Hospice is a wonderful resource in the vast majority of end-of-life situations. They comfort and counsel, provide pain relief, and offer the patient and family both physical and psychosocial care. But every now and again, a patient slips through the cracks in the system and doesn't get the care they need when they need it most. Here's what happened when hospice failed my family.
"Do not go gently into that good night...Rage, rage against the dying of the light."
That was my husband's philosophy after being diagnosed with pancreatic cancer in the summer of 2013. He'd fought bravely for two and a half years, and most of that time had been good. But the drugs his oncologist gave him had failed, and there were no other options than to go on strong chemotherapy, which the doctor admitted would only prolong his life for a few months and make him miserable in the meantime.
Faced with these horrible circumstances, Will and I broached the subject of hospice. Having worked closely with the various agencies in our area, I was quite impressed with their services and had learned a lot about end-of-life care. It was awful to think of Will as needing hospice, but his prognosis was so grim that it seemed entirely appropriate. He agreed readily, and so began his final odyssey.
It wasn't long before we discovered how wonderful our chosen hospice agency was. Will had a nurse and massage therapist, both of whom came once a week to check up on him and make sure we had adequate supplies. He also was given a comfort pack filled with drugs he might need for nausea, vomiting, pain and agitation. They didn't bring any morphine or Dilaudid because he wasn't close to dying at the time and was relatively comfortable, but promised they would when he needed it. So I never gave it a second thought.
Months passed, and although it was obvious that he was failing, Will remained pain-free...until that night.
It came on all of a sudden. He'd been having one of his bad days, but this was unlike anything he'd ever experienced before---a tearing, stabbing pain in his abdomen along with severe nausea and vomiting. My son, an LPN, grabbed the pain meds and antiemetics, and we gave him everything we had, to no avail. We called hospice so they could bring him the heavy-duty pain meds; unfortunately Will's nurse wasn't on call, so we ended up with another nurse who was clearly uninterested in driving the 25 miles to our home to deliver them. She warned us against calling 911 because he would be "kicked off hospice", but offered nothing of substance.
Meanwhile, my husband was crying in pain. This was a man who once broke an ankle as we were moving house and continued without stopping, never complaining, so we knew he was in desperate straits. By this time he was vomiting blood in large amounts and going into shock. We called hospice again, and this time the nurse advised us to admit him to the hospice house. It would be another two hours before he was transported, all without relief from the pain.
"Why do I have to suffer like this?" he cried out repeatedly, breaking my heart and making me feel helpless. I didn't have an answer.
At long last, the transport van arrived and we went to the hospice facility where nurses quickly prepared Versed and Dilaudid injections. It was still another hour or so until he got adequate relief, but the compassionate care he was given there stood in stark contrast with that of the on-call nurse. He passed away in the early morning hours, and thank God he was comfortable. But what he went through because of the unnecessary delay in pain relief is something that will haunt me the rest of my days.
After all was said and done, I reported these events to the grief counselor, who is still seeing me every few weeks to help me process what happened. Of course I will never know if or how that nurse was dealt with, but I felt better knowing that someone knew about it and had brought it to the attention of people who could actually do something to make sure it never happens again.
I don't blame the hospice agency; I blame the individual nurse. His own nurse would never have let Will suffer like that, and when his massage therapist heard about it she was appalled. They both came to his funeral and sent sympathy cards, and they are the ones I'll remember with love forever.
Yes, hospice is a wonderful thing, and I'm grateful for all the help my husband received prior to that last night of his life. But when hospice goes wrong, it goes terribly wrong, leaving survivors to deal not only with their loved one's death, but the awful feeling that they didn't do everything that could be done.
It's the hospice companies responsibility to see that this NEVER happens. The hospice companies policies made this situation possible. As a nurse, I have a responsibility to my patients to not only help them deal with their disease with all the tools and skill at my disposal, (sometimes under really daunting circumstances) but also to hold the company I work for accountable for their actions and omissions, just as I do myself. Its my own imperfections that most often keep me awake at night.
I know this is not a perfect world (Death itself makes that obvious), and pursuit of perfection is often a fools errand, but you have to try.
I'm really sorry for your loss. I'm glad the pain for him is over. Now its your turn to be taken care of.
Specializes in LTC, assisted living, med-surg, psych.
Wow...I am amazed at the outpouring of support and stories about negative hospice experiences. I had no idea that the problem of unprofessional nurses was somewhat common. It's oddly comforting to know I'm not alone, even as I ache for the patients and families who have been through unnecessary pain and suffering because somebody fell down on the job.
Yesterday I received a survey in the mail from the hospice agency. I will check off the boxes praising them, because other than that last night of my husband's life, the care was excellent. But I will also come down hard on that nurse, just as I did when I was talking with my grief counselor the first time she visited. There's plenty of room to write.
I agree with you! I have been "hospice faithful" for years, and like you, was blindsided by what I perceive as neglect (and worse in your situation). Ironically, the day I first responded to your post, I missed a follow up call from hospice. Now need to call back. My heart goes out to you. And, I still believe wholeheartedly in their mission, but hope they remain vigilant to those who don't uphold it.
I'm so sorry you and your family had to go through this horrible experience. I hope you are able to find comfort and healing. Sharing your experience has opened up an educational discussion that will have positive impact on many. We still have so much to do to make healthcare better for all.
My heart goes out to you and your husband. Unacceptable end of life treatment. I hope she is not involved with hospice anymore- she doesn't go that exra step when necessary- it is even obvious to lay people that this was necessary.
Specializes in Specializes in L/D, newborn, GYN, LTC, Dialysis.
I am so sorry. You are suffering greatly, remembering his suffering. It's almost like post-traumatic stress. I can't say anything that makes a difference but know my heart has gone out to you.
Specializes in Specializes in L/D, newborn, GYN, LTC, Dialysis.
PS Yes you need to come down hard, because you know that nurse will hurt someone else, too. She has NO place in hospice and I hope she does not end needing it herself, or she may come to understand how cruel she really was.
I am so sorry for your loss Viva. Even more sorry the end of life experience was so traumatic for both your husband and for yourself. I can't imagine how excruciating that must have been for you to watch him needlessly be in such pain because of the callous actions, or should I say inactions of a professional whose job was to be there when you called with whatever support your husband and yourself needed. Inexcusable!
This does not represent a full scope of the problem, to be honest, any death is tragic, the pain of waiting often ways heavier than the accelerated process, the pain carried him over, in time this will be a relief. Pain is a signal, it is the bodies call to attention, and it seemed to be calling him away. Without the assistance of hospice, death occurs, the feeling of helplessness is not another symptom to treat, it is your heart calling for attention, give it that attention.
I like to think of three other possibilities for the on call nurse, 'clearly uninterested' may draw out to be much different in her shoes,l. She could have been much further than 25 miles than you think, she could have been with a patient and had another patient who had passed away that she needed to be with first, she could have a car that can't get out of first gear, she could merely be an office nurse handling information from the office only, it just isn't clear to put blame, let alone believe that blame heals the sickness being felt.
The agency still failed to provide an admission basket of medications without adequate pain meds, this is ubiquitous amongst all hospices I've worked with. It was ill planning by the case RN to feel that at any moment of pain, hospice is prepared, elated expectations tend to be disappointing.
Specializes in LTC, assisted living, med-surg, psych.
Thank you for your perspective. I still feel the on-call nurse could have been much more helpful and less abrupt in her approach to our problem, or at the very least turfed it to someone who could actually have done something. But I do appreciate being presented with a different view of things.
Thank you for your perspective. I still feel the on-call nurse could have been much more helpful and less abrupt in her approach to our problem, or at the very least turfed it to someone who could actually have done something. But I do appreciate being presented with a different view of things.
While i agree with the others posts that it is completely unacceptable for a hospice pt in crisis to simply be told there is nothing that can be done, i too have to wonder if the problem is with the nurse or if it's actually with the agency. Having worked for a money-hungry for profit hospice i know for a fact that many agencies have an unspoken mission of "get the admit no matter what n keep them however you have to and don't spend a cent over the bare minimum. "
I agree that your experience should be reported both to the agency and possibly to your state accreditung agency. But i personally would not report the nurse to the board. I have seen hospices put one nurse on call for a 500 mile region and insist the pts be told they are within the same county, and I've seen managers tell nurses to tell their pts the exact things you were told. I've also seen agencies desperate for staff provide zero orientation leaving the nurses wholly unprepared.
If the nurse is the problem then once the agency gets your survey they can deal with it. If the agency is the problem then the nurse may make a great scapegoat for them...reporting the experience to the state without insisting the nurse be fired may at least cause the hospice to fall under scrutiny and keep it on itsits toes. Even if the nurse is at fault the agency is responsible for the actions of its employees and needs to take steps to keep this from happening again.
I had some bad experiences with hospice too, though. Like the time I called a patient's oncologist when I suspected she was having a GI bleed (she had breast cancer) and he said "What do you want me to do about it? She's a hospice patient. She's a DNR!" As if DNR meant "do not treat anything"! Or later on, when my father-in-law was admitted to hospice with his lung cancer and the nurse did such a terrible job of med teaching that his wife was basically overdosing him with his morphine. When my sister-in-law got a good look at what was going on, she called the agency and the result was a different nurse, better teaching, less morphine, and a wonderful quality of life for him for the remaining months. (The other nurse was shifted to a job not dealing with patients, at least for awhile; Pops was apparently not the only patient who'd nearly OD'd in her care.)
I have a little different perspective here. Regarding the "near OD" on pain meds, this is a huge issue in hospice care. Each pt and family falls somewhere on a spectrum between "no narcotics at all because we are afraid of him being tired or getting addicted" to "comfort by any means necessary even if he is unresponsive" to "just give him the whole bottle and end his pain for good"and there are also laws and standards of care guiding what the hospice can do. Everyone has a different opinion of how much morphine is too much for a terminal pt.
As far as the GI bleed in a cancer pt I'll say it again: DNR does not mean do not treat BUT comfort measures only CAN mean do not treat for a cure. There is a big difference between a pt who is elderly but relatively healthy and just doesn't want CPR, and a hospice pt (remember pts must be terminal with less than 6 months prognosis to go on hospice)
Many times i would hear people say "i know he is dying from dementia but i don't want him to die from pneumonia" or "if she dies from her cancer its okay but i won't have her bleed to death" not realizing that the dementia is causing the pt to aspirate constantly and thus causing the pna, or the cancer is causing low platelets or a tumor is eroding an artery and causing the bleeding. Or staff say "well we can't just watch her suffocate, we have to start bipap!" on a pt with end stage COPD who has expressed they are ready to go, is maybe blue but resting comfortably and had specifically stated they never wanted bipap again.
Not to say the poster i quoted was wrong about the specific situations mentioned. But it is so easy for people emotions and opinions to cause major bitterness about end of life care. Carefully assessing each person's beliefs and priorities along with extensive education about disease processes is absolutely critical when dealing with end of life. If time was taken to do this it could prevent so much suffering.
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Tomascz, ASN, RN
126 Posts
It's the hospice companies responsibility to see that this NEVER happens. The hospice companies policies made this situation possible. As a nurse, I have a responsibility to my patients to not only help them deal with their disease with all the tools and skill at my disposal, (sometimes under really daunting circumstances) but also to hold the company I work for accountable for their actions and omissions, just as I do myself. Its my own imperfections that most often keep me awake at night.
I know this is not a perfect world (Death itself makes that obvious), and pursuit of perfection is often a fools errand, but you have to try.
I'm really sorry for your loss. I'm glad the pain for him is over. Now its your turn to be taken care of.