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.
I am so sorry for your loss of someone you loved for so many years, and for the terrible pain that you and your husband had to go through. It wasn't right or fair at all and I am so sorry. If it's OK I will keep you in my prayers. I wish I could say something better to help but I know no words mean much at a time like this. ((((huge hugs.))))
Specializes in pedi, pedi psych,dd, school ,home health.
(((Viva)))
Have not been on in quite a while... so so sorry to hear of your tremendous loss. I pray that this nurse was reprimanded, and learned a harsh lesson on how NOT to be.
I scrolled through several of the responses here and didn't see anything about how the nurse in question should have been dealt with. After such a horrifying experience, many don't want to have to deal with the issue of why it went so horribly wrong but I would all but beg them to. Otherwise that same nurse will continue with their inappropriate behaviors. Was there a complaint filed with the hospice agency and if so what was the outcome? If that isn't satisfactory then report them to their board. No matter what the outcome that nurse's life will be very uncomfortable after such a complaint is filed. In a situation like this it would not phase me in the least to know that the nurse in question was either terminated or disciplined by the nursing board, or both. Sorry, just the way it is.
I'm so sorry for what you and your family went through and that your experience with hospice, instead of easing some of the difficulties and pain of your family's last hours together made them that much more difficult.
It is heart wrenching to read your words and I'm sure even more difficult for you to relive these hours in sharing them with us but know that your story will stay with your many allnurses friends and remind each of us to see the situation thru our patients's/ family's eyes and go that extra mile.
Specializes in Peds/outpatient FP,derm,allergy/private duty.
VivaLasViejas said:
You know, I've thought about taking this thing up a level or two, but I'm so worn out from all the festivities of the past three months that I just don't have the "oomph" to get ugly about it. All I want to do is heal as much as possible and move on with my life. I'm a long way from that, so I don't want to rehash it with the hospice agency and deal with that acute pain. I told my grief counselor about it, and she was more than willing to report what happened. She was appalled. Of course, I'll never know if that nurse was disciplined, but it's easier for me to believe she was. ?
I hope so, too. It sounds like aside from this one nurse, telling a person in a pain crisis they don't want to make the drive, and essentially seeking to block your options when advising you not to call 911, is the opposite of the philosophy and support given by the other employees there.
Either she isn't sharing that positive culture or she doesn't understand that dying people can have emergencies, too. A different type, but no less acute.
I had a friend call me freaking out as her boyfriend's mother was actively dying, in acute pain and respiratory distress, and the hospice nurse was there at the time, refusing to give the drugs she needed. She was so disturbed by what she was witnessing she called the only nurse she knew. I provided a sounding board at least.
It seems there is a lack of accurate knowledge within hospice itself. I should add that my mom's hospice team was wonderful, so it's a matter of varying approach from one agency to the next.
Anything you may choose to do (or not) can wait until you feel it's right. Here's more (((hugs))
I think a scary thing is the number of nurses we read about who choose hospice due to lack of other options or simply to escape inpatient bedside care looking for something less physically taxing and stressful. On top of the existence of profit driven hospice agencies. That's a bad recipe.
I'm so sorry you went through this. I can't imagine. Shame on that nurse, who should have provided compassionate care. No one should ever be in pain, especially at the end of life. Thank you for sharing your story.
Specializes in MICU/CCU, SD, home health, neo, travel.
Viva, I am so, so sorry you went through this, and I second the response of so many that you should, when you are able (and if you have not already done so) REPORT this nurse to the agency and to the state board of nursing for her dereliction of duty. Her behavior was inexcusable and she should be disciplined.
I was in home health many years ago before hospice was a separate entity, and we generally each had a hospice patient, or two or three, on our teams back then. We did receive some training from the local hospice organization, which was a primarily volunteer organization at the time, and it was most helpful. Then we trained each other. I received excellent training from my preceptor, who was a pastor's wife. I remember my first hospice patient as if it was yesterday. He was a Baptist minister, twelve days older than my younger brother, who has always been healthy until he was diagnosed with colorectal cancer. I admitted him on a Friday afternoon and we had a lovely long talk, saw him Saturday when he was quiet and introspective, and was called to the house Sunday morning by his frantic wife who was screaming that he couldn't breathe. When I got there I could tell that he was in serious distress and I made him as comfortable as I could, gave him what medication was on hand (we didn't have emergency boxes at that time) and adjusted his oxygen. When he was reasonably comfortable and able to talk I asked him if he wanted to stay home or go to the hospital. He was quite rational by then although still very short of breath, and after thinking it over he said he thought it would be better for everyone if he went to the hospital, so I called EMS. I stayed until they arrived, and just before they took him into the ambulance, he stopped them and motioned for me to come over. He was so very short of breath, but very calm, and he held my hand and gave me a blessing. Then they took him into the ambulance, his wife and daughters all hugged me, and I left. When I called the house later that day to check on things, the older daughter told me he had died. I have never forgotten him, and I totally believe that blessing made me more conscious of how I treated terminal and dying patients from then on.
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 work in LTC and so see a lot of residents working with the two hospice organizations in my area. I know which one I'll be pushing for when my Dad (stage 4 lung) needs it.
My grandmother, in another state, was on hospice when her cancer was diagnosed; Grandma wanted to be at home and there were several family members available to help--specifically my Mom, who flew down to stay with them until the end, and 2 aunts, all eager to help and willing to do whatever was needed. The hospice company did provide pain meds and a CNA came out weekly to give Grandma a bath and supply some briefs, but they gave my family no education on how to care for Grandma--no information about pericare (she had a foley and rectal bleeding d/t mets into the colon), no education on how to position her for comfort, no training on how to use a turn sheet; they provided a nice mattress cover that circulated pressure and so told my family that there was no reason to turn her. After my Mom's third phone call to me, in tears, asking how they were supposed give her care, I took time off of both jobs, flew out there and joined the care crew. As soon as I walked in the door, they all breathed a sigh of relief and jumped in to learn how to take care of Grandma. When I got there, she had untreated thrush and 2 stage 2 pressure ulcers on her buttocks. The ulcers never healed, of course, but they didn't progress either because we did turn her. The hospice didn't provide much in the way of pericare products and with Grandma passing blood, she needed more; before I got there, Mom and my aunts were cleaning her with wash cloths and soapy water once a day, because Grandma was too embarrassed to let them do more and they didn't know to insist on it, so I went out and found and bought the gloves, foams and wipes and after talking some with Grandma, she let us do more. The hospice nurse talked to the family about the dying process, describing cheyne-stoking but not the death rattle, so when Grandma started in on that, they were unprepared and horrified. It was, over all, a very poor experience with that hospice. I was just glad that I was able to get there to help show my family what to do. It wasn't that they were stupid or unwilling to get in and do stuff, they just had no experience with it and didn't know what to do. It made my heart hurt for other families going through the same situation without a nurse (or CNA) in the family to show them what to do.
I am an on call Nurse with a Hospice , I do not understand why this happened and I hope that it never happens again. Our job is to be there for the patient and family and there was no excuse that I can come up with that would be sufficient, there was NO excuse ! This nurse should have called another nurse to deal with it if she was unable to. I am so sorry for this family and that poor man that needed help at a dire time in his journey....
Reading the different experiences that indicate suffering and too much stress at the end-of-life makes me very sad.
When the hospice movement started it was a grass-root movement with the mission to prevent suffering and too much stress for patients and families. Unfortunately, there are many hospice companies out there now that are focusing on revenue in a way that it interferes with the mission of hospice care.
When I worked for home hospice and as a liaison we worked according to our mission and had the support of leadership, an amazing medical director, great coworkers who were knowledgeable and effective in symptom control. Sometimes the writing is on the wall that a family or patient is not able to stay at home due to symptoms or family stress/ inability to care and it those cases we would take immediate action from respite care to transfers into a facility.
Now in the hospital it is also one of my jobs to make sure that patients I see and families get considered for the right hospice setting. Not everybody can go home with hospice or should. And I see home hospice fail - not often - but often enough with patients coming to the ER in distress. Sometimes the symptom burden and stress is more than home hospice can accomplish and we help to manage the acuity and find a better setting. When I talk to hospice agencies to find out what happened, they do not always give me an answer that makes sense.
I think it is unethical to admit a patient to a hospice service when it is clear that they cannot meet the needs. I turned down hospice admissions as a liaison because I knew that the patient would fail at home and would be best served and comfortable in a hospice house, even though that meant to turn down the admission. Ultimately, it is about what is best for the patient.
There are cases where I refer to a hospice agency that has a hospice house because I know right from the get go that this patient will not be able to stay at home for the last days but may be able to start with home hospice. I am very clear when I talk to patients and families and will say that due to this and that I am worried about care and symptom control and why I recommend home hospice, hospice house, hospice in a nursing home, or inpatient hospice.
There are times when I will say that a patient cannot go home with hospice because they have failed at home, came to the hospital, and now want to go back home to honor the patient's wish.
It is very sad that the care at the end of life is not as good as it could be. Home hospice is a huge responsibility and includes to foresee problems and to have a plan in place for those events.
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perfectbluebuildings, BSN, RN
1,016 Posts
I am so sorry for your loss of someone you loved for so many years, and for the terrible pain that you and your husband had to go through. It wasn't right or fair at all and I am so sorry. If it's OK I will keep you in my prayers. I wish I could say something better to help but I know no words mean much at a time like this. ((((huge hugs.))))