I just got a crash course in hospice care as my parents decided my father should come home with the help of hospice. Given that we did not foresee this as something we would need for dad, we did not do any homework on the subject. We were working under assumptions we had based on our limited experience with hospice care. I am going to relate our story, give my impressions and my suggestions in the hopes that others who face the decision of involving hospice in the end care of their loved ones will have some things to consider and think about before making decisions. Telling this story will also help me reflect on how the last 36 hours of our lives have gone and what we did right and what we should have done differently.
The first thing to understand is that you as a patient or as family/caregivers have the right to make choices. Those choices may have a variety of impacts; financial, emotional, and even physical. The more informed you can be about your options, the better you will feel about making choices. Looking back, we had no clue what we were getting ourselves into.
Our story begins around 9 am on Thursday, April 3rd with a phone call to my cell phone from my sister who was at the hospital with my father. It was not a panicked call, but I could tell by her voice that it was important. She told me that dad wanted to come home. That he had spoken to the doctor about coming home. The doctor told him he could arrange for hospice to take him home and dad said that is what he wanted. My sister told both my father and the doctor to put on the brakes and that this was not a decision my father was going to make on his own. My sister explained that the doctor did not feel any further treatment would be helpful and that given my father’s wishes to go home, it would be best for him to do so. I got enough information from her to briefly speak with my mother and let her know we needed to go to the hospital right now to sort this all out. When we got to the hospital, mom went in and talked with dad for quite a long time while my sister and I waited outside. We wanted to give them their space to be husband and wife and make some decisions that would be best for them. In my opinion, this was mistake number one. I know my dad wanted to leave the hospital and I know that my mother wanted to do what would be best for my father, but in hindsight leaving the hospital might not have been what would be best for my father. I suppose that in time I may be proven wrong on this current assumption. I think it would have been better to tell dad that while we understood that he wanted to come home, he would have to wait just a bit until we could figure out what that really meant. I think my parents made a decision that was based solely on emotion.
They decided they would go ahead with the plan to come home under hospice care. The doctor had left instructions with the nurse to contact him after the family had made a decision and that is what the nurse did. The doctor came to discuss the matter with us. He explained everything they had done while he was in the hospital. He explained what diagnosis they had come up with and why. He explained that further care or further testing to come to a more accurate diagnosis would risk going against dad’s advanced directive. He explained that he would set the ball in motion and what would happen initially. He explained what he felt the prognosis is under home care with hospice. He was very compassionate and caring and we believe he had dad’s best interest in mind. He explained to mom that hospice could be done in the hospital or at home and asked if our decision was to bring dad home. We agreed that is what they had decided and he said his goodbye and put the plan in motion.
Shortly afterword a social worker came to the room with a list of hospice providers and asked us to choose which one we would like to use. This was red flag number two. We did not fully understand that hospice was not just one organization. There was a list of a dozen organizations that provide hospice care. We did have the where-with-all to ask a few questions. I asked what the difference is between these different hospice choices. The answer was, they are different companies. I restated my question, asking what is the difference in the kinds of care they provide. The answer was they provide hospice care. I asked the same question in yet a different way. How do we know which one to choose. The answer was that you interview different ones to determine the one that you prefer. Now I should have honed in on this answer instead of just dismissing it as another vague answer. This is important. You can talk to representatives from each hospice. What we didn’t know is what were the questions we were supposed to ask to help us determine which hospice organization was the right one for us. We thought we were under the gun to make this choice quickly given that dad was so adamant about leaving the hospital. We ended up choosing the one that the hospital recommended, which happened to have an office in the hospital. I am not saying we chose the wrong one. I have no way of knowing if we chose the wrong one because we didn’t shop around. We should have. We should have said, “Okay dad, you want to go home, but it may take a day or two because we need to figure out what options we have.” Instead we allowed emotion to rule over intellect and good judgement.
Once we chose the hospice organization, the hospital social worker notified the hospice staff and was told that a representative would be down to dad’s room in just a little while. When the hospice rep showed up, she explained at a high level what hospice is, how they operate and what they would handle. They told us what we needed to do to prepare for this transition to hospice care. It was during this process that we found out that care was not round the clock like it is in the hospital. That when a hospice nurse is not at the house, we would have to tend to the patient. This concerned us because our prior experience with hospice was round the clock care. The rep explained that round the clock care would be provided when the patient got to a point where it was needed. “Okay, we thought. Perhaps we won’t be left holding the bag.” I left the hospital to re-arrange the furniture in the living room to accommodate the equipment that would be brought in while my mother and sister stayed with my father to finish dealing with the hospice rep. Once the I’s were dotted and the T’s were crossed, the hospice organization did indeed take care of the details. They ordered the equipment and scheduled transportation for dad from the hospital to the house. We really did not have to deal with any of that, but that also left us a little in the dark. It turned out that we would have to wait until the next day (Friday) to bring dad home as the equipment would not be delivered until the next morning. Dad was okay with waiting one more day now that he knew he was coming home.
Friday morning we received a call from the hospital letting us know that dad’s discharge would happen at 12:30 pm and that everything was ready to go. The equipment at home was all setup and I headed down to the hospital to gather dad’s things while they discharged him and mom would wait at home for the hospice nurse and dad’s arrival. Hospice picked up the medications that are part of the emergency kit (they called it an E-Kit) which included things like morphine and lorazepam. I picked up the rest of the medications that the doctor had ordered and headed home. When I got home, one of the hospice nurses was there already and another one arrived shortly after. They explained that they were the admitting nurses and that their job was to give us all the instructions we would need, to go over the medications and the equipment and to get dad settled in. This is about the time that panic set in for mom, she came to the realization that in a short while the admitting nurses would leave. She again expressed that she thought hospice would be here around the clock and the admitting nurses explained that they would be here all the time once dad reached the crisis care stage. This is important to note, at least for this hospice organization and it may be the same for other organizations. Crisis care is the point at which we, as the primary care givers, are unable to manage the patient’s needs. I am not sure still what crisis care will look like, however they stated that the nursing staff will determine when that we have reached that stage. They assured us that we do have help 24/7 by way of a phone number and that since they are local they could be here quickly if we needed them. Panic set in again when I asked when a nurse will be here after they leave. They said that a nurse would be here on Monday. OH HELL NO! Important to note, avoid getting into hospice care on a Friday afternoon if possible. They said they could request a nurse come this weekend sometime and I asked them to please do that. At the very least to come in and check if we are doing things correctly.
One of the nurses left and the other stayed with us for a couple hours. As she was getting ready to leave, panic for my parents again set in. The nurse was doing a last check on my dad and he was complaining that he was having trouble breathing. She told him that his vitals would good and that the trouble he was having was because he was getting anxious. She explained that it was still an hour and a half away from the next sedative and that he needed to focus on breathing slowly through his nose and out his mouth. Well, this did not sit well with him and he told her so. He said that they have been telling him to do this slow breathing thing for 2 weeks now that that it was bullshit. He started getting quite belligerent and somewhat foul in his language. This set mom off and she had herself a little panic attack. She said she cannot do this. That she just can’t. That they made a mistake and he needs to go back to the hospital. The nurse explained that was not really an option. That he could go into a private facility, but that the hospital hospice was not an option anymore. I honestly don’t know what would prevent us from just calling 911 and having him sent back to the hospital, but I don’t think that would be a good thing to do. The nurse explained that we can do this. That mom needed to calm down and relax. In the meantime dad was still carrying on about how he shouldn’t have come home. That he couldn’t breath. The nurse was able to calm them both down and then she left. I distracted dad for a bit by giving him his breathing treatment. It just so happened it was long enough for the morphine to kick in (pill form) and he has been sleeping since. Mom and I talked a bit about how we would handle this. We talked about how long this might take and that she was worried she could not handle this if it dragged on for weeks. I told her that I don’t think we have to worry about it being weeks. I don’t know if I could take weeks of this either.
I think everyone has calmed down and we have had about two hours of quiet around here now. This is incredibly difficult and it would have been much easier on all of us if dad has gone through hospice at the hospital. I am unsure if coming home is best for dad, I really hope it is.
So some lessons learned:
* Do not make this decision quickly. Even if it seems like it has to be done quickly, chances a pretty high that there is time to make a more informed decision.
* Understand what you are getting yourself into with at home hospice care. It is not going to be easy or fun and it certainly isn’t going to look pretty. Perhaps it would be different if dad were out of it, but when he is lucid… man is it rough.
* Understand that unless you are in that crisis care phase, you are potentially going to have to do the unpleasant tasks like cleaning up after a bowel movement (which I still have no clue how I will get through that if/when it happens) and you will be responsible for the medicines and all the other care duties that hospital staff were performing while you sat and visited with your loved one.
* Understand that it will be disruptive to the home. Furniture will need to be moved. People’s schedules/routines will have to chance. There is no ‘leaving the hospital’ when the hospital is at home.
* Understand that the decision to do home hospice care is not just about the patient. You really have to factor in the people who will be providing care when nursing staff is not around. My mother would not be able to do this on her own.
* There will be A LOT of information coming your way during the transition. Be prepared for a barrage of thing happening. There will be little rest during the transition and for some time afterwards.
I am sure there is more to say on this topic, but I think it is time to go check on mom and dad to see if they need anything. I have more thoughts on things I have learned today and will maybe write them up later if I am not too tired. Basically about how dad is doing and thoughts on people calling or visiting based on what I have seen today.
Well I think that sums up the day. We shall see what fun stuff tomorrow brings!