It isn’t until you walk in another’s shoes that you really know what something feels like. As most of you know my husband was on hospice services recently and died. Here are some thoughts after being on the other side of hospice, on the receiving side.
*Once we get up the courage to call hospice, we want to see you immediately. Actually, we needed to see you, hear your guidance and advice, and receive your services yesterday. Families tend to be overwhelmed and have trouble coping when they reach the point of asking for help. Hospice is that help. Don’t make us wait. Within 24 hours, make that much anticipated home visit.
*Get to know us and hear our story before you introduce all the required paperwork that the computer needs signatures for. After that initial show of computer and official business NEVER let us see your computer again. You can take discrete notes, then get in your car, drive around the corner or go to a 7/11 parking lot and do the charting there. Your goal is to create a relationship that brings comfort, guidance, and education. It is not to have an air of “officialdom.” You can be professional, open, direct, easily understood, instructional, and gentle without a computer in front of you. It is difficult to get to friendship, personhood, and support with a computer on your lap.
*Dying and death calls are the goal of the work hospice does. Everything, all your words and services, lead up to the moment of death. The patient’s death is what your work is all about, YET it seems that fewer and fewer hospices are actually with the family at the moment of death.
*A pronouncement visit is not a ten minute, in the door, look at the body and out the door visit. It is a “Tell me what happened. How are you doing? What are you thinking?” kind of visit. It is time to straighten the room, tidy the body and gather those present for a final goodbye. It is a "wait for the funeral home to come" visit. While waiting, use that time to offer guidance and comfort. When the funeral home leaves with the body, straighten the room, make the bed, put a memento on the pillow and leave the light on. This entire visit is creating a sacred finish to a life. Through this support you are creating a sacred memory the family will carry with them forever. If there was no guiding support during the actual death, then this kind of death call will help ease the pain the experience has created and provide the kind of support and guidance hospice is intended to provide. It is what we do—-comfort.
*I would like to see the primary care nurse, social worker, and even the home health aide make a home visit towards the end of the week following the death. This will give closure for the family with the hospice staff. It is an opportunity to ask final questions, to express thoughts about all that has happened and to say goodbye. This will give closure to not just the family of the patient, but closure to the nurse, social worker, and home health aide so they can move on to the next and the next.
As I do, I am giving you something to think about.
Something More… about Being On The Receiving Side of Hospice
Hospice workers face unique challenges as they care for the dying and their famiies. Support and self care are crucial to these remarkable caregivers. I encourage hospice agencies to have an in-service with their team at least once a year where they watch my dvd/vimeo film, Care For The Caregiver together. Ideally each member of the team would be given the booklet You Need Care Too to further support the team.
23 comments
loved all your words so true
I think i tried my best to do as you said
my admits took a very long time and even death visits were at times extensively long
much of my documentation was done at home later in quiet I wrote quik notes otherwise
although my tablet would ask me to explain why i went over the expected amount of time
thankfully I had a wonderful DOO and she never questioned it. It is how I have to be a nurse
if I am constrained by time limits I feel I cant show or give my true care Thankfully I was PRN
but the full timers that to me is so sad because they have to get so much done
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BK Books replied:
Joanna, I am glad you worked by your heart time instead of business time. Yes, it is a delicate balance these days but we in end of life care must think of the people and service we are providing not just the bottom dollar line. Blessings to you in the work you are doing. Barbara
I lost whatever this article was about other than the title.
My hospice team did a good enough job except for the fact that since medicaid/medicare didn’t pay for 24 hr service, it was up to me to give mom the medication that put her to sleep. Now I have to deal with the conflicting feelings that maybe I did kill my mother. Sure, the staff assured me the only reason such a small bit of medication kept mom asleep was because her body was already showing signs of breaking down and not properly processing food or medication. She had Parkinson’s and Dementia and was a difficult woman. But had I known the medication would put her to sleep until the end, I feel maybe I should’ve just stopped it and record a good bye from her. So many if’s or I should’ve/could’ve that keep going through me as I mourn my mom’s death. Instead, I feel the hospice kept encouraging me to increase the dosage to make sure she wasn’t in any discomfort, but was she really or was I just setting her up to die? Mom had a DNR so, we didn’t feed her intravenously. I kept administering the medication and the hours got closer and closer and through 24/7 for 8 days until she finally passed. And to add to my guilt, my sister who never bothered to come and visit is telling everyone I killed my mother. Yes, I know I gave my mother the best care, even if our tempers clashed, even if I had difficulty dealing with her broken mind, I still gave her everything I could, and yet, I feel the guilt because I kept giving her the medication until she took her last breath. Yes, I’ve been going to counseling and although I’m doing better, every now and then, the doubt creeps in and the pain hits me all over again. Her words “kill me” still resound in my head because she was miserable at times. And to me, all I keep thinking is that yes, Hospice facilitated her death, knowingly or unknowingly I don’t know. They say one thing and I feel another. Maybe I just needed them to say "yes, let’s stop the medication and see how she feels, instead of saying “it’s up to you” when at that time, it was hard to think. I needed someone stronger than me to make that decision for me, but no, since it was up to me, then it’s up to me to deal with the pain because I can no longer bring her back. A book detailing this probability of events would’ve helped me with my decision but, there was no such book at the time, and I don’t know if there is one out there yet. So I deal and pray no one else has to feel this way, like they are the one that killed their parent by giving them the death medicine. I knew deep down that once morphine starts the patients die, yet, at that time, the thought seemed so far away that it was hard for me to remember it. So I pray and I ask her to speak to me in my dreams, to tell me she forgives me if I did something wrong. I miss her and the pain persists.
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BK Books replied:
Fran, I’m sorry you had such a difficult experience with hospice and that you didn’t get the guidance and support from them that you could have. Blessing! Barbara
As much as I realize the computer world has taken over, I feel it was one of the most difficult times in my Hospice career to switch to them. It slowed down everything along with taking away so many of the personal attributes of being with my patients. Even though I kept the computer as far away as possible, to wait and do all the charting later elongated the day considerably. However, I always felt it wasn’t about me and I wanted to give 100% when I was in the home. And waiting for the funeral home is truly a must. It is such a vulnerable time, and those moments can make or break an experience for
the family. They need that tender care during that time of waiting….no matter how long it takes. There are so many more thoughts, but I don’t want to belabor the details. But all Hospice personnel, be kind, tender, and take time with your families on each visit. You will learn so much from them and it will help you on your journey with them. Teach them, let them tell their beautiful stories, sit with them in the hard times. And when you put your head on your pillow after arriving back home, you will have a deep peace in your heart that you did all you could. And they will never forget.
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BK Books replied:
Hi Karen, my thoughts exactly. Thank you for sharing. Blessings to you in the work you are doing. Barbara
I LOVE THIS. It’s the perfect information in just the right length, said so succinctly and beautifully. Necessary.
Thank you and I hope your grieving journey is going as kindly and lovingly as possible.
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BK Books replied:
Hi Kelly, thank you for your kind, reinforcing words. Blessings! Barbara
Very helpful. In my work I see more and more hospices losing sight of the patient/family need – focusing on the paperwork and compliance. A big YES when I finished reading. Blessings.
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BK Books replied:
Hi Crispin, thanks for the confirmation. Blessings to you in the work you are doing. Barbara
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