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My father had an episode of uncontrolled pain, anxiety and worsening disorientation. I called the hospice 800 number and asked Dad's nurse to come or call back. It was a miserable 3 hours for both Dad and I until all the meds I gave finally got control and he was able to rest. I never heard from the nurse. I don't know what he was involved in but I don't think no response is acceptable. I worked as an RN for 39 years and not responding to a patient's pain issue was not an option for me. Am I being too critical?

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No your not being too critical. That Nurse is on 24/7 call and you should have had her personal phone number or at least a number where there was a real person at the other end to leave a message with. You know, like a Drs answering service. If ur Nurse was not available, another nurse should have been her/his backup. I doubt if a Hospice agency has only one nurse. I would call the Hospice director or whoever is above her and put in a complaint. If they aren't sympathetic, find another Hospice.
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I would think that the 800 number is the corporaye office, not the line to the nurse.

I hope you can clarify today what number you can call to get a live RN on the line.

If that service is not available from this hospice organization, I would switch immediately.
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Our main hospice nurse gave me her cell phone number and responded quickly when I called. When she was off duty I called the office number and always received a call back quickly from the on call nurse. Please confirm you’re calling the best number and ask how to prevent this issue again. If you don’t get good answers it’s time to change agencies. Wishing you both peace
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No you are not being too critical. Hospice is supposed to be available 24/7, and are to respond in a timely manner. The fact that you called an 800 number concerns me though. You should have a local number that they gave you at the start of your fathers care with them, to call with any issues, concerns or questions. Make sure they give you that number, because what you have described is unacceptable. And if needed you can change hospice agencies, as they're not all created equal.
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garylee Apr 2021
Some of the larger Hospice's use an 800 number instead of a local number as all calls are routed through a call center then either emailed or a text to the appropriate party.
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Speak to the nurse about us, not to us.
I can't know, as a nurse, what the situation with the pain meds is, but clearly they are not being given in sufficient amounts or in time frame to prevent the severity you were dealing with.
Speak with doctor in Hospice about what to do about breakthrough pain you are dealing with now.
As you say, you cannot know why you weren't answered, so do ask.
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I'm sorry for your father's difficult time with pain and disorientation, and that you had to deal with it as an emergency. Things are different during the pandemic, but you should get call-backs in emergencies. You need back-up numbers, too. The 800 number should be a back-up, but do they have a hotline? As suggested below, get a telephone number for your hospice caregiver. Also, they should tell you what you can expect from them. Are they supposed to be coming in daily to check up on your father and to give him his meds?
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Our experience with hospice couldn’t have been better. We had emergencies arise where I was unsure how to handle a problem. Our nurse left her cell number and asked that I only call it after 9 pm for emergencies. There’s a hospice nurse available every evening and twice we saw them. I’d think a nurse could at least send a text stating she would contact you ASAP but dealing with an emergency or pass on your info to home office. When my dad was transitioning of course, and twice after falls when very sore, she said call her at any time. SHE wanted to be with us b/c my dad knew her and trusted her. He had cancer and AZ. A couple times I got texts back from our nurse telling me to calm down, whatever was happening was normal, and not to be a “helicopter” daughter b/c I was overreacting. She was right. We trusted her and she never let us down. I’d contact his doctor and ask for clarification and let him or her know how alone, scared and uncomfortable you and your parent were. I hope it’s resolved quickly and you never experience that again.
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Have you spoken to the manager? You may want to consider getting another hospice. Very easy to do. Just sign a piece of paper to revoke their services, and get another one. You do not need a doctor's order since once on hospice, always on it unless they are no longer considered eligible with each 6 month check up. My mom was on hospice for 2 years.

I fired two hospices until I found the one I really liked.
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NO you’re not being critical. I would go to next level of supervision and state your displeasure with non-response so they are aware. Not necessarily to get nurse in trouble understanding they are short staffed and overwhelmed but also you don’t want to be in that situation again.
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It is NEVER acceptable to have no response.
I would call the Hospice and ask to talk to the Care Team Manager and explain the situation.
No you are not being critical.
Giving the benefit of doubt until you call and ask what happened you never know if the nurse was involved in an accident on the way to your house. Or the nurse did call the doctor to get authorization to either increase medication or another medication and the doctor did not respond. Or any number of things BUT even if any of those did occur YOU should have been kept informed about what was going on.
Hospice should know about the breakdown in communication.
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I agree it is not acceptable for the hospice nurse not to call back. Depending on your Dad’s insurance many carriers also provide for a Nurse Hot Line. (like AARP.) Is this available to you as a backup if the hospice nurse does not readily respond? You would need to explain what medications he was taking and his current medical conditions, but it is better than nothing. Alternatively, may be you should review other hospice agencies in your area as a replacement service to the current hospice provider.
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NEVER acceptable. What struck me is that the contact number is a toll free rather than local to where you live. Toll free speaks to me of being a large FOR profit organization. I would find a NON-profit Hospice nearby and fire the other one.
Not calling back is the antithesis of what Hospice stands for in the treatment of people with life-limiting disease to ease pain and anxiety while also supporting family. When the current agency is fired, let them know in no uncertain terms why.

This is a time for support, symptom relief and to take away as many stressors as possible for the family. Trust your gut, it did you well for your 39 years! (I've got 50 under my belt, part of which was as a Hospice RN).
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Grandma1954 Apr 2021
The Hospice I used and Volunteer for has both a local and a Toll Free Number. The calls go to the same place it just makes it easier for some people to call so they do not have to pay for the call.
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Not too critical.
There should be a line you can reach an actual person at 24/7.
Period.
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LoveLea Apr 2021
Seems that they’d have a 24/7 on-call number that caregivers could call. My mom’s hospice does and promptly answers at any hour you call. On top of that, they will even listen to your crying when you feel like you want to give up.
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I don't think you're being too critical at all, but if it had been me I wouldn't have left it at the one message. Is this the only means you have of communicating with the hospice team? - because *that* I would certainly consider unacceptable.
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There are myriad reasons why you didn't get a call back: phone may have not been working, phone may have been misplaced (they do fall out of pockets and bags), nurse on duty may have had his/her own emergency or health issue (we're human too)... None of these reasons solve your problem - a real problem with a client. I would talk to the administrators of the hospice agency. Tell them your situation and the lack of response by hospice nurse. You should have more than 1 phone number or way of contacting hospice. Letting them know your communication problem, helps them to find ways to be better at doing their job.

Please give them another chance if this was a one time incident. If you continue having communication problems, you may wish to switch providers.
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No response at all is not acceptable, although a lengthy delay is common in many hospice situations. With my husband's Hospice, I was frequently frightened by an immediate crisis and was frustrated by waiting hours for a callback and then being given quite useless suggestions about how to deal with the
problem. There may be Hospice companies that do a better job;. We liked and appreciated the Hospice nurse who visited twice a week to take vitals and refills medicines, but we did not have any help with difficult situations.
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We encountered slow response and no response many times with the for-profit hospice that served my mother. I was told by family that just because the hospice we used for mil here (not-for-profit) handled things better, to keep my nose out of their business five hours away and let dad handle it. (BIG mistake on my part.)

You need to notify a supervisor asap of what transpired. If there is no satisfactory resolution, look for another hospice. I regret that I didn't encourage a different hospice agency be considered.

Also, did you give the meds in the refrigerator kit? Usually the physical response to those was within fifteen minutes when I administered to my mil. I'm sorry your dad struggled for so long and that you had to watch that.
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No, you should report the Nurse and see about getting a different one and you should also tell them you want extra pain meds just in case this happens again your Dad doesn't have to be in pain.

That's what Hospice is supposed to be all about, to keep the dying person comfortable!
If you don't get any satisfaction, you should change Hospice Care.

Let them know that if they do nothing about what happened.

Then follow thru, change Hospice provider, there are many to choose from.

Prayers
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NO
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No it is not acceptable that you did not get a call back.

But I want to mention that there have been outage issues with big companies that use manage phone systems. I am not saying this is the situation with your company, but at mine we had two regional offices that were not getting their messages for 2 weeks.

When you follow up with the company please let us know what their reasons were for not replying. And ask for a local/direct line to the nurse so this does not happen again.
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Absolutely not acceptable. Fire the hospice company and bring in another one.

This happened to me with the first hospice company I had for my dad (Vitas). They didn't return phone calls, they chewed me out for requesting to change the time for a medical procedure so my dad could see his granddaughter for the last time, and the social worker told me "This isn't about you" when I asked if there were any kind of support services for the family. That was the final straw.

I called another company, they made all the arrangements to deliver the exact equipment my dad had received from Vitas as theirs was being picked up, and my dad was inconvenienced for a total of 45 minutes. (He just rested on his regular bed until the new hospital bed was brought in.)

This was the end of my dad's life, and I wasn't going to be my usual "mistakes happen" person and forgive the gaffes of the hospice company. I didn't have time for mistakes, and firing that company was the best thing I did. The new company's nurses were true angels, and when I called to say I just couldn't do it anymore, a nurse was there within two hours, and we weren't left alone until my dad passed about 24 hours later.
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No, not at all. Change to a different Hospice. Not acceptable!
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Imho, this is UNACCEPTABLE. They Hospice nurse should have responded.
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Edit: *The* Hospice nurse should have responded.
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That really surprises me ! I’ve had hospice care for family members , they were so good and caring . But there’s always that very few you can’t count on and don’t need to be kept as a hospice caregiver. I’m so sorry your father and you had to go through that . Be sure to report her to the agency they will look into why she didn’t respond or have another team member call you . Stay on top
of it though it’s important to always let
nurses know you are watching over his care all the time too. God bless 🙏🙏🙏
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The hospice our family used for my father, always called back. I don't think you are being too critical. We had a number to call if we needed assistance, also had a ph# for nurse and LPN.
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Have you been able to talk to Hospice about this?
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I would find a different Hospice Service? I know there are more than one in any given area. Investigate, and when you find one, be honest and tell them why you are looking.

Then I would write a letter to the Hospice Service you have and register a complaint. It does not have to be nasty, but honest and complete.

Hoping Dad is doing better. Take a long breath and rest yourself. This was totally irresponsible of the Hospice Service
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No that is not acceptable. The nurse may have been working in a difficult situation, and could not respond right away (it always seems forever when you are alone and scared with someone’s care). But no call is not acceptable. It is the reason you have hospice.
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