True Stories about signing up for hospice care
I have learned through experience that too many people wait until they are in crisis mode to enter into hospice care. The majority of patients who sign up for hospice live between one and fourteen days.
During one of George’s many hospital stays, he shared a room with an older man. It was very late at night when George was finally assigned the room. The hushed tones of the family visiting their father indicated to me that he was not doing well.
The following morning when I arrived in George’s room, the daughter was sitting at the foot of the bed. I approached her and offered my prayers to her father. She told me that “all he wanted to do was go home to die”, yet the nurses and doctors appeared with regularity to check his vitals, offer medications, etc. As his health care proxy, she would tell them he did not want certain meds or have his vitals checked so often. Yet they still would speak to him to ask him the same questions. He still was “with it”, yet he was tired and did not always tell them his wishes.
I explained to the daughter that this is how hospitals are. They will keep things going, keep administering treatments, because that is what they are trained to do. I indicated that if he truly “just wanted to go home”, then she needed to go out to the nurses’ station and ask them to contact hospice. I explained how things work. She left the room and came back about thirty minutes later. Within an hour, an admissions representative from hospice was in the room. They had already ordered a hospital bed and oxygen tank to be delivered to the house and were arranging for transportation to the home. Within about two hours, this man and his daughter were on the way home. Home, where he wanted to be, to die in peace. She was so grateful to me for the help.
Why do people not seek hospice?
I believe that one of the issues is lack of information. Physicians may not be equipped with the information they need or, if they do they do not pass the information along. Nursing staff usually know about hospice, but it is likely not their place to speak of it.
There is a lot of stigma about the term “hospice”. There is fear associated with it. Hospice, to many, equates to “death sentence”. And most people do not want to admit they are dying, even when it is evident. They especially don’t want to hear that they have six months or less to live.
When this happens, they are postponing the inevitable and will not be able to experience all that hospice has to offer not only themselves but their loved ones. As stated earlier in my piece, so many patients do not go on hospice until they are clearly in their last hours or days.
Personal experience: In March of 2019, my husband George was admitted to the hospital once again. We had been in and out of the emergency room nearly every two weeks since mid-November. We were tired and exhausted from the constant trips, the long wait’s in the ER and longer waits to get a bed if it was determined he needed to stay a day, two or more.
George was now at the point where he had a bowel blockage caused by tumors and needed to receive IV nutrition as well as a drain from his stomach so as not to cause further issues. We knew there would be no more surgeries or treatment. We had known that for at least eight months. This latest development meant that we would need nursing care to come to our home to help set up a pump for the IV and to show me how to set everything up and use it properly.
I nearly begged George to go on hospice at that point, but he was reticent. He did not want to be given an “end date” of six months. He did know from conversations with our doctor and with counselors that hospice does not have a definitive six month diagnosis. Yet he could not bring himself to go on hospice yet.
We went home with a home health care service, not of our choosing but of the hospital. While at first they seemed really good, when it was time for the nurse to schedule time with us to change a dressing that HAD to be changed, I received a phone call from her stating “George is on my schedule for tomorrow but I am fully booked.” As I tried to offer alternative dates or times, all I heard was “I’m off that day” or “I’m booked that day, too.” Really? He’s been assigned a nurse who is calling to tell me that she is not available for the next three days – and that is my problem, how???? I was infuriated!
As it turns out, George ended up back in the hospital again with a severe infection. This time, I was more insistent with him. I told him that I couldn’t go back to that home health agency as they clearly were not a fit for us. I explained that he (George) had already determined which hospice agency he wanted to use and could we PLEASE call them and go home with hospice care. He finally conceded and I put the plan into motion. Had I not taken the initiative, we may not have ended up with the agency we wanted.
Starting on hospice was the best thing! Even though I still needed to do so many things at home, I felt better supported by all the team members involved with our case.
Hospice offers peace of mind for patients and caregivers alike! Do not be afraid to ask about receiving hospice care.