive hospice residence. The nurse said my father was in pain and moaning. Looking back I see that he knew he was being drugged. A healthy person would have died in 10 days if they were sedated and not able to drink or eat. This is very disturbing that this happened to my father. This happens a lot in the USA. I regret the day that I called this hospice. I wish I could have seen clearly what they were doing to my father and been able to get him out of there and treated with appropriate healthcare. Healthcare that is pro-life, respectful and dignified. I am so sorry Dad. I miss and love you!
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I am so sorry for your loss. I can understand your bitterness towards hospice. The one I use provides only home care and I control the meds. That perhaps makes a difference. Too, I got into the program very early when my husband was still ambulatory but limited. Again, I am sorry at the way things turned out for you.
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I guess I cannot get past how my father and his two daughters were treated by a hospice with a residence. He was taken straight to the residence, we thought the nurse was knowledgeable and that he would be taken care of and leave for home on Sunday. He was admitted on a Friday. No, they did not tell him or his daughters that they were planning for his death and proceeded to drug him to death. He died Sunday night, 9 days later. They lied to us the whole time. He should never have been admitted. He should have gone to acute care hospital. He had heart disease. Please protect your elders! Don't have the regret that I did not do right by my father. The hospice did what they wanted. Their philosophy was pure death. No celebrate life as they advertise.
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Can a person be under hospice and not be dying? Yes - sort of. There are two levels of hospice care. One is end of life care that is for six months but can be extended. That is when death is imminent. As I posted earlier, my husband has already been under it for five months. He may well meet the six month "deadline" but not necessarily. All hospice has to prove to satisfy Medicare is that he is still under decline.
When we applied to hospice we expected him to be under palliative care which is a three year program which offers less assistance but does send a RN once a week and a bath aide (not sure how often). My husband has had chronic pain almost all his life and his tolerance for opioids was significant and hospice felt it could be managed better under their end of life program. Let hospice make their decision based on your needs. It is only a title. They are not going to toss my husband to the wolves if he is still alive after six months.
It has been mentioned previously but it is important enough to say again. Go with a not for profit hospice and you will be able to trust them. Our hospice has been super, generous with their supplies and time. They are available 24 hours a day and I've had to call them at unusual times.
Good luck in your decision. It is tough going with hospice but it really is not as final as people imagine. Two of my caregivers were upset when I chose hospice because they expected him to die immediately. Nothing is further from the truth. Hospice makes sure my husband's pain is controlled but they do not force me to keep him doped up, etc. My caregivers have totally changed their attitude as they have witnessed caring and professional attitudes from the hospice staff.
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