Hospice Left Us Helpless

This is where I reveal how completely clueless I was. Obviously, I had no experience with this kind of situation, so I feel that this information is important to share because there may be others out there who are similarly uninformed.

When Dave first mentioned involving hospice in his care, my reaction was “We are not there yet.” We were on one of our walks and discussed what that would mean. A few short days later, hospice was brought up at Dave’s appointment, and it seemed like the right thing to do.

We didn’t exactly start off on the right foot. Hospice was scheduled to come at 11AM Tuesday morning. At 9AM, I got a phone call saying that something had come up so they needed to reschedule for 2PM. As the morning went on, we managed to get Dave scheduled for a procedure at the hospital so I ended up rescheduling again for later that evening.

The person who came out to enroll Dave was pleasant enough. She went through the paperwork and made a point of mentioning that with Capital Caring everything is computerized which means anyone who came out to the house would have access to Dave’s information. She also said that we would get a daily phone call checking in on him. Dave requested a hospital bed and oxygen. She called the order in and also said that she thought having a nurse visit that evening would be beneficial to assess his oxygen needs.

The on-call nurse seemed very competent. She went through Dave’s medical history, medications etc. Since Dave was having trouble speaking this was pretty exhausting for him, and I did much of the talking. She measured his oxygen levels and said that she would put in an order for morphine along with another medication which would ease any digestive issues caused by the morphine. Dave really liked her and hoped she would be his regular nurse.

The next morning (Wednesday) we got a call from the person who was to be Dave’s regular nurse. She wanted to come out and see him. Dave was pretty agitated and mentioned if he had to go through all of the history etc again that he was going to be pissed off. I reassured him that because of the computerization that would not be necessary.

The new nurse arrived while I was out picking up one of the kids. When I walked in the house, Dave was visible unhappy. Sure enough they were going through all of his information again from the beginning. When I asked why she didn’t have access to the information we provided the night before, she said that it wasn’t saved in the system. When I asked about the morphine, she said it hadn’t been ordered. She checked Dave’s oxygen levels, gave him a little advice about concentrating on breathing through his nose, and was on her way. Her plan was to visit again the following Monday.

As the next few days went on, Dave’s swelling in his legs and feet became significantly worse. I called and asked if they had a wedge of some sort that he could use to elevate his feet. We called and requested a chair for the shower. We also asked for some pads to protect his ears from the plastic tubing from the nasal canullas. No suggestions were made to us as to what equipment we might be helpful. At no point did anyone look at the room where Dave was staying or the bathroom he was using and assess our needs. And I didn’t know to ask. Additionally, when I went to the pharmacy to pick up Dave’s meds, only the morphine had been ordered.

On Saturday morning I went to the swim meet with the kids. Dave’s family came over to be with him. I got a text from Jeff midmorning saying that Dave was having trouble with his breathing so they were going to have a nurse come out and see him. I asked Jeff to ask the nurse if we could increase Dave’s Ativan dose since I thought his anxiety was also making it hard for him to breath. I think the kids and I got home around noon. The nurse arrived around 2PM. So a call saying that Dave was having difficulty with his breathing resulted in a nurse visit almost 4 hours later. A different nurse came out and once again she seemed competent enough. She increased his dose of morphine, increased his oxygen intake levels on the machine and said we could give him Ativan every four hours. At this point Dave’s dad (I think) requested a walker since it was exhausting for Dave to be on his feet.

By Sunday morning, Dave had had several episodes of apnea. Once again we placed a call to Capital Caring. The same nurse from the previous day came out. She asked if we had liquid Ativan to give Dave. We did not. No one had suggested that we needed it or ordered it. When his case nurse made his list of medications, I showed her the bottles. She saw that we had Ativan in pill form and never mentioned a liquid alternative. At this point the nurse told us that we should take Dave to the hospital because we didn’t have what we needed to keep him comfortable. Although I was initially resistant, this was exactly the right decision. I thought going to the hospital would mean measures that I knew Dave didn’t want. It turns out that they did what we, with the help of hospice, couldn’t do. They made him comfortable.

At the hospital Dave had an oxygen mask. I remember looking at him and thinking “Why the heck didn’t hospice give him a mask?” When Dave was short of breath, his instinct was to breath through his mouth. The nurse noticed this at her visit – after all she talked to him about concentrating on breathing through his nose. This was helpful advice when he was cognizant enough to think about it. When he was out of it, that oxygen mask sure would have been so much better. It never occurred to me until I saw him in the hospital with the mask on, but it should have occurred to one of the three nurses we saw.

In the end, Dave was exactly where he needed to be. Reston Hospital was everything I thought hospice would be. They made him comfortable, treated him with kindness and respect, and gave us the space we needed. Capital Caring has never followed up with me at all. When the nurse walked out of our house Sunday morning as the EMTs rushed in, that was the last I saw or heard of them. As for those daily phone calls we were promised, we never received one. We were utterly unprepared for what was happening and had almost no guidance from them. I would be very reluctant to use hospice again. If I have to, I now have more knowledge and could be a better advocate. But I thought that was the point of their service. Hospice did not give us relief at all.


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21 thoughts on “Hospice Left Us Helpless

  1. I’m so sorry it turned out like this, Robyn. My experiences with Capital Caring — first, in early 2006 with my mother-in-law, and again three years ago with a close friend, both of whom struggled with the end-stages of cancer while being admitted to Capital Caring’s Arlington facility during their final days — were fairly positive. The staff at the Arlington facility were awesome, caring and often knew what I was trying to ask when I wasn’t thinking straight. (I’m wondering if the difference might be in the in-home care vs. being in the Arlington facility?)

    Unfortunately for you and your family, I’m sure it was difficult to gauge how quickly Dave’s decline was coming in early June. We planned to go the same route as you did with in-home hospice care with my mother-in-law…except they never even got the chance to do an initial visit, and her decline came on even faster than Dave’s. In any event, I’m sorry, and you’re right that there should’ve been more guidance on meds and, ultimately, expectations.

    • i think there is a difference between the facility and in-home care. unfortunately for us the facility was full at the time. i hope that most peoples’ experiences are more like yours. i just don’t want anyone else to be so woefully ill prepared like we were.

  2. I am so sorry Dave, you, and the family and such a rotten experience with Hospice. Seems like everything that could have gone wrong went wrong. What you went through is similar to the experience my mom had at a rehab facility so I have the same bitterness towards those facilities now. However, when Andre’s Dad passed two years ago Hospice was amazing not only to his Dad but family and how they handled his pain and prepared and counseled everyone through the later stages. It pains me to hear how awful Dave’s last few days were for him and all of you and I hope that you have voiced your situation to someone so that another family’s experience is not duplicated. I am so sorry to hear all that you went through!

    • i am sorry for your mom’s experience but glad that andre’s dad had a helpful experience with hospice. that is what i was hoping it would be. at first i thought it was because dave’s decline was so fast, but i realized that some patient’s go quickly. they should be prepared for all cases.

      i shared our experience with a friend who also happens to be a nurse at the cancer center dave went to. she reached out to her contacts at hospice who assured her they would contact me. they have not. so not i am just trying to spread the word so others don’t have our experience and are better equipped with what to ask for etc.

  3. They were very disorganized and did not even return phone calls until I called them FIVE times. Agree with all you said. They were useless and Reston Hospital was fantastic. Ann

  4. THANK YOU so very much for sharing this story…..It is stories like this that help others out….Grateful that you are doing this…..Lisa

  5. I hate that on top of everything else you were going through, hospice didn’t live up to its name. I’m glad you shared your experience so that others can learn from it, though … you’re exactly right; you have to know SOMETHING to be able to advocate for the one you love. Not having any basis for comparison makes it that much more difficult.

  6. Thanks for sharing this information, and for sharing everything you have been going through. It is truly helpful to read about your experience. Our family has had very positive experiences with hospice — but they were all in hospice facilities out of town and with older people. Best wishes to your family!

    • it seems that the positive experiences with hospice far outweigh the negative. at least from what i am hearing. thank goodness. i wouldn’t want anyone else to have our experience. or worse. i am glad to hear that you have had good experiences. thanks for your supportive comments. i appreciate it.

  7. So glad to hear that Reston Hospital worked out well just when you needed something to work out well.

    It’s exhausting to give feedback to someone who did not meet your needs. No one can blame you for just putting it behind you.

    Thanks for all you are teaching us through your posts.

    • reston hospital was the answer to our prayers. truly. the staff there are incredible.

      i got a call tonight from capital caring and have to gear up to return the phone call. it is tiring to rehash everything. especially when it can’t change the outcome. but hopefully it will prevent the same mistakes from happening again.

  8. I have been wondering if you would share this story since you eluded to it in an earlier post. I think we would all be clueless if we’d never gone through something like this before. Hospice is supposed to fill in the blanks without you having to ask. At least that’s what I would expect them to do. Even though we’ve never met, I am proud of you for processing they way you are. Hopefully it’s helping you, but I have to believe its helping others as well.

    • thank you. i do think this space helps me process things and i am so hopeful that it is helping someone else. and i agree with you completely – “hospice is supposed to fill in the blanks without you having to ask”. perfectly stated.

  9. Wow — what a disappointing interaction with Hospice — for an organization that touts itself to help you “make the most of every moment”, it’s even more incredulous. As you always so eloquently share your experiences and feelings, Robyn, Capital “Caring” needs to hear your story — not sure who called you, but I’d want to speak with someone pretty high up in the organization…not an intake/customer service person, but someone who should…no must…listen to you about Dave. With Hospice care, “should have” is never supposed to be part of the equation…thankfully, you all received the care and support you needed at Reston Hospital. xoxoxo

  10. I have begun to write to you so many times…please know, as pain-filled as of your posts are, I am thankful to be reading them. My husband too has a terminal illness…slow moving but we understand there is no cure or recovery for him. Along our path of dealing with his illness, I have learned there are so many questions to be asked but because this is all knew to your family, like yours, it is hard to know what those questions even are. It also seems there are many “professionals” that truly don’t know their profession so it is frustrating to all involved. Again, I am sorry for your tremendous loss but so appreciate all of the honesty & wisdom you share with us.

    • thank you for your message. i am so sorry to hear that you and your husband are walking this challenging path. it seems that we gain a lot of the knowledge we need as we go and then (i hope) never need it again. i suppose that is part of the reason that i blog about it. maybe hopefully what we have learned can help someone else. keeping you and your husband in my thoughts and hopeful that just the right treatment will come along. xo

  11. I’m sorry that your experience with hospice was poor. My husband was with Kaiser Permanente Hospice in-home care in California and they were outstanding . From the beginning of my husbands hospice care until he passed away , we had the same hospice nurse Jodi , she was kind , caring and never hurried , taking time to explain each new medication (pain meds / blood pressure / blood thinners etc) . Jodi also helped us to understand and explained what to expect in the weeks/ days to come. Kaiser also provided all and any equipment that we needed or requested (the fully operational hospital bed , bed pan , walker , oxygen etc arrived the same day it was ordered by the hospice nurse Jodi ! )
    Kaiser also provided bed baths 3 times a week by trained caring staff . Jodi always had suggestions regarding my husbands pain management and obtaining his medications was never a problem , they were always available at the time given by Jodi at the pharmacy.
    Kaiser called me once a month for an entire year after my husband passed away , just to check on how we were doing (they also provide group grief counseling ).

    I’m glad that Dave finally received the care he so desperately needed once in hospital.
    Thank you for sharing these intimate moments of your life.

  12. I have followed your story and am sorry for the hospice challenges on top of the heartache your family is experiencing. Hospice has many options, which I learned the hard way with my Dad last year. The services they offer range from full-time care to part-time care to keeping your family member in a facility to offering information but no services. It is hard to know the questions to ask and what your needs may be so for those who will need help in the future, ask lots of questions to everyone involved in the care of your family member or friend. Read, talk to people who have traveled this journey and don’t be afraid to push to get the info you need. I also found nurses whose specialty is end of life care. The nurse we found through an agency was wonderful and was the best medical advocate for my Dad and us. She knew the questions to ask, what to watch for in my Dad and helped us navigate the final days.

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