Was my Step-dad's life taken prematurly, or was hospice aiding in the dying process?
My stepdad has small cell lung cancer. He had three chemo's, then developed an enlarged prostate and a very bad UTI. Required a catheter/ foley. Was in a re-hab to help gain strength, doing therapy but having semi conscious bouts. He would come out of it and be as normal as could be. He went to a better re hab and was doing great with therapy. He was expecting to get stronger and do more chemo's to keep the cancer at bay for awhile. In the new rehab he got the UTI back and went back into a semi conscious state that made him sleep, but when spoken to he heard every word. He would come in and out of it as if it were a light switch. They sent him to the hosp when he went semiconscious and the GP attending Dr told my mom "he has cancer so why prolong things, send him to Hospice" Remember this man was doing physical therapy two days earlier and doing great. At the hosp they took MRI of brain and the cancer had NOT spread to the brain, and his lung cancer had not changed/enlarged, in fact it got smaller. Hospice discontinued the antibiotics for the UTI, and stopped hydration. He kept waking and had lucid times, the semi concious times are as one would expect from an elderly man with a bad UTI. They were making him die rather then helping him die from the cancer. I have a real problem with that. It made it very hard for my mom who was very confused and just wanted to make sure he did not suffer. I agree with helping people die , if they are dying. He was surely going to die at some point from the cancer, and at that time it would be the right thing to help him die without pain. Not make him die, because eventually the cancer would take him. There is a fine line and Hospice needs to make sure they know where that is. In this case I was deeply affected by their decision to stop hydration as a means to end his life.
My first husband and my mother both died from cancer. One from brain cancer and the other of ovarian cancer.
Your story is very sad, and it sounds like you loved your father very much, but there is just not enough information to go by.
Here where I live, you cannot get into Hospice unless you are diagnosed as having 6 months or less to live. As you say, your father was going to die from the cancer, and so it seems that he had been diagnosed as having 6 months or less - or Hospice would not have taken him into their care.
It is very difficult to watch a loved one die from cancer. You want to help them, but often times what we think is helping is actually causing more discomfort. Trying to feed and exercise a dying patient is not helping them.
There comes a time in the dying process where the patient stops eating and drinking, and this is normal and actually can help cut down on the pain they may be feeling. It is the bodies normal way of shutting down.
I am so sorry that you lost your father. You miss him I am sure. Know that he is now out of pain, and that as a family member left behind, you will always have those thoughts of "could I have done something more - or better" for him? There is no way of knowing. You did the best you could.
Thank you. I understand the dying process. He was not in the dying process and that is where my problems lies. He was eating when he was awake. He needed the UTI cleared up and he ad a shot at living a little longer and possibly going back home where he very much wanted to be. My problem is that Hospice took him before he was in the active dying stage. Who knows how much more time he had? Could have been another 18 months, but hey were his months to have. If he had been in pain from the cancer, if it had spread, if he was at the start of the real dying process, then yes, help him go peacefully. Do not rob him of precious time that he could have had.
It is the choice of the family to continue hospice or focus on aggressive care. I am saddened that you are focusing on the hospice. I work for hospice and hospice does not do anything to hasten death. Some families choose to to keep their loved ones on artificial life support until the money or the body runs out.Others decide that if a person is not able to survive on their own they will allow the natural events to unfold. A family runs the show with hospice. Hospice guides the family with their professional knowledge. At the end of the day the family decides if they are unhappy with the direction the care is going and they determine where things go. It is uncertain what the course would have been if you had decided to continue aggressive care. The what ifs will drive you crazy. My advice is to focus on the wonderful man your father was and attend bereavement groups to help yourself heal. Your father has found peace. My prayer for you is that you may too.
I too know, all the good Hospice does for many, as I have always been a supporter, and supporter at the legislative level. But I am saddened that you are not seeing the difference in what Hospice is supposed to do, and what I am telling you they did. Perhaps because you work for a Hospice that does it right, it is hard for you to see the distinction in what I have written. A man that has an elderly wife, who is exhausted, scared, and wants the best for her husband, will take the advice of a Hospice Dr, who had a total of three minutes with the man. One who had no clue that while the man had cancer, it was a UTI, and not the cancer he was being affected by. Any one who even Google's "the elderly and UTI's" will get the answer of how that effects a elderly person. They just felt that since he had cancer, and he was going to die from it at some point, just stop all hydration, food, and give him morphine. There is the danger to all the good Hospice's, they have become too comfortable (too regular) with what they do and jeopardize Hospice as a whole. It was not what should happen. Hospice is to help those that are in the dying process, die comfortably and with dignity, not hasten their death as was done in this case. That should frighten you, and all of us.
By the way, the leg pains/cramps he was getting, had nothing to do with cancer, but had everything to do with being dehydrated. It was for those pains that they started the morphine, and more morphine... He woke up during one night and wanted to eat a steak, he got a plastic cup of pudding. His last meal. Then more morphine.
Without being there myself it is hard to comment. I often hear families express concerns that hospice assisted someone pass sooner. Morphine helps with pain and does not assist in someones death (many people fear hospice kills people with Morphine but you get Morphine after many surgeries). Artificial hydration mereley prolongs life and stopping an IV of saline will not cause someone to die. It is unfortunate that the doctors allowed you to focus on comfort care as opposed to the aggressive treatment you seem to now regret you did not have. I wonder if you would be frustrated about how that path would have went. I have seen people regret that direction as well. Hospice is a Medicare benifit and you do not qualify for hospice in the hospital unless the doctor feels you will die within a week. I am so sorry you lost your father. Keep processing your feelings as this is a very helpful step on the road to your healing. You can be mad at hospice....Hospice can take it. Be well.
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Hi NancyArc, I too am very sorry for your loss. There are certainly some questions that need to be answered here.
Yes, I believe you are correct that what can be done/is being done with hospice can be a fine line. In the right situation I would choose hospice...if I was in severe pain and wanted some relief during my last days. Unfortunately hospice seems to be the sacred cow in the healthcare field - they do not like their care being questioned. We need to remember there are good and not-so-good hospices.
We DO need to question some of these techniques. It is our right, our duty and our responsibility to know what goes on. More people need to be aware of what is going on in the name of "comfort" and "symptom management". You do realize I'm sure that there are a LOT of $$ at stake here..... None of the hospices want to lose their funding.
My Dad died in a hospice facility within 36 hours. All of our questions have not been answered yet. When he arrived (for a RESPITE only) he was in a chair eating cereal and milk. He loved to eat. They were ONLY supposed to take care of his daily needs. We made them PROMISE NO morphine would be given..they said it would not be (he was NEVER in ANY pain!). Within a couple of hours of his arrival he was being sedated by doses of morphine and 5 other drugs!! NONE of this was with his permission nor with my Mom's permission (she was his MPOA). During this time they also withheld all food and drink (to a hungry man). Does that seem compassionate? They try to justify it with "he was actively dying" anyway, which was not the case when we dropped him off.
We did not find all this out until we asked for and received the medical records. You may want to check out your step-dad's records (unless they have been tampered with which can happen). He may have had more than just the morphine....as hospice has their standard meds that can be given to most people based on their "symptoms". Maybe he also had Haldol, Atropine, Scopolamine patch, Robinul injection, Ativan (for anxiety they say). That is what was given to my Dad who had NO pain when he arrived.
In case you wish to access more information on this subject there are many websites you can check out. One website that can ofer a wealth of information is -- hospicepatients.org. Their desire is to preserve the ORIGINAL mission of hospice which started out very good.
I came across this quote "A decision to permit health-care facilities to deny food and fluids to patients who are CAPABLE OF RECEIVING THEM, directly attacks the very foundation of medicine as an ethical profession".
Also check out an article from the New York Times dated 12/27/2009 -- "Hard Choice for a Comfortable Death: Sedation". A long article, but the last sentence is revealing.
Yes, as you write NancyArc, this should definitely frighten us! Each breath, each second is a gift from God...and not to be hastened in any way.
Sat., March 30, 2013 To SPurgeon: well articulated. Even though many questions are asked, it does not take long for a vulnerable person to die from supposed negligence. It happens very quick. To NancyArg, I am so sorry for the premature loss of your beloved step-dad. I feel for you, as I too, had a dad that was robbed from months of his life except he was not in hospice care, but in a hospital. As in all areas of life, there is good care, governed by ethics, knowledge correctly applied, sensibility, humility, just as there is the opposite. For the first time, I had witnessed arrogance from a few medical professionals and they were wrong. You and I know that there was a possibility of some negligence and a possible attitude of "what's the point of prolonging his life, he's old and dying anyways, why waste valuable resources." it s true that not all deaths are the same. Yet, to suggest to 'focus on the wonderful man he was and to attend bereavement groups' indicates to me me that the person, although meaning well, has not walked in our shoes and invalidates what we feel and know. Unfortunately for me, I doubt i will ever trust fully any institution or professional caring for my loved ones, as I had once. It is what it is.
My heart goes out to you. I have been struggling with similar questions regarding my fathers recent death and know how troubling these feelings are. I think the hospice has guidelines that probably did help our fathers to have more peaceful passing but the implementation is by humans and not regulated or monitored. It is in the implementation that they may have hastened their deaths by hours, days or months. Once the decision is made to administer morphine every 3-4 hours, the path is really determined. It does decrease the respiration rate and if it continues to fall with each dose, eventually it will be suppressed below the point that can sustain life. The guideline may be to not administer morphine when the respiration rate is below 10 but the reality is that the meds are administered by humans that watch death occur every day. In many cases, I do fear that our loved ones are actually dying from the respiration side effect of the morphine but it is painless and if the alternative involved suffering I can't say I made the wrong choice when I decided to remaining silent as it occurred. It is just a struggle I have to deal with now.
I am so very sorry for your loss and your turmoil. I do work for hospice, but 90% of my nursing career has been in the OR, where we would do anything to save a life. I now focus my nursing skills on helping with dignity at the end of life. Speaking for my colleagues, I can say we DO NOT actively seek death for our patients. Our job is to have them be comfortable and have their needs/wishes met until their last moments. We want all our patients to have as good a death as possible: one that is peaceful, pain-free and with loved ones by their side. I have seen many patients change in the days after signing onto hospice. It is as if they have been given the "ok" by their family to relax and let it all go. They stop eating, stop drinking fluids, withdraw, and admit to pain that they may have had for months/years but 'didn't want to trouble anybody' by saying they hurt or were tired. Morphine does not hasten death. it is given to relieve symptoms of pain and/or shortness of breath. It has side effects of reducing anxiety and slowing breathing. We do not give morphine to 'speed things along'. There are patients with cancer and other painful terminal diagnoses that take levels of pain meds that would be staggering for us basically healthy people. Remember, as hard as it is, your family member is in the process of actively dying, and they are in pain. Dependence is not a concern. Our job is to lessen the pain as best we can and strive for a good death for your loved one.
Thank you. Morphine helps many. I understand that . It also fogs their brain thus if they are not in the dying process and make the decision to get fluids or not is really out of their hands. While morphine may not hasten death, dehydration does. Death is the most personal experience, and it is a fine line to help people die with dignity and no pain, yet also allow them to make that decision of when to start that dying process if they are capable. Not he Drs who just met him and convinces my mom that he is going to die anyway so just withhold the water now. That wasn't her call, It only made it harder on my mom who of course didn't want him to suffer. But he was still capable of making that decision as to when that would/should start as soon as they cleared up the UTI. I appreciate what you do and hope you understand what I am really saying.
It's so interesting to me that I did a search on hospice deaths and found these very recent posts addressing a concern that I have regarding my own father and hospice. I feel that it was right for my father to enter hospice as he also had small cell lung cancer which had spread to his bones and had progressed to the point that treatment was no longer viable. However, he was very alert, eating and drinking up to the point that he began morphine--which was certainly when he lost interest in food and became less and less able to communicate with those around him. I struggle so much with the day he died and fear that he suffered because his breathing had become so labored because of the morphine, and yet he still fought to live. He was a fighter. I think the main point is that I live with a certain amount of guilt that I didn't step in to do more-I let hospice and my step mother control many of the decisions where I could have possibly done more to help my father. Or could I have? I'll never know, and I think that's my burden now. I relive those last days but it's too late now. Our loved ones are gone, and yes, they are at peace. I just wish I knew for sure that what happened there was right. Could he have enjoyed another dish of ice cream or talked to me one last time? He had so much to say before the morphine. It's just so hard now to relive these moments and feel the loss. My father died at the beginning of September. My deep condolences to the original poster. I have so much empathy for that situation and the feelings of helplessness that go with it.
I so share the same pain. My dad was diagnosised in May with slow growing pancreatic cancer that had spread to his liver. They then told him without any treatment he would have 12 months but withthe seeds i planted intot he liver he could live for 10 + yrs. Surgery was scheduled but Due to a blood clot and low blood pressure he was unable to have the seeds administered into the liver. In September my dad decided that he was not going to get the seeds. The Dr. at that point said that he would have 4 months left. They wanted to send hopsice in to check in on him once a week to see how he was doing and they would at that point prepare my mother for what would take place in months to follow. To be a comfort to her. Hopice came in 4 days later. 8:30 p.m. that night they arrived at 11:30 p.m. they were bringing in hospital bed, rearranging the whole house like bull in a china shop. Talked to me about the meds kit. what they were going to do. ONCE A WEEK! come in. That night my dad was playing his guitar, singing, talking with family not eating alot but nibbling. He asked for something to help him sleep. Nurse said to give him anxiety meds that was in the kit. He was up all night, talking, laughing, etc.. The next day, his assigned nurse came in, did an assessment if that is what you what you want to call it. Checked his temp, BP and that was it. He was tired but he had been up all night. Told her what happened with the anxiety meds and she said to give him haliparinal.(SP) and 0.2 morphine. I asked her why morphine he was not in any pain. She stated that will help him sleep. Me not being a nurse and relying on HOSPICE CARE because they are the best. Gave it to him. The next day,(Sat) he could talk but couldnt get out of bed. I called hopice and told them of his behavior and that when I took him to the restroom he had blood in his urine. The oncall nurse came out, ordered his meds, told us not to give him any of his regular meds. Put in a foley because we could not get him to the restroom anymore and the bed pan was not working. Said to give him the haloparinol and the morphine every 3 to 4 hrs. I again asked WHY? he is not in any pain. Again she stated it will help him rest and comfortable, I told her how much more comfortable you want him he is comfortable. I knew deep inside something was wrong with this. So did my family, now I know this. I being his daughter called the hopsice line and expressed my concerns and that I felt like this was killing him. She stated alot of families feel this way but that morphine wont kill him, we like to make them comfortable, give it to him every 3 to 4 hrs. or I can wait every 5 hrs if it makes me feel better. this is on Sun) night. I cringed everytime i gave it to hima nd told him daddy I am so sorry, but they tell me to give it to you. By Sunday he was not waking up at all but he could hear me and he would knod his head when I asked him if he was in pain or thirsty. He would tell me no. At that point I was not going to give him anymore it was killing me nside. My mom thought he was in pain because the nurse said to give it to him. For over twelve hrs I pretended to give it to him so my mom would be more at ease. Everytime i called for the nurse she always asked yes he is dying. and asked if I felt she needed to come out. I said to her, your the nurse you tell me if you feel you should I have told you his behavior and signs he is showing. I asked her to come and speak a comforting word to my mother and inform her of what is going on. (that is what she was suppose to be there to do according to the dr and hospice) long story short she came out never looked at my dad to assess him, sit at the table filled out paperwork, got ready to leave, I asked if she could talk with my mom and she stood up and said, i dont know what to tell you, except he is dying. Well, three days ago he had 2 to 4 months. At this point he stopped eating and drinking. Tuesday I called her back to tell her about his breathing getting shallow. she said give him morphine every 2 hrs with hali and i had to at this point. Wed morning, i called to tell her about his breathing and secretions she stated give him morphine he is inthe last stage, call me when its finished. Yes "CALL ME WHEN IT"S FINISHED". at 1:54 pm my dad passed and it was not at peace, he struggled and it wasnt cancer he died from, he choked on his own blood and it was not pretty. I called her at 1:54 p.m. she got there over an hr later walked in set at the table filled out paperwork got up emptied the meds in a chuck and put it in the trash and said I have to check your dad, checked his pulse and said he is gone. (REALLY!) she then said that she was leaving. I asked her if she could at least take out the foley, she didint even know he had one. She said to me I need scissors and gloves. I told her we used the last ones we bought because they never gave us anything but bed chucks that came in the night before he passed. I told her she would have to go out to her car and get he own. We had to bathe him, dress him. which we didnt mind doing that he afterall was my daddy. So you tell me! how does a man go from 2 to 4 months eating, drinking, laughing, playing guiter and singing on Thursday to passing on Wed. There are so many details that just dont add up. I will not let this rest. I had to make three calls to get the hospital bed out of my mothers living room, he passed on Wed they got the bed on Sat right before the memorial service. The nurse never called that in to be picked up. I cant' believe this is the way HOSPICE works, I went to hopice and had a face to face meeting about this and they also agreed this was not there protocal and he didnt go peacfully and that the nurse should have been there. I SHOULD HAVE NEVER HAD TO BE HIS NURSE< I NEEDED TO BE HIS DAUGHTER, they cannot give that back to me. Admission from the hospice coordinator, the nurse does not give instructions to administer meds without a script from the Dr. quess what, she never called his Dr. or the hospice Dr to get it. I don't want this to happen to anyone else. This nurse needs to go...... I cannot rest. This nurse in my opinion took my dads life to early and used me to do it. I have to live with that for the rest of my life. Hali and morphine should have never been given to him that early in diagnosis he was never in any pain til the end and that is when he needed it. So what do I do?
I truly believe hospice hastened my motherinlaw's death. She had CHF and was sick but wasn't ready to go. She wanted to get out of bed but was a fall risk. After trying without permission to get out of bed they gave her a large dose of haldol 24/7 along with morphine. She didn't have the strength or wits about her to eat or drink because she was over sedated, She struggled for about three weeks & died.
That's the problem I have encountered. In many ways Hospice is a great place when death is coming fast. But to take ones life before it is ready to go, is a problem for me. Now the for Profit Hospices make me worry even more.
I know that blaming the Hospice for hastening someones death is a taboo subject but by law it is not allowed to happen. I have a similar story of my father- in- law who was at stage 3c with Mesothelioma and having just been for a cordotomy to cut the nerves to help his pain was recovering in the Hospice where understandably they would reduce his pain killers and change his medication accordingly, however he never came out and died almost a week later. That morning of the 19th February 2016 my mother in law had a phone call from the hospice saying that he was extremely ill and they were very concerned and we needed to get there quickly. Myself and my husband quickly got up to the Hospice ahead of everyone else and as we walked into his room his was sat peacefully in his bed at to which point he turned and looked at us both saying "Oh, You're both here are you?". we entered the room and saw his breakfast and beaker of tea on the tray but pushed away from his bed, the nurse quickly followed us in almost as we arrivednand shouted to my father in law "Have you not finished that breakfast yet Jack?", I couldn't see a dying man, my husband (his son) took his breakfast and started to feed him and Jack took the spoon off him and ate a full bowl of weetabix and had a sup of tea, at that point 2 nurses rushed in and went to give him an injection, Jack fully aware of what was going on asked the nurse what the injection was for and they said it was because he was extremely agitated and that he couldn't take his meds orally ( bearing in mind he'd just eaten a full bowl of weetabix was just sat relaxed in his bed). My husband and I where than taken out of the room just as the injection was given to discuss Jack with the Doctor and were taken to a quiet room to talk about how he'd been, as to which point Jacks wife and daughter then arrived, lisa (the daughter) had managed to go into the room and Jack had grabbed hold of her arm and said "I'm dying li"', not being able to get her full name out before he was knocked out. On having a conversation with the Doctor about how he'd had a bad night etc and her telling us he was deteriorating we then returned to the room to find him heavily sedated and not responding to anything or anyone, he'd been given 6.25mg of Levomepromazine in that injection which made him look like he was dying and then 2 hours later they put in a syringe driver of oxycodone, levomepromazine and midazolam and 24 hours later he was dead, his last moments included him sitting up and opening his eyes whilst he gasped for his last breath and then gone, not a peaceful death at all. How can he be sat having his breakfast one minute and then given an injection and gone the next???? doesn't make sense at all.. how can they say he wasn't taking his medication orally when he'd just eaten his breakfast and had a drink of tea??? why did they tell us he was dying when he was sat in bed talking to us and just before his wife came to see him, they sedated him?? Please if your a hospice nurse tell me if this is right or does this need investigation because it really is interrupting our grieving knowing what we saw and having no answers.
Hello Nancy, Just from what your saying sounds like your dad had a similar experience to my moms, with different causes. My mom went into the ER with fractured tibia, it was non displaced so Doctor decided surgery not required , but they kept her to monitor her acce
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