Being on the Receiving Side of Hospice

Thank you Barbara. My mother recently died and we had a wonderful small hospice team come daily for the 2 weeks she had their service. The nurse and health aide happened to arrive moments after she peacefully died. My aunt and I were there by her side and she opened her eyes and looked right at us with a clarity we hadn’t seen in a week and we were able to tell her we’ll loved her and then she left her body. It was so comforting to have both the f them show up and just be with us as we came to understand she’s died. I held her wrist and checked her pulse and they settled into the room with us to offer presence and comfort. They helped me give her a final bath and change her. It was so important for me to be with her to give this final act of loving care to her since her body had been through so much the last couple months. It was their presence and attention to what was happening that made the difference. I sat with my moms body in my aunts room for a long while while they took care of details and that time was so precious for me. As a death doula I had worn my hat advocating for my mom in the hospital and with my family but I loved being cared for as a grieving daughter.
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BK Books replied:
Mia, thank you so much for sharing your experience. What your hospice team did for you is what I want all hospice teams to do. Blessings to you and your family. Barbara

Barbara, I have been so inspired by your books and thankful, but was so saddened to hear that your husband passed away. I am so sorry!

In 1984, my Dad was dying of Pancreatic cancer. My mom and siblings called in Hospice to care for him at my sister’s home. My sister and I were at his side when he passed away around 6:00 am. The Hospice nurse who was about to go off duty called every nurse who had cared for my Dad on different shifts to tell them my Dad had just passed away, and every one of them showed up to comfort us almost immediately. They stayed for a very long time. I was living in another state and was dreading leaving my family to go home and back to work after the funeral where my Dad’s death meant nothing to them. The Hospice nurses reassured me they would be there for me as well as for my Mom and siblings and gave me their phone numbers. They told me to call them anytime. Ironically, my Dad died on my sister’s birthday and I will always see it as a birthday gift from God as were all those Hospice nurses and doctor.

Thank you so much for all the work you do to enlighten those who aren’t familiar with the work that Hospice does.

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BK Books replied:
Nancy, thank you for sharing. Your hospice did what I want all hospices to do, be there when the families need them the most. Blessings to you and your family. Barbara

As a hospice aid, I agree with you Barbara, that an “after death” visit would help us (aids and nurses), too. When I lose a patient that that I’ve grown very close to, I often mourn alone. Most of the time, I am aware when it’s probably my last visit, the last time I will bathe them. Often they are minimally responsive but I talk to them, tell them how much I care, and place a gentle kiss on their hand or forehead. The kind your mom might give you at bedtime as a child. Then I watch for the work email saying the patient has passed. It’s hard. I want to hug the family that I’ve grown close to. I want to be with others who mourn the passing of this special soul. An after death visit would be a good thing.

Thank you for your post. When my wife died, our hospice nurse arrived quickly, confirmed the peaceful death, and provided comfort to me. He called the funeral home and explained next steps.
I am very grateful for the support we had from hospice and have no major criticisms.
I feel a need to comment about the use of technology. Like it or not, we live in a world of increasing use of computers, monitors, cell phones, et al. They are useful tools. Our hospice nurse recorded vital signs and processed orders for us on his computer, mostly in our home, and I found nothing wrong with that. I think it helped him to know that he had captured all the required data that helped him do his job.
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BK Books replied:
Mark, I am pleased to hear you had a positive hospice experience. Yes, computers have become part of the world we operate in. I just don’t want the focus on filling out required documentation to be at the expense of personal interactions. Blessings! Barbara

Hi Barbara: I love this post. You are the perfect person to comment on the other side of death and dying. I am a Soul Midwife/doula for the dying and hospice volunteer. I know my side of the story but you had a direct experience on the other side and I truly value your take on being on the receiving end of care. Western medicine has the potential of being more business and less personal these days. I see that with my own care providers. My hope and expectation is that a dying person (and their families) need extra special care delivered in a compassionate and personal manner.
I know the majority of Hospice nurses deliver this care time after time but this is a message that needs repeating. Take notes but leave the tablet for after the visit. Thank you for your valued input.
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BK Books replied:
Hi Dawn, Thank you for your kind words. You and I are so on the same page in our thinking about end of life care. Blessings to you in the work you are doing. Barbara

Barbara you said it perfectly; Death and dying calls are the goal of hospice. Everything we do is leading up to the time of death. I’ve always felt this is such a important time to be with the family and the person who has passed…. this time allows closure for me, as well as those individuals, I feel so privileged to have served.
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BK Books replied:
Robin, we are certainly thinking the same way. Blessings to you in the work you are doing. Barbara

More wisdom that comes straight from your heart, as well as from your own personal experience. Your gifts to the hospice team and to the families that we serve are priceless, dear Barbara, and with humble hearts, we thank you ♥
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BK Books replied:
Hi Marty, you are my go to person for grief guidance. Always feels good to hear from you. Blessings! Barbara

Sorry, I must have hit enter by mistake. I keep close watch and listen to you Barbara! Thank you ! This particular post touched me deeply. I feel called to this! It allows me to love and feel fulfilled. I am going on 75 and going strong, holding hands and opening my heart! I feel a kindred spirit with you and just know this is important work when it is done with love.

My husband died on Hospice and I was alone with him… no children, no family. They were wonderful! But after he died, I never saw the team again. He died on a Saturday so ‘the team’ was off". I remember how alone I felt! They had been so good to us but now they were gone.
Fast forward 3+ years: I was hired as a Hospice Chaplain…my dream job and I loved every minute of it! But it did not work out. I have moved on and am working as an End of Life Doula. I don’t have to worry about hours clocked, or length of visits. When my client is at End of Life, I am there for whatever the need is.
The institutiamilization
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BK Books replied:
Hi Linda, I am glad you found your “place” in working with end of life. In my heart I am a EOL doula. It is the work I did for many years. It is what hospice started out to be. My blessings to you! Barbara

Barbara, your willingness to share,having just experienced the walk in shoes that many of us never want to wear, is remarkable.
I am a daughter to two ageing parents, an observer, a life learner.
I thank you for your generosity, especially in those things that can be so personal and sometimes difficult.
Love to you,
Inge
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BK Books replied:
Hi Inge, Thank you for your kind words. Blessings! Barbara

My heart goes out to you in your loss. I have been a caregiver for both of my parents who died on hospice and I understand the points you make. Subsequently, I worked for a hospice that mandated having a computer open to chart during the visit, even during an admission, in an effort to force nurses to see more patients during a shift. While they talk a good game, their focus is not the patient, but on the bottom line. I struggled with this and left that employment for this and many other reasons. However some hospices do mandate charting during a visit. Medicare only pays for time at the bedside.
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BK Books replied:
Hi Lori, I’m sorry you worked for a more business focused hospice. There are heart centered hospices you just have to search for them. Blessings! Barbara

Barbara, so sorry for your loss.
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BK Books replied:
Thank you, Diana. Blessings! Barbara

You are so right. I lost my husband 16 years ago due to a brain tumor. Hospice was there, but did not give any spiritual support. I’m currently volunteering at hospice in Anderson sc and making bereavement calls with hospice in NY. I do believe the spiritual part should be for the client but more for the caregiver. They take more than people realize they take. Paperwork can wait until later, but people need the support at the time of death, not answering questions.
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BK Books replied:
Hi Diana, I’m sorry you did not receive the care you were wanting when your husband was in hospice. I hope you found support in your grief journey—from church and /or community. Blessings! Barbara

When my daughter, Laura died
8 1/2 years ago under Hospice care, I was so dissolutioned by the lack of care provided. Laura was married, so she and her husband were the ones who made the arrangements with hospice. She died at home, they did provide a hospital bed, oxygen and other end of life comfort items. It was the 4th of July weekend that her dying process took place. As her body got weaker, her bowels began to move. We were mortified as to how to clean her up, so Laura’s husband called Hospice to see if someine could come to help us. He was told no nurse was available, so she explained what we, as her family, needed to do to ckean her up each time it happened. It was awful to say the least because we were already grieving and in a state of shock. Then when Laura died 2 days later, a nurse came to take care of the arrangements. She was not unkind, but had to find every Rx pill that had been dispensed. Laura’s husband was looking through cupboards trying to locate a couple of unaccounted for pills which he finally found in the bathroom medicine cabinet. The nurse asked me to witness her flushing the pills down the toilet. So through my tears, I watched her. The whole experience was horrible and I vowed never to have to deal with Hospice again.
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BK Books replied:
Oh Joyce, I am so sorry. Your experience was not what hospice is supposed to be. I hope you reported this to the Hospice director and even to medicare.gov. We need to let our opinion of care be known. It is how we can get change so others recieve better care. Blessings! Barbara

Barbara, first my sympathies to you on the loss of your husband and partner. Second, I celebrate your courage and voice to speak now from experience. I was a hospital chaplain when my husband was dying with hospice services. Experience is a worthy teacher and my own experience changed and informed how I ministered to patients and families. I have used your booklets/information for years to support end of life care. Thank you for your ministry.
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BK Books replied:
Jill, you are so right. It really isn’t until we walk in similar shoes that we truly comprehend the entirety of something, the mental and the emotional. It can make us better caregivers. Blessings to you in the work you are doing. Barbara

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

Barbara, you said this so very elegantly. I agree with what you wrote – it’s as if the hospice service I was trained in many years ago, is not part of the practice anymore. They do such good work, but it just ends bluntly, in my experience.
Thank you for bringing this to our attention…and confirming that I’m not just imagining this.
with warm regards and may 2024 bring you joy and peace, even as you hold grief and loss.
love, always.
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BK Books replied:
Mirinda, Yes, hospice services have changed over the years. I think when it was outside of the medical model it was able to provide more personalized, less time focused, care. The change in hospice care opened the door to end of life doulas who are filling the void today’s hospice care leaves. Blessings to you in the work you are doing. Barbara

I agree in spades about not having the computer during the visits. However, management STRESSED that we should be documenting in the home during the visit. It takes more time to document after the visit, but better for our families. Management seems to forget the really important part of doing this work, being present during a really difficult time.
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BK Books replied:
Hi Amy, I know it is frustrating when those caring patients and those working in the offices are not on the same page. Blessings to you in the work you are doing. Barbara

Barabara, thank you for being so transparent and sharing your heart and recognizing loopholes in this vocation. I appreciate VERY MUCH what you wrote in the above blog. Blessings to you …
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BK Books replied:
Hi Dora, thank you for your words. Blessings! Barbara