Hospice Bad Experience-Update
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Charlea, thank you for that post and if you don’t mind I want to print it out to show the Director when we meet Friday at the Service. Teddy got 1 back rub..I never left his side except to grab a bite to eat for 1/2 hour. He never even got a little sponge bath. They never upped his meds. Doses he was taking were the same as when he was home. At home his pain level never exceeded a 2-3. The 3 days in Hospice it was 8 – 9.
Doses were to be given every hour and they said he had to ask for it. I was shocked. In his condition how could he remember that? That was their job! And then the last day he was spewing bile and they would only give him something for nausea every 6 hours. As God is my witness I am not exagerating, my daughter witnessed it as did our clergy who stopped to see him. The Doctor was gone over that weekend and when she returned she sat there, the day he passed, and asked him about himself like what kinds of things did he like to do!
It was like a horrible movie except that we were in it. I am trying so hard to give it up so I can remember the precious moments but guess its still a little too fresh. Sorry everyone, but I know that soon I will be able to stop talking about it. Perhaps after I meet with the Director of Hospice.I found your comments about Teddy’s hospice experience so disconcerting that I just had to respond. I am a Family Nurse Practitioner with 30 years experience. One of the most important issues we addressed was pain control. We were required to have so many hours of pain management education, particularly when I moved from a hospital to a clinic setting. One of the most critical elements is that the physicians who oversee hospice have to believe that pain control, not dosing is the issue. I once had a patient who was receiving 1200 mg morphine per hour! No one was afraid to give these massive doses because the patient needed it. All other comfort measures were employed too, back rubs, cooling measures if there was fever, keeping the patient clean and dry. My philosophy was that I would care for patients the same way I would want my family treated. There are so many more pain relief options now than there were when I was in the hospital setting and there is no excuse for what Teddy went through. Perhaps we need to look at the training those hospice nurses were receiving. I cannot imagine not giving a patient pain meds because he couldn’t ask for them. People in pain demonstrate all kinds of behavior that an astute nurse would pick up on.
I have three friends who have Stage IV cancers, one of whom just entered hospice care this week so I will make a determined effort to go to her facility and see for myself if what I have believed is true about our care in my area.
We have especially strong Home Health nurses who take care of patients who choose to stay home for their last days. They are also the ones who teach the pain management classes so there is close observation of nursing practices.
I pray for all of you who will rely on these caregivers. Research what they will and won’t do and how it is done. Go to the top if you feel you or your loved one isn’t getting the best care. You and they deserve it. Your family doctor should be an advocate too. My blessings to all of you who must look at this end of life decision making. There are some superb places and some wonderful nurses who can help you maintain your dignity. Ask questions at cancer support groups or discuss pain issues with your oncologist and family doctor before you need them.Yea, that nurse had a twin and she was in the room moments later. They were too much for me. My dad didn’t want me to fuss about it. He couldn’t remember the night from you know what. I actually became annoyed with my dad in the end because he was charming to the twins for the rest of his hospitalization. Go figure.
So what Susan Levine said about Teddy’s care is a contradiction. ( what they did wasn’t right but they were following policy.) I wonder how often she is there? She should have spoken to her staff before calling you, in my opinion.
Sounds like she has some housekeeping to do. It is really aggravating that she would say the hospital couldn’t have done more. Is this to help establish, in her mind, that her faculty did enough? To me this shows the low expectations she has for her staff and faculty. This shouldn’t be acceptable and I believe it will really bother her.
You did the very best you could do. You didn’t have any time to correct the situation. Everything happened so fast. Most importantly, you were all there for
Teddy. And he knew it. I will be thinking of you and your family this week.Pam, so help me, if I could have done something I would have…with Teddy’s pain meds. Susan said, what they did was not right in what they told me, however they were following orders”. She also said she was going to look in to what they said to me. I am sure they will admit to it! Yeah, right! She said the hospital could not have done anymore. But, I have a feeling they would have been there every hour without his asking! We have to go on. I know Teddy would have said to me, “Fah gid aboud it,now”. I will in time. By the way I would have reported that nurse that said that to you!
Lainy, Yes, his pump was preset so I have no idea why I was chewed out for pressing it. A overdose is what the nurse lectured me about. When patients are helpless, there is no way they can administer pain medication or ask for it. To me, my dad was ignored and too much was asked from him when he was so sick. My experience is still strong with me but gets better with time. Hope i didn’t offend. I try to stay positive about everything my dad went through. Some emotions are still there.
Your Teddy was not taken care of in the pain department by Hospice. Like Kathy, i am really bothered that Susan Levine said her faculty did a good job.
You are a very big person to allow her to attend Teddy’s services. You are a
wise, beautiful lady inside and out. PamI would think guidelines would be the same, but it seems every hospice has their own set. I had a friend who was a nurse who formerly lived out of state and worked for hospice. She told me morphine was given as needed to control pain, even though the amount would be classified as an overdose. She said they just never talked about it. This is how I would personally want it.
I do have a strong suggested for all hospice organizations: Ask if the person has a defibrillator. My dad had in home hospice for two or three days before he passed away. This is an implant that shocks a person if their heart stops. The battery for dad’s defibrillator should have been dead. It would have been an easy check and an easy turn off. The night before Dad actually died, he tried to die and the defibrillator kept shocking him. It was horrible. An ambulance had to come and take him to the hospital where we waited for the rep to come and turn it off permanently.
I’m really glad you called Susan Levine, Lainy, but it really bothers me that she thinks they did a good job. They did not. What are their guidelines? Did they follow them? I understand she is probably trying to protect her organization. I hope she is not just smoozing you so you won’t stir up anything.
Your precious memories are still there and they will overrule the others. Sometimes it takes a little time. You made the best decision with the information you had.
Kathy
Pam, Teddy didn’t have a pump, they were supposed to hcome every hour and give him the RX under his tongue. They did not come becasue he did not ask, he couldn’t. Say, I thought with a pump you could pump it all night long and it would not dispense until iut was supposed to. You know, preset. Like I said since it was the end I would have kept pumping it for Teddy and I mean that.
Each day gets a fraction better and I know eventually it will not be consuming me but not forgotton. Now I am gearing up for the service Friday.Lainy – I am so glad that Susan Levine listened to you. I am even more glad that she will see at the memorial service what amazing people you and Teddy are. Maybe that will move her more to make sure that in hospice people are kept comfortable and cared for with the same love they would want for their own family. I think this could be a great opportunity, plus maybe there will be an opportunity for her to learn more about cc and possibly use her influence to spread the word. I miss you, my friend. Blessings, Susan
Lainy, I had an experience somewhat like your Teddy. My dad had an attempted resection in June. The night he came out of surgery they put him in a regular room. He should have been in ICU. They gave him a pain button to press. He had no idea where his nose was. The pain was unbearable. He would have spasms that brought him ached off the bed. I spent the night pressing his pain button and begging for extra medication that they brought hours later. After a night of no sleep, I told the nurse, that had just come on duty, about our night. I was promptly told that I should not have hit the pain button! And that I shouldn’t do it anymore. I just couldn’t believe it. She said I could have overdosed him on the morphine if he was not in pain and that he would have to push it if he had pain. Still don’t understand that experience. Sorry to say, I sometimes believe nursing has become more about paperwork and less about realistic patient care. Sorry if I offend anyone in the medical profession. I hope all this can be resolved for you. I’m glad you are donating Teddy’s things. We will be doing the same in February with my dad’s stuff.
I drove Teddy to Hospice 1 weeks ago yesterday. There were a few things that happened there that I don’t wish to see happen to anyone else. Like….Teddy was supposed to get his pain meds every hour but the weekend nurses said he had to ask for them! Can you imgaine????? How is some who is dying supposed to remember to ask hourly for pain meds. Then when he was spewing bile I asked if he could have some more nausea meds and they said he would have to wait 6 hours since he just had some. I almost blew a gasket but they didn’t care! This has bothered and bothered me so, Wednesday night I wrote a note to Susan Levine who was married to Barry Goldwater our esteemed Senator from Arizona. Susan is the CEO/President of Hospice here. She called me the next morning and we talked 1/2 hour. While she felt he got good care she admitted some of these things were not right and she would look in to it. Then of all things she asked to come to the Service Friday. I was dumbfounded. She said she had this compelling feeling to meet me. So we shall see that happens. Now I am spending time trying to push back what happened but it was not a peaceful death with dignity! I worked so hard to have my Precious Memories and I feel they stole them from me. But I can’t let that continue, I want my precious memories of the last 5 months. There is a little clinic in Mexico that runs on help from Hospice patients donations in the way of equipment and medicines. I sent a van load to them. When the kids come in next week and the service is over, I will have them go through Teddy’s clothes as he already gave them the importnat stuff. What ever is left will go to a Mission downtown Phoenix where they really need clothes. So Teddy is still giving. I told a friend today that if they ever see a homeless person asking for money and he is wearing a sharp suit know that it was Teddy’s.
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